November is National Family Caregivers Month, and I am a family caregiver. As regular readers of this blog know, my husband has Parkinson’s. I don’t dwell on his condition or its impact on me in my posts, but I am definitely a family caregiver, so this month’s recognition is meaningful to me.
Much of my writing focuses on the difficulties pioneers faced crossing the Oregon Trail—the 2,000 miles of harsh terrain, unexpected hardships, and determination required to reach their destination. But endurance and grit aren’t confined to the nineteenth century. Caregivers today face their own challenges, although they are very different from those encountered by emigrants heading west.
One of the hardest parts of becoming my husband’s caregiver has been adjusting to the changes in our relationship as spouses. I’ve become responsible for managing medications, coordinating appointments, and adapting routines to accommodate his physical and mental condition. My husband’s Parkinson’s symptoms often fluctuate throughout the day, sometimes unpredictably, so planning even ordinary activities can be difficult. And I am a planner.
It’s harder to have conversations with him that don’t relate to Parkinson’s. I miss the ease of talking about everyday things without having to consider how his condition might affect the conversation. And as the mix of love, frustration, and worry fills my days, caregiving can sometimes be lonely. Friends and family don’t have the same obligations and limitations. It didn’t help that we moved halfway across the continent, so I have fewer opportunities to see long-time friends.
That is why I have come to appreciate the value of caregiver support groups. In my writing life, I have belonged to critique groups for more than fifteen years. Writing is a solitary activity, and having peers who understand its challenges is invaluable. We help each other improve our craft, but we also serve as sounding boards to discuss the frustrations of creating in the crowded field of publishing.
Caregiver support groups serve a similar purpose, though the issues we discuss are very different. I have participated in both in-person and online caregiver groups, some devoted specifically to Parkinson’s caregivers and others to care partners more broadly. Talking to others with similar experiences to mine gives me the comfort of knowing I am not alone.
Beyond emotional reassurance, these groups are treasure troves of practical advice. Other caregivers have already figured out how to balance treatments and side effects, discovered small tricks to make daily tasks easier, and found resources I didn’t know existed.
Perhaps most importantly, fellow caregivers remind me that it’s all right to need a break from caregiving, to put on my own oxygen mask before helping someone else. My husband reminded me of that principle many years ago, when I was caring for him through a much simpler problem than Parkinson’s—a broken ankle.
On the wagon trains of the 1840s, travelers had to rest their teams and repair their wagons to keep themselves, their animals, and their equipment fit for the journey. Otherwise, they might never reach Oregon. Caregivers, too, need to replenish their resources. Without rest and occasional relief, we risk exhausting ourselves before the journey is over.
I am fortunate to have twelve hours a week of respite care through the Department of Veterans Affairs, which gives me time to go to my own medical appointments, run errands, or take a writing day in a library or coffee shop. I am also able to leave my husband for a couple of hours here and there, knowing that aides in our retirement community can check on him. I’ve come to accept that these times away are not selfish, and I no longer feel guilty taking them. This respite is essential to my well-being and, therefore, to my husband’s well-being.
If you are caring for a loved one during this National Family Caregivers Month, I hope you find time to rest and replenish your energy. I hope you also find a community that understands your journey.
And if you are a reader who knows a caregiver, consider offering to stay with their loved one for an hour, so the caregiver can run an errand, go out for a meal, or simply enjoy some time to themselves.
Have you found comfort or helpful advice through a support group—for caregiving or another life transition?
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I have been a caregiver for my father who had dementia and for four years for a younger man, a paraplegic, who has since passed from cancer. Support groups are really beneficial. I found one online, as well as some good forums to interact with. I’m glad you’re able to get assistance through the VA and your residence. It’s very taxing and you need a life outside of it to keep your sanity, at least in my case.
Cindy, re: “you need a life outside of it to keep your sanity” — I think this is universally true. That’s one reason I’ve continued to write. It keeps me sane!
Theresa
I have been a sole caregiver for my mother and in her last two years and a half I had to leave my home and husband and move with her, as she could not be alone anymore. It is isolating and difficult, and I had no other support than my husband coming twice a week to help me with shopping and heavier chores. I took colouring antistress those years, in order to keep my mind sane. When the pandemic came, I was already isolated for more than half a year…