Dementia

One Foot in the Gravy

Dementia

I have late-onset hydrocephalus. (The official diagnostic term is Normal Pressure Hydrocephalus, or NPH). The disease strikes people in their fifties, sixties and seventies. I was diagnosed about seven years ago, at the age of 68. It has three primary symptoms: Urinary incontinence, a one-way ticket to non-Alzheimer's dementia, and a loss of balance. Physicians have a mnemonic for it: wet, wacko and wobbly. Treatment consists of a shunt, which requires brain surgery. I had a shunt installed in early 2019. It became infected and had to be pulled (more brain surgery) in mid-2019 and replaced in late 2019.

I started this column to chronicle my journey to inevitable death. The line is not straight, and it cannot be accurately predicted beyond over time the trend is inexorably downward. I get worse for a while, and it rebounds, and I am better for a while, then I am worse again. This past week I was much worse for a while.

Sharing

I want to share with you what it feels like to slip into non-Alzheimer's dementia. I am in a brain fog with no compass, no GPS, no means of navigating the terrain. I know people around me are talking to me, but I do not understand that I am expected to respond. I am told things such as “Dinner will be on the table in three minutes,” but the applicability to me simply does not register.

I hear words and if asked to repeat them I can. That does not guarantee comprehension on my part. I can interact with others, but if that interaction extends to doing something, such as standing up, it may not occur. I find myself increasingly weak. I might stand only to sit again immediately. Some forms of assistance are more helpful than others. Before I act, I usually need a clear field. That is, I don’t function well if people are moving around me. Many people offer help to my standing up from my chair or wheelchair. They will start forward as I am standing; all I can do is sit again. It can take a while for a crowd to understand that individuals’ most helpful actions are DO NOTHING.

Complications

I have expressive aphasia. That means that I know what I am supposed to say, what word I’m seeking, but it escapes my grasp. I simply cannot pronounce the word. This is a result of multiple Transient Ischemic Attacks (TIAs) and a couple of Cerebro-Vascular Accidents (CVAs). Those are mini-strokes and strokes.

At my height of ability I spoke German, Spanish, French, Portuguese, Italian, plus some Hindi, Urdu, Arabic, Marshallese and Pohnpeian, and probably a couple of others (Norwegian, e.g.). I have lost most of my facility with language and must search for words and phrases today. We have had workmen in the house who speak only Spanish; I can only effectively communicate with them in English. From 1980 to 2010 I could pass for a native of Latin America; today I am a standard Gringo. I have a long-time friend in Guatemala with whom I correspond. I can no longer write to him in his native language.

A Joke

I did medical school in Germany, in German, and wrote scientific papers in the language. My ability to read the language is shattered. I seriously doubt I could carry on a normal conversation in German today, while 30 years ago I could pass for a native speaker – just not from where I was now. I’m hopeless in Italian today. I can’t even count in Arabic. I may as well be the punchline of the old joke: What do you call someone who speaks two languages? Bilingual. What do you call someone who only speaks one language? An American.

This past week we had a visit from old friends – I’ve known the husband forty-five years, our oldest daughter sang at their eldest daughter’s wedding and our youngest daughter was their middle daughter’s best friend. My wife and the grand dame of the other family are each other’s closest friends. I missed the last day of the visit; I slept through it. At one point I went into our bedroom to use the restroom and found myself asleep on the bed for the rest of the day. At my age I’m getting short on time for visits.