Still Stage One--What It's Like

Every person with dementia adapts to memory problems in different ways. Not sure what the stages of dementia are precisely (there are many descriptions of stages and many kinds of dementia), but I thought about our communication prompted by the Alzheimer's Reading Room (link at right).

We use a clipboard where I have typed the daily schedule. My husband has to check off things on it (take the dog out, have breakfast WITH pills, ask Carol if she had her pills, has she fed the dog) and it lists where I am substitute teaching or teaching a class for DUI offenders, when I will be home and what we are doing in the evening. This strategy has helped both of us--me because DH doesn't repeat questions often. Originally this clipboard list was his idea. He even likes this typed schedule when I am home all day.

Some TV news shows keep running the same news. He doesn't get it the first time and the news is repeated. I just can't keep watching the same thing over and over--but he can. I am around the corner in the den usually. He will say to me, "Carol, are you still kicking and breathing?"

I also call him when I get someplace to say I have safely arrived. Increasingly he is "shadowing" me. He wants to know where I am at all times because of that short-term memory and because this gives him security in a world that is becoming confusing to him.

Do our means of communication always work? No. I call him and remind him to have lunch, even though this is on this clipboard. It is the same lunch he is used to: a plate in the refrigerator with a bagged sandwich, yogurt and coconut oil fudge. Yesterday I called him twice during the day to remind him of his lunch. When I got home, he had not eaten his lunch and was hungry for dinner. He says teasingly, “I have been a bad boy. Am I going to get a whipping?”

I just smile at him and proceed making dinner.  In the evening DH will often say, "I think I asked you this before, but how was your day?” Calmly three or four times I tell him the answer to that question. My communication includes one thought at a time or he will tell me point blank I am not making sense.

Often he will not remember what he has decided (let’s go home and not eat at church, for example) and then later when he is comfortable he will say something different that shows he is enjoying his time at church with people he has known for over twenty years. Sunday afternoon he sweetly told of his love for me to others. Sigh!

Living with a husband with dementia, I have been forced to learn patience and other communication skills and prepare for future changes in our ability to communicate with each other. Yes that routine pays off usually, but we have left the house without his false teeth, or with his forgetting to shave. I have been forced to check-up on those routines.

What we do communicate is that we love each other. Like all couples in a happy marriage we have those rituals that show we love each other. What a privilege it is to be his wife/caregiver!