Living Alone With Dementia

Besides my own writing, you may have noticed that I have begun to include the writing of others on this blog. The "Others" are people with dementia and the writing is from what I call the "REAL" side of it, the side of the person who is living with dementia.

Early on, a buffer protected Gregory from really realizing his situation, his decline and we were never really able to discuss what it was like from his point of view.

I certainly worked at holding his point of view in all (most) of my actions if only because of our love, our 40+ years together, my observations, my research and studies on Dementia/ Alzheimer's.

But until I met Kate Swaffer, I never really understood what it must have been like for Gregory in so many ways.

This article shared by Kate Swaffer, written by Dr. Judy Galvin, goes one step further. It is from the point of view of a person with dementia who lives alone, a scenario I never even began to consider.

Yet another "gift" of Alzheimer's to me as I continue to grow in patience, compassion, and understanding not only towards Gregory but all of humanity. That may sound self-serving and grand, but so is Alzheimer's!

http://kateswaffer.com/2015/09/27/living-alone-with-dementia-by-dr-judy-galvin-dam2015-day-27/comment-page-1/#comment-60637

Here Come Those Emotions Again

I went to visit Gregory today. He was asleep and I couldn't wake him up. Manny reported that Gregory had slept most of the afternoon and Tomika reported that he slept most of the day.

I asked the nurse to look at him which she did right away. His blood pressure, pulse, heart rate, oxygen count were all normal as was his breathing. So nothing looked wrong, and the excuse was "Maybe he didn't sleep well last night."

I left him to sleep and returned home, not terribly upset but not completely calm either. Why was he so far away? Why would he not wake up? Was he keeping his eyes closed on purpose? Was he being stubborn? Was he becoming comatose? I was not terribly upset but not completely calm either.

While I was washing my dinner dishes the emotions crept in and I got frightened. Not for Gregory but for myself. I realized that even in his current condition, he is such an important part of my life. He is where I go almost every day to visit. I still shop for him, find clothes for him, organize his room for him. I will miss him so much when he dies (assuming he goes before me.) 

Then I suddenly felt so alone. Even in his current condition he is with me and I will miss him so much when he dies. Who will I take care of? I am afraid for myself at  how alone I will feel when he is gone.

WARNING: Explicit Scatology

Dear J,

Thanks for your thoughts. Things have been so hectic that I haven't even had five minutes alone in which to sit down for our phone chat. Friday night G had some kind of virus (don't think it was food poisoning) had the runs and has given me quite a run since.

Shit himself, shit the bed all night. Luckily I had a package of hospital type bed squares with absorbent on one side and plastic on the other.

Slept most of Saturday in between me having having to clean him up. After some toast, tea, and yogurt he shit on both of us as he stood in the middle of the kitchen saying, "Oh oh, Oh oh." I didn't know where to start to clean up the mess.

I have started having him sit on the pot every hour on the hour. Have caught most of the accidents. His ass is so raw that it hurts to look at and I am applying medicated cream.

Woke him up through the night and again caught most of the accidents. But toilet paper skills were sadly lacking and that paired with communication deficiencies made it an almost impossible situation.

Today is Sunday and he is still messing his pants. We will have another binding banana and oatmeal for breakfast and see what the day brings.

All this with the inability to wipe his own ass let alone communicate his needs or understand my questions. So like a baby flailing in its poop, that is what I am dealing with.

When he is sitting in one place he still looks and feels like Gregory. But at least with this weekend's illness, none of the Gregory I know is here with me.

I know your comment "You are not alone." means you empathize with me and wish you were here to support me but guess what, I am alone. And numb. Beware the IDES of MARCH.

And Emma decided to throw up twice. At least she did it in the middle of the bathroom tile so the grout is safe as is the bedroom rug. A bit of humor.

Michael