We were doing what we had to do, and Connie agreed, but it was a hard day filled with the sorrow of parting…
This is part of an ongoing series about our family’s experience with dementia. There is no order to it, just observations, reflections and, I hope, some guidance for others on this journey or who may someday begin it. It is not intended as any sort of financial, medical or psychiatric advice. Just one family’s experience…
JAN. 22, 2024. It was moving day…
We had made the decision to move Connie to a memory care unit. The movers had already taken her furniture to the unit and my son had hung her favorite paintings. Our daughter, Andi had flown over from Prague a few days before.
The night before Connie and I had spent our last night together in our apartment. Just before we drifted off to sleep, I heard her voice in the dark.
“I’ve had a good life. I don’t have any regrets.”
I quietly cried myself to sleep.
The next morning, I tried to act like we were going on an adventure. You know, smiles, upbeat, joking around with the kids. I don’t know that I pulled it off because inside I felt…well, it’s hard to put into words.
A friend recommended a book to me, and I bought it and since have hooked up with the author on Facebook. It’s been immensely helpful. It’s called “The Long Goodbye – A Caregiver’s Tale” by John W. Wilson. It’s available on Amazon. John faced a day with his wife like we were facing and the night before, he recorded his thoughts.
“…..on the morrow, my wife will go to a memory care facility, where the 24-hour-a-day care is unrelenting. It’s a small place…..there are 16 beds., a big yard beneath large oaks and a caring staff. She has gone there on several occasions for short breaks, and she appears to be comfortable in the surroundings. I have no idea as to the duration. It may be, with rest and relaxation, I can find a way to bring her home, or it may be this is just how our world ends.
“I’ve gone back and forth between feeling like a Victorian earl squirreling his wife away in an asylum to feeling as though I’ve just rented a long-term storage unit for humans. Everyone, from my counselor to our doctors to our friends and my children say otherwise. They tell me this is good for both of us. I guess it’s nice they have the perspective of distance, and my rational mind agrees with them, and I’d give a friend the same advice.
“But the guilt is there, driven by the idea that while I signed up for better or for worse, somehow I’m running from the worse. I don’t think that’s the case, but the mind can play tricks. I guess that’s why they tell you to get plenty of sleep. Deep breath. Here’s to the future, such as it is.”
ON THE EVE of Jan. 22 I had not yet read John’s book, but later when I came across that passage it felt like I could have written it.
On the morning of Jan. 22 we all drove down to the unit, making small talk, trying to make it sound like this was going to be some kind of wonderful adventure as opposed to a journey into a well-furnished prison with code locks for staff and family to get in and out and keep the residents in.
The staff was there to greet us with smiles and open arms. We walked through the common areas, past residents in wheelchairs, residents slumped over in chairs as if in a sort of memory-loss coma, past vacant stares. From some, the more cogent, we got smiles and questioning faces. Who are these people?
We had lunch together in a side room, then it was time to go. The staff had told us that for the first two days they did not want us coming to visit. They said it was important Connie settle into the new routines of meals, activities, without a lot of distractions. It made sense, but still….
So, after hugs, kisses, we said our short good-byes as she settled into what I couldn’t help but see as a “Long Goodbye,” a journey on which her fellow travelers who surrounded her now gave her living evidence of the stops along the way to whatever the destination was going to be.
We walked out the door. I don’t know what we said, what we talked about or whether we walked in silence as we made our way to the car.
All I know is the walk to the car was the longest walk I ever took, away from the woman I had loved and lain beside for 56 years.
Since that day I have felt guilt, of course. I talked of that in the last post. Like John Wilson, my logical mind knows we made the right decision. But keeping guilt away is hard. I’ve since gone to events without her and tried to enjoy them, but her absence presses in and I feel guilty about smiling, laughing, talking to friends. Sometimes I take her with me, depending on how she feels, and that helps.
But so many days I still feel like I did on that walk to the car through time that had stopped and with a view only of the past where there was light and happiness, and not into a hazy and dark future where I had no idea how I – we – would find our way.
Rich Heiland, has been a reporter, editor, publisher/general manager at daily papers in Texas, Pennsylvania, Illinois, Ohio and New Hampshire. He was part of a Pulitzer Prize-winning team at the Xenia Daily (OH) Daily Gazette, a National Newspaper Association Columnist of the Year. Since 1995 he has operated an international consulting, public speaking and training business specializing in customer service, general management, leadership and staff development with major corporations, organizations, and government. Semi-retired, he and his wife live in West Chester, PA. He can be reached at [email protected].