This has not been an easy summer for me. The physical issues Ralph and I each faced were one thing, but I also found myself a bit overwhelmed.
For one thing, I found myself dividing caregiving energy between Ralph and my grandkids. The summer is difficult for working parents and I was needed more often than usual as a babysitter. I adore the two boys, but at five and one they are a handful. And while Ralph loves the boys too—and they certainly love their “Bop”—he is not helpful. If anything, I have to be on guard, aware of those rare but unfortunate occasions in the past when something they did ticked him off and he reacted at their level, like an angry child.
Now that school is back in session, my caretaking life is less splintered but I am still coming to grips with two other realities.
One is that Ralph is showing small but revealing signs of slippage. His memory of the past has become muddier, while the newest memories slip more quickly out of his grasp. Repetitive conversations are certainly not new, but he not only forgets but can’t quite unravel facts and idea as they’re presented. And his capacity to manage his daily life has weakened. He used to make himself a sandwich for lunch every day. Then it became necessary for me to tell him to have lunch. He’s never hungry unless I remind him he is (although so far he still remembers his desire for daily beer). Now I simply make his lunch. Feeding the dog used to be the one responsibility I could count on Ralph fulfilling. Now I feed the dog. I also make sure Ralph showers. And recently I realized that he puts back on his dirty clothes if I don’t make sure they’re in the hamper and clean clothes are at the ready.
But these changes are not noticeable except to me. He continues to make reasonable, even charming small talk with friends and strangers. And he is physically healthy. I know many other caregiver-spouses facing quicker, steeper descents, so I feel a little guilty complaining about life with still easygoing, still more or less functional Ralph.
But this summer, I felt depleted, less up to managing the daily grind of care. I have felt more lonely. And tired, the reason I have not written much here until now. I think I am coming out of a season of caregiver burnout.
I/We have been dealing with his cognitive impairment for ten years now. Ralph was diagnosed in 2013 but showed very clear symptoms a year earlier. Those early days were highly stressful; although Ralph was able to do so much more than he can now, his capabilities FELT jarringly diminished compared to what he was like before. Words like cognitive impairment and dementia sounded horrific and terrifying. Gradually we adjusted of course. I began to recognize that one day’s new normal would only last for so long before the next level of new normal set in. I adjusted as one set of skills after another disappeared, grass mowing, driving alone, driving at all, playing Jeopardy with the tv, watching tv. I learned to tamp down impatience and to lower expectations. I depended less and less on Ralph for practical help or for meaningful interaction until somewhere along the way we reached the tipping point where Ralph became completely a dependent and I became a caregiver more like parent than spouse.
Over these years I had moments of resentment and sorrow, but also of affection and connection. I also worked hard to maintain my identity. And I felt plenty of support; it didn’t hurt when others told me what a great job I was doing. Most of the last ten years, I’ve been basically in a pretty upbeat state of mind, and kind of proud of my ability to cope.
But sometime during this strained summer (perhaps exacerbated by unending heat and rain), my inner resources shriveled. I just felt worn out. I saw my life narrowing with Ralph’s. I felt angry and alone.
I can write this now because I am feeling better. All it took was a weekend in front of the computer doing bookkeeping of all things. Working with numbers took my attention away from everything else. This morning as I swam my early morning laps, I swished my arms through the water and suddenly realized I felt better, refreshed. I came home and called some friends to reconnect. I chatted with Ralph and stayed relaxed. Halfway through writing this post, I made his lunch and chatted with him some more before making sure he showered. And I still feel good. Hope it last at least a little while.