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 by. 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 oped series on caregiving. Her email is firstname.lastname@example.org.