Part Four: Going It Alone
In Part Three, after Marie received a diagnosis of Alzheimer’s Disease, I set about connecting with the caregiving community and learning as much as I could about dementia, Alzheimer’s Disease in particular.
At that time, I was 75 years of age and Marie was just two weeks shy of turning 73. Marie was working one day a week (the neurologist suggested that she consider fully retiring – which she did) and I was still working full time. My reason for hanging in for that long was to vest in post-retirement health care coverage – and I had ten more months to go. With Marie’s diagnosis, that coverage became even more critical than before, but my being away from home for extended periods of time was becoming more untenable.
For the most part, Marie was still able to take care of most of her needs, or at least that’s what I told myself; until, one day I received a call from Marie while I was at work. She told me that she had fallen and that “there was a lot of blood.” I quickly told my manager that I needed to leave early, and raced home to find Marie sitting in a chair in front of the television in our family room. There was a long gash down the right side of her face and she was not able to tell me how it happened. The important thing was to get it taken care of, so I drove her to an urgent care center that was only a few miles away. It took fourteen stitches to close the wound.
The next day, I had a conversation with my manager in which I disclosed my life style, my decision to retire in a few months, and asked if it would be possible for me to work from home a few days each week until I retired. Fortunately, she had no problem with granting my request (or learning of my lifestyle), and I was pleased that my employer had a benefit which allowed me to care for a sick family member for an extended period (and that I had over 1,100 hours of unused sick leave to cover it). To say that that arrangement avoided a considerable amount of stress is an understatement.
As all of this was happening, I was devoting a substantial amount of time on the weekends and in the evenings pouring over the materials that we had received at the neurologist’s office and that I had gathered online. Since I had been taking care of Marie’s increasing needs as the disease progressed, I decided that the best course of action at that time was just to continue doing what we were doing. Besides, not being a member of the health care community, I didn’t know of any other options. So for the time being, we would go it alone. After all, I reasoned, who can better take care of your loved one than you.
Going forward then, I would learn as much as I could and devise a plan to meet circumstances as they arose. At the beginning of that journey, the first lesson that I learned was that you should never argue with someone with dementia. Case in point: at one of Marie’s first appointments with her neurologist, the doctor addressed all of her questions directly to Marie. After all, she was the patient. The answers, however, (as you might have guessed), were not always reflective of reality. Since I was sitting beside Marie, she could see that I was shaking my head no at various responses and she objected (STRONGLY) to my differing with her. I, of course, was concerned that the doctor might base any recommendations or changes in Marie’s treatment on the incorrect responses that Marie was providing. Needless to say, that was not our best meeting with her doctor. Since Marie was no longer able to use a computer, however, at her very first appointment, the neurology office had provided me with access to Marie’s patient portal account, and to preserve Marie’s dignity, and avoid any future disagreements between us, I accessed the patient portal a week before every subsequent appointment and, based on my observations, provided the doctor with a narrative that included any important events or behavioral changes since Marie’s last appointment, and any questions I had. This worked very well, and I continue that practice to this day.
As I read through the materials I had collected and talked with others, I kept finding references to and hearing about three recurring issues: cleanliness, nourishing meals, and exercise. Consequently, I made sure that these three areas became a part of our routine. So, each day over the next year, Marie had three nourishing meals, clean clothes and bed linens, and we would walk one-half mile in our neighborhood. Since Marie always had a robust appetite, nutrition was never a problem. Over time, however, the other two subjects became major challenges.
For instance, I found out that people with dementia of whatever kind DO NOT LIKE WATER (or they perceive water spraying from a showerhead differently than others do). In any event, at some point, Marie stopped taking showers and refused to let me help her do so. My only option was to give her sponge baths, but I frequently had to work long and hard convincing her that those were necessary, and often reverted to washing portions of her over a number of days to get the whole job done. And, since she had become incontinent during this time, as well, and started sleeping longer, it was even more important that she be kept clean. This issue was a continuous one that I never did fully solve.
Since Marie loved the out-of-doors and had kept in shape before her illness doing yard work and playing golf, exercise started out being a simple walk down the street and back each day. And that remained the case until one day, as we walked along, she suddenly and unexpectedly dropped to the ground and started twitching. I had never witnessed a seizure before, but this looked a lot like descriptions I had heard. After I consulted with her neurologist, Marie was prescribed yet another medication (in addition to the fist-full she was already taking), and it was then that I learned what the words “side effects” really meant. First, we needed to find the right medication, then determine the right dosage, and then observe its effect on her both physically and behaviorally. Thereafter, I was never certain whether behavioral changes were due to the progression of the disease or the side effects of her medications. With this issue being added to everything else that was going on, I have to admit that I was way past being overwhelmed.
At that point, I received a phone call from my attorney about some papers I needed to sign, and when he made the mistake of asked me how everything was going, I didn’t hold back. And I’m glad I didn’t. He gave me the names and phone numbers of two former geriatric nurses, who had started a firm that provides care managers for situations just like this. That call changed everything.
In the next part, “Letting Go,” I will discuss how Marie’s care changed and how it was better for both of us.
About this Story
This is the fourth part of our story intended to reach out to members of the LGBTQ community of Washington, DC and its suburbs. We want you to know that you are not alone, and that you and your loved ones are welcome here at Insight.
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