Love, Valor, and Compassion

I remember a long time ago when the guys were talking about "Love Valor and Compassion." Don't know if it was the play or the movie. Some of them said it was "yucky" that the male lovers were grooming each other: nose hairs, ear hair, etc. Gregory and I have always been comfortable with each other's human nature and mutual grooming, shitting in the room with the other shaving, etc. Today I lovingly thought, "If I used to fuck that ass, I might as well be content wiping it as well!"

I minorly apologize for the above if it caused offense but it is part of our reality and yes, Alzheimer's does not discriminate against same sex couples, which is also our reality! 

Was just going to share the above with a friend but then got going with itemizing the changes we are going through. Don't know why for sure, especially after the resent UPDATE, but will make an excellent e-mail and I can add it to my BLOG. Writing is my way of processing, documenting, and currently living.

Things continue to deteriorate so fast that I cannot keep up and an not sure what is the best way to proceed. I have an appointment to talk with his neurologist's social worker and honestly am continuing (with more urgency) to research memory care facilities. Last night we tried to watch Downton Abby but he got upset, couldn't tell me why, but could tell me he didn't want to watch it. 

His eating is getting harder and harder and during a meal he seems so distant or confused. Like yesterday he stirred his oatmeal for what seemed like forever and I kept having to suggest he eat some. At one point I had to show him "how to eat some." He did a little better with his pasta and meatballs but often brought an empty fork to his mouth. A new perseverative behavior is cutting his food into tiny tiny pieces before eating them.

He no longer can sit in front of a breakfast tray because the number of items is overwhelming so I serve one course at a time. Things he used to love he turns his nose up like smoked trout on a cracker. He seems to have stopped enjoying his evening coffee and cookies. Popcorn is no longer important while watching TV. Meals are no longer enjoyable times but difficult and often upset times with his tears.

He sits and stairs at his morning newspaper front page only. He paces the condo. He no longer looks at the photos each day on the perpetual architecture and the perpetual world art calendars but I continue to turn the page each night in anticipation of him doing so each morning.

A night or two ago he was up for several hours in the middle of the night worrying about something "red?" I can hardly do anything because he cannot occupy his own time and needs someone. Often he sits on the bench in the bedroom while I work at my computer.

He talks to himself. He startles easily. I'll say something to him or suggest something, he'll say "Yes, OH, OK." but continues to do what he was previously doing. This morning surprisingly enough he put on and buttoned his own shirt and jeans but now is panting and moaning from exhaustion.

He doesn't have associations with even the simplest directions: Sit down. Sit. Come eat. Pull your pants down. Come here. Stop that. Pick up your fork.

Often he is not at all present, is distant, is gone. And I sit by his side and wonder where he really is knowing there is nothing I can to to help tether him to me or to life. The other day when he was feeling what I would call the Cloud or Fog of Alzheimer's, he told me he just didn't know what was happening and that he thought he was dying. 

Last night we had a lengthy (although nonsensical but filled with urgency and emotion) conversation. Periodically from his "upset periods" with crying etc, I get the feeling that he is once again aware of who he was and what he has lost architecture-wise, piano-wise, relationship-wise, self-confidence-wise, ability-wise. He cries and shakes and looks so pained. I can only hold and rock and mutter soothing thoughts like "Everything is OK. There is nothing to worry about. I am here for you. Everything is good. Everybody loves you."

Where will the next Moment take us? Maybe I shouldn't be thinking that because that makes the moment permanent and it is already past!

Companion Report # 2 by B.P.

I started working with Greg about nine months ago. Since our companionship's beginning, I have thoroughly enjoyed my time with Greg. We share similar dispositions and temperaments and a common taste in music and film. Perhaps greatest of all, we share an ability to sit quietly in one another's company, each of us occupied separately. Many others would find this uncomfortable or awkward, but I think we both find it one of the more enjoyable ways to share another's company. When I began visiting Greg, he seemed fairly stable, at a plateau in his degeneration. However, in nine months there have been deteriorations both significant and insignificant.

More often than not, I work with Greg during the middle part of the day, beginning in the later morning and leaving around the middle afternoon or early evening. For several months, Greg would often make himself a salad for lunch, and I would assemble a sandwich for myself. I would occasionally have to help him in some small capacity: he  might need help finding the forks or removing and reinserting the vegetable crisper/drawer from the refrigerator (cumbersome for anybody). It's been months since I've seen Greg make himself salad. Nowadays, he is content for me to make him an open-faced sandwich (very very simple fare). It's worth noting that his salads often included some small part of decoration. It was never anything elaborate, but slices of cheese or rolled up sandwich meat were placed with a certain amount of care and consideration. The "meals" I create contain no such consideration. But he seems satisfied. He still retains his ability to use a cutting knife, though I keep a close eye at all times.

Greg loves to take a walk when I visit. This shared activity forms the core of my time with Greg. It is difficult to judge any significant changes in his directional abilities as we take the same basic route as my very first day with him. While he is tired by the end of these walks, he always seems happy for having gone out, despite the elements. In all honesty, he seems a little more lucid after our walks. I still wonder if this has anything to do with his great affinity for water and our route's proximity to the lake.

On the note of water, another of Greg's preferred activities is swimming. We haven't gone swimming in a month or so, owing to the pool's closure while the heating is fixed. When we have swum, there has been a very similar effect to walking. Greg seemed far happier and again, a little more lucid after a good swim. He usually needed no real help showering, though I would have to start the shower and get out his soap. Once, he forgot to wash the soap out of his hair, but otherwise this process went without hiccups. When we were in the locker room, I would often have to help Greg change. Usually this simply involved pointed directions and occasionally me either offering him some article of clothing or gently tugging on the said clothing. He has thoroughly enjoyed our swims and has brought up his dismay at not being able to swim on multiple occasions.

When we are in the apartment after our walk or swim, my direct involvement in helping Greg with things is minimal. I might have to help him with his belt or tucking in his shirt on occasion, but that's about it. Every now and then, we'll watch a movie. This is throughly enjoyable for the both of us and involves little effort on either of our parts. Greg thoroughly enjoys simply sitting around listening to music or reading his newspaper while I work on whatever homework or projects I might have.

The most noticeable of Greg's deteriorations have manifested in his linguistic capabilities. He can still read. I can tell as much because he can select something from his menu when we go out to his favorite diner. Often though, Greg might forget what he chose, and I always have to help specify what sides he'll have and how he'd like his eggs. I have no way of telling how much he picks up from his daily newspaper as he never talks about it and can't really communicate anything when asked. What is most apparent is his steady decrease in speech and conversation. I remember the very first day that we spent together, Greg pointed out a building during our walk: "See it's French." I asked how he could tell, and he replied by pointing out the "rounds" on the windows. He has never since displayed such lucidity and clarity in perception and communication. A month or two later, when we were driving back from Wisconsin, he pointed out a building that I liked, and I asked what he liked about it. Greg could barely get his point across, and in the end mentioned something about the upper floor and that was that.

When Greg has a problem or needs help, I have to work a bit to figure out what exactly is wrong. Usually this means me being patient and offering a guess or two. I try not to guess, but it's difficult not to. When I do guess, the helpfulness seems arbitrarily dependent on the word choice. If he recognizes the word in question, Greg's eyes will light up and the problem is quickly confirmed. If not, we'll go several more rounds.

One final note: Greg's muscle memory still seems to be quite intact. He's still remarkably adept at opening the door which actively involves remembering what key to use and how to orient it to the door. Just like anything else, this is affected by his good days and bad days, but the process seems more resilient. Once he gets the key into the lock, you can almost see the engram click into place, and his hand turns in an easy practiced motion.

Many of Greg's abilities have declined, there has been significant and noticeable deterioration since our relationship began. I would not characterize it as severe. He retains many of his physical abilities. Given enough time and a relaxed situation Greg can usually figure things out. He is still relatively young to be diagnosed with Alzheimer's , and quite young to have had it for ten years now. But I have to say that in comparison, a great many things could be much worse. In all honesty, I would largely attribute this to his acceptance of the disease. My grandmother was also diagnosed with Alzheimer's and our family always had to be exceptionally careful about how her diagnosis was discussed. She was severely embarrassed about her illness and hated for it to be talked about. Greg is not so embarrassed. True, he does not often bring it up, and he is never happy about it, but there is a far greater acceptance of the situation. This makes many things easier: helping him with his coat/scarf/gloves/etc, gently telling him where to sit or what to do. In essence, when I first started working with Greg it seemed almost too good to be true: an easy job with someone whose company I enjoyed that paid well. Steadily though, it has become more apparent why I get paid to do this.