Visiting a Gentleman with Alzheimer’s Disease
My father had been living in residential care facilities since December 2014, when I saw him on six consecutive days during the first week of June 2015. He passed away in August 2015. Official cause of death was determined to be “natural causes.”
The best guess is he has Alzheimer’s Disease (AD), and it is “the late stage.” I have resisted that diagnosis, perhaps because I carry genetic markers that give me a higher than average risk for this costly killer. Or perhaps I cringe at the stigma of dementia, whatever the symptoms or cause.
Whether AD will be my father’s final mortal diagnosis or not: He can’t take care of himself anymore, nor can my mother, nor my family, without constant assistance.
If you have the chance, you should consider visiting him. He is not going to talk one of your legs off. Not even an arm. Whether you stop in for just a few minutes or for a few hours, it will be up to you how long your visit will be.
Tell the staff who you are looking for. If he is not in his room when you arrive, he is probably sitting in the dining room with several of his neighbors.
When you find him, introduce yourself. My mom wanted to know if he would recognize me, so I did not introduce myself. I probably should have said, “Hi, Dad, I am your son, Michael.” You could introduce yourself like that, and it might help him find you in his long long-term memory.
In the dining room, you may pull up a chair and join him if you wish. It is also alright to find a staff person on duty (to whom you should introduce yourself) and ask her to help you get him into his room so you can talk with him. Tell him, “I would like to have a talk with you. Can we go to your room?” He’ll probably be fine with that idea. It takes awhile for the message to go from his ears to the rest of his body to get started standing up, so a staff person can make all of that a bit easier.
General questions such as “How are you doing today?” are fine for starters.
He is not very open to suggestions that sound like someone is telling him what to do. “Do you want to go outside?” is almost always answered with a shake of the head or a simple “no.” But if you phrase it in a way that lets him make his own decision, and lets him take his own time, he might surprise you. For example, “We could go for a walk in the hall, if you want to. I will wait right here with you, and you can stand up when you are ready.” He might nod to that, and look around the room for awhile before you notice he is starting to move. Suddenly he will stand up on his own, with the agility he has had as long as you have ever known him. When he is doing things his own way, in a way that is normal in his perspective (not yours), you might be surprised how graceful he can be.
His short-term memory is shot. It will be a better conversation if you tell him things you remember than if you ask him what he remembers, because he probably won’t remember your question long enough to work up an answer. Asking him what he remembers about this or that is probably going to frustrate both of you. Repeating such questions is not recommended.
When he says something that you don’t understand, it is hard to resist asking him to repeat or clarify, but odds are the conversation will go better if you say, “I’m not sure about that.” Or you can simply agree, and offer a comment of your own that includes a reference to whatever you think he might have said.
People ask him questions all the time, and sometimes he has answers that make perfectly accurate sense, like “Well, I don’t know.” I think you can rely on that.
It is fine to ask him, “Are you warm enough?” If he says “no” (as he often does), you can find a warm shirt in his closet and set it within his reach and his sight. You don’t have to try to put it on him. He will have forgotten you asked a question, but when he’s ready, he will pick it up and look it over. If he starts to put it on, then you can help him get his arms into the sleeves. Let him deal with the buttons. It may take him awhile, and he may not get it quite right, but that’s fine. Anybody can get their buttons mixed up sometimes. It is normal for adults to button their own clothes. Let him have as much of what is left of normal life. This may require you to have more than normal patience, but it will not hurt you, except perhaps in the form of tears shed in empathy — if that is the right euphemism.
When he speaks, the odds are fair it will be something sensible. He might ask you who you are (which is a reasonable thing to ask, after all). He might ask something like “Should we go for a walk?” or “Do you want to sit here?”
Sometimes, he will have a thought, and he will start to speak but after 3 or 4 words, he will forget what he was going to say.
He might speak completely random syllables. I imagine he means to say something sensible but his mind-to-speech drive train is just not in gear most of the time, and as much as he tries, he cannot find the clutch.
He may say things that do not make sense. I heard him tell my mother, very deliberately, “You are shorten. I have a fleet.” She had a good response to that: She smiled and asked, “What are you going to do with it?” He smiled back. Smiling can go a long way toward making a moment more enjoyable for everyone present.
He says things out of the blue that prove he is right there with you. One afternoon when I was visiting him with my mother, after a rather long lapse in the conversation, she closed her eyes and appeared to be dozing. He noticed and said, “Marlene, you should keep awake.” We all smiled about that too.
He will tell you things like, “I drove a tractor. The Lingles had a farm.” This may not mean much to you, but it is probably a fact from long ago.
There are moments when he may respond to something that happened a minute or two before. When that happens, your response should include a smile and eye contact. Do not dawdle with your comment. Try to get it out there if you want to have any chance of keeping the conversation flowing.
Talking with him may teach you things you never knew about short term memory. What happened two seconds ago might just as well have never happened as far as he is concerned. You could say: He forgot more than you’ll ever know about short term memory. Most of the daily conversations we have are forgettable, anyway, except for the fact that the words are shared between people who respect each other, and know how and when to share a smile. Trivial conversations bind us together, so not being able to have them contributes to isolation.
It can be discomforting to share time with someone whose ability to express himself has been stripped away along with his short-term memories. Without ordinary vocal communication, there are fewer distractions to keep us from noticing all the scratching and fidgeting that most of us perform on ourselves most of the time. If not for all the business of talking that we do, we might have time to count how many times our fingers swipe the sides of our noses, scratch the back sides of our heads, cross our legs and arms, fiddle with a bit of fuzz on our laps, and check for what pockets we have and what is in them. Most of us are doing it casually and continuously, but normal as it is, we don’t notice most of the time.
“Pray for Gene on his journey through Alzheimer’s Disease,” the pastor at his church says every Sunday. His old friends at church have picked this euphemism up. It is a lot easier for them to talk about “his hard journey” than it would be to put it into other blunt day-to-day language or the medical terms that sound so precise without expressing what we know in our hearts.
I imagine there is a stream of people appearing before him, saying, “Hi, Gene. I am your sister, Helen. I miss visiting with you.” Or, “I am your brother, DeWayne. I am glad to see you. Have you heard from Lucille?” I imagine that images of a life’s worth of people pass through his thoughts all the time.
AD kills about 85,000 Americans each year. AD kills more of us than diabetes. However, the average American is more likely to die in an accident than from AD. You take your chances just getting up every morning.
AD chews on your autonomy and destroys your short-term memory. Then it goes to work on shrinking the rest of your brain. A mind can hang on through a lot of brain damage, but when AD takes away the ability to swallow, it might as well be sending a summons for the Grim Reaper. It is a terrible, frightening, fatal, and lonely journey he is on, but not an uncommon one.
Sugar Ray Robinson
Still Alice. Empathy. Well. I don’t know.
If you do go visit him, don’t hesitate to say hello to his neighbors. Most of them rarely have visitors.
When you are ready to leave, just say so. “It is time for me to go. It is so nice to see you.” If he enjoyed your visit, you might notice a glint of emotion in his eyes, but he will not argue with you or try to keep you. It is OK to pat his shoulder, or his hand as you depart. He might say “See you later,” but he probably won’t say “Goodbye.” That is a deal he made with someone a long time ago.