Since 2018, Berkshire Eagle photojournalist Gillian Jones has been writing a monthly column about her experiences with caregiving for her beloved mother, Rita, who suffered from dementia and passed away in 2021. From the struggles of caregiving, and holding down a full time job to slowing watching her mother lose her memories and become more impaired, Jones has shared her deeply personal experience, exclusively, with the subscribers of The Berkshire Eagle.
Since her mother's death, she continues to write about various topics including grieving, elder issues, hope, family dynamics, and living without her mother, a single mom who raised Jones and her brother, Jonathan, in Williamstown.
Throughout her caregiving journey, Jones used her cellphone camera to document her daily experiences with her mother. From her numerous stays in hospitals and nursing homes, doctor's appointments, home care with professional caregivers at her home in North Adams and her mother's home in Williamstown, to her death in a nursing home in May 2021, Jones took hundreds of images.
Shortly after she began writing her column, her editor inquired if she had any photos to accompany her commentary pieces. So she began drawing from her vast archive of family photos and cellphone images, to accompany the columns she wrote, and continues to write, for the print and online versions of The Berkshire Eagle.
Many of those photos, and those never seen before, are a part of the online exhibit "Becoming a Parent to My Mom," at UMass Amherst's Hampden Gallery from Feb. 14 - June 1, 2023.
Rita stares off as she listens to music on an iPad and lies in bed at the nursing home where she spent nearly a year from 2017-2018.
- By Gillian Jones
NORTH ADAMS — I am a caregiver to my 85-year-old mother, who is suffering from dementia. She moved in with me on March 21 of this year.
Parents who are dear friends, have said that taking care of a parent must be like taking care of a child. I never had children, as I was too busy with my career. But it must be very similar with the exception that a child who is taking care of a parent is not only a complete role reversal, but a path that ultimately leads to the end of the parent's life.
Suffered a stroke
For nearly a year, my mom resided in a nursing home because she requires 24-hour care. She suffered a stroke in early 2017, or a transient ischemic attack.
According to MedicineNet.com, a TIA is a neurological event with the signs and symptoms of a stroke that typically last up to 30 minutes and can produce problems with vision, dizziness, weakness or trouble speaking. Also called a mini-stroke, a TIA is due to a temporary lack of adequate blood and oxygen (ischemia) to the brain. This is often caused by the narrowing (or, less often, ulceration) of the carotid arteries (the major arteries in the neck that supply blood to the brain).
No doubt this was one of many mini-strokes she has had. But the last one caused severe cognitive impairment. At the time, I was invoked as her health care proxy and power of attorney.
My mom remembers me, and now that she is living with me in my home, she is becoming more comfortable with the caregivers who are with her nearly 12 hours a day or more.
I take care of her overnight and very early in the morning. She has a bed alarm on her bed so that I can hear her get up in the night. A chime that sounds like a doorbell wakes me from my sleep and I head downstairs to assist her.
The indignity of old age is something I see daily. More people are caring for their parents and as the baby boomers age, there is likely to be "a silver wave" as people born between the years of 1946-1964 start to reach retirement age. It is significant because in the developed countries, baby boomers make up the largest segment of the population. While many see this as a potential economic boon, it is also likely to be a burden as some baby boomers who are not as healthy become afflicted with the diseases of old age.
Low pay for caregivers
Like social work, teaching and many other noble occupations, care-giving, whether it is at home or in a nursing home, is not work that pays a great salary. But it is necessary and will become even more valuable in the coming years. "Crisis mode," is what a December 2017 Chicago Tribune article calls "the situation that few are prepared for and many will face." Will there be enough nursing homes to house them? Will there be enough caregivers to take care of the elderly when they can no longer care for themselves? Will they be able to reside in their own home, or the home of a grown child, with caregiving help?
Already, there are not enough caregivers to keep up with the demand. You see help wanted signs at nursing homes and even at area organizations like BFAIR, or Berkshire Family and Individual Resources, which have expanded their services to include elder care. One of the main reasons my mother lives with me, and not in her own home, is because getting overnight help is prohibitive.
In the commonwealth, MassHealth offers Home and Community-based service waivers to those who are eligible. It is based not only on clinical but financial eligibility. It allows long-term services so that an individual can reside at home with 24/7 care. There is even a way for family caregivers to be compensated as a personal care attendant. As families try to juggle their own livelihoods with that of an aging parent, this is — and could be — very beneficial. But even with this waiver, overnight care is restricted as compensation is limited to two hours during the night-time hours of midnight to 6 a.m. The expectation is that the caregiver will be able to sleep, but of course that is not always the case.
For many who are not eligible for such a waiver, an entire life's savings could be spent on taking care of an elderly parent.
The "silver wave" is coming and while many of those seniors will be consumers and help the economy, many more may burden the system, and we need to start preparing and acting before it is too late.
Gillian Jones is an Eagle photographer.
- By Gillian Jones
NORTH ADAMS — I couldn't have been more surprised when a representative from the local Elder Services agency arrived at my home unannounced to investigate and follow up on an anonymous Protective Services report it received in concern of my mom's health and safety.
The gentleman was nice enough, but accustomed to not being well received.
I was further stunned when he requested that mom's caregiver and I leave the room so he could speak to my mom alone.
We obliged but stayed close by enough to hear my mom say, "Jill, can you come here and answer this man's question. I don't know,"
But he did ask her if she felt safe and if she was being harmed in any way. It was a necessary question, but one that was clearly interpreted as ridiculous by my mother.
Eventually, I entered the room, at her request and said, "You realize she has dementia, right?"
The poor guy was just trying to do his job and I understood that and by the end of the visit, we were all more comfortable. He seemed assured that my mother was in a safe environment. He was convinced that the complaint which outlined loose floorboards and un-affixed grab bars in the bathroom was clearly exaggerated. He also asked if we had carbon monoxide detectors, in addition to working smoke detectors, and if my mother's medication was being administered properly.
"Sometimes she refuses to take it, but usually we get it in her eventually," I said.
Trying to wrap my head around the whole experience has taken some time.
As I try to take on the responsibility of caring for my mom, I have received so much positive response and support from the community and the various agencies. This anonymous report has left me dumbfounded.
While I now believe that it was either a disgruntled caregiver or close relative that made the complaint, I am still trying to understand what they were trying to accomplish.
Even though my mom has only been living with me in my home since March, I have been taking care of her for over 20 years, when her only sister, with whom she made a home, passed away and my brother moved to the West Coast. In the last five years I have taken on more responsibility as she stopped driving and became less mobile. We've always been there for one another. She made me her health care proxy and power of attorney in a legal document, but that was only invoked by a physician last year after a stroke left her cognitively impaired and no longer able to make decisions for herself.
NOTHING TO HIDE
While I am flattered that she put her trust in me, it is not a job I ever expected to have to take on. But I am glad that she had the foresight to do so in such a legal fashion.
It is an important position that I am embracing and taking seriously, on top of a career that has been my primary focus for over 25 years.
Why anyone would want to file a complaint against me in the care of my mother still eludes me. However, I am not concerned. I have nothing to hide. I am very conscientious in the care for my mom. I am so much happier taking care of her than allowing her to languish in a nursing home. And frankly, I am confident that the caregivers and I are doing a better job in the comfort of my home.
If the person who filed the complaint would have voiced their concerns, I surely would have entertained them. My mom's safety and happiness is key, not just for us humans but the six cats and one dog that reside with us. There are a lot of souls to take care of.
I am grateful that such safeguards are in place to provide accountability to some of the dangerous homes where true elder abuse or neglect is occurring. And as for the person or persons who reported us, I am not rattled because I am proud of the home I keep and not only because I myself live here. Everyone seems to enjoy being in our home, and I maintain a safe, friendly, environment for all that enter.
Still, I have to grapple with the "anonymous" individual that felt it was necessary to make the report. If it was the disgruntled caregiver, I am not as concerned since that person is no longer working with us. But as for the close family member, well that is more complicated.
Family in general is so complicated and messy. How do I recover from such an accusation when it comes from within the family? That is more difficult.
I think about what my mother would do. I asked her what she thought, as I suspected who the family member was. She simply said, "Tell them to knock it off!" She also said she would write a letter and put it in the mail so that this family member would know that she is OK.
While she is suffering from dementia, I believe that she means what she says. I just hope that this family member is willing to listen.
While taking care of my mom is hard enough, I never thought a report from Elder Protective Services would be filed. But now that that is out of the way, I can get back to the business of taking care of my mom.
Gillian Jones is an Eagle photographer. Her email is gjones@berkshireeagle.com. This is her third op-ed column on caregiving.
- By Gillian Jones
WILLIAMSTOWN — Is it more economical to take care of an elderly parent at home, or put them in a skilled nursing facility? That is the question.
While either side will claim victory over the other, the reality is, it is actually much less expensive to take care of an elderly parent at home, albeit it more time consuming and complex for the family or those closely involved.
Because of the misconception of home care being more expensive, many don't even consider it. Therefore there are many elders residing in skilled nursing facilities who could probably live at home. Many people have told me they found out their parents may have been eligible to live at home, instead of a skilled nursing facility, only after they have passed away.
Medicaid is the lowest priced payor source for skilled nursing facilities which means lower reimbursement rates, and with the substandard care in many facilities due to under-staffing, home care is a considerably more viable option. And in our own Berkshire County, Sweet Brook in Williamstown was rated by a federal agency as one of the poorest quality facilities in the country according to a Berkshire Eagle story by Haven Orecchio-Egresitz on March 4.
Medicaid is historically thought of as paying for nursing home care only. Usually the co-payment paid by the resident is their total monthly income, from Social Security or other sources. But modern Medicaid programs offer care options outside of nursing homes, in the home or primary place of residence.
Many feel they cannot take care of their parents and that a nursing home is the only choice and perhaps for some, that is the case. Often it is a family member who has to step in and take care of an elderly parent or disabled family member. And that family member often does so at great sacrifice.
PAY FAMILY MEMBERS
But what many don't realize is that even family members can be compensated to take care of elderly parents through various programs. And if the elderly have to be cared for anyway, why not compensate family members for the same job, if they are willing and able, especially if it costs less to taxpayers?
According to the website Paying for Senior Care, home and community based services, or waivers allow states to pay for care and support services for individuals residing outside of nursing homes. Commonly, they pay for personal care (assistance with activities of daily living, such as eating, dressing, and mobility) and chore services provided for elderly or disabled persons who live in their homes or in the homes of family members.
According to Medicaid.gov the Money Follows the Person (MFP) Rebalancing Demonstration Grant helps states rebalance their Medicaid long-term care systems. Over 75,151 people with chronic conditions and disabilities have transitioned from institutions back into the community through MFP programs as of December 2016. The Affordable Care Act of 2010 strengthened and expanded the MFP program allowing more states to apply. There are currently 43 states and the District of Columbia participating in the demonstration.
Determining Medicaid or MassHealth eligibility can offer many options for home care.
Furthermore, additional paid caregivers can give relief to family members so they can work, or just get a break, when they are not caring for their loved one. Even programs like adult day health can offer daily respite to family members. And once in a while, a short stay at a nursing home can provide additional respite for caregivers.
Home care is certain to give your loved one better and more personalized care than that received in a facility. And seniors who live at home generally have a better quality of life.
And what is more important to the economy is that caregiving creates jobs! And right now the demand for qualified caregivers is high, whether they are nurses, PCA's or CNA's.
The African proverb that it "takes a village to raise a child" suggests that an entire community of people must interact with children for those children to experience and grow in a safe environment. Shouldn't that adage extend to our elderly population who deserve to experience the same safe environment during the the twilight of their life?
Gillian Jones is an Eagle digital visual journalist who is writing an ongoing series of opinion page pieces on caregiving. Her email is gjones@berkshireeagle.com.
- By Gillian Jones
NORTH ADAMS — It's embarrassing to admit how many cats I live with. It was nothing I ever expected to happen, but as households meld, my mom's and mine, our combined feline population moved to one location and my crazy cat lady story begins.
It can best be described by comparison to "The Brady Bunch" TV series. My mom, her three cats, my dog, three cats and me.
Shortly after my cat population doubled, I noticed a huge sign along West Main Street in North Adams which read something like, "Grandma put in nursing home. Need to find homes for her cats." I wished I had stopped to take a photo of the sign, and unfortunately when I went back it was gone. Perhaps the cats found homes?
I grew up with felines most of my life. But for nearly 20 years, I lived completely cat-free. I only got a cat, Beatrice, after my beloved dog Dante died. One of my former students thought Beatrice should have a friend, so she gave me Lucy, and then Mr. Cat needed a home, and by that time, I couldn't say no.
I should have known that my mom's three cats would have to be figured into the equation at some point, but honestly I wasn't even thinking about it.
It was in January of 2017 my 84-year-old mother, and her three cats moved in with me while her home was being renovated. We coexisted for about six weeks and by that time, I found myself very attached to them.
The cats remained with me while mom resided in a nursing home for nearly a year. When she moved back in with me in early 2018, the cats had already become quite comfortable in my home. Now I can hardly imagine my home without them.
While many have said I should have tried to "re-home" the cats or put them up for adoption, I couldn't imagine doing that. I wouldn't be able to live with myself if they were destroyed, instead of adopted. It's just wasn't an option. There are so many senior cats in shelters already. They are hard to find homes for. Everyone wants a kitten. The same goes for dogs too.
To say having six cats and a dog is a challenge is an understatement. Vet bills, food, medications and complicated relationships especially between all the animals is a just a fraction of the fun. From a half a dozen litter boxes that have to be cleaned daily to cat food dishes on the floor and vomit! More than anything, it has really cramped my travel as finding care for the cats for more than a couple of nights is difficult.
But truly the best part of living with cats is my mom's interaction with them. She reacts to them, talks to them, smiles and laughs. They bring her comfort and I have seen her anxiety be relieved with their presence. They also take turns sleeping with her at night.
When she resided in the nursing home, each one of her cats visited her there, in addition to my dog. The facility allowed pets to visit and I saw the positive effect the animals had, not only my mother but on the other residents. Honestly it brought a tear to my eye and joy to my heart.
As for pets and the elderly, the debate over whether a cat or dog is better continues.
"Cats are helpful for companionship without affecting the limited mobility some of the seniors have. We are finding that some of the housing that seniors are in, like apartments and condos, are more open to cats than dogs," says Susan Kurowski, the Pets for the Elderly Foundation general manager. "Cats are easy to hold on your lap and so many people, especially those who live alone, need the touch and cuddling provided by cats who need to be cuddled."
From where I stand, my cats have a pretty good life and they are strictly indoor cats. They seem to spend most of their days lounging around, snuggling with one another and sleeping. If reincarnation is real, then I'd like to definitely come back as a lucky house cat.
Gillian Jones is an Eagle digital visual journalist who is writing an ongoing series of opinion page pieces on caregiving. Her email is gjones@berkshireeagle.com.
- By Gillian Jones, The Berkshire Eagle
NORTH ADAMS — When I was a little girl, playing with my dolls, I always imagined that I'd be a mom someday. While my life went in another direction as I followed my dreams and had a career, I have at times lamented not being a mom. However in the last couple of years, I have found myself using those untapped skills and applying them to taking care of my mom who is 86 and suffering from dementia.
"Home is Where my Mom is," reads the wall hanging on the wall above my mom's bed in the living room of my home. My home revolves around my mom.
While the notion of taking care of an elderly parent is one that might make some cringe, it has become a gift for me, for the single most important person in my life. Not only did she give birth to and raise me, but she has shown me a love that is truly unconditional. For that, I am truly lucky and grateful.
I realize that not everyone has good things to say about their mother. Many mothers become moms "by accident," and do not embrace the role well. There are a multitude of complex reasons why mothers and their children don't get along. Some mothers have done terrible, unthinkable things. Many children don't even talk to their mothers never mind take them in and care for them in the twilight of their life.
I know I am fortunate to have had a mom that truly wanted to be a mom and was supportive of me. No mom is perfect, but my mom did the best she could. As a single mom from the time I was six and my brother was two, she always advocated for us and put her children first.
Her own relationship with her mom was strained and complex at times. My grandmother and grandfather divorced shortly after my mother was born so my mom never had much of a father figure in her life. As the youngest child, her mom expected her to stay home after graduating from high school and support her. This was not a plan my mother had any intention of following. Against the wishes of her mother, she left home and went to live with her older sister, Shirley, with whom she made a home for many years.
For many years, my grandmother didn't speak to my mother or her sister. I guess my grandmother was a master of the "silent treatment." Fortunately my mom never, ever used the silent treatment with us.
'YOU WERE WANTED'
By the time my mother met and married my dad, she was in her mid-30s. When she had me, she was in her late-30s and from what I understand from my Aunt Shirley, Mom was more than ready to settle down and start a family. They say that older parents are often more patient and better prepared to be parents, even if they aren't as youthful. I think that is true in my case.
In Hulu's dystopian drama "The Handmaid's Tale," based on Margaret Atwood's 1985 novel, June Osborne, a.k.a Offred, is the main character. When we meet June's mother Holly, in a flashback in the second season, the viewer sees a feminist mother. The episode delves into the strained relationship, as Holly is disappointed with June for not doing more with her life.
"I was 37 when I had you. You were wanted," Holly says to June.
That statement seems to sum up how my mom must have felt about having me. At the time, her pregnancy was considered risky and geriatric for her advanced maternal age. But I believe she wanted to be a mother with all her heart. She told me about the time she held a baby for the first time and was so overwhelmed by it. Even now, she smiles whenever she sees a baby, whether it is in person or on the television.
While my mom's own attempt at a nuclear family didn't work out like she had hoped, she continued to do her best to raise us the best way she knew how. Challenging at times, as being a single mother is, she sacrificed much.
So while I don't expect everyone to understand how I can take on the responsibility of caring for my mom while trying to work full-time, preserve my career, and try to live my life, I cannot imagine not doing it. Also, I wouldn't be able to do it without incredible help from others.
I hope I can mother my mom in the same fashion as my mom mothered me. I take comfort in that and I hope she does, too, as she experiences a familiar type of caring. She deserves it.
Every day, I can see my mom fading as dementia and aging takes her from this world. I don't know what lies ahead exactly, except the inevitable, but what many people tell me is that I won't have any regrets that I cared for her, as she did for me.
Gillian L. Jones is a digital visual journalist for The Eagle and has been writing opinion page columns on care-giving. Her email is gjones@berkshireeagle.com.
- By Gillian Jones, The Berkshire Eagle
NORTH ADAMS — "Mom! Mom! Ma!" I call to my mother in the next room. She doesn't answer.
"Rita!" I exclaim.
"What?" she replies FINALLY, but only after I've said her given name.
My mom's name is Rita, but, until recently, I've only ever called her by some derivative of mother. Ma, mom, mommy, mum, mother are all the terms I use to call her. Now she sometimes doesn't even respond when I call her by those familiar names, instead looking blankly into space.
I remember the first time I heard nurses and aides use her proper name in the nursing home. Now our caregivers use her name all the time at home.
"How are you doing, Rita? Are you in pain, Rita? Are you hungry, Rita?
My mom's given name is Rita and while I've always known that, I've never called her, or even referred to her, as Rita ... until now.
A RELATIVE, MAYBE?
Recently in a moment of confusion, she told me she didn't have any children. I tried not to take it personally, after all she has dementia and cannot help it. I smiled and wondered who she thought I was. She says "our mother," often, when referring to my grandmother, her mother. I usually just go along, or at least try to. Sometimes I want to get inside her head and imagine her world at that moment. Am I at least a relative, a sister or cousin?
"Jill ... Jill ... Gillian! Where are you?" she calls from the bathroom.
"I'm right here mom!" I say. "I'm not going anywhere."
"Come here, Jill!" she cries.
Then when I go to her and walk away slightly, she cries more.
"Where are you going? Don't leave me," she cries.
Now, I've gotten to hate hearing my own name! Sometimes she calls me incessantly and doesn't seem to remember that she saw me just a moment ago.
"I'm making you lunch Rita! I'm feeding the cats! You are not alone! I am here with you!"
And then there is the way she sometimes says my name, which is desperate, full of fear and anxiety.
"Jiiiilllllll! Giiiillllliiiiaaaan!"
"Yes, I am right here," I say, trying hard to assure her.
My name Gillian and nickname Jill, has always been confusing. Gillian is not spelled Jillian! Gillian is pronounced with a soft G or J sound, not a hard G, and Jill is with a J not a G. Gill is what a fish uses to breathe with. Confused? Most people are. My dad said even the priest at my baptism pronounced my name with a hard G and he had to correct him. I just tell most people that my name is the same as the actress Gillian Anderson of "The X-Files."
As for my mom, I am using more nicknames or terms of endearment for her. Love, dear, my sweet, Miss Rita, Mrs. Jones, my friend, are just a few. When I was young, she sometimes called me slim because I was so skinny and taller than her. Usually she called me that when she needed me to get something for her from a high cabinet in the kitchen. Now she points at my big belly, my mid-life crisis, and makes a critical comment. I laugh and say that I am middle aged and even starting to suffer from menopausal symptoms.
"Are you older than me?" she asks.
Recently she pointed at Dan, my boyfriend, and called him "Baldy." Fortunately Dan has had a smooth head for a while now and is good-natured about it.
In this new reality, I find myself saying "Rita" way more often than "Mom" now. When I refer to or speak to her, I often use her name, not her title, as I have my whole life.
"Did Rita eat? Did Rita take her meds? What kind of mood is Rita in?" I ask or text, "Is Rita in bed yet?"
I suppose it is more efficient to say her name, even though "my mom" has the same number of syllables — but it is more letters to write.
TRYING OUT NAMES
"Ma? Why are you calling me ma when I'm your sister," she said recently when my brother was talking to her on the phone.
"Hi Ma," he must have just said in greeting, like he's always done.
I wonder about what it will be like if she forgets me altogether. People have said that it can happen. Perhaps I will have to make up a brand new name for myself. I could also have fun trying on different ones. Emma, Olivia, Ava, Isabella, Sophia, Charlotte, Mia or Amelia are just some of the most popular girls names for this year, according to the internet.
Calling my mom by her name, and being comfortable with it, might also be the beginning of the process of me getting ready to let her go.
An Eagle digital visual journalist, Gillian Jones is writing a monthly oped series on caregiving. Her email is gjones@berkshireeagle.com.
- By Gillian L. Jones
NORTH ADAMS —"You definitely don't want to take care of your mom," said an attorney who was helping me to weigh my options and prepare paperwork for my mom's extended nursing home stay in 2017, "It will drive you crazy!"
Those words often haunt me as I have taken on the task of caring for my 86-year-old mother, who lives with me and is suffering from dementia.
As I live with the stress of daily life, in a job which ranks in the top ten as one of the most stressful jobs, it is crazy for me to think that I can handle taking care of my mom too.
And the truth is, I am probably nuts.
"You're amazing! I don't know how you do it," people have said to me if they know me or they read this monthly column.
I don't know how I do it either. But honestly, how can I not do it?
I've written about how my single mom brought us up. She was a good mom. I love her dearly. She worked for 20 years until she had me at age 37. Then she stayed at home until I was 13, and she went back into the workforce. In 1983, she was the first job hunter to be placed in Berkshire County's Women's Services Center Program.
I am now the age she was back then and I have lived my life quite differently. I've never married or had children as I've been nurturing my career as a photojournalist in the newspaper industry for the last 27 years. I cannot imagine not working and I love my job. For my mom, taking care of us was a job that she did and absolutely wanted. I see many of my friends who struggle to take care of their children, and try to work, often having to choose one or the other. Many women quit because when they work, they are just paying for the child care itself, so it's "just a wash." But for many women it is often worth their sanity and self-worth just having a job outside of the home, in the real world.
I have no doubt that the stress of child rearing was exhausting for my mom. Sometimes I could see it. Sometimes I could feel it. It made a huge impact on me — apparently enough not to do it.
NOT GIVING UP
"You can always put her in a nursing home if it gets to be too much," a caring friend will say to me.
Did my mom send me "back to the stork," or put me up for adoption when it got to be too much? She didn't give up on me, so how can I do that to her? Okay, so I have a career, more work responsibilities than she ever had, and she is my mom, not my child. Unless we can no longer care for her at home, or her condition makes it impossible to do so, at home is where I hope she will stay.
Respite stays in the nursing home, when I am not able to secure overnight care for a few days, are hard enough. While I know she is being left with trained professionals, the experience is difficult for her and me, even if ultimately she doesn't remember it.
And while I try to maintain my stamina so I can be productive in my life and job, sometimes my body takes over and I either get very sick, or suffer from physical pain which I know is a manifestation of doing more than I can handle.
I carry all my stress in my neck and shoulders. It comes from carrying cameras and other accessories as well from standing and sitting for too long, like when I drive from one end of Berkshire County to the other. While I cannot tell you how many times I have worked with pain, sometimes I simply cannot function, especially when medication makes it unsafe to do so. These days it seems like every medication causes drowsiness and affects the ability to safely operate machinery, or a motor vehicle. And I hate having to call out. I'd always rather be working and busy. And sometimes it is just necessary for me to rest.
Recently I found myself so exhausted and even depressed, a common side-effect of caregiving, that I literally had a fit of sobbing in my mom's room at the dementia ward as I was bringing in her belongings. The fit was prior to dropping her off, so she did not actually see me lose it. The short stay or respite care was for a few days so I could get away to my boyfriend's annual family reunion in mid-July in Connecticut.
To my dismay, upon my return, I felt no more rested and — even more depressed.
I've been "burning the candle at both ends," for a while now, some have told me, and it comes with consequences. Am I going a bit crazy? I sure feel like I might be.
I know that my mom's remaining time on this earth is short. I also know that I am not alone in my situation. So many people struggle with caregiving, whether it is for an elderly parent, a person with a disability or special needs, or even parents who get exhausted from child-rearing.
I know I need to take care better care of myself and I am trying. I'm not walking as much since my dog passed away, and while I often walk the dogs of my friends, it isn't as consistent. Making some time to participate in caregiver support groups, exercising more, and engaging in some therapy are just some of the things I am looking into.
Someday I expect I'll look back on this time in my life, recognize the challenge I faced, and feel no regret. Perhaps I'll even feel a sense of relief and be proud that I managed to survive. I can only hope so.
Gillian L. Jones is a photojournalist for The Eagle and has been writing opinion page columns on care-giving. Her email is gjones@berkshireeagle.com.
- By Gillian Jones
WILLIAMSTOWN — I am my mom's health care proxy and power of attorney. I am her eldest child and have always lived close by. My younger brother grew up in the Berkshires but moved to San Francisco over 20 years ago.
What if I wasn't my mom's primary caregiver? What if my sibling was the primary caregiver and I didn't live nearby, I wonder what it would be like? Hmmmm .
According to the Family Caregiver Alliance, the percentage of family or informal caregivers who are women range from 53 to 68 percent. My parents were happy to have two children, one of each gender. But for the purposes of this tale, I am going to imagine that I have a sister instead of a brother. I'm not being sexist as I know there are many male caregivers. Honestly, I kind of just always wanted to have a sister.
How would I be to my sister if she was the primary caregiver and I was able to live my life free from the constraints of caregiving? Would I be supportive?
Well for starters, I'd be so grateful for my sister. Whatever issues we may have had growing up would be gone. Even if she wore all my clothes and stole my boyfriends, I'd surely forgive her. That silly nonsense is in the past! I'd probably call her at least once a week and see how she was doing. I'd ask her if there was anything that she or mom needed. Whether it was money, supplies or time, I'd give her anything that she needed.
While I would help financially with the daily care of our mother, I would also show my absolute appreciation to my sister. I'd give her gift certificates for yoga classes, massages and meals at area restaurants so she could relax and find time for herself.
During my vacations, I would probably coordinate with her and give her a break so that she could get away. I'd use my time off to go and visit my mom and appreciate the time I had with her.
I'd surely respect the choices my sister made in regard to our mom's care. While I would appreciate being included and would offer any input, I would defer to her better judgement since she was closer and had more experience.
For the purpose of this tale, I am going to imagine that like my brother, in real life, I live on the other side of the continent. But if I lived closer, I would do all those things described above and even offer to give her weekly caregiving breaks and spend as much time as I could with our mother and share the responsibility.
Would I feel a bit guilty that my sister was taking on the brunt of the responsibility? Yes, I would. But I wouldn't let that guilt take hold of me and take it out on my sister, mom or anyone else. And if I really had a problem, I'd probably get some therapy and work it out.
I'd likely also educate myself on what my mom was experiencing and what lay ahead as the dementia progresses. I'd also be mindful of my sister's health and happiness. I'd be prepared to help her even after our mother passes away. Whether it is going through all of mom's stuff in her house and making funeral arrangements, I'd be there for her. In fact, I might even take over for her and give her a break.
Many people have great families that take turns being the role of caregiving for an elderly parent or parents. Those families cooperate and spread the burden around. Those families still struggle but they do it together. Yet others are abandoned by siblings and other family members as they take on the overwhelming responsibility of caring for an aging parent. It's a job that few want to take on. It is probably a lot easier to just place their elderly parents in an assisted living facility or nursing home.
It's easy for me to say that I'd be the best support system to my imaginary sister. If I had a sister and she was my mom's primary caregiver, I'd like to believe that I would be a rock for her. I'd respect the sacrifice she is making and do my best to shoulder the burden. But in this reality, I am the primary caregiver to my aging, demented, 86-year-old mother. It would be so very nice if I had a sister like me.
An Eagle digital visual journalist, Gillian Jones is writing a monthly op-ed series on caregiving. Her email is gjones@berkshireeagle.com.
- By Gillian Jones
WILLIAMSTOWN — While I have no idea if my mom has a favorite child, of all the caregivers we have, I am likely her first choice.
"Where's Jill?" my mom cries, as a caregiver tries to assist her.
"She's at work," I hear the caregiver reply from the next room. A little "fiblet" for sure, but not entirely untrue. I'm usually scrambling to get to work as a staff photographer for The Berkshire Eagle. My dream job since I first became a journalist, working at the North Adams Transcript from 1992-2014.
It has been challenging, but I have worked too hard to get to this point in my career and I'm not giving up the job of a lifetime.
"Where are you going?" my mom asks, as I stand at the door holding all my photography gear.
"To work, Mom," I reply.
"Okay," she says with a disappointed look on her face.
ROLE REVERSAL
I'm sure the feelings are no different for a parent going to work and leaving their child with a sitter or at daycare. I have a vivid memory of my mom leaving me with my aunt to go out to dinner, when I was young, and I remember how anxious I was.
Not only do I need to work, but I love to work, and I hope to do it long after my mom passes on.
While my mom stayed home and took care of me and my brother, that is not a viable option for me.
We have had countless women taking care of my mom over the last couple of years. All of them are trained and some even have other consumers they care for. I am not specially trained and have only ever taken care of my mom in this manner.
A good caregiver is not only helping my mom, but ultimately helping me. When I come home from work at 9 p.m. or so, it is great when my mom is already in bed. But many times she is not, which is alright. I think she wants to make sure I get home okay. Once a mother, always a mother. She usually goes to bed a short time later, but even if she doesn't, I enjoy spending time with her.
It is nice to come home to a clean house with no dirty dishes in the sink, clean floors and the laundry all washed and folded. When that is the case, I always make sure I express an attitude of gratitude to our caregiver.
I try to make sure that when a caregiver begins their shift, that chores are in the works. Many appreciate that because it gives them something to do when they get here.
I am still having a hard time telling them what to do, but I am learning. I guess I just figure they will see what needs to be done and do it. Every caregiver is different. Some have rearranged my kitchen cabinets, and that is just fine with me. There is quite a bit of down time with my mom, and often she snoozes in her chair or in bed, which must get incredibly boring. Having a television with cable, Netflix and Amazon, providing so many channels to choose from does help fight the boredom, I hope.
A good caregiver should not come to work when they are sick. That's the last thing my mom and I need! Most abide by that as they are not doing anyone a favor, including themselves. They should rest and get better. However, the same does not apply for me, since my mom and I live together. Like a parent, when they are sick, they usually don't get a break from taking care of their children.
THE MOM BUSINESS
When a caregiver cannot work, it is almost impossible to get relief staff from the agency. So I am relying on another caregiver to work a double shift, or I must take on the responsibility, and often that requires me to call out of work. The Domino Effect is certainly at play here and the impact goes far beyond just me and my mom. But there is no doubt that my mom is happy that I can stay home with her.
And if a caregiver is a parent, they often must call out of work when their child is sick, or a babysitter is sick or unable to work. When school is cancelled, parents must often scramble to find care for their kids, or they simply cannot work. Right now winter storms are also a huge factor. One of our caregivers drives up from Pittsfield and does not have an all-wheel drive vehicle.
For the first time in my life, I feel not only like a parent, but a manager of this business which is tasked with taking care of my mom. I am at the mercy of our caregivers who have their own complex lives. For an independent woman like myself, I am learning to depend on others, which is challenging. My job always came first, but now I have to consider my responsibility to my mom.
I don't know if I am a particularly good caregiver, but to my mom, I am a familiar face, and she prefers me, at least for now.
Gillian L. Jones is a digital visual journalist.
- By Gillian Jones
WILLIAMSTOWN — "Don't be a martyr for our mother. She doesn't want that," the email read, from a sibling on the other side of the continent, over 2,400 miles away.
The caregiver was trying to share their common humanity with her sibling during this unprecedented time in our history. As an essential worker, the caregiver is not only doing her regular job, but trying to navigate around this new world during a pandemic, with chronic stress, unlike she's ever experienced before while continuing to care for their elderly mother.
She wanted to impart some of her perspective as she shared her challenges. She wasn't looking for sympathy or advice, just some moral support.
As much as he claims he wants to help, it feels more like he wants to control things from afar. After communicating with his mother, he relays to his sibling or caregiver what his mom expressed to him, as if they don't already know what her needs are. When she gets sick or takes a fall, he inquires how more safeguards can be in place so it never happens again. With gravity a constant, perhaps they should consider sending their elderly mom into outer space where there is less gravitational force, or tying her to her chair or bed so she cannot move about on her own, just in case the bed or chair alarm malfunctions.
While the caregivers are providing consistent care for their mother and are grateful to be essential workers, how can they not experience the stress of it all, with burnout looming on the horizon?
While caring for an elderly woman with dementia in her own well-kept, comfortable home may seem like a cushy gig compared to all the other essential jobs, the job of a home health aide is still a challenging one.
Just the other day, my mother told me that one of our caregivers "was trying to kill her."
I wanted to tell her that no one wanted to kill her, and that we are in the midst of a pandemic. While COVID-19 probably wants to take her life, or at the very least make her terribly sick, we are taking every precaution to keep her healthy and safe.
When it comes to taking care of an elderly parent, there are probably many caregivers who feel like or are perceived as "martyrs." While a martyr in this sense is not the traditional definition of "a person who willingly suffers being put to death for a cause," it is more in line with "a person who endures great suffering on behalf of a belief, principle or cause."
Caring for my mother at home, instead of having her live her last days in a nursing home, is certainly a principle, but I wouldn't say that I am willing to die for it. Sacrificing a lot, well sure — I am and I'm not alone in that. It's also very challenging more often than not. Mostly, caring for my mother is a gift.
Should those on the front lines during this pandemic be called martyrs? I think most of us view them as heroes. Should we call them martyrs because they are doing a dangerous job? Maybe they have a death wish? How could anyone be so selfless?
When it comes to caring for an elderly parent, no one rushes to the opportunity. More often than not, the responsibility falls on the child who is geographically close, has no children, or has nothing better to do. But the adult child who takes on the job of caregiver to an elderly parent does so because it is the right thing to do. There is undoubtedly some self-sacrifice involved and perhaps others will view them as a martyr, but more likely than not, they should be praised for what they are — a warrior on the front lines caring for our elderly, and dare I say, a hero.
Caregivers of all kinds should be hailed as heroes. If you are a caregiver draw strength from that and continue being the brave soldier that you are.
An Eagle digital visual journalist, Gillian Jones is writing a monthly op-ed series on caregiving. Her email is gjones@berkshireeagle.com.
- By Gillian Jones
WILLIAMSTOWN — I have confessed in this space that I have used "fiblets" to give ease to my mother, who is suffering from dementia.
But lately I have gone beyond what I ever expected I'd fabricate to give my mom some peace and get her to do what we need her to do for her own well-being.
"Mom, Melissa and Marty are my friends," I said referring to our two main caregivers.
"Well they may be your friends, but they aren't mine," she responded.
Then came the idea.
Blood is thicker than water. Family bonds cannot be denied.
That is when I started telling her that our caregivers were members of our family. And while perhaps they are not family she recalls, I assure her that they are undeniably my family.
So now Marty and Melissa have become aunt Marty, cousin Melissa and newcomer Abigail is cousin Abby. My mom seems more comfortable with this and honestly I am OK with it since they feel like family anyway.
But my narration goes further and deeper.
"Where is mother?" she asks, referring to her mother and my grandmother. I pause for a moment because she has been dead for over 30 years.
"Is she at work at the mill?" she inquires further.
"Oh which mill?" I ask. "I forget." My mom shrugs.
"Uh, actually she's out on a date!" I blurt out.
My poor grandmother divorced my grandfather shortly after my mom was born. Rumors are he was more than a bit flirty with the ladies, and was a notorious storyteller. He once showed me a scar on his leg and said he was shot at by the police. He may have been a bootlegger during prohibition in the 1920s, but I'll never know for sure.
"Oh," my mom answers somewhat surprised but reacting like it isn't within the realm of responsibility.
"He's a really nice gentleman," I add, speaking of this fantasy date for my Victorian era grandmother. "She'll be out late."
"Will she be home when I get there?" she asks. "I don't want to walk home in the dark."
"Oh no, Rita, you are spending the night here," I say. She shakes her head as if I said something impossible, so I say "Let me call her and ask if it is OK if you stay here tonight."
I pick up the phone, pretend to dial and then have an imaginary conversation with my dead grandmother, as I hear a dial tone droning in the ear piece.
"Hey Gram, hi ... yeah good ... so Rita is going to spend the night here. Is that OK? Oh ... good I'll tell her, OK, bye. Enjoy your date. Sorry to bug you," I say and then hang up the phone. "She says it is all right if you spend the night. She'll see you tomorrow. She says she loves you." My mom seems content and smiles as I say this. She has the best smile and I see it nearly every time I tell her I love her. It's probably the single most thing I will miss most about her when she is gone.
Recently in what is almost a daily, futile effort to get my mom out of bed, I told her that there was a bear outside in the yard. Of course there wasn't, but our caregiver played along and it motivated her to get herself out of bed and into the bathroom where we could take care of her daily needs, and by the end of it she forgot all about the bear. We've used this tactic on more than one occasion and it has always worked. I guess my mom really wants to see a bear!
I know my storytelling and "fiblets" come from my very early childhood.
When I was five or so, I had a good friend who had freckles. She was Irish and a redhead with the last name McCarthy. We were in kindergarten class together. Apparently I envied her freckles and wanted some, too.
One day my mom told me that if I ate lettuce, I would get freckles.
Apparently, she really wanted me to eat lettuce.
As an adult, I love to eat salads and even grow lettuce in my garden. Thanks, Mom, for knowing what was best for me, even if you had to fib a little to do it.
Gillian Jones, an Eagle digital visual journalist, is writing a monthly op-ed series on caregiving. Her email is gjones@berkshireeagle.com.
- By Gillian Jones
WILLIAMSTOWN — As I held her hand, with my brother on FaceTime from San Francisco, my mother died May 25, at the Williamstown Commons. After a long battle with vascular dementia, her suffering came to an end. She was 88 years old.
With my mom’s final wishes being respected, I have been planning how her celebration of life will be conducted with all the details of her Mass and burial. I’ve never planned a funeral. I’ve never even planned a wedding. I’ve planned a few birthday parties and numerous photo exhibits.
I am getting an education beyond caring for an elderly parent to what is involved in planning a funeral and I’m sure there is more to come as I handle the intricacies of her estate.
While in the thick of taking care of my mom, I was exhausted and heavy with the burden of responsibility as I tried to have a full-time job — and some kind of life for myself. I was literally working upwards of 80 hours a week. One of my friends, who was gravely concerned about me, sent me an article about caregiver burnout. It was very informative and I learned that, to put it mildly, I was on my way to being toast!
Now, I feel lighter. I think the anticipatory grief over the last four years is helping me to cope better than I could have imagined. I know there is much work ahead, but I accomplished my primary mission. And for that, I am truly proud.
Trying to ease the indignity of growing old and making my mom comfortable these last few years took a village. From her doctors to her vital caregivers, including myself, we did the best we could. The agencies that helped us along the way gave us great support. It wasn’t always easy, but we got through it.
As I was told many times by many people who took care of their parents, I will feel no regret for the inherent sacrifice it would take — and indeed I do not.
While I wish I had more counsel on the handling of other matters concerning her estate, I have learned some valuable lessons which I hope to share with others in future columns so that they can avoid the same hardship.
I am so lucky that I was able to take care of my mom and keep her at home for an entire year during the pandemic. And to be able to be with my mother when she took her last breath was a gift I will always cherish.
My heart truly breaks for those who were unable to visit their loved ones, in nursing homes, and be with them at the end.
Now that I am closing a chapter of my life, the world is awakening from the pandemic and things are starting to get back to normal. I thought my grief might impact that joy, but to my surprise, so far, it hasn’t.
- By Gillian Jones
NORTH ADAMS — It has been over a month since my mom died. And you know what? I am doing OK.
I mean, I really am doing OK. Not just OK, but actually kind of good, and that surprises me.
The support I have received from my friends, colleagues and subscribers to The Eagle, who read my previous column, has been truly amazing. I have learned that my column, about my experience of caring for my mom, has touched so many people that I ever could have imagined.
Those who care for their parents or have cared for their parents have said that, through my column, they followed my journey for the last three years. Many have even said that they took solace in my words and found my truth to be theirs as well. My soul couldn’t be happier to hear that.
As a journalist it is important to shine light into the darkness, whether it is investigative work or sharing an intimate experience like caring for an elderly parent. To shine a light on something that society doesn’t talk about brings it into the spotlight and perhaps even facilitates positive change.
My lens on the world
Furthermore, as a photojournalist, I have had the privilege of capturing people’s lives.
Whether it is a joyous celebration like graduation or a tragedy like a car accident or fire, it is my job to photograph those events.
To share my intimate experience is not only humbling but hopefully informs people that my empathy is genuine. It is never my intention to sensationalize their experiences. In other words, documenting their tragedy has never given me any benefit or gain.
To take photographs of my mom as she was dying seemed like a natural thing for me to do. I wanted to share my experience with my friends, family and others.
I even found myself taking photographs and videos with my iPhone at her calling hours, funeral Mass and at the cemetery.
I suppose I wanted to share the photos with my father, brother who is estranged, and other friends and family who could not be in attendance.
Photography is my art and expressing myself is so absolutely necessary.
In a sense even this column has been, and will continue to be, an outlet for me.
So it seems weird not to be sorrowful about my mom being gone. To say I miss her is odd. I’ve been missing her for the last four years as dementia was slowly taking her mind and even her personality.
I didn’t realize this until I was looking through my archive for photos for two digital frames that were on display at her calling hours, and found a video from 2008.
My brother had come to visit and I was experimenting with the video setting on my new digital SLR camera. The act of shooting the video was so insignificant at the time. I might have even deleted it. But I am so glad I didn’t.
The opportunity to see my mom as I remembered her was amazing. Seeing my brother, who is estranged unfortunately, was also reminiscent. Two of my dogs and my mom’s late cats were also in the video and I guess that is when I realized that even after people die they are really still with us.
Life, and death, imitating art
The poem, “Death Is Nothing At All” by Henry Scott Holland is often read at funerals. I found the poem written in my mom’s handwriting on a piece of paper, on the day after her death. I found it while looking for something else. The poem brought me so much peace. I know that my mom would not want me to be sorrowful.
During my mom’s funeral, the Rev. William F. Cyr read the poem and spoke about its meaning. By divine intervention, Father Cyr officiated over my mom’s funeral because he was filling in for Father McDonagh, who was on vacation. Father Cyr knew my mom, and also officiated over the funeral Mass for my aunt, my mom’s sister, when she died in the last century. His personal memories of my mom and my aunt, and how they were inseparable as sisters and devoted to their faith, were heartfelt and so touching.
Everything about my mom’s last days were as they should have been. Her celebration of life was perfect.
While I would have gladly taken care of her if she continued to live, I am at peace knowing that she is no longer tethered to her mortal coil. She is free — and so am I. I will honor her by continuing to live my best life, by shining light into the darkness and trying to make a difference in the world in whatever small way I can.
- By Gillian Jones
NORTH ADAMS — The summer of 2021 flew by, as summers in The Berkshires often do, but this summer was the first one ever without my beloved mother, who died in May.
The void left by my mom’s death is still pretty devastating, but I am doing OK, or at least as well as can be expected.
I haven’t been able to finish writing a column and submit it for the last couple of months. It isn’t that I haven’t tried, but there is still so much to process, and do, as I figure out how my life goes on after so much has changed.
My last column was about my COVID discovery and what seemed like an end to this pandemic. Now the outlook is much different, as it seems we are far from the end of this plague, with even more risk looming.
It’s a relief not to have to worry about my mom’s well-being now that she has passed away. I still feel a sense of accomplishment in getting her through the worst of the pandemic before the vaccine and getting her vaccinated when we were able.
People in this community have been so wonderful. I am eternally grateful for the outpouring of support. My tributes to her and our journey together written in this space are far from over.
Many people have shared their experiences with me about losing their mom. Some have even said it is something they have yet to get over so many years later.
It is a slow process for sure. It’s been just over four months, but it just as easily could have been a year ago or last week.
Life goes on. Things change and yet so much remains the same.
For at least the last five years, my life revolved around my mom. I am still getting used to not having her alive and on earth, as I did for over 50 years of my life. At first I couldn’t even walk into a grocery store without thinking about what I needed to buy for her, in addition to my own household. Now I find myself going to the market a lot less than I did before.
I am also working on trying to change patterns of coping that I relied on for years, when the stress and pressure of my life was too much to handle at times and certain escape seemed necessary for my survival.
While I have been experiencing anxiety on a pretty regular basis now, I am certain I am not alone, especially with the ongoing pandemic. I can still remember being a small child and the trauma of my mom and dad going out to dinner with relatives and leaving me behind with a family member. The anxiety was traumatic for me. The separation from my mother, who was a stay-at-home mom, was overwhelming. While I certainly don’t feel that as a 50-something-year-old adult, I believe the trauma I felt then is still buried deep in my subconscious somewhere.
When I was taking care of my mom, I took solace in telling myself, and others, that the situation wasn’t going to last forever. That helped me get through it, and now that I am in the light at the end of that tunnel, I am glad I had that attitude.
Perhaps that is the exact same strategy I need to employ for the next year or two.
Things are even more uncertain than usual, in the world and at home, but it is temporary. Sure there is always going to be something to worry about, or a dark tunnel to navigate but there is always light at the end of it, however long that journey may be. I believe that is what it is to have hope.
NORTH ADAMS — As I approach the one-year anniversary of my mom’s death, and my first Mother’s Day without her, I continue to mourn her in new and different ways. Sometimes, I wonder if the deep pain of the loss will ever be truly alleviated.
When my mom first died, I remember feeling OK. “I’m doing alright,” I’d tell people. I knew she was no longer suffering as she “shuffled off her mortal coil.” I was even relieved to no longer be carrying the overwhelming burden of her care.
Her death was anticipated. Because she suffered from dementia and was in her late 80s, I had been actively mourning her loss for years before her death.
But for the last couple of months, it surprised me to be feeling even more sadness bubble up. Sneaking up on me at times, it causes anxiety and interrupts my daily life. It is uncomfortable, and I’m beginning to learn how to live with it.
I’ve never experienced this kind of loss before even though I have mourned the deaths of many people and pets. Many of the human deaths were untimely, and some even died by their own hand, so the shock was jarring.
“Time heals all wounds,” they say, and perhaps down the road, it may.
Grief is a sign that we loved, and I know how lucky I am to feel that sorrow, because I loved so deeply and that love was unconditionally returned. I also know that I was lucky to have my mother in my life for such a long time. I didn’t lose her when I was a child or young adult. But as a good friend told me recently, grief is not a contest. Your feelings are your own and you are entitled to them. You cannot compare any one loss with others.
As I read about the stages of grief and the reality that everyone is different and mourns as such, I continue to ponder the biggest loss of my entire life.
The five stages of grief which stem from a model first presented in the book, “On Death and Dying,” by Elisabeth Kubler-Ross in 1969, include denial, anger, bargaining, depression and acceptance.
As a society we try to compartmentalize our common human experiences and find ways to explain it methodically. But everyone is different and we cannot gauge our grief by some scientific formula.
It is hard to believe she is gone and I sometimes forget. But I certainly don’t deny that. She was a constant in my life for more than 50 years.
While I am not angry that she is dead, I’m more frustrated with certain people like my brother and my father, who are emotionally unable, and unwilling, to share a common grief with me.
I wouldn’t say that I would make a bargain to bring her back to life, especially in the state that she was in, riddled with dementia and suffering in a body she had long outlived.
Now as for depression, I had been feeling it pretty intensely for the last couple of months. The feelings of sadness were complicated, and some days were so intense that it was debilitating. Not even the distraction of work could propel me forward. Fortunately, I am starting to feel better, but uncertain of what the future holds with these unpredictable feelings.
It’s been hard to share my grief with friends whose lives are as full and busy as my own. Furthermore, no one who hasn’t lost their mother understands what I am going through, so I’m reluctant to share it with them right now. However, I have shared tears with strangers and acquaintances who have also lost their mother. Most reveal that the grief they have for a parent who has died still plagues them — many years later.
“Will it get any easier?” I ask rhetorically.
Over time I will likely adjust to my “new normal,” and accept that my grief for my beloved mother will probably last for the rest of my life. After all, I still remember all those I have loved and lost. Most cross my mind at least once a day. But the sadness is not as painful as it once was.
Eventually, I hope it will become easier to accept the grief and instead bask in the memory of my mother, who she was and the good times we shared.
In my 30 years of documenting the Berkshires as a photojournalist, I have captured people during their best of times and, unfortunately, at their very worst.
From graduations and proms to high school sports championships, I have also had to document the tragedies of accidents, fires and other mishaps that are often part of the human condition. I have tried to do that with care, compassion, tact and understanding, channeling my own sensitive nature despite sometimes being accused of preying on the misfortune of others, as those in the media often are.
To take 30 years of documentary photos and come up with a curated exhibit that somehow represents that span of time is a daunting task. Access to some images dictated their ability to be included. But combing through hundreds of photos was a task that was tedious at times, but mostly it was nostalgic.
In 2012, I curated a 20-year exhibit of photographs from my career at The North Adams Transcript. It took me over a year to work on. I scanned negatives, from the archive that I had access to, looked through digital files, and finally made prints which I later framed for a month-long gallery exhibit at MCLA’s Gallery 51 in downtown North Adams. As a photojournalist whose work is mostly seen in newsprint, it was great to show images in a "fine art" format. All those scanned negatives are now part of my digital archive, from which the majority of this retrospective is drawn from.
Ten years later, much has changed. I’ve been a staff photographer at The Berkshire Eagle for eight of those years, following the closing of the North Adams Transcript in 2014. In addition to working for The Berkshire Eagle, I have also worked at The Bennington Banner in Vermont, and am a regular contributor to the Associated Press Photo Service. I've won an award or two. I illustrated the book, "B is for Berkshires," by Islandport Press, which contains some archive photos from The North Adams Transcript and The Berkshire Eagle.
My archive of photos is vast and incomplete. Many early digital images were lost due to grave computer system malfunctions and a lack of reliable storage. In the early days we backed up images on floppy discs, zip drives and compact discs before moving to more conventional, and reliable, back-up drives and online storage.
In 1992 when I began working as a journalist, I had been a college graduate for just about a year. My only experience in photojournalism was at my college newspaper, The Beacon, at North Adams State College, now the Massachusetts College of Liberal Arts. I had been the paper's photo editor in the fall of 1990. It was the toughest job I ever had up to that point, but I loved it. Even when I was no longer on the staff, and not getting college credit, I regularly submitted photos to the paper for publication.
In those days, I was shooting film which had to be developed. Color film and slide film had to go to the photo lab to be processed as I never learned to process color film, unlike my peers at The Berkshire Eagle. When it came to black-and-white film, I could process it myself in a darkroom. While I had graduated in 1991, my college professor, Fred Johns, continued to give me access to the college darkroom so that I could hone my craft and keep the passion alive as I worked a retail job.
It was sheer luck that when I finally dropped off my resume and clips to Transcript editor and publisher David Nahan, he had just lost his chief photographer.
I began in mid-June and worked part-time until August, when I was hired full-time with benefits for a modest $6 an hour. I learned how to half-tone photos and after the pages were pasted together. I would shoot them to make the negatives that would then be used to make the plates for the printing press. I gained respect for deadlines and understood that the job was not over after I submitted my prints.
The darkroom aspect of photography was a huge part of my job. I processed everyone's film, in addition to my own. Most mornings I would develop up to a half a dozen rolls of film. I was like a cook in the kitchen, a darkroom attendant, serving the developing and printing needs of the entire newsroom and advertising staff.
People often ask me if I miss shooting film. Honestly, I don't. I'm not a fine art photographer. I'm a journalist and digital is perfect for that. I also really love seeing my photos in a world as it truly is — in color. I can barely remember what it was like to shoot in strictly black and white.
Around the mid 1990s, I began scanning the black-and-white prints I developed into Adobe Photoshop. Later I scanned the negatives. It meant less time in the darkroom and more time sitting at a computer.
We started to use our first digital camera for news in about 1996. Because we were an afternoon paper with a late morning deadline, I could then shoot something that was razor close to our deadline. It was convenient, but in the early days, digital cameras were slow. I would choose the moment to capture, press the shutter and there would be a pause before the photo was taken. It was frustrating!
Digital cameras started to get a bit better and in the late 1990s we were issued the Nikon Coolpix 990 with its unique swivel design and two additional "screw on" mounted lenses — a telephoto and a wide angle. I had to look through the screen on the back. I could hold the camera above my head or on the ground and still see what I was photographing. It still wasn't as fast as my film single lens reflex camera, so it was sometimes necessary to use my film camera for the variety of lenses and speed. In September of 1999, the newspaper began printing in color. Black and white photos was reserved for inside pages only, but most were taken digitally.
I used my film camera to photograph an airshow at Harriman West Airport in North Adams in 1999. It was there that I witnessed a horrific accident in which two bi-planes doing maneuvers crashed in mid-air killing the pilots. I was on auto-pilot as a man on the tarmac told me to jump on the back of his motorcycle and we rode to the scene.
After I took the photographs, I drove to Ritz Camera store in The Berkshire Mall to have the color film developed and then I scanned the negatives at the office.
By the fall of 2000, we were issued the first professional digital single lens reflex with lenses. The Nikon D1 did everything my SLR did. It was a great digital camera and it started my journey out of the darkroom for good. While I still had to develop the film of reporters who used their film cameras, I was in the darkroom less and less. The digital age was upon us. Cell phones that took photos were still a few years away.
With independence from darkroom duties, I had more time, so I began shooting sports in about 2001. Since then I have shot every sport Berkshire County has to offer, in every season.
The darkroom disappeared in 2011, when The Transcript building on American Legion Drive was sold and our much smaller office moved into a downtown storefront on Main Street in North Adams. The Transcript was dissolved in 2014 and the North County Bureau of The Berkshire Eagle would move to Union Street for a short time, before settling in our present office at Mass MoCA.
This job has been a distinct privilege. For those considering a job like this, it is not a 9-to-5 job. In the early days of my career, the Transcript had no Associated Press Photo Service, so it was my responsibility to provide nearly all of the photos in the paper. It was all consuming.
A job as a photojournalist is a challenging one especially if you are looking to have a family, be able to support them and have a life outside of work. At least it was for me. As a woman there is a lot of sacrifice for a career in this field, but the rewards are beyond anything I could have imagined. After 30 years of doing this work, I can honestly say that I have no regrets. I hope to continue this work for as long as I am able to.
In 2001, when I was 31, The Transcript did a special section to celebrate Northern Berkshire County's 50 most influential people. To my surprise, I was named as one of those people.
"If a picture tells a thousand words, then the thousands of photos Gillian Jones, the chief photographer of the North Adams Transcript has taken are worth millions. Through her lens, Jones has captured the faces, places and major events of Northern Berkshire County for the past nine years. Gillian's work in photography shows the portraits of life that cannot be described in words," Transcript Managing Editor Kevin Moran said. "Her photos are a reflection of our daily lives here and inform us on a daily basis. They provide us with the opportunity to see our neighbors, our leaders, our successes and our tragedies — people and events that we're not present to see in person, but are available for all to experience, thanks to Gillian. In essence, what Gillian sees and photographs becomes a part of our local historical record that generations in the future will rely upon to provide context and definition about the world in which we live today."
More like this...
- By Gillian Jones
NORTH ADAMS — I am a caregiver to my 85-year-old mother, who is suffering from dementia. She moved in with me on March 21 of this year.
Parents who are dear friends, have said that taking care of a parent must be like taking care of a child. I never had children, as I was too busy with my career. But it must be very similar with the exception that a child who is taking care of a parent is not only a complete role reversal, but a path that ultimately leads to the end of the parent's life.
Suffered a stroke
For nearly a year, my mom resided in a nursing home because she requires 24-hour care. She suffered a stroke in early 2017, or a transient ischemic attack.
According to MedicineNet.com, a TIA is a neurological event with the signs and symptoms of a stroke that typically last up to 30 minutes and can produce problems with vision, dizziness, weakness or trouble speaking. Also called a mini-stroke, a TIA is due to a temporary lack of adequate blood and oxygen (ischemia) to the brain. This is often caused by the narrowing (or, less often, ulceration) of the carotid arteries (the major arteries in the neck that supply blood to the brain).
No doubt this was one of many mini-strokes she has had. But the last one caused severe cognitive impairment. At the time, I was invoked as her health care proxy and power of attorney.
My mom remembers me, and now that she is living with me in my home, she is becoming more comfortable with the caregivers who are with her nearly 12 hours a day or more.
I take care of her overnight and very early in the morning. She has a bed alarm on her bed so that I can hear her get up in the night. A chime that sounds like a doorbell wakes me from my sleep and I head downstairs to assist her.
The indignity of old age is something I see daily. More people are caring for their parents and as the baby boomers age, there is likely to be "a silver wave" as people born between the years of 1946-1964 start to reach retirement age. It is significant because in the developed countries, baby boomers make up the largest segment of the population. While many see this as a potential economic boon, it is also likely to be a burden as some baby boomers who are not as healthy become afflicted with the diseases of old age.
Low pay for caregivers
Like social work, teaching and many other noble occupations, care-giving, whether it is at home or in a nursing home, is not work that pays a great salary. But it is necessary and will become even more valuable in the coming years. "Crisis mode," is what a December 2017 Chicago Tribune article calls "the situation that few are prepared for and many will face." Will there be enough nursing homes to house them? Will there be enough caregivers to take care of the elderly when they can no longer care for themselves? Will they be able to reside in their own home, or the home of a grown child, with caregiving help?
Already, there are not enough caregivers to keep up with the demand. You see help wanted signs at nursing homes and even at area organizations like BFAIR, or Berkshire Family and Individual Resources, which have expanded their services to include elder care. One of the main reasons my mother lives with me, and not in her own home, is because getting overnight help is prohibitive.
In the commonwealth, MassHealth offers Home and Community-based service waivers to those who are eligible. It is based not only on clinical but financial eligibility. It allows long-term services so that an individual can reside at home with 24/7 care. There is even a way for family caregivers to be compensated as a personal care attendant. As families try to juggle their own livelihoods with that of an aging parent, this is — and could be — very beneficial. But even with this waiver, overnight care is restricted as compensation is limited to two hours during the night-time hours of midnight to 6 a.m. The expectation is that the caregiver will be able to sleep, but of course that is not always the case.
For many who are not eligible for such a waiver, an entire life's savings could be spent on taking care of an elderly parent.
The "silver wave" is coming and while many of those seniors will be consumers and help the economy, many more may burden the system, and we need to start preparing and acting before it is too late.
Gillian Jones is an Eagle photographer.
- By Gillian Jones
NORTH ADAMS — I couldn't have been more surprised when a representative from the local Elder Services agency arrived at my home unannounced to investigate and follow up on an anonymous Protective Services report it received in concern of my mom's health and safety.
The gentleman was nice enough, but accustomed to not being well received.
I was further stunned when he requested that mom's caregiver and I leave the room so he could speak to my mom alone.
We obliged but stayed close by enough to hear my mom say, "Jill, can you come here and answer this man's question. I don't know,"
But he did ask her if she felt safe and if she was being harmed in any way. It was a necessary question, but one that was clearly interpreted as ridiculous by my mother.
Eventually, I entered the room, at her request and said, "You realize she has dementia, right?"
The poor guy was just trying to do his job and I understood that and by the end of the visit, we were all more comfortable. He seemed assured that my mother was in a safe environment. He was convinced that the complaint which outlined loose floorboards and un-affixed grab bars in the bathroom was clearly exaggerated. He also asked if we had carbon monoxide detectors, in addition to working smoke detectors, and if my mother's medication was being administered properly.
"Sometimes she refuses to take it, but usually we get it in her eventually," I said.
Trying to wrap my head around the whole experience has taken some time.
As I try to take on the responsibility of caring for my mom, I have received so much positive response and support from the community and the various agencies. This anonymous report has left me dumbfounded.
While I now believe that it was either a disgruntled caregiver or close relative that made the complaint, I am still trying to understand what they were trying to accomplish.
Even though my mom has only been living with me in my home since March, I have been taking care of her for over 20 years, when her only sister, with whom she made a home, passed away and my brother moved to the West Coast. In the last five years I have taken on more responsibility as she stopped driving and became less mobile. We've always been there for one another. She made me her health care proxy and power of attorney in a legal document, but that was only invoked by a physician last year after a stroke left her cognitively impaired and no longer able to make decisions for herself.
NOTHING TO HIDE
While I am flattered that she put her trust in me, it is not a job I ever expected to have to take on. But I am glad that she had the foresight to do so in such a legal fashion.
It is an important position that I am embracing and taking seriously, on top of a career that has been my primary focus for over 25 years.
Why anyone would want to file a complaint against me in the care of my mother still eludes me. However, I am not concerned. I have nothing to hide. I am very conscientious in the care for my mom. I am so much happier taking care of her than allowing her to languish in a nursing home. And frankly, I am confident that the caregivers and I are doing a better job in the comfort of my home.
If the person who filed the complaint would have voiced their concerns, I surely would have entertained them. My mom's safety and happiness is key, not just for us humans but the six cats and one dog that reside with us. There are a lot of souls to take care of.
I am grateful that such safeguards are in place to provide accountability to some of the dangerous homes where true elder abuse or neglect is occurring. And as for the person or persons who reported us, I am not rattled because I am proud of the home I keep and not only because I myself live here. Everyone seems to enjoy being in our home, and I maintain a safe, friendly, environment for all that enter.
Still, I have to grapple with the "anonymous" individual that felt it was necessary to make the report. If it was the disgruntled caregiver, I am not as concerned since that person is no longer working with us. But as for the close family member, well that is more complicated.
Family in general is so complicated and messy. How do I recover from such an accusation when it comes from within the family? That is more difficult.
I think about what my mother would do. I asked her what she thought, as I suspected who the family member was. She simply said, "Tell them to knock it off!" She also said she would write a letter and put it in the mail so that this family member would know that she is OK.
While she is suffering from dementia, I believe that she means what she says. I just hope that this family member is willing to listen.
While taking care of my mom is hard enough, I never thought a report from Elder Protective Services would be filed. But now that that is out of the way, I can get back to the business of taking care of my mom.
Gillian Jones is an Eagle photographer. Her email is gjones@berkshireeagle.com. This is her third op-ed column on caregiving.
- By Gillian Jones
WILLIAMSTOWN — Is it more economical to take care of an elderly parent at home, or put them in a skilled nursing facility? That is the question.
While either side will claim victory over the other, the reality is, it is actually much less expensive to take care of an elderly parent at home, albeit it more time consuming and complex for the family or those closely involved.
Because of the misconception of home care being more expensive, many don't even consider it. Therefore there are many elders residing in skilled nursing facilities who could probably live at home. Many people have told me they found out their parents may have been eligible to live at home, instead of a skilled nursing facility, only after they have passed away.
Medicaid is the lowest priced payor source for skilled nursing facilities which means lower reimbursement rates, and with the substandard care in many facilities due to under-staffing, home care is a considerably more viable option. And in our own Berkshire County, Sweet Brook in Williamstown was rated by a federal agency as one of the poorest quality facilities in the country according to a Berkshire Eagle story by Haven Orecchio-Egresitz on March 4.
Medicaid is historically thought of as paying for nursing home care only. Usually the co-payment paid by the resident is their total monthly income, from Social Security or other sources. But modern Medicaid programs offer care options outside of nursing homes, in the home or primary place of residence.
Many feel they cannot take care of their parents and that a nursing home is the only choice and perhaps for some, that is the case. Often it is a family member who has to step in and take care of an elderly parent or disabled family member. And that family member often does so at great sacrifice.
PAY FAMILY MEMBERS
But what many don't realize is that even family members can be compensated to take care of elderly parents through various programs. And if the elderly have to be cared for anyway, why not compensate family members for the same job, if they are willing and able, especially if it costs less to taxpayers?
According to the website Paying for Senior Care, home and community based services, or waivers allow states to pay for care and support services for individuals residing outside of nursing homes. Commonly, they pay for personal care (assistance with activities of daily living, such as eating, dressing, and mobility) and chore services provided for elderly or disabled persons who live in their homes or in the homes of family members.
According to Medicaid.gov the Money Follows the Person (MFP) Rebalancing Demonstration Grant helps states rebalance their Medicaid long-term care systems. Over 75,151 people with chronic conditions and disabilities have transitioned from institutions back into the community through MFP programs as of December 2016. The Affordable Care Act of 2010 strengthened and expanded the MFP program allowing more states to apply. There are currently 43 states and the District of Columbia participating in the demonstration.
Determining Medicaid or MassHealth eligibility can offer many options for home care.
Furthermore, additional paid caregivers can give relief to family members so they can work, or just get a break, when they are not caring for their loved one. Even programs like adult day health can offer daily respite to family members. And once in a while, a short stay at a nursing home can provide additional respite for caregivers.
Home care is certain to give your loved one better and more personalized care than that received in a facility. And seniors who live at home generally have a better quality of life.
And what is more important to the economy is that caregiving creates jobs! And right now the demand for qualified caregivers is high, whether they are nurses, PCA's or CNA's.
The African proverb that it "takes a village to raise a child" suggests that an entire community of people must interact with children for those children to experience and grow in a safe environment. Shouldn't that adage extend to our elderly population who deserve to experience the same safe environment during the the twilight of their life?
Gillian Jones is an Eagle digital visual journalist who is writing an ongoing series of opinion page pieces on caregiving. Her email is gjones@berkshireeagle.com.
- By Gillian Jones
NORTH ADAMS — It's embarrassing to admit how many cats I live with. It was nothing I ever expected to happen, but as households meld, my mom's and mine, our combined feline population moved to one location and my crazy cat lady story begins.
It can best be described by comparison to "The Brady Bunch" TV series. My mom, her three cats, my dog, three cats and me.
Shortly after my cat population doubled, I noticed a huge sign along West Main Street in North Adams which read something like, "Grandma put in nursing home. Need to find homes for her cats." I wished I had stopped to take a photo of the sign, and unfortunately when I went back it was gone. Perhaps the cats found homes?
I grew up with felines most of my life. But for nearly 20 years, I lived completely cat-free. I only got a cat, Beatrice, after my beloved dog Dante died. One of my former students thought Beatrice should have a friend, so she gave me Lucy, and then Mr. Cat needed a home, and by that time, I couldn't say no.
I should have known that my mom's three cats would have to be figured into the equation at some point, but honestly I wasn't even thinking about it.
It was in January of 2017 my 84-year-old mother, and her three cats moved in with me while her home was being renovated. We coexisted for about six weeks and by that time, I found myself very attached to them.
The cats remained with me while mom resided in a nursing home for nearly a year. When she moved back in with me in early 2018, the cats had already become quite comfortable in my home. Now I can hardly imagine my home without them.
While many have said I should have tried to "re-home" the cats or put them up for adoption, I couldn't imagine doing that. I wouldn't be able to live with myself if they were destroyed, instead of adopted. It's just wasn't an option. There are so many senior cats in shelters already. They are hard to find homes for. Everyone wants a kitten. The same goes for dogs too.
To say having six cats and a dog is a challenge is an understatement. Vet bills, food, medications and complicated relationships especially between all the animals is a just a fraction of the fun. From a half a dozen litter boxes that have to be cleaned daily to cat food dishes on the floor and vomit! More than anything, it has really cramped my travel as finding care for the cats for more than a couple of nights is difficult.
But truly the best part of living with cats is my mom's interaction with them. She reacts to them, talks to them, smiles and laughs. They bring her comfort and I have seen her anxiety be relieved with their presence. They also take turns sleeping with her at night.
When she resided in the nursing home, each one of her cats visited her there, in addition to my dog. The facility allowed pets to visit and I saw the positive effect the animals had, not only my mother but on the other residents. Honestly it brought a tear to my eye and joy to my heart.
As for pets and the elderly, the debate over whether a cat or dog is better continues.
"Cats are helpful for companionship without affecting the limited mobility some of the seniors have. We are finding that some of the housing that seniors are in, like apartments and condos, are more open to cats than dogs," says Susan Kurowski, the Pets for the Elderly Foundation general manager. "Cats are easy to hold on your lap and so many people, especially those who live alone, need the touch and cuddling provided by cats who need to be cuddled."
From where I stand, my cats have a pretty good life and they are strictly indoor cats. They seem to spend most of their days lounging around, snuggling with one another and sleeping. If reincarnation is real, then I'd like to definitely come back as a lucky house cat.
Gillian Jones is an Eagle digital visual journalist who is writing an ongoing series of opinion page pieces on caregiving. Her email is gjones@berkshireeagle.com.
- By Gillian Jones, The Berkshire Eagle
NORTH ADAMS — When I was a little girl, playing with my dolls, I always imagined that I'd be a mom someday. While my life went in another direction as I followed my dreams and had a career, I have at times lamented not being a mom. However in the last couple of years, I have found myself using those untapped skills and applying them to taking care of my mom who is 86 and suffering from dementia.
"Home is Where my Mom is," reads the wall hanging on the wall above my mom's bed in the living room of my home. My home revolves around my mom.
While the notion of taking care of an elderly parent is one that might make some cringe, it has become a gift for me, for the single most important person in my life. Not only did she give birth to and raise me, but she has shown me a love that is truly unconditional. For that, I am truly lucky and grateful.
I realize that not everyone has good things to say about their mother. Many mothers become moms "by accident," and do not embrace the role well. There are a multitude of complex reasons why mothers and their children don't get along. Some mothers have done terrible, unthinkable things. Many children don't even talk to their mothers never mind take them in and care for them in the twilight of their life.
I know I am fortunate to have had a mom that truly wanted to be a mom and was supportive of me. No mom is perfect, but my mom did the best she could. As a single mom from the time I was six and my brother was two, she always advocated for us and put her children first.
Her own relationship with her mom was strained and complex at times. My grandmother and grandfather divorced shortly after my mother was born so my mom never had much of a father figure in her life. As the youngest child, her mom expected her to stay home after graduating from high school and support her. This was not a plan my mother had any intention of following. Against the wishes of her mother, she left home and went to live with her older sister, Shirley, with whom she made a home for many years.
For many years, my grandmother didn't speak to my mother or her sister. I guess my grandmother was a master of the "silent treatment." Fortunately my mom never, ever used the silent treatment with us.
'YOU WERE WANTED'
By the time my mother met and married my dad, she was in her mid-30s. When she had me, she was in her late-30s and from what I understand from my Aunt Shirley, Mom was more than ready to settle down and start a family. They say that older parents are often more patient and better prepared to be parents, even if they aren't as youthful. I think that is true in my case.
In Hulu's dystopian drama "The Handmaid's Tale," based on Margaret Atwood's 1985 novel, June Osborne, a.k.a Offred, is the main character. When we meet June's mother Holly, in a flashback in the second season, the viewer sees a feminist mother. The episode delves into the strained relationship, as Holly is disappointed with June for not doing more with her life.
"I was 37 when I had you. You were wanted," Holly says to June.
That statement seems to sum up how my mom must have felt about having me. At the time, her pregnancy was considered risky and geriatric for her advanced maternal age. But I believe she wanted to be a mother with all her heart. She told me about the time she held a baby for the first time and was so overwhelmed by it. Even now, she smiles whenever she sees a baby, whether it is in person or on the television.
While my mom's own attempt at a nuclear family didn't work out like she had hoped, she continued to do her best to raise us the best way she knew how. Challenging at times, as being a single mother is, she sacrificed much.
So while I don't expect everyone to understand how I can take on the responsibility of caring for my mom while trying to work full-time, preserve my career, and try to live my life, I cannot imagine not doing it. Also, I wouldn't be able to do it without incredible help from others.
I hope I can mother my mom in the same fashion as my mom mothered me. I take comfort in that and I hope she does, too, as she experiences a familiar type of caring. She deserves it.
Every day, I can see my mom fading as dementia and aging takes her from this world. I don't know what lies ahead exactly, except the inevitable, but what many people tell me is that I won't have any regrets that I cared for her, as she did for me.
Gillian L. Jones is a digital visual journalist for The Eagle and has been writing opinion page columns on care-giving. Her email is gjones@berkshireeagle.com.
- By Gillian Jones, The Berkshire Eagle
NORTH ADAMS — "Mom! Mom! Ma!" I call to my mother in the next room. She doesn't answer.
"Rita!" I exclaim.
"What?" she replies FINALLY, but only after I've said her given name.
My mom's name is Rita, but, until recently, I've only ever called her by some derivative of mother. Ma, mom, mommy, mum, mother are all the terms I use to call her. Now she sometimes doesn't even respond when I call her by those familiar names, instead looking blankly into space.
I remember the first time I heard nurses and aides use her proper name in the nursing home. Now our caregivers use her name all the time at home.
"How are you doing, Rita? Are you in pain, Rita? Are you hungry, Rita?
My mom's given name is Rita and while I've always known that, I've never called her, or even referred to her, as Rita ... until now.
A RELATIVE, MAYBE?
Recently in a moment of confusion, she told me she didn't have any children. I tried not to take it personally, after all she has dementia and cannot help it. I smiled and wondered who she thought I was. She says "our mother," often, when referring to my grandmother, her mother. I usually just go along, or at least try to. Sometimes I want to get inside her head and imagine her world at that moment. Am I at least a relative, a sister or cousin?
"Jill ... Jill ... Gillian! Where are you?" she calls from the bathroom.
"I'm right here mom!" I say. "I'm not going anywhere."
"Come here, Jill!" she cries.
Then when I go to her and walk away slightly, she cries more.
"Where are you going? Don't leave me," she cries.
Now, I've gotten to hate hearing my own name! Sometimes she calls me incessantly and doesn't seem to remember that she saw me just a moment ago.
"I'm making you lunch Rita! I'm feeding the cats! You are not alone! I am here with you!"
And then there is the way she sometimes says my name, which is desperate, full of fear and anxiety.
"Jiiiilllllll! Giiiillllliiiiaaaan!"
"Yes, I am right here," I say, trying hard to assure her.
My name Gillian and nickname Jill, has always been confusing. Gillian is not spelled Jillian! Gillian is pronounced with a soft G or J sound, not a hard G, and Jill is with a J not a G. Gill is what a fish uses to breathe with. Confused? Most people are. My dad said even the priest at my baptism pronounced my name with a hard G and he had to correct him. I just tell most people that my name is the same as the actress Gillian Anderson of "The X-Files."
As for my mom, I am using more nicknames or terms of endearment for her. Love, dear, my sweet, Miss Rita, Mrs. Jones, my friend, are just a few. When I was young, she sometimes called me slim because I was so skinny and taller than her. Usually she called me that when she needed me to get something for her from a high cabinet in the kitchen. Now she points at my big belly, my mid-life crisis, and makes a critical comment. I laugh and say that I am middle aged and even starting to suffer from menopausal symptoms.
"Are you older than me?" she asks.
Recently she pointed at Dan, my boyfriend, and called him "Baldy." Fortunately Dan has had a smooth head for a while now and is good-natured about it.
In this new reality, I find myself saying "Rita" way more often than "Mom" now. When I refer to or speak to her, I often use her name, not her title, as I have my whole life.
"Did Rita eat? Did Rita take her meds? What kind of mood is Rita in?" I ask or text, "Is Rita in bed yet?"
I suppose it is more efficient to say her name, even though "my mom" has the same number of syllables — but it is more letters to write.
TRYING OUT NAMES
"Ma? Why are you calling me ma when I'm your sister," she said recently when my brother was talking to her on the phone.
"Hi Ma," he must have just said in greeting, like he's always done.
I wonder about what it will be like if she forgets me altogether. People have said that it can happen. Perhaps I will have to make up a brand new name for myself. I could also have fun trying on different ones. Emma, Olivia, Ava, Isabella, Sophia, Charlotte, Mia or Amelia are just some of the most popular girls names for this year, according to the internet.
Calling my mom by her name, and being comfortable with it, might also be the beginning of the process of me getting ready to let her go.
An Eagle digital visual journalist, Gillian Jones is writing a monthly oped series on caregiving. Her email is gjones@berkshireeagle.com.
- By Gillian L. Jones
NORTH ADAMS —"You definitely don't want to take care of your mom," said an attorney who was helping me to weigh my options and prepare paperwork for my mom's extended nursing home stay in 2017, "It will drive you crazy!"
Those words often haunt me as I have taken on the task of caring for my 86-year-old mother, who lives with me and is suffering from dementia.
As I live with the stress of daily life, in a job which ranks in the top ten as one of the most stressful jobs, it is crazy for me to think that I can handle taking care of my mom too.
And the truth is, I am probably nuts.
"You're amazing! I don't know how you do it," people have said to me if they know me or they read this monthly column.
I don't know how I do it either. But honestly, how can I not do it?
I've written about how my single mom brought us up. She was a good mom. I love her dearly. She worked for 20 years until she had me at age 37. Then she stayed at home until I was 13, and she went back into the workforce. In 1983, she was the first job hunter to be placed in Berkshire County's Women's Services Center Program.
I am now the age she was back then and I have lived my life quite differently. I've never married or had children as I've been nurturing my career as a photojournalist in the newspaper industry for the last 27 years. I cannot imagine not working and I love my job. For my mom, taking care of us was a job that she did and absolutely wanted. I see many of my friends who struggle to take care of their children, and try to work, often having to choose one or the other. Many women quit because when they work, they are just paying for the child care itself, so it's "just a wash." But for many women it is often worth their sanity and self-worth just having a job outside of the home, in the real world.
I have no doubt that the stress of child rearing was exhausting for my mom. Sometimes I could see it. Sometimes I could feel it. It made a huge impact on me — apparently enough not to do it.
NOT GIVING UP
"You can always put her in a nursing home if it gets to be too much," a caring friend will say to me.
Did my mom send me "back to the stork," or put me up for adoption when it got to be too much? She didn't give up on me, so how can I do that to her? Okay, so I have a career, more work responsibilities than she ever had, and she is my mom, not my child. Unless we can no longer care for her at home, or her condition makes it impossible to do so, at home is where I hope she will stay.
Respite stays in the nursing home, when I am not able to secure overnight care for a few days, are hard enough. While I know she is being left with trained professionals, the experience is difficult for her and me, even if ultimately she doesn't remember it.
And while I try to maintain my stamina so I can be productive in my life and job, sometimes my body takes over and I either get very sick, or suffer from physical pain which I know is a manifestation of doing more than I can handle.
I carry all my stress in my neck and shoulders. It comes from carrying cameras and other accessories as well from standing and sitting for too long, like when I drive from one end of Berkshire County to the other. While I cannot tell you how many times I have worked with pain, sometimes I simply cannot function, especially when medication makes it unsafe to do so. These days it seems like every medication causes drowsiness and affects the ability to safely operate machinery, or a motor vehicle. And I hate having to call out. I'd always rather be working and busy. And sometimes it is just necessary for me to rest.
Recently I found myself so exhausted and even depressed, a common side-effect of caregiving, that I literally had a fit of sobbing in my mom's room at the dementia ward as I was bringing in her belongings. The fit was prior to dropping her off, so she did not actually see me lose it. The short stay or respite care was for a few days so I could get away to my boyfriend's annual family reunion in mid-July in Connecticut.
To my dismay, upon my return, I felt no more rested and — even more depressed.
I've been "burning the candle at both ends," for a while now, some have told me, and it comes with consequences. Am I going a bit crazy? I sure feel like I might be.
I know that my mom's remaining time on this earth is short. I also know that I am not alone in my situation. So many people struggle with caregiving, whether it is for an elderly parent, a person with a disability or special needs, or even parents who get exhausted from child-rearing.
I know I need to take care better care of myself and I am trying. I'm not walking as much since my dog passed away, and while I often walk the dogs of my friends, it isn't as consistent. Making some time to participate in caregiver support groups, exercising more, and engaging in some therapy are just some of the things I am looking into.
Someday I expect I'll look back on this time in my life, recognize the challenge I faced, and feel no regret. Perhaps I'll even feel a sense of relief and be proud that I managed to survive. I can only hope so.
Gillian L. Jones is a photojournalist for The Eagle and has been writing opinion page columns on care-giving. Her email is gjones@berkshireeagle.com.
- By Gillian Jones
WILLIAMSTOWN — I am my mom's health care proxy and power of attorney. I am her eldest child and have always lived close by. My younger brother grew up in the Berkshires but moved to San Francisco over 20 years ago.
What if I wasn't my mom's primary caregiver? What if my sibling was the primary caregiver and I didn't live nearby, I wonder what it would be like? Hmmmm .
According to the Family Caregiver Alliance, the percentage of family or informal caregivers who are women range from 53 to 68 percent. My parents were happy to have two children, one of each gender. But for the purposes of this tale, I am going to imagine that I have a sister instead of a brother. I'm not being sexist as I know there are many male caregivers. Honestly, I kind of just always wanted to have a sister.
How would I be to my sister if she was the primary caregiver and I was able to live my life free from the constraints of caregiving? Would I be supportive?
Well for starters, I'd be so grateful for my sister. Whatever issues we may have had growing up would be gone. Even if she wore all my clothes and stole my boyfriends, I'd surely forgive her. That silly nonsense is in the past! I'd probably call her at least once a week and see how she was doing. I'd ask her if there was anything that she or mom needed. Whether it was money, supplies or time, I'd give her anything that she needed.
While I would help financially with the daily care of our mother, I would also show my absolute appreciation to my sister. I'd give her gift certificates for yoga classes, massages and meals at area restaurants so she could relax and find time for herself.
During my vacations, I would probably coordinate with her and give her a break so that she could get away. I'd use my time off to go and visit my mom and appreciate the time I had with her.
I'd surely respect the choices my sister made in regard to our mom's care. While I would appreciate being included and would offer any input, I would defer to her better judgement since she was closer and had more experience.
For the purpose of this tale, I am going to imagine that like my brother, in real life, I live on the other side of the continent. But if I lived closer, I would do all those things described above and even offer to give her weekly caregiving breaks and spend as much time as I could with our mother and share the responsibility.
Would I feel a bit guilty that my sister was taking on the brunt of the responsibility? Yes, I would. But I wouldn't let that guilt take hold of me and take it out on my sister, mom or anyone else. And if I really had a problem, I'd probably get some therapy and work it out.
I'd likely also educate myself on what my mom was experiencing and what lay ahead as the dementia progresses. I'd also be mindful of my sister's health and happiness. I'd be prepared to help her even after our mother passes away. Whether it is going through all of mom's stuff in her house and making funeral arrangements, I'd be there for her. In fact, I might even take over for her and give her a break.
Many people have great families that take turns being the role of caregiving for an elderly parent or parents. Those families cooperate and spread the burden around. Those families still struggle but they do it together. Yet others are abandoned by siblings and other family members as they take on the overwhelming responsibility of caring for an aging parent. It's a job that few want to take on. It is probably a lot easier to just place their elderly parents in an assisted living facility or nursing home.
It's easy for me to say that I'd be the best support system to my imaginary sister. If I had a sister and she was my mom's primary caregiver, I'd like to believe that I would be a rock for her. I'd respect the sacrifice she is making and do my best to shoulder the burden. But in this reality, I am the primary caregiver to my aging, demented, 86-year-old mother. It would be so very nice if I had a sister like me.
An Eagle digital visual journalist, Gillian Jones is writing a monthly op-ed series on caregiving. Her email is gjones@berkshireeagle.com.
- By Gillian Jones
WILLIAMSTOWN — While I have no idea if my mom has a favorite child, of all the caregivers we have, I am likely her first choice.
"Where's Jill?" my mom cries, as a caregiver tries to assist her.
"She's at work," I hear the caregiver reply from the next room. A little "fiblet" for sure, but not entirely untrue. I'm usually scrambling to get to work as a staff photographer for The Berkshire Eagle. My dream job since I first became a journalist, working at the North Adams Transcript from 1992-2014.
It has been challenging, but I have worked too hard to get to this point in my career and I'm not giving up the job of a lifetime.
"Where are you going?" my mom asks, as I stand at the door holding all my photography gear.
"To work, Mom," I reply.
"Okay," she says with a disappointed look on her face.
ROLE REVERSAL
I'm sure the feelings are no different for a parent going to work and leaving their child with a sitter or at daycare. I have a vivid memory of my mom leaving me with my aunt to go out to dinner, when I was young, and I remember how anxious I was.
Not only do I need to work, but I love to work, and I hope to do it long after my mom passes on.
While my mom stayed home and took care of me and my brother, that is not a viable option for me.
We have had countless women taking care of my mom over the last couple of years. All of them are trained and some even have other consumers they care for. I am not specially trained and have only ever taken care of my mom in this manner.
A good caregiver is not only helping my mom, but ultimately helping me. When I come home from work at 9 p.m. or so, it is great when my mom is already in bed. But many times she is not, which is alright. I think she wants to make sure I get home okay. Once a mother, always a mother. She usually goes to bed a short time later, but even if she doesn't, I enjoy spending time with her.
It is nice to come home to a clean house with no dirty dishes in the sink, clean floors and the laundry all washed and folded. When that is the case, I always make sure I express an attitude of gratitude to our caregiver.
I try to make sure that when a caregiver begins their shift, that chores are in the works. Many appreciate that because it gives them something to do when they get here.
I am still having a hard time telling them what to do, but I am learning. I guess I just figure they will see what needs to be done and do it. Every caregiver is different. Some have rearranged my kitchen cabinets, and that is just fine with me. There is quite a bit of down time with my mom, and often she snoozes in her chair or in bed, which must get incredibly boring. Having a television with cable, Netflix and Amazon, providing so many channels to choose from does help fight the boredom, I hope.
A good caregiver should not come to work when they are sick. That's the last thing my mom and I need! Most abide by that as they are not doing anyone a favor, including themselves. They should rest and get better. However, the same does not apply for me, since my mom and I live together. Like a parent, when they are sick, they usually don't get a break from taking care of their children.
THE MOM BUSINESS
When a caregiver cannot work, it is almost impossible to get relief staff from the agency. So I am relying on another caregiver to work a double shift, or I must take on the responsibility, and often that requires me to call out of work. The Domino Effect is certainly at play here and the impact goes far beyond just me and my mom. But there is no doubt that my mom is happy that I can stay home with her.
And if a caregiver is a parent, they often must call out of work when their child is sick, or a babysitter is sick or unable to work. When school is cancelled, parents must often scramble to find care for their kids, or they simply cannot work. Right now winter storms are also a huge factor. One of our caregivers drives up from Pittsfield and does not have an all-wheel drive vehicle.
For the first time in my life, I feel not only like a parent, but a manager of this business which is tasked with taking care of my mom. I am at the mercy of our caregivers who have their own complex lives. For an independent woman like myself, I am learning to depend on others, which is challenging. My job always came first, but now I have to consider my responsibility to my mom.
I don't know if I am a particularly good caregiver, but to my mom, I am a familiar face, and she prefers me, at least for now.
Gillian L. Jones is a digital visual journalist.
- By Gillian Jones
WILLIAMSTOWN — "Don't be a martyr for our mother. She doesn't want that," the email read, from a sibling on the other side of the continent, over 2,400 miles away.
The caregiver was trying to share their common humanity with her sibling during this unprecedented time in our history. As an essential worker, the caregiver is not only doing her regular job, but trying to navigate around this new world during a pandemic, with chronic stress, unlike she's ever experienced before while continuing to care for their elderly mother.
She wanted to impart some of her perspective as she shared her challenges. She wasn't looking for sympathy or advice, just some moral support.
As much as he claims he wants to help, it feels more like he wants to control things from afar. After communicating with his mother, he relays to his sibling or caregiver what his mom expressed to him, as if they don't already know what her needs are. When she gets sick or takes a fall, he inquires how more safeguards can be in place so it never happens again. With gravity a constant, perhaps they should consider sending their elderly mom into outer space where there is less gravitational force, or tying her to her chair or bed so she cannot move about on her own, just in case the bed or chair alarm malfunctions.
While the caregivers are providing consistent care for their mother and are grateful to be essential workers, how can they not experience the stress of it all, with burnout looming on the horizon?
While caring for an elderly woman with dementia in her own well-kept, comfortable home may seem like a cushy gig compared to all the other essential jobs, the job of a home health aide is still a challenging one.
Just the other day, my mother told me that one of our caregivers "was trying to kill her."
I wanted to tell her that no one wanted to kill her, and that we are in the midst of a pandemic. While COVID-19 probably wants to take her life, or at the very least make her terribly sick, we are taking every precaution to keep her healthy and safe.
When it comes to taking care of an elderly parent, there are probably many caregivers who feel like or are perceived as "martyrs." While a martyr in this sense is not the traditional definition of "a person who willingly suffers being put to death for a cause," it is more in line with "a person who endures great suffering on behalf of a belief, principle or cause."
Caring for my mother at home, instead of having her live her last days in a nursing home, is certainly a principle, but I wouldn't say that I am willing to die for it. Sacrificing a lot, well sure — I am and I'm not alone in that. It's also very challenging more often than not. Mostly, caring for my mother is a gift.
Should those on the front lines during this pandemic be called martyrs? I think most of us view them as heroes. Should we call them martyrs because they are doing a dangerous job? Maybe they have a death wish? How could anyone be so selfless?
When it comes to caring for an elderly parent, no one rushes to the opportunity. More often than not, the responsibility falls on the child who is geographically close, has no children, or has nothing better to do. But the adult child who takes on the job of caregiver to an elderly parent does so because it is the right thing to do. There is undoubtedly some self-sacrifice involved and perhaps others will view them as a martyr, but more likely than not, they should be praised for what they are — a warrior on the front lines caring for our elderly, and dare I say, a hero.
Caregivers of all kinds should be hailed as heroes. If you are a caregiver draw strength from that and continue being the brave soldier that you are.
An Eagle digital visual journalist, Gillian Jones is writing a monthly op-ed series on caregiving. Her email is gjones@berkshireeagle.com.
- By Gillian Jones
WILLIAMSTOWN — I have confessed in this space that I have used "fiblets" to give ease to my mother, who is suffering from dementia.
But lately I have gone beyond what I ever expected I'd fabricate to give my mom some peace and get her to do what we need her to do for her own well-being.
"Mom, Melissa and Marty are my friends," I said referring to our two main caregivers.
"Well they may be your friends, but they aren't mine," she responded.
Then came the idea.
Blood is thicker than water. Family bonds cannot be denied.
That is when I started telling her that our caregivers were members of our family. And while perhaps they are not family she recalls, I assure her that they are undeniably my family.
So now Marty and Melissa have become aunt Marty, cousin Melissa and newcomer Abigail is cousin Abby. My mom seems more comfortable with this and honestly I am OK with it since they feel like family anyway.
But my narration goes further and deeper.
"Where is mother?" she asks, referring to her mother and my grandmother. I pause for a moment because she has been dead for over 30 years.
"Is she at work at the mill?" she inquires further.
"Oh which mill?" I ask. "I forget." My mom shrugs.
"Uh, actually she's out on a date!" I blurt out.
My poor grandmother divorced my grandfather shortly after my mom was born. Rumors are he was more than a bit flirty with the ladies, and was a notorious storyteller. He once showed me a scar on his leg and said he was shot at by the police. He may have been a bootlegger during prohibition in the 1920s, but I'll never know for sure.
"Oh," my mom answers somewhat surprised but reacting like it isn't within the realm of responsibility.
"He's a really nice gentleman," I add, speaking of this fantasy date for my Victorian era grandmother. "She'll be out late."
"Will she be home when I get there?" she asks. "I don't want to walk home in the dark."
"Oh no, Rita, you are spending the night here," I say. She shakes her head as if I said something impossible, so I say "Let me call her and ask if it is OK if you stay here tonight."
I pick up the phone, pretend to dial and then have an imaginary conversation with my dead grandmother, as I hear a dial tone droning in the ear piece.
"Hey Gram, hi ... yeah good ... so Rita is going to spend the night here. Is that OK? Oh ... good I'll tell her, OK, bye. Enjoy your date. Sorry to bug you," I say and then hang up the phone. "She says it is all right if you spend the night. She'll see you tomorrow. She says she loves you." My mom seems content and smiles as I say this. She has the best smile and I see it nearly every time I tell her I love her. It's probably the single most thing I will miss most about her when she is gone.
Recently in what is almost a daily, futile effort to get my mom out of bed, I told her that there was a bear outside in the yard. Of course there wasn't, but our caregiver played along and it motivated her to get herself out of bed and into the bathroom where we could take care of her daily needs, and by the end of it she forgot all about the bear. We've used this tactic on more than one occasion and it has always worked. I guess my mom really wants to see a bear!
I know my storytelling and "fiblets" come from my very early childhood.
When I was five or so, I had a good friend who had freckles. She was Irish and a redhead with the last name McCarthy. We were in kindergarten class together. Apparently I envied her freckles and wanted some, too.
One day my mom told me that if I ate lettuce, I would get freckles.
Apparently, she really wanted me to eat lettuce.
As an adult, I love to eat salads and even grow lettuce in my garden. Thanks, Mom, for knowing what was best for me, even if you had to fib a little to do it.
Gillian Jones, an Eagle digital visual journalist, is writing a monthly op-ed series on caregiving. Her email is gjones@berkshireeagle.com.
- By Gillian Jones
WILLIAMSTOWN — As I held her hand, with my brother on FaceTime from San Francisco, my mother died May 25, at the Williamstown Commons. After a long battle with vascular dementia, her suffering came to an end. She was 88 years old.
With my mom’s final wishes being respected, I have been planning how her celebration of life will be conducted with all the details of her Mass and burial. I’ve never planned a funeral. I’ve never even planned a wedding. I’ve planned a few birthday parties and numerous photo exhibits.
I am getting an education beyond caring for an elderly parent to what is involved in planning a funeral and I’m sure there is more to come as I handle the intricacies of her estate.
While in the thick of taking care of my mom, I was exhausted and heavy with the burden of responsibility as I tried to have a full-time job — and some kind of life for myself. I was literally working upwards of 80 hours a week. One of my friends, who was gravely concerned about me, sent me an article about caregiver burnout. It was very informative and I learned that, to put it mildly, I was on my way to being toast!
Now, I feel lighter. I think the anticipatory grief over the last four years is helping me to cope better than I could have imagined. I know there is much work ahead, but I accomplished my primary mission. And for that, I am truly proud.
Trying to ease the indignity of growing old and making my mom comfortable these last few years took a village. From her doctors to her vital caregivers, including myself, we did the best we could. The agencies that helped us along the way gave us great support. It wasn’t always easy, but we got through it.
As I was told many times by many people who took care of their parents, I will feel no regret for the inherent sacrifice it would take — and indeed I do not.
While I wish I had more counsel on the handling of other matters concerning her estate, I have learned some valuable lessons which I hope to share with others in future columns so that they can avoid the same hardship.
I am so lucky that I was able to take care of my mom and keep her at home for an entire year during the pandemic. And to be able to be with my mother when she took her last breath was a gift I will always cherish.
My heart truly breaks for those who were unable to visit their loved ones, in nursing homes, and be with them at the end.
Now that I am closing a chapter of my life, the world is awakening from the pandemic and things are starting to get back to normal. I thought my grief might impact that joy, but to my surprise, so far, it hasn’t.
- By Gillian Jones
NORTH ADAMS — It has been over a month since my mom died. And you know what? I am doing OK.
I mean, I really am doing OK. Not just OK, but actually kind of good, and that surprises me.
The support I have received from my friends, colleagues and subscribers to The Eagle, who read my previous column, has been truly amazing. I have learned that my column, about my experience of caring for my mom, has touched so many people that I ever could have imagined.
Those who care for their parents or have cared for their parents have said that, through my column, they followed my journey for the last three years. Many have even said that they took solace in my words and found my truth to be theirs as well. My soul couldn’t be happier to hear that.
As a journalist it is important to shine light into the darkness, whether it is investigative work or sharing an intimate experience like caring for an elderly parent. To shine a light on something that society doesn’t talk about brings it into the spotlight and perhaps even facilitates positive change.
My lens on the world
Furthermore, as a photojournalist, I have had the privilege of capturing people’s lives.
Whether it is a joyous celebration like graduation or a tragedy like a car accident or fire, it is my job to photograph those events.
To share my intimate experience is not only humbling but hopefully informs people that my empathy is genuine. It is never my intention to sensationalize their experiences. In other words, documenting their tragedy has never given me any benefit or gain.
To take photographs of my mom as she was dying seemed like a natural thing for me to do. I wanted to share my experience with my friends, family and others.
I even found myself taking photographs and videos with my iPhone at her calling hours, funeral Mass and at the cemetery.
I suppose I wanted to share the photos with my father, brother who is estranged, and other friends and family who could not be in attendance.
Photography is my art and expressing myself is so absolutely necessary.
In a sense even this column has been, and will continue to be, an outlet for me.
So it seems weird not to be sorrowful about my mom being gone. To say I miss her is odd. I’ve been missing her for the last four years as dementia was slowly taking her mind and even her personality.
I didn’t realize this until I was looking through my archive for photos for two digital frames that were on display at her calling hours, and found a video from 2008.
My brother had come to visit and I was experimenting with the video setting on my new digital SLR camera. The act of shooting the video was so insignificant at the time. I might have even deleted it. But I am so glad I didn’t.
The opportunity to see my mom as I remembered her was amazing. Seeing my brother, who is estranged unfortunately, was also reminiscent. Two of my dogs and my mom’s late cats were also in the video and I guess that is when I realized that even after people die they are really still with us.
Life, and death, imitating art
The poem, “Death Is Nothing At All” by Henry Scott Holland is often read at funerals. I found the poem written in my mom’s handwriting on a piece of paper, on the day after her death. I found it while looking for something else. The poem brought me so much peace. I know that my mom would not want me to be sorrowful.
During my mom’s funeral, the Rev. William F. Cyr read the poem and spoke about its meaning. By divine intervention, Father Cyr officiated over my mom’s funeral because he was filling in for Father McDonagh, who was on vacation. Father Cyr knew my mom, and also officiated over the funeral Mass for my aunt, my mom’s sister, when she died in the last century. His personal memories of my mom and my aunt, and how they were inseparable as sisters and devoted to their faith, were heartfelt and so touching.
Everything about my mom’s last days were as they should have been. Her celebration of life was perfect.
While I would have gladly taken care of her if she continued to live, I am at peace knowing that she is no longer tethered to her mortal coil. She is free — and so am I. I will honor her by continuing to live my best life, by shining light into the darkness and trying to make a difference in the world in whatever small way I can.
- By Gillian Jones
NORTH ADAMS — The summer of 2021 flew by, as summers in The Berkshires often do, but this summer was the first one ever without my beloved mother, who died in May.
The void left by my mom’s death is still pretty devastating, but I am doing OK, or at least as well as can be expected.
I haven’t been able to finish writing a column and submit it for the last couple of months. It isn’t that I haven’t tried, but there is still so much to process, and do, as I figure out how my life goes on after so much has changed.
My last column was about my COVID discovery and what seemed like an end to this pandemic. Now the outlook is much different, as it seems we are far from the end of this plague, with even more risk looming.
It’s a relief not to have to worry about my mom’s well-being now that she has passed away. I still feel a sense of accomplishment in getting her through the worst of the pandemic before the vaccine and getting her vaccinated when we were able.
People in this community have been so wonderful. I am eternally grateful for the outpouring of support. My tributes to her and our journey together written in this space are far from over.
Many people have shared their experiences with me about losing their mom. Some have even said it is something they have yet to get over so many years later.
It is a slow process for sure. It’s been just over four months, but it just as easily could have been a year ago or last week.
Life goes on. Things change and yet so much remains the same.
For at least the last five years, my life revolved around my mom. I am still getting used to not having her alive and on earth, as I did for over 50 years of my life. At first I couldn’t even walk into a grocery store without thinking about what I needed to buy for her, in addition to my own household. Now I find myself going to the market a lot less than I did before.
I am also working on trying to change patterns of coping that I relied on for years, when the stress and pressure of my life was too much to handle at times and certain escape seemed necessary for my survival.
While I have been experiencing anxiety on a pretty regular basis now, I am certain I am not alone, especially with the ongoing pandemic. I can still remember being a small child and the trauma of my mom and dad going out to dinner with relatives and leaving me behind with a family member. The anxiety was traumatic for me. The separation from my mother, who was a stay-at-home mom, was overwhelming. While I certainly don’t feel that as a 50-something-year-old adult, I believe the trauma I felt then is still buried deep in my subconscious somewhere.
When I was taking care of my mom, I took solace in telling myself, and others, that the situation wasn’t going to last forever. That helped me get through it, and now that I am in the light at the end of that tunnel, I am glad I had that attitude.
Perhaps that is the exact same strategy I need to employ for the next year or two.
Things are even more uncertain than usual, in the world and at home, but it is temporary. Sure there is always going to be something to worry about, or a dark tunnel to navigate but there is always light at the end of it, however long that journey may be. I believe that is what it is to have hope.
NORTH ADAMS — As I approach the one-year anniversary of my mom’s death, and my first Mother’s Day without her, I continue to mourn her in new and different ways. Sometimes, I wonder if the deep pain of the loss will ever be truly alleviated.
When my mom first died, I remember feeling OK. “I’m doing alright,” I’d tell people. I knew she was no longer suffering as she “shuffled off her mortal coil.” I was even relieved to no longer be carrying the overwhelming burden of her care.
Her death was anticipated. Because she suffered from dementia and was in her late 80s, I had been actively mourning her loss for years before her death.
But for the last couple of months, it surprised me to be feeling even more sadness bubble up. Sneaking up on me at times, it causes anxiety and interrupts my daily life. It is uncomfortable, and I’m beginning to learn how to live with it.
I’ve never experienced this kind of loss before even though I have mourned the deaths of many people and pets. Many of the human deaths were untimely, and some even died by their own hand, so the shock was jarring.
“Time heals all wounds,” they say, and perhaps down the road, it may.
Grief is a sign that we loved, and I know how lucky I am to feel that sorrow, because I loved so deeply and that love was unconditionally returned. I also know that I was lucky to have my mother in my life for such a long time. I didn’t lose her when I was a child or young adult. But as a good friend told me recently, grief is not a contest. Your feelings are your own and you are entitled to them. You cannot compare any one loss with others.
As I read about the stages of grief and the reality that everyone is different and mourns as such, I continue to ponder the biggest loss of my entire life.
The five stages of grief which stem from a model first presented in the book, “On Death and Dying,” by Elisabeth Kubler-Ross in 1969, include denial, anger, bargaining, depression and acceptance.
As a society we try to compartmentalize our common human experiences and find ways to explain it methodically. But everyone is different and we cannot gauge our grief by some scientific formula.
It is hard to believe she is gone and I sometimes forget. But I certainly don’t deny that. She was a constant in my life for more than 50 years.
While I am not angry that she is dead, I’m more frustrated with certain people like my brother and my father, who are emotionally unable, and unwilling, to share a common grief with me.
I wouldn’t say that I would make a bargain to bring her back to life, especially in the state that she was in, riddled with dementia and suffering in a body she had long outlived.
Now as for depression, I had been feeling it pretty intensely for the last couple of months. The feelings of sadness were complicated, and some days were so intense that it was debilitating. Not even the distraction of work could propel me forward. Fortunately, I am starting to feel better, but uncertain of what the future holds with these unpredictable feelings.
It’s been hard to share my grief with friends whose lives are as full and busy as my own. Furthermore, no one who hasn’t lost their mother understands what I am going through, so I’m reluctant to share it with them right now. However, I have shared tears with strangers and acquaintances who have also lost their mother. Most reveal that the grief they have for a parent who has died still plagues them — many years later.
“Will it get any easier?” I ask rhetorically.
Over time I will likely adjust to my “new normal,” and accept that my grief for my beloved mother will probably last for the rest of my life. After all, I still remember all those I have loved and lost. Most cross my mind at least once a day. But the sadness is not as painful as it once was.
Eventually, I hope it will become easier to accept the grief and instead bask in the memory of my mother, who she was and the good times we shared.
In my 30 years of documenting the Berkshires as a photojournalist, I have captured people during their best of times and, unfortunately, at their very worst.
From graduations and proms to high school sports championships, I have also had to document the tragedies of accidents, fires and other mishaps that are often part of the human condition. I have tried to do that with care, compassion, tact and understanding, channeling my own sensitive nature despite sometimes being accused of preying on the misfortune of others, as those in the media often are.
To take 30 years of documentary photos and come up with a curated exhibit that somehow represents that span of time is a daunting task. Access to some images dictated their ability to be included. But combing through hundreds of photos was a task that was tedious at times, but mostly it was nostalgic.
In 2012, I curated a 20-year exhibit of photographs from my career at The North Adams Transcript. It took me over a year to work on. I scanned negatives, from the archive that I had access to, looked through digital files, and finally made prints which I later framed for a month-long gallery exhibit at MCLA’s Gallery 51 in downtown North Adams. As a photojournalist whose work is mostly seen in newsprint, it was great to show images in a "fine art" format. All those scanned negatives are now part of my digital archive, from which the majority of this retrospective is drawn from.
Ten years later, much has changed. I’ve been a staff photographer at The Berkshire Eagle for eight of those years, following the closing of the North Adams Transcript in 2014. In addition to working for The Berkshire Eagle, I have also worked at The Bennington Banner in Vermont, and am a regular contributor to the Associated Press Photo Service. I've won an award or two. I illustrated the book, "B is for Berkshires," by Islandport Press, which contains some archive photos from The North Adams Transcript and The Berkshire Eagle.
My archive of photos is vast and incomplete. Many early digital images were lost due to grave computer system malfunctions and a lack of reliable storage. In the early days we backed up images on floppy discs, zip drives and compact discs before moving to more conventional, and reliable, back-up drives and online storage.
In 1992 when I began working as a journalist, I had been a college graduate for just about a year. My only experience in photojournalism was at my college newspaper, The Beacon, at North Adams State College, now the Massachusetts College of Liberal Arts. I had been the paper's photo editor in the fall of 1990. It was the toughest job I ever had up to that point, but I loved it. Even when I was no longer on the staff, and not getting college credit, I regularly submitted photos to the paper for publication.
In those days, I was shooting film which had to be developed. Color film and slide film had to go to the photo lab to be processed as I never learned to process color film, unlike my peers at The Berkshire Eagle. When it came to black-and-white film, I could process it myself in a darkroom. While I had graduated in 1991, my college professor, Fred Johns, continued to give me access to the college darkroom so that I could hone my craft and keep the passion alive as I worked a retail job.
It was sheer luck that when I finally dropped off my resume and clips to Transcript editor and publisher David Nahan, he had just lost his chief photographer.
I began in mid-June and worked part-time until August, when I was hired full-time with benefits for a modest $6 an hour. I learned how to half-tone photos and after the pages were pasted together. I would shoot them to make the negatives that would then be used to make the plates for the printing press. I gained respect for deadlines and understood that the job was not over after I submitted my prints.
The darkroom aspect of photography was a huge part of my job. I processed everyone's film, in addition to my own. Most mornings I would develop up to a half a dozen rolls of film. I was like a cook in the kitchen, a darkroom attendant, serving the developing and printing needs of the entire newsroom and advertising staff.
People often ask me if I miss shooting film. Honestly, I don't. I'm not a fine art photographer. I'm a journalist and digital is perfect for that. I also really love seeing my photos in a world as it truly is — in color. I can barely remember what it was like to shoot in strictly black and white.
Around the mid 1990s, I began scanning the black-and-white prints I developed into Adobe Photoshop. Later I scanned the negatives. It meant less time in the darkroom and more time sitting at a computer.
We started to use our first digital camera for news in about 1996. Because we were an afternoon paper with a late morning deadline, I could then shoot something that was razor close to our deadline. It was convenient, but in the early days, digital cameras were slow. I would choose the moment to capture, press the shutter and there would be a pause before the photo was taken. It was frustrating!
Digital cameras started to get a bit better and in the late 1990s we were issued the Nikon Coolpix 990 with its unique swivel design and two additional "screw on" mounted lenses — a telephoto and a wide angle. I had to look through the screen on the back. I could hold the camera above my head or on the ground and still see what I was photographing. It still wasn't as fast as my film single lens reflex camera, so it was sometimes necessary to use my film camera for the variety of lenses and speed. In September of 1999, the newspaper began printing in color. Black and white photos was reserved for inside pages only, but most were taken digitally.
I used my film camera to photograph an airshow at Harriman West Airport in North Adams in 1999. It was there that I witnessed a horrific accident in which two bi-planes doing maneuvers crashed in mid-air killing the pilots. I was on auto-pilot as a man on the tarmac told me to jump on the back of his motorcycle and we rode to the scene.
After I took the photographs, I drove to Ritz Camera store in The Berkshire Mall to have the color film developed and then I scanned the negatives at the office.
By the fall of 2000, we were issued the first professional digital single lens reflex with lenses. The Nikon D1 did everything my SLR did. It was a great digital camera and it started my journey out of the darkroom for good. While I still had to develop the film of reporters who used their film cameras, I was in the darkroom less and less. The digital age was upon us. Cell phones that took photos were still a few years away.
With independence from darkroom duties, I had more time, so I began shooting sports in about 2001. Since then I have shot every sport Berkshire County has to offer, in every season.
The darkroom disappeared in 2011, when The Transcript building on American Legion Drive was sold and our much smaller office moved into a downtown storefront on Main Street in North Adams. The Transcript was dissolved in 2014 and the North County Bureau of The Berkshire Eagle would move to Union Street for a short time, before settling in our present office at Mass MoCA.
This job has been a distinct privilege. For those considering a job like this, it is not a 9-to-5 job. In the early days of my career, the Transcript had no Associated Press Photo Service, so it was my responsibility to provide nearly all of the photos in the paper. It was all consuming.
A job as a photojournalist is a challenging one especially if you are looking to have a family, be able to support them and have a life outside of work. At least it was for me. As a woman there is a lot of sacrifice for a career in this field, but the rewards are beyond anything I could have imagined. After 30 years of doing this work, I can honestly say that I have no regrets. I hope to continue this work for as long as I am able to.
In 2001, when I was 31, The Transcript did a special section to celebrate Northern Berkshire County's 50 most influential people. To my surprise, I was named as one of those people.
"If a picture tells a thousand words, then the thousands of photos Gillian Jones, the chief photographer of the North Adams Transcript has taken are worth millions. Through her lens, Jones has captured the faces, places and major events of Northern Berkshire County for the past nine years. Gillian's work in photography shows the portraits of life that cannot be described in words," Transcript Managing Editor Kevin Moran said. "Her photos are a reflection of our daily lives here and inform us on a daily basis. They provide us with the opportunity to see our neighbors, our leaders, our successes and our tragedies — people and events that we're not present to see in person, but are available for all to experience, thanks to Gillian. In essence, what Gillian sees and photographs becomes a part of our local historical record that generations in the future will rely upon to provide context and definition about the world in which we live today."
More like this...
Gillian Jones
staff photographer
Gillian Jones has been a staff photographer and columnist for the Berkshire Eagle since 2014. She began her journalism career at The North Adams Transcript in 1992.
