Return to Normal? 6 Ways We Are Coping with Dementia Caregiving

Never give up. Never stop fighting.

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Spring is finally here! Brighter days are ahead, right? With a new season and the increasing availability of COVID-19 vaccinations comes another opportunity to reflect on our family’s journey and the ways that Dad and I are coping with dementia caregiving.

Winter wasn’t the smoothest of rides. Not only were we stuck at home, but we were often stuck inside, staring at digital screens. Episodes of total confusion were more frequent, often at night, and Grandma seemed to lose interest in and aptitude for her usual independent activities — puzzles and getting up with her walker to use the restroom included. Tensions grew high as we ran low on sleep and fell out of touch with our broader support network, which is an important part of coping with dementia caregiving.

My dad and I were both struggling. It is difficult not to feel overwhelmed, but we’re doing our best to “tackle” what we can change and accept what we cannot. Taking advantage of the warmer weather and the fact that Grandma is fully vaccinated — and everyone in the house is on the path to be — we are taking the following steps to support the well-being of everyone in our home:


Daily Walks


It’s always our goal to take short, daily walks with Grandma through the neighborhood. Who knew something as simple as fresh air could be so rejuvenating? The allure of spending time outside even incentivizes us to stick to the schedule (as opposed to walking in circles around the house or climbing stairs, which, admittedly, we were not very consistent with this winter). We’ve even worked carefully back up to walking hand-in-hand without the walker. I couldn’t be more pleased with the confidence she has regained in her physical abilities, even if that means she sometimes attempts to walk around the house without her walker. 


Online Support


I try to connect regularly with caregiver support groups on Facebook, such as “Dementia Through Daughter’s Eyes” and the Gloria’s Way community. My schedule is hectic, and while I might benefit from an in-person, online, or phone-based support group, it’s not realistic at this point. Reading about other people’s experiences coping with dementia caregiving, some very aligned with my own and others not at all, brings me tremendous comfort. I have spent more than a few nights scrolling through posts, reacting to comments and asking questions of other dementia caregivers. During school and classes I’m surrounded (virtually) by college students who don’t always identify with my caregiving journey and sometimes I need a reminder that I’m not alone. These groups have given me that and so much more.


Journaling


Daily journaling is more of a goal than an accomplishment. When I shared my feelings of exhaustion and turmoil with a close friend and mentor, they suggested I set aside time each day to journal. They encouraged me not to put pressure on myself to write a beautiful essay each day, to just write down my honest feelings. I’ve found the act of putting my thoughts and experiences on paper to be extremely therapeutic and clarifying, but I think I need more structure to actually stick with it. Perhaps I’ll take my friend’s suggestion that I initially resisted: write down one highlight, one low point, and one nice thing someone did for me each day. 


Back to the Gym


Shortly after Grandma moved in and right before the lockdown, my father and I ended our beloved, long-standing tradition of going to the gym several days a week to lift weights and play basketball together. As silly as it might sound, cutting this tradition off cold-turkey felt like we lost a part of ourselves. We felt unhealthy and incomplete. Under safer circumstances, it was time to return to the gym. Fortunately, staff members were very accommodating about allowing grandma to sit in the lobby and watch her favorite movie, a two-part documentary about Frank Sinatra on Netflix, while we exercise. It’s not ideal for anyone — we check on her about every 10-minutes or so —  but it is much needed self-care that helps us be better care partners. 


Adult Day Centers


Grandma is now going to a local adult day center twice a week. This is our most recent development. I’m thrilled that Grandma is getting out of the house, potentially socializing with other people her age, and engaging in stimulating activities. Plus, Dad and I are getting a little respite. But I’m also incredibly nervous. We were, understandably, not allowed inside for a tour due to the pandemic, and it is against policy for a family member to spend a day there with her. Furthermore, Grandma is not able to report back what she did that day or how she felt about it. We have to rely on a paper schedule and her mood upon returning home to know how her day went. If experience is any teacher, we know that riding Paratransit is stressful for her and if she is given the choice, she will lay around all day while she’s there. How are we to know that the program is a good fit for her? How can we gauge if she is getting the care she deserves? I’m still looking for the answers to those questions, but I hope that ongoing communication with staff members over time will increase our confidence. 


Stay Flexible


What we do know is that our winter status quo was just not working. We’ve learned over time that our plans have to be flexible. Some changes, like going to the gym, have come easier than others. The important thing is that we’re committed to trying new things when Grandma’s needs change, and we’re paying attention to my and Dad’s needs, too. Because we love each other, and we know that the best way to take care of Grandma is to take care of ourselves too. 

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