All Better Now? Not Quite...


Ever since I announced that I don’t have Alzheimer’s, but some other form of cognitive decline, I’ve had friends and acquaintances say things like: “I heard the good news! I’m so happy that you’re better.”

In one way, they’re right, of course. Having a stable cognitive decline of uncertain cause is better than having inevitably progressive Alzheimer’s disease. If “better” means “back to normal,” however, then I am not better. I have by no means regained my cognitive losses.

I notice my impairment in three areas: difficulty in finding the right words, forgetfulness and occasional confusion. The word-finding problem probably annoys me the most. I was an intellectual. I still do some teaching. For me, communicating has always meant finding the precise words to express myself. If I want to tell you I’m feeling “frustrated,” synonyms won’t do it. I don’t mean I’m “irritated,” or “upset” or “disturbed.” I mean I’m frustrated.

In terms of forgetfulness, I can’t count on my memory anymore. “Have we met before?” This is my first question on meeting a new person in church. I just can’t remember, so I ask.

What did we decide at the last meeting? I have no idea. If I hadn’t written it down or reviewed it before today’s meeting, it has disappeared.

What did I agree to do before Sunday? I don’t remember agreeing to do anything. Everything has to be written down and reviewed. Without my calendar, I have no idea what my week looks like.

It is the intermittent confusion, however, that is the most bothersome. I was downtown earlier this week and got off the bus to walk the four blocks to my doctor’s office. I wasn’t lost; I knew exactly where I was. I knew where the office was. Washington, D.C., is laid out in a grid, so there’s no confusion about how the streets go. I ordinarily have a good sense of direction. This time, however, I got completely turned around and got to the office only by guessing.

Several days ago I was helping a friend. She was working 21 hours a week and getting paid $900 a month. What was her hourly wage? This is not college calculus. She is working three hours a day for thirty days in the month, which is $10 an hour. But I got into multiplying 21 hours by four weeks (84 hours) and then trying to estimate the fraction of the fifth week in every month. Soon I had to get my pencil out, and even then I got confused.

None of these things is a big deal. My impairment isn’t getting worse. I’m enjoying myself as much as I ever have.

But I don’t want people to think that I’m cured. I can’t quite explain that, but it has something to do with wanting honest relationships. In a longer conversation with anyone who’s actually interested, of course, it’s not difficult to describe the situation more fully. What bothers me is how to respond to someone in the elevator or when meeting each other at the checkout counter. I think the answer is to suck it up.

It occurs to me that my situation is not that different from many older people with arthritis in their knees, bladder problems, generalized weakness, or widespread aches and pains. Most of the time, when I ask those older folks how they are, I don’t really want to know! I’m not interested in hearing their “organ recital.” I want to express my happiness with their recent successful surgery or hospital discharge or express my concern for them. What I want from them is a smile and, “Oh, I’m doing as well as can be expected.” Or, “It’s going okay.” Or, “yes, I’m happy the surgery went as well as it did.” If they’re smart, those aching older people will make very sure I want to know before they tell me the truth.

It’s no different for me. Usually people want to hear I’m okay, that my life is going well, that I’m relieved about not having Alzheimer’s. They would prefer, at least for the time being, not to enter into my pain. I can deal with it. Mostly.

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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I am glad you posted this. I have a terrible fear of having Alzheimer because my mother, two aunts, and two cousins have it now or have died with the disease (2 are still living). I have had the symptoms you mention. I am glad you don’t have Alzheimer. I have had a couple of mini-mental exams and everything seems okay and my primary MD says I am ok but I just know something is wrong and it is like you and MaryKathleen described. Now I have hope that if I do have some type of cognition impairment, it might not be Alzheimer. Maybe now I can stop the fear and just work with what I have. I have to take care of my mom with Alzheimer and my husband with liver cancer. I need to keep my brain together so I can take care of them. Then I have a brother who has COPD and eye problems and diabetes and I help him a lot also. I know no-one is indispensable but they need me and I want to be there for them. Thank you all for posting.
I have noticed a trend lately that people seem to view things in either black or white with no in between. I recently had surgery for a macular hole and resulting retinal detachment. I was told my vision would return to some degree. I have people constantly asking if my eye is back to 100% though I have told them it is a long recovery and central vision is frequently lost in the effected eye. This always makes me feel like I should be recovering better vision. I wonder if the computer age has somehow led people to see things either one way or the other and that individual human conditions are not considered because of this way of thinking. It is as though people cannot understand anymore all the "in between" factors that usually are there.
This is me!! I don't get confused about where I am or directions YET. I don't now how to explain it, time has no meaning anymore. I have to live by my calendar. I can't explain it which is troublesome in itself. I can't tell you what I did when. I hate it when doctor's ask me, when did you have this or that. Hell, I don't know. I want to do something get busy and forget. I hate it when people discount my problem and say, "Oh, everyone is like that, I forget things too".
Everyone is not like this, I didn't used to be. I can't remember people's names, or nouns. I can describe something, but can't tell you the name. A lady down the street, had us over for New Year's eve. I can't remember her name. Is it Connie, or Carol? I am so frustrated, yes frustrated, over and somewhat scared too. I am 81, I don't want to be a burden to my kids. My husband went to the Chiropractor Wednesday, she asked if I was coming in. Did I have an appointment I forgot to put on the calendar or in my cell phone? I don't know. It is awful.