Three years ago, my lovely man died after many years of living with every possible indignity Alzheimer’s could throw at him. We faced it together, made a partnership pact, clear-eyed up front, to live this time well. We did just that.
A friend recently asked me how I came to my choice to care for him. Without hesitation, then and now, I knew in my heart that to help Rick die well was my sacred duty. I never questioned it. Even in hindsight and having lived that relationship, I would not have done it any other way. I’m not overstated in saying it was the hardest thing I’ve ever done in a very long life. The four years of 24/7 took its toll. Even now, a brief glance by an untrained eye, tells the story that I’m “not right.” I likely never will be “right.” But it has been my choice.
Early on, several of my friends spoke with me privately, told me things like; “no one would do what you’re doing, he wouldn’t want you to suffer, you have your own life to live, institutionalize him and turn the page.” These comments weren’t helpful as I’d already made my decision. What I needed were supportive friends.
And of course, going into something like an Alzheimer’s diagnosis, you can’t know what you’ll be facing. Different of course, but isn’t marriage, parenting, life itself a tremendous unknown? So, I chose my course, and wouldn’t you know, it was likely the very best thing I ever did. Marriage and ours specifically, is never perfect but the final 4 years we worked together as a cohesive team, on the same page with no other real distractions and facing every minute, not just the day, head on and present, were the best years of our life together. I’m so grateful for the gifts we gave each other.
I quickly learned to lie. In my lifetime, I can count on one hand the number of times I’ve lied. Which is a lie, of course, but you get the idea. I’m honest. As his dementia progressed, I needed to evolve to every need instantly. Fighting it, I came to understand that lying helped him and I did not get freaked out. He might say, “Someone is stealing my stuff, my wallet, my money.” And I found if I said, “Not to worry. We have insurance. We’ll get it all back.” It soothed him. Or (always at 2 a.m.), “I want to go home. You need to take me home now.” If I said, “Of course I’ll take you home, but look, it’s really late and everyone at home is asleep. You don’t want to wake them, do you? I’ll take you first thing in the morning.” He’d smile and go back to sleep. We were sweet with each other.
The very best help I had was to be part of a support group, several women living the same reality. Nothing but trust, truth and understanding. Caregiving is emotionally and physically exhausting. I remember at the group one day saying, “I’ve finally found something that feeds my soul. Aren’t we supposed to feed our soul?” Then bursting into tears because, “I can’t remember what it is.”
I remembered later of course, when I sat down to write after Rick went to bed at night. Writing! Something I never knew I wanted to do but found it so personal and private, and necessary. Because if I hadn’t found it, I think my heart would have burst. And that’s another huge gift Rick gave me.