A few years ago, I wrote a poem, “I didn’t know,” (Herald, Nov. 13, 2022) that resonated with many. It was about the painful journey of finding a diagnosis of Alzheimer’s for my husband. Life has moved forward, and I want to share what I didn’t expect when his care was more than I or my family could provide.
The first question: To place or not to place? Is it time? Taking care of him was well within my skill set but it was relentless, 24 hours, day after day. The kids helped, but it felt like spit in a bucket. He was resistant to attending an adult day program or a professional caregiver. So it became more a choice about me. But is that right? Isn’t it about him?
My two kids who provided coverage while I took a weekend break discovered caregiving demanding. And did I say, relentless? When I returned, each said, “Mom, it is time to place Dad. He is too much. You don’t have many good years left. You need to take advantage of them and live your life. It is time to place him.”
But placing him in memory care? It seemed a bit extreme and expensive to the tune of $7,000 to $9,000 a month. If he would accept a caregiver, it would be $45 an hour. But even with other caregivers, I didn’t really relinquish responsibilities. An hour or two only whet my appetite for more downtime.
All summer, guilt and grief. The two big “Gs” for caregivers. Feelings that I am abandoning him, I am selfish, I am imprisoning him. I wept all summer.
The second question: Where to place? I interviewed facilities, feeling like a deceitful witch. He could not know or he would be very anxious. Denver or Phoenix? Miserable in winter or miserable in summer? A good decision was hiring a navigator to walk me through facilities and what would best meet his unique needs.
My husband is about 10 years younger than most who reside in memory care. Plus, the majority of people living in memory care are women. We needed a different activity program than the usual puzzles and more men.
Found it in Phoenix. They play cornhole and volleyball. No puzzles. The entire group participates in trivia, bingo, crossword puzzles, Jeopardy. Live musicians perform three to five times a week. And dancing! He never danced before. Can you imagine Spanish lessons for a person with dementia? They may not remember but I now know my colors in Spanish.
I now visit during activity time and participate. It is great fun. I can sing my heart out and dance the bossa nova and no one judges. I have made friends with several residents. I know their names. The staff members are friendly and kind. This is a lot better than I expected. He is better entertained than I could provide.
Professionals said our relationship would change. I would return to the role of a wife instead of a nurse. But I don’t feel like a wife. He can’t be my partner or my lover or my playmate. But he is the embodiment of my memories.
My husband’s life is ending, but the freedom I now have is letting me explore the world again. But it is odd building a new life with him on the periphery. Initially, I felt guilty because I didn’t miss him – at all. After a couple of months, I missed him terribly. I wanted to see him teach our grandkids to ski at Hesperus, maybe coach one of there teams. Not to be.
Today, he said he is having a ball. He is enjoying the people and activities. He dances. He never danced in his life. He even sings. Should I feel guilty for not placing him earlier? He is adapting well. Those two nasty feelings – guilt and grief. Will they ever still?
Pat Demarest is a caregiver and member of the Durango Dementia Coaltion. Visit durangodementiacoalition.org or email durangodementiacoalition@gmail.com to learn more.
