My husband, Paul, and I married in 2007 when I was 44 and he was 55. It was the first marriage for both of us. He was diagnosed with Alzheimer’s in about 2012.
I cared for him at home as long as I could, while working full time and raising our daughter, whom I had adopted from Russia in 2003. Finally, when he began the stage of being up all night, I had to place him in a memory care unit. He lived there about three years, until he died in November 2018.
Making Life Worthwhile
In July 2013, we celebrated Paul’s birthday in a special way. By that point, things meant little to him, but he did tend to remember experiences. So, that was why my gift to him was parasailing over Grand Traverse Bay in Michigan. That was about 18 months before he needed full-time care, but Paul did indeed remember that parasailing experience much longer than any “object” I could have given him.
Near the end, my husband was mostly uncommunicative, and it was difficult to know if he knew who we were or not. I read somewhere that everyone has things that make their life worthwhile. So, with Paul, I tried to think of things he enjoyed, especially after he moved into memory care.
Walking was one of the things he most enjoyed, so we went on walks, around the facility, indoors and out. He also enjoyed having me read to him, so I would read stories from Reminisce or Guideposts or the Bible. Later on, when neither of those things were possible anymore, I would bring him a Pepsi and sometimes a favorite snack from the nearby convenience store, because I knew he really enjoyed those things.
Getting Creative
I learned to meet Paul where he was, especially before he moved. Once, he was up during the night (in the middle of winter!) saying, “Cars are going through the house; we have to get out of here!” I sat on the edge of the bed with him, and when he told me another “car” was “coming” I stomped quickly on the floor and asked, “Did I get it?” Then I told him, “If they’re that small, just stomp on them!” He seemed to realize how silly it was at that point, and was willing to go back to sleep.
It’s important to find humor in whatever you can. Oh, so hard sometimes, but if you can find the funny side of an event, it helps a lot.
On one of those nights in the winter when Paul was up in the middle of the night because something bad was going on or was going to happen, he told me, “There’s a terrible smell in here. We’ve got to get out!” Recalling the episode of the cars coming though the house, I first sniffed and said I couldn’t smell anything, but I opened the window “just in case.” (It was January!) Then I “called” city hall and “learned” the factory in town had been “burning something,” but they were done and it was okay. There was no danger. After that, he was very willing to return to bed.
It’s kind of amazing to me, now, how creative I could be when necessary. I am not a creative person at all, but I guess we can all rise to the occasion if we have to!
Thankful
Two years or more after Paul moved into the memory care facility, they invited families to eat Thanksgiving Dinner with their loved one. For me, this was very exhausting, as my husband needed a great deal of help with meals, and, of course, there was very little conversation we could have. This was just a year before he died, so he probably was in the late stages of Alzheimer’s even then.
But after our dinner, as an aide was helping Paul in the bathroom, she asked him what the best part of this Thanksgiving was. He said, “Spending it with my wife and daughter.”
I could hardly believe it. He knew us, he knew our relationship, and he still loved us and spending time with us!
You are so right – finding humor and reasons to laugh together is so important! I found some additional helpful advice in this article for the times when laughter is harder to come by. These ideas can help ensure the home environment is as calming as can be: https://www.hiredhandshomecare.com/5-ways-to-calm-agitation-in-alzheimers/