Adventures in Alzheimer's Land...

(Caveat: No two Alzheimer's experiences are exactly the same; this one was ours. - Jay)

Photo credit Edvard Munch - "The Scream" 1893

“ALZ-LAND” as seen vicariously
Through the eyes

of an Alzheimer’s Caregiver…

...

I had a dream...

I have this feeling that I need to go somewhere. I’m not sure why, what’s there or where it is but I’m driven to go there. Let’s call it “home.” I thought I almost had an actual address last night but now I’m not sure if that was perhaps an address from some long-ago memory. Everything I see is new, strange, bizarre sometimes. Strange girls in one house taunt me, sometimes with lewd gestures. One man appears to help me by giving me directions but even that doesn’t help if anything he tells me doesn’t relate to anything I know about. He says, “Just go over there, gesturing, to “Maryland” and then go that way“, gesturing again. I think, “Is he sure? That doesn’t look like the “Maryland” I remember.“ I see several names on street signs but they don’t seem to have any rhyme nor reason or any theme or order that I think they should have. Even the street numbers seem out of whack. I know I haven’t been traveling that long, how can I be so far away? And even if I keep going in the direction I think I should, I always seem to be getting farther away.

Something grabs my arm from behind, makes the hairs on the back of my neck stand on end and sends a chill down my spine. I dare not look because I know it’s too frightening to see. Sometimes I feel frozen. I want to run but my feet won’t move, I want to shout out but my voice won’t come. Suddenly I remember the night before when I was working with my Dad on some projects on the roof. He looked very good for having been deceased for three decades.


Sound familiar? (I hope not)
Am I another one suffering from Alzheimer’s/Dementia?
No I'm not - but I've lived with one for more than thirty years. The above narrative simply recounts many parts of a recent dream that I had, more accurately, a nightmare. I have a similar dream now and then. The specific visual scenarios are always different but the general theme is always the same; Lost, Frightened, Desperate, Confused. Could I subconsciously, perhaps empathetically, be importing my mates dreams or, again more accurately, her reality?

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First Encounters of the Weird Kind -
My first encounter with AD came around 1980. My own “mid-term memory” is a little suspect. Specific details of certain events escape me. I’m not sure that I was even familiar with the terms “Alzheimer’s Disease or Dementia” at that time; I just called it “old and goofy.” I was returning to my boyhood home for some reason which escapes me. My father had passed away a few years earlier and I vaguely remember attending his wake but do not clearly recall the funeral or burial. At any rate, this particular occasion had to do with visiting my step-mother “Aggie”. We were never very close. She had to put up with me in my adolescent years until I left home to “see the world” at the age of 18. I’m sure that I was a “problem child.“ So I flew into town, after being gone for over twenty years. I recall driving to a hospital and seeing to the release of Aggie from there. From the hospital we drove downtown; Aggie wanted to stop by her bank for some reason. I escorted her into the bank and waited for her there. I have no idea what her business was at the bank or what she did there.

From the bank I think we then drove to the cemetery and looked at my dad’s grave for a little while. I‘m thinking that this was the first time that I had seen it. Perhaps not; I may have blocked out the memory of the funeral and burial. From the cemetery we drove home. This was the home where I had lived with Aggie and my dad for a few years while finishing high school. We probably watched some TV and settled in for the night then; her retiring to her bedroom and me going upstairs to what used to be, my bedroom. Around 2:00 am I was awakened by a commotion downstairs. I came down to see Aggie standing there in her soiled undergarments talking to two police officers about how she, “had no idea who this man was and that he was trying to steal her money.” I assume that she had called the police.

Well, I guess the police figured out what was going on. The rest of what I remember is kind of fuzzy. I recall Aggie’s niece, who lived nearby, arriving soon afterwards and more or less taking care of Aggie from then on. I flew back home the next day. The home was subsequently sold by the bank; Aggie was sent back to a care facility and passed away not long after that. I never returned. That was my first encounter with Alzheimer’s Disease.

My next encounter was with my darling bride “Dee”. Dee was always a little “feisty”; moody one would say but fairly normal I think. I liked her that way. A “fighter”, not going to take anyone’s crap. She did have a family history of bipolar disorder which I learned about late in our relationship and which concerned me a little bit. We had been married and together for about thirty years when one day, Dee woke up from a mid-day nap completely confused and disoriented. She had temporarily lost her equilibrium, was bumping into things in her bedroom and could not remember the names of things. She would gesture to the dresser, the bed, the closet and these were all just “things.” “This thing and that thing.” I remember thinking to myself, “Jeepers, Alzheimer’s couldn’t strike suddenly like this could it? Like a bolt of lightning out of the blue?” Well after a while Dee regained her composure but I think her behavior was never quite “normal” after that. A few years later is when I became her full-time caregiver as her ability to perform the functions of daily living decreased severely.

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This is a story about “Dee” (my bride) and “Jay” (me). We were both born in the Midwest USA about six months apart in age and about 350 miles in distance. Little did we know what life had in store for us. Howard Hughes had just set a transcontinental air flight record and Amelia Earhart disappeared on one of the last legs of her round-the-world jaunt. Joe Louis defeated James Braddock for the World Heavyweight boxing title and one year later won the title again in one of the most famous and politically-charged fights of all time, “Louis vs. Schmeling.“ The ill-fated Hindenburg rigid airship ended it’s trans-Atlantic flight in a flaming disaster. (“Oh, the humanity.”) Despite these propaganda setbacks, Adolph Hitler was well on his way to infamy, determined to save the world with his Grand Plan.

On the home front, gasoline and some foodstuffs would soon be rationed and metal would be salvaged as the U.S. joined the War effort in Europe. Dee gave up her tricycle for the metal in it. Dad got a job as a timekeeper at a defense plant and Mom put her education to work as a R.N. The Iceman came once a week and he could tell how much ice you wanted by the sign in your front window. Milk was delivered to your doorstep in glass bottles with cardboard tops by the Milkman and the Coalman came when you called him. He backed his truck up in the yard beside the house and dumped his load of coal down your coal chute which led down to the basement where the coal bin was, next to the furnace.

But enough of nostalgia...that was then and this is now.

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CAREGIVING 101 -
I was asked by a young lady who is soon to be caring for her husband with EOAD (Early Onset Alzheimer’s Disease), “What did you find was the hardest part of care giving?” That’s a tough question; it‘s hard to pick just one aspect that would be the hardest. I guess I would have to say that “toileting“ would rank right up there as one of the most unpleasant aspects if not the hardest. The initial aspects of toileting are not too bad. This would be when they still are mentally and physically able to use a toilet as one normally would. This still requires some vigilance in the area of “after-wiping”, “hitting the target”, re-dressing and hand-washing. At one point I had to duct tape the toilet seat cover in the UP position after a rather messy episode of “going” with the seat cover down.

You see, you can take nothing for granted and I mean nothing. As the Alz patient continues to lose their cognitive skills, the whole world is a brand-new place to them each and every day, each and every minute actually. Things, procedures, rules, if you will, that are learned early in our lives and are second nature to us “normal people”, no longer apply in “Alz-Land.”

A side note in the area of toileting: This would also fall under the category of “Things that they do sometimes that astound you.“ One day I noticed that a fresh roll of toilet paper had been installed on the holder. I knew that I didn’t do it and so I asked Joe (staying with us) if he did. He said that he hadn’t either. That meant that Dee must have done it. When I think of ALL the complicated details that entail the simple act of changing a toilet paper roll, and to think that she actually did it…well it just “blew me away.“

To continue, once “incontinence” sets in things get a little more, shall we say, intense. I delayed using “Depends” a little longer than I should have and spent much time emptying, rinsing out and laundering fine under garments. Once we started using the “adult diapers”, they were disposable and saved a bit of hassle with the laundering part anyway. Still the diapers were not the “hold-all-cure-all”. As “emergencies“ became more and more frequent, I spent a lot of time doing bedding once again and spot-cleaning the carpeting and thoroughly cleaning the bathroom floor. If medications taken sometimes tend to induce constipation OR diarrhea then it becomes even more intense.

One of our trips to the ER (Hospital Urgent Care) was for (not sure what you call it) impacted colon? Before going I tried everything I could think of including a “Fleet” enema. Anyway after an X-ray at the ER they said that there wasn’t much they could do and sent us home with a bottle of Magnesium Citrate. If you’ve never had any experience with this stuff all I can say is, “Handle with care and be prepared.“ It’s a small bottle, maybe 8 ounces, has kind of a citrus taste and you should drink the whole contents. I’ve had experience with this stuff and half a bottle is fine for me, thank you. It’s a fast acting (I mean FAST) and thorough laxative and the effects may go on for hours if not days.

On the other end of the spectrum; diarrhea, well that entails a different sort of abdominal distress for the patient and just becomes, let’s say “a poopie marathon” for the caregiver.
Later on, once your Loved One becomes more or less bedridden, well that‘s a whole new ballgame. I was amazed later at the Home, when I watched the pros go through this procedure. With years of training and experience, not to mention way more physical strength than I had, the CNAs made it look easy. Boy what I wouldn’t have given to have had a standard hospital bed and the proper protective under-pads. Anyway you do what needs to be done with what you have. They need to be changed of course, preferably as soon as and as frequently as necessary. Then they have to be cleaned thoroughly, washed, dried and powdered maybe. Fresh diapers put on and, of course, if bedding has been soiled, that will have to be cleaned and changed as well. If you’ve had children, think back to changing your baby’s diaper - same thing only this baby is much bigger and heavier. Don’t be put off or alarmed at the crying either.
Have some empathy - how would you feel if someone had to do this for YOU?

I can’t stress enough, the vigilance required in prompt changing and thorough cleaning. This is especially important with female patients as they are prone to get UTIs (Urinary Tract Infections) if left unattended too long. UTIs can, not only be hard for the lay person to recognize but can also play havoc with every other aspect of the person’s well-being (moods etc.).
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Forgive me, I digressed on the “toileting.“ Getting back to the question; “what is the hardest part?“ Keeping track of and administering medications - Bathing - Feeding - Dressing - Social Isolation - Lack of any significant physical help from family -Taking care of yourself. These are all “hard parts” of the caregiving experience. BUT…none of these compare to the constant struggle to rise above and block out the extreme sadness of this affliction. The overwhelming feelings of helplessness and despair as you watch your loved one slowly slip away physically and mentally, never again to be the person that they once were.

Maintaining a cheerful and positive attitude...a stiff upper lip during what has become known as "The Long Goodbye." THIS is by far the hardest part.