ALZHEIMER’S: A Love Story — Chapter Two of Four
The Joys, The Sorrows, and The Gifts of Dementia
Chapter Two of Three
In the previous chapter, you met Gregory and Michael, learned about the time context of their story, read about how Gregory and Michael first met, and experienced the receiving of Gregory’s diagnosis of Dementia, most likely Alzheimer’s,
In this chapter you will revisit their receiving of Gregory’s diagnosis of Dementia, experience how they modified their lives to meet the new challenges, and witness the joys and sorrows of these changes because of the disease.
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FLASH AHEAD 30 YEARS to 2004 — THE DIAGNOSIS REVISITED:
Slowly I noticed that things were not quite right. Gregory started making poor decisions which was not at all like him. His moods became different. While driving, he would stop at a stop light and treat it like a stop sign, checking for no traffic and then moving again while the light was still red.
He made excuses, was forgetful in ways that he never had been. At the architecture firm he was not on top of his game, was not handling the clients as well as he always had easily done, missed meetings, got confused with details. Little things at first but adding up to alert me that something was not right. Gregory also began to notice his inabilities but didn’t understand what was happening.
One day, I arrived home at 8pm from rehearsal for an opera that I was in as an extra and he was sleeping. He had taken a nap but when I woke him up he didn’t remember where he was, how long he had been down, if he had eaten or not. He was acting so strangely that I went into my previous training as a hospital orderly, asking him: “What day is today? Who is the president? What is your name?” Also, he didn’t remember that his parents were dead. He struggled with other questions.
After talking with our doctor on the telephone, I took him to the emergency room with a suspected stroke. Turns out it was not a stroke but “Trans Global Amnesia.” A stroke is an absence of oxygen to the brain, Global Amnesia is an extra pulse or two of blood and therefore oxygen to the brain which scrambles its functioning for 24 hours. Usually the person returns to normal within a day. Gregory got better but never returned to “normal”.
That experience with the other changes I had been seeing, prompted me to seek medical advice. We were given the diagnosis of some kind of dementia, of which there are many, most likely Alzheimer’s. In some ways we were both relieved at the diagnosis if only because it confirmed what we had been seeing and at least we knew what we were dealing with and how to proceed. What we didn’t know was what a bumpy ride we were about to take for the next ten years.
During the beginning years I slowly became responsible for the maintenance of most of our life. I set up a living trust to insure that in the event of my death, Gregory would be taken care of for the rest of his life. We updated wills, Powers of Attorney for Health and Property, applied for Social Security Disability Insurance for Gregory. None of these were easy tasks due to our being same sex partners with no legal rights or guarantees.
We finished up the open jobs with Gregory’s architecture firm, helped our employees land on their feet in new employment, sold our property which included rental units, the firm’s studio, and our loft apartment. We purchased a condo in the heart of downtown Evanston, moved, furnished, and began a new life living with Alzheimer’s … NOT dying with Alzheimer’s. We would say, “We had a choice, lie down and die or hunker down and keep going! We chose to hunker down.”
LIVING WITH DEMENTIA
Living with Alzheimer’s does not hold up to easy definition or description. Suffice it to say that this insidious disease slowly disappears the person affected including their ability to relate, think, act, live in any way that reflects the normalcy that we all try to establish for ourselves. I had to live in Gregory’s rapidly changing world which was anything other than normal and in mine as well. Not meaning to be insulting, but many of Gregory’s behaviors and our interactions came to look more like CRAZY than within any range of normal.
For my part, I used to say that on a “Saint Scale,” in caring for Gregory, I never fell below an 8 but that wasn’t good enough for me. When I became frustrated or angry or lost my temper I was quick to apologize. Often I cried at my own lack and Gregory comforted me, saying, “Michael I don’t expect you to change or to be perfect, I just want you to be here with me.” Sometimes our life was spinning so out of control that I didn’t even understand or know how to behave or react to Gregory’s needs.
Gregory became more and more dependent on me, we spent more and more time together, I had to monitor his behavior and safety 24/7, eventually he began to get lost when on his own, and couldn’t be by himself in the condo either. At that point I began having Northwestern Students come in twice a week as a companion to Gregory and to allow me to get out to run errands or just have some time to myself.
Ten years living with Alzheimer’s was difficult for both of us but our love and commitment and trust in each other helped get us through. As Gregory’s abilities continued to diminish, he differed to me. For example, in the beginning he ordered his own meals when we went out to dinner, then I told him what was on the menu, then I offered him a few suggestions, “meat or chicken?” and finally I just ordered for him. He would smile and comment, “You always know what I like to eat, this is delicious!”
At home, Gregory was always the chef and I was the sous chef. I did the grocery shopping and he was creative with what I bought. Slowly I cooked more and he became the sous chef. Slowly he wasn’t able to help at all so he set the table. Next, the table setting became confusing so I did that also and he cleaned up after dinner. Slowly he forgot how to wash dishes, use the dishwasher, put dishes back in the cabinet. So he would keep me company sitting at the island counter while I did the rest. I didn’t mind. I only loved him and still do.
Holding expectations for Gregory was difficult. His abilities would slowly disappear, return, disappear again, return but not fully, disappear yet again, eventually never to return except once in a great while if at all. I always held high expectations for him at the risk of insulting or diminishing him but I also keep a pulse on the slowly disappearing abilities and altered my expectations accordingly.
I kept a busy social life for us even though it was becoming more and more difficult for me to do. We subscribed to the opera, several theater companies, went to concerts. We had people in for dinner, had 40 people in for his Fourth of July Birthday, had weekend sleepover guests, went to parties, traveled on vacations.
During a large party, Gregory was energized but after the party, he needed extra attention because of the drain of the excitement. He did well at the opera and theater but during intermission we had to go into a bathroom stall together so I could help him pee. Restaurants got more and more confusing. When we returned from a vacation, on re-entry it took Gregory a week or so to gain back his routines.
In some ways Gregory’s Alzheimer’s was all about me. It was I that could still change and accommodate, Gregory could no longer do that. Sometimes he would become frustrated at not being able to formulate a sentence, remember a word, or communicate an idea. I would know what he wanted to say based on our 40+ years together and could finish his thoughts for him and he would not mind me finishing his sentences. For the most part he was content, calm, and accepting of his situation. He was not a VICTIM of Dementia/Alzheimer’s, he was a HERO!
Over time, I was able to provide an environment for him in which he had no worries, no responsibilities, no expectations; only a narrow enjoyable routine which I helped him follow each day. He was happy and enjoyed life. We would “butt heads” now and then as the Alzheimer’s got in the way but we were both quick to apologize, to laugh at the absurdity of things, to cry together.
Although I usually kept things in perspective and was together emotionally, for me the biggest difficulty was the 24 hour monitoring, the unexpected and erratic change in Gregory’s abilities and cognition, the loneliness of being in charge of every thing, the loss of my best friend/lover, and at times the fear of the unknown and dread of the future.
To Be Continued
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