My Uncle Bill’s mother, known as Aunt Emma to the kids in my family, was a lovely lady. She was very gentle and kind, and was extremely loving to her grandchildren. Aunt Emma fell victim to Alzheimer’s during middle age; young enough that I think it would now be considered early onset. She slid so rapidly into dementia that she was placed almost immediately into long-term care. Alzheimer’s patients display a wide variety of symptoms, and Aunt Emma’s disease manifested in the form of extreme agitation and rage anytime she saw a man. She would rant and rave so intensely at Uncle Bill when he came to visit that in fairly short order he stopped going altogether because he couldn’t bear to cause his mother such distress. He had to rely on reports from his sister concerning their mother’s welfare for the last few years of her life. My cousin Cam (Uncle Bill’s middle son) was especially close to his grandmother and insisted on visiting her despite his father’s cautions. Cam later told me with his eyes brimming that Aunt Emma had begun screaming and spitting at him almost as soon as he walked into her room, and had then proceeded to chase him out of the building in the same manner.
I would guess that his mother’s terrible experience with Alzheimer’s was the first thing that came to mind when Uncle Bill received his own diagnosis many years later. He privately told his son Greg that he would rather quietly step off the end of his boat at night and drown than to suffer the torturous fate he had watched his mother endure. My dad had no such precedent to draw on when he learned he had Alzheimer’s, but early in his disease I saw panic in his eyes on more than one occasion when he came back from one of his increasingly frequent dissociative states. Alzheimer’s is a terrible sentence for both its victims and their families. Dad and Uncle Bill both got to a place where they were physically present but mentally pretty well gone; like the human husks in “Invasion of the Body Snatchers”. I don’t want to dwell on the pain of the disease as it has already been well documented in books, movies and articles. I would much rather remember the small mercies my dad and uncle encountered during their decline, and the extremely funny things they said and did as their memories failed.
My father was an excellent guitar player, and one would think that the requisite dexterity of his profession would have carried over at least in small part into his everyday life. This was decidedly not the case as he was one of the clumsiest people I have ever known. He was very fond of Old South frozen concentrated orange juice, and therefore made a pitcher of it about once a week to ensure there was consistently some in the fridge. This was my father’s routine for years, yet somehow he almost always cut his thumb when he opened the juice can despite the vast number of times he did it. I think his ineptitude was due in equal parts to his miserable manual dexterity and extreme impatience, but whatever the reason he almost constantly sported a bandaid on his left thumb protecting the latest wound he’d sustained while opening his Old South. What a klutz.
One time my sister Susan was visiting our father in his assisted living facility. The deterioration of his mental state had by this time rendered it functionally impossible to carry on a conversation with him, and it had become customary when visiting to turn on his TV in order to drown out the deafening silence. On this occasion Susan had tuned in to a figure skating competition. My father was looking at the screen which was no guarantee that he was actually taking in what he was seeing since he simply stared straight ahead most of the time regardless of what was in his field of vision. Susan was adding commentary here and there, oohing and aahing at the athletic feats of the skaters, reminding Dad that he wasn’t alone and trying to illicit some kind of response. After a skater had performed a particularly difficult combination of jumps, my father suddenly pointed at the screen and said, “I used to be able to do that.” My sister had just taken a sip of coffee and it almost shot through her nose as she reacted to this patently absurd statement. Here was a man who always called “a guy” when he needed something done around the house, who hadn’t strapped on a pair of skates in at least 70 years, and who was so extraordinarily uncoordinated that he consistently injured himself when opening a can of orange juice, claiming that he used to perform quadruple jumps on ice. You have to laugh to keep from crying.
My Uncle Bill never served in an actual war, and yet as his illness progressed he began to insist that he had been wounded in battle. He ended up living with his son Greg in Seattle the last several years of his life. My sister Lisa and I were visiting them when one afternoon, apropos of nothing, Uncle Bill announced how very lucky he was to have survived after being shot three times in Korea. Lisa and I both looked at Greg in surprise as this was the first we’d heard of it, and he rolled his eyes to let us know that his dad was spewing nonsense dreamt up by his failing brain. Greg then gave us a mischievous smile and said, “Watch this.” He walked over to where Uncle Bill was sitting and said, “Hey Dad, can we take a look at the bullet wounds?”, and Uncle Bill, a consummate bullshitter his whole life, didn’t skip a beat as he replied, “Oh, there’s nothing to see because they were all flesh wounds.” Pretty slick for a man slipping into dementia. The number of wounds he sustained continued to increase after he was put in care. When he claimed to have been “winged” 12 times, another resident in his facility who actually had been wounded in action took exception to his ridiculous story. He picked Uncle Bill up by his lapels and slammed him into the wall, and a fight would definitely have ensued if the nurses hadn’t intervened.
It is impossible to know exactly how Alzheimer’s disease is going to manifest in any diagnosed individual, but those afflicted usually experience confusion about the details of their current lives. For at least the last year of his life my father would often say that he had a gig later that night, although by then he had been retired for decades. He also thought that his parents and my mother were still alive despite all of them having been dead for many years. My siblings and I would correct him when he first started having these misperceptions, but as time wore on we stopped. There was no point in trying to change his mind because even if we succeeded, he would only be able to hold the truth in his head for a short while before defaulting back to his original delusion. More importantly he took great comfort in thinking he was going to see his parents later in the year and that my mother was just upstairs making dinner. Where’s the harm in letting him substitute warm memories for grief?
My Uncle Bill’s greatest confusion about his current life during the course of his decline concerned where he was living. He had lived for over 30 years in the same condo in Boston, and during that time had visited Greg in Seattle on numerous occasions. As Uncle Bill became more muddled, Greg and his brother Matt decided it would be best for their dad to move in with Greg on the west coast. Uncle Bill navigated his new city pretty well his first few years there, but eventually started occasionally getting lost when he was downtown. Greg put a card containing his phone number and a description of Uncle Bill’s condition in his dad’s wallet, and Uncle Bill knew enough to present it to strangers when he became unsure of where he was. Many was the time Greg had to leave work and pick his dad up after a concerned call from a kind bank teller or bartender.
Greg was at work one day when he received one of these calls only this time it was his father on the other end of the line. When Greg asked him where he was, he replied, “Charleston.” Greg began racking his brain trying to think of a bar or restaurant in Seattle with that name. He finally asked Uncle Bill where Charleston was (meaning on which street or what was the closest intersection) and his father replied, “In South Carolina, of course.” You can imagine the panic my poor cousin felt as he realized that his greatly confused elderly father was currently halfway across the country with no chaperone. Luckily Greg still had some family in Boston, so he calmly got the number and arrival time of Uncle Bill’s flight. Several frantic phone calls later he and his brother had bought Uncle Bill a direct ticket back to Seattle, arranged for someone to meet him at Logan airport, and found someone else to put him up for the night and get him on the flight home the next day. My cousin Matt made this into a very funny story in the retelling, but this scary incident was the catalyst for Uncle Bill’s admission into long-term care as he could clearly no longer be left home alone. He still had the faculties to book a ticket, pack a bag and get himself to the airport, but was unable to recall that he no longer lived on the east coast.
During my final visit with Uncle Bill he didn’t say a single word, but he held my hand throughout and it was clear to me that he knew who I was. That was enough. The last time I saw my father, my brother Michael and I were visiting him together. Our dad was slumped down in his wheelchair and looked worse than usual. At the end of the visit my brother left the room before me to speak with the nursing staff about our father’s alarming condition. For the whole of my life my dad had kept himself emotionally distant. I always assumed this was a defence mechanism he put in place to ensure he would never again feel the intense fear, guilt and sorrow he experienced during the war. Whenever I would express my love for him he would inevitably respond, “Thank you.” When I was leaving on that final day I leaned down, kissed him on the cheek and told him I loved him, fully expecting his usual reply. Instead he grasped my wrist and tugged on my arm with more strength than I thought he possessed, stopping me dead in my tracks. I looked him in the face and he gazed back, fully present behind eyes that had become progressively more dull and distant over the previous few years. He earnestly looked at me and clearly said, “I love you”, pausing slightly between each word to underline his intensity of feeling. Perhaps he said it because he knew this was our last meeting so it was finally safe for him to admit it, or maybe it was simply a case of a father giving his daughter a precious gift to remember him by. I choose to think it was the latter.