Gillian Jones: Clinging to a social life while serving as caregiver

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WILLIAMSTOWN — An acquaintance of mine and her sister recently had to put their elderly mother in a skilled nursing facility after caring for their mom at home for several years. At the time she remarked that she wasn't sure what she would do with herself. She said she felt like she didn't have friends anymore.

People always used to ask her to go out but she said she had to refuse their invitations, because of her caregiving responsibilities — so often that they stopped asking.

Before I became a caregiver for my mom, I had a pretty rich social life. When I wasn't working or teaching class, I was a regular at the open mic on Wednesday nights at Bounti-Fare in Adams where I would play guitar and sing. Whether alone or with friends, I was a social butterfly, rarely out till the late night, but having the option if I chose. I had no responsibilities except to myself and a dog or two, as well as a significant other.

STRANGE CONCEPT

Now I am at the mercy of my caregivers. Sometimes they can stay later, sometimes they can't. After all they have their own lives, responsibilities, and even other clients to care for.

"I've got to go home to relieve the caregiver," are the words that frequently exit my mouth when I am out socially.

For someone who never had kids and therefore never needed a sitter, the concept of getting home to take care of another human being is strange and sometimes a real inconvenience. If anything, getting home to "let the dog out," was always a more likely scenario.

My mother cannot be left alone. She requires 24/7 care. I have a bed alarm so I can hear her if she gets up at night, and a live streaming camera which I can access to see her, not unlike a baby or nanny cam.

Sometimes I can get a caregiver to stay late, but it is easier to ask when it is because of work responsibilities and it isn't always feasible for them. Thanks to modern technology, I sometimes file my photos from my laptop in the living room while my mom sits or sleeps nearby. That would not have been possible during the era of film when I spent hours processing film and making prints in a darkroom! However, trying to balance the needs of my mom and file my photos by deadline has caused stress a few times over the last year or so.

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More often than not, I decline social invitations because I am just too tired and don't feel like being social, and I usually have to be home by 9 p.m. Since my column on attending my first caregiver support meeting, I've been contacted by many people who wish to get together socially. While I would love to get together with them and discuss our similar experiences in caregiving, my rigorous work schedule offers me very few opportunities for such indulgences.

I spend most of my free time with my significant other, Dan. We don't live together so we only see each other on our days off, weekends, special occasions and vacations. Often we can't even go out and do things on a Friday or Saturday night, like we used to, because of my work or caregiving responsibilities. Fortunately he is very understanding.

We had decided to get away to New York City for a couple of days around the Labor Day holiday for Dan's birthday. My mom was even scheduled to go in the nursing home during that time. Our getaway plans were scrapped after the contractors said they would be starting the renovation on my bathroom in my home the following week. So in addition to clearing out the bathroom in my house, I had to get my mom's house ready for us to move into.

When I broke the news to Dan, who took it remarkably well, we decided to have a staycation. My mom still went to the nursing home and even had an impromptu visit from my brother.

RARE LUXURY

So for about four nights, when we weren't working on moving, Dan and I had my house completely to ourselves. No mom and no caregivers! While we were busy, we took advantage of the luxury. We could actually sit on the couch and watch TV shows that we liked and there was no bed alarm to wake me up at night.

Since moving into my mom's house I sleep in a full size bed, on the floor, in the bedroom I spent my teenage and early college years. The wallpaper, which I didn't choose, is exactly the same and I share my bed with at least one cat at a time. There is no room for Dan so he stays at my place on the weekends. We make time to be alone and enjoy my home, when we can. As I write this, we have yet to move back, and I find myself enjoying my home, and spending my nights with my mom at hers.

I know that this situation is only a chapter in my life. My friends still keep in touch, even if we don't see each other as often as before. Usually when we get together, no matter how long we've been apart, we seem to pick up right where we left off.

I hope I can regain my social ties when I get my life back someday. Then again, perhaps by the time I am free of all my caregiving duties, my friends will be too busy taking care of their elderly parents.

An Eagle digital visual journalist, Gillian Jones is writing a monthly oped series on caregiving. Her email is gjones@berkshireeagle.com.


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