Gillian L. Jones: Going crazy caring for Mom
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 firstname.lastname@example.org.
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