Friends who care are helping me think afresh about my situation
A former colleague who’s writing a book chapter about caregiving asked if I’d complete a questionnaire to give him input. I was glad to do so, and I had a ready answer for one of the questions on his list:
What have others said to you that has been helpful?
I shared with him some golden advice I’ve already discussed in this space: “It’s not her fault.” And, closely related, “Remember, you’re dealing with a disease of the brain.”
“It’s not her fault” is good to repeat when confronted with a particularly frustrating situation:
anxiety that’s difficult to console,
a mess unlike any you’ve ever cleaned up before,
the hunt for a lost object that was in your sight just a moment ago,
embarrassment with guests when your loved one eats from the serving spoon or sips out of someone else’s glass,
shock at a reaction more angry or belligerent than you’ve ever seen from this person before.
It’s not her fault. We must find a way to respond to the disease, not accuse or berate or reject the sufferer who’s likely as confounded by it than we are. Obviously, this is easier said than accomplished, especially at the end of a long day.
“It’s a disease of the brain” is a reminder that you can’t predict what will happen, what incapacity you’ll encounter, or what demeanor you’ll need to deal with. It’s all fluid, not from week to week or day to day, but hour to hour. The pathways in the brain seem not to be consistently compromised—at least not until the final stages of Alzheimer’s.
This creates an unpredictability that challenges how our loved one copes with each day. It’s unlike anything you’ve ever dealt with before. But “it” is the disease. “It” is not her. In the heat of a moment, though, this is easy to forget.
I mentioned both helpful pieces of advice to my friend. But I did not include a list of other statements or questions I’m still taking to heart.
For every loss, find something to replace it.
I heard that advice in my support group one day when we were talking about the unique situation of the caregiver dealing with this chronic, progressive, incurable disease. “It’s death by a thousand paper cuts,” one caregiver had told me years ago. “The Alzheimer’s caregiver deals with a succession of losses,” our group facilitator once observed, “and each loss is an occasion for grief.”
I repeated the observation in our group session, and someone said, “Yes, so for every loss, find something to replace it.”
I’m intrigued by the idea, and I appreciate the input. But frankly, it strikes me as a tall order. Especially when the deepest or most painful of those “thousand paper cuts” represent an emptiness that can’t be filled.
Who will a man with a disabled wife invite to get a little dressed up to go with him to a restaurant a little more special?
Where’s the opportunity to enjoy a fresh or challenging or complicated new TV show?
Is it time to be satisfied watching a movie alone in an empty theater on a Tuesday afternoon while the caregiver is at home with your wife?
Can you learn to concentrate on a book when your sufferer is reading compulsively, out loud, in the chair beside you?
When do you get a good night’s sleep?
Who do you trust with your swears or sobs or doubts or dreams?
How do you replace 50 years of companionship?
All that sounds darker than I really feel. I have, in fact, found many small reasons to be happy. Right now, for example, I’m enjoying a summer afternoon writing outside on the patio of a restaurant, eating a snack paid for with a gift card from a friend. I just invited two couples to join us for brunch Saturday. I’ll be with others Thursday, Friday, and Sunday.
I’d say I’m living with my losses, learning not to curse them, seeking from God something higher than life’s myriad pleasures. But that’s not the same as finding something to replace everything I’m losing.
Nevertheless, I’m still trying, especially when I think about the question a friend asked me over lunch a couple of weeks ago.
What are you doing just for you?
I know I need to work on this because doing for me is actually good for her. When someone told me about an excellent caregiver who had an opening on Mondays, my first thought was, I don’t really need her. I have someone coming on Tuesdays.
But I resisted that impulse and I’m glad I did. For many months now I’ve enjoyed my free Tuesday afternoons more than I would have imagined. And now I’m settling into a new rhythm with the chance for a second half day away from caregiving.
I also continue to volunteer on Friday mornings, thanks to the gracious willingness of two friends to be here with Evelyn. The resulting few hours of independence and interaction with others feed my soul.
I enjoyed a vacation with my son and his family last summer, and I’ll find a way to do something similar again.
Meanwhile, writing this blog is cathartic. I’m praying it makes a difference for some readers, but I also realize I’m doing it for me.
I’m doing a lot, in fact, because I want to, not because our situation forces me. And most of my small pleasures would not be possible if I were trying to face each day on my own strength alone, without the input and help of friends and the sustenance of God.
I hope to write more about that next week, thinking about a couple more comments from friends who care.
Photos by Chinnapong at istockphoto.com and Geoffroy Hauwen and charlesdeluvio on Unsplash