MYSTERY SURROUNDS ALZHEIMER’S DISEASE

Eleven years since diagnosis

AFTER PLACEMENT

I was a caregiver to my husband for six years if I counted from diagnosis on to placement in care. Before diagnosis, what I was then was an observer. An observer of the changes that had been ongoing for a number of years already.

I bet it was two years of me asking him to bring up what we were referring to as “some memory problems” on his then semi-annual visits to his physician. He never did do so. Bring it up. So I finally hand delivered an explanatory letter to his doctor’s office, a letter citing some of the incidents that highlighted what I had been observing.

• He was having problems remembering frequently used phone numbers.

• He kept misplacing items such as keys.

• He had been calling me from his cell phone, lost. It happened numerous times. I would get him to drive to a corner and tell me what the street signs said. I could then direct him to where he would know where he was. Only once that never worked and our son-in-law went on a search mission and found him.

• By 2008 it was noticed, by our close friends, his confusion playing bridge, a game we had played with these friends since we were all in our mid-20’s.

• It was common for him to come home, from his daily morning outings to get a latte, angry that some *#!*!#* driver had deliberately cut him off, or had been aggressively tailgating, or had given him the finger, who knows what else. What I found alarming about all this indignation and downright anger was that he hung on to it all day, sometimes well into the next.

So it looks like his dementia entered our lives, with certainty, by 2008. Diagnosis was in early 2010. Placement in LTC was early 2016. And we are not done yet. My husband is now at the eleven year mark since diagnosis. He is perennially stable, is never any trouble, is never sick and eats everything they feed him.

And I have no clue how long he will remain in this state. Like every single other aspect of this disease, it is a mystery.

He has spent all day, every day in a Broda wheelchair since the spring of 2019, which was when he was no longer steady enough to walk or strong enough to stand up from sitting without endangering himself. Or others. He was initially tried in a standard type wheelchair but, with his stooped posture, it did not provide enough support to keep him upright.

The answer was the Broda. I think of a Broda as a cross between some type of hospital gurney and a lazyboy. It is fully adjustable to all positions, well cushioned and completely manoeuvrable despite its bulk. It does require someone to push it in order to move it.

Chuck immediately took to the Broda — reclined, supported and relaxed, able to view the world around him for the first time in years, he has remained content ever since. (Chuck’s bent over posture had prevented him from seeing little else but the floor in front of him and over the years his upper back and neck muscles had adapted to this position, preventing him from lifting his head to look around even if he had tried to do so.)

My husband is fully dependent on others for all his care. Continuous assistance with all basic activities of daily living are required for his survival.

And his being in the position he is today is exactly how this disease progresses if there are no other health concerns that shorten lifespan. It has followed the predicted path. Incontinence through to no longer being able to use utensils to feed himself, using a walker for balance and fall prevention, and now finding himself permanently residing in a wheelchair, a wheelchair that requires a lift to move him from his bed to the Broda or from the Broda to the bath.

Until a year ago Chuck was still able to get a word or two out every now and then, usually a mini celebration for staff or our family when it happened, especially if it was pertinent to the conversation around him, or if he was able to respond to a question.

One day early last spring he was apparently singing to “Let It Be” during a meal, which resulted in a phone call to me to spread that good news.

I doubt if he speaks at all anymore, but what would I know — since visits in care home were reinstated last summer I have been allowed only one 30 minute, supervised, socially distanced visit per week, which completely limits any ability I may have to judge for myself how he is doing. However, one day last fall when I mentioned to him that I had made an angel food cake, he responded “ummmmm,” letting me know he at least still comprehends some of what is said to him.

But I am guessing that this stable state he has been maintaining since landing in the Broda will end with this illness continuing to shut him down, like him losing the ability to swallow. But there is no telling how it will be for him as the end approaches, or when that may be, except that apparently it will not be anytime soon.

Thirteen years now but who’s counting.