Learning about self
I work with an Alzheimer patient 3 times a week (I'm too lazy to go and look back to see whether or not I've mentioned this before). This week has been both rewarding a jarring for me. On Monday, I go to her house to find her sitting in the bathroom with severe diarrhea. She yelled at me to get out of her house because she was ill and didn't want anybody there. Okay. I pretend to leave, but come back in 3 minutes later to make sure she's okay. I found her sitting in the living room, having trouble breathing. Her 'illness' got her blood pressure up to around 190/89 with a pulse of 82. A call to the doctor and a few minutes later we had the situation under control again. I put her to bed and she went straight to sleep. This was around 5 pm. At 8 pm when I rechecked her blood pressure, she thanked me for everything I've done for her. Each day since, she was really nice to me. Until today.
Today I went there and she barely tolerated me for 45 minutes. At that point she had completely forgotten again who I was and she threw me out of the house. She was angry and back to her ol' self, at least the self that I have come to know. In order to keep her from getting too mad and driving her into any sort of action, I always pretend to go out. And then I go back in. Most of the time she doesn't even notice. She's hard of hearing and really spends most of her time on the couch. just sitting and staring. This led to a bit of peace for me, and time to think and reflect.
I realized that it is impossible to build a relationship with people who have dementia. As a new person in their lives one may be able to have pleasant - or not so pleasant - conversations, but really that is about all one can expect on the positive relationship side. Thinking that one has made a lasting impression, impact or any such thing is just setting yourself up for bitter disappointment. My patient didn't even remember that she has a 13 year old granddaughter.
That led to thinking about my situation at home. We've only been together for 15 or so years. If this thing progresses and I believe that it is progressing, then at which point will I be forgotten, only to face being thrown out of my own home. Will he even remember that this is his home, as well? What will the struggles be? Will I be safe? Will I be able to protect him in a way that he would have wished pre-dementia? This scares me a lot. How will I handle this? How will it effect me? How will I react to being a stranger to the man with whom I've shared my life for the past 15 or so years?
About a month ago, I said: "If I am going to interrupt my work and possibly endanger my future well being to take care of you, then I need one thing. I need for us to get married legally, so I can get your social security should something happen to you. That way, I would be taken care of in my old age." This infuriated him. He said it would never be possible since I am not a Christian and he is. Now, I know that there are all kinds of responses to that. I chose to just be quiet for a while, and only do the necessary communication. After a few days, we took a walk. He and I started talking about things. His temper came out something fierce, yelling the most ugly things at me. I don't know if it was the dementia, his fear, his character or a combination of all three, which is the most likely. It was at that point that he said: "You would never be able to take care of me, and I doubt that you even want to. You're always going off, here and there, and leave me alone." Mind you, going off here and there entails going to work and twice a month to meetings with friends. Well, the upshot of this whole debacle is that he wants to be sent home if and when his dementia progresses. He feels that his family at home would take better care of him than I would.
My dilemma is: Which part of him was talking? If he goes home, he looses his medical coverage. That won't travel with him. If he goes home he'll have the care of doctors much less experienced in dementia, since most cases over there don't get medical treatment. If he goes home, he stands a good chance of getting medicine that is counterfeit. If he goes home, my life will be much easier, much less stressful. If he goes home, will I miss him terribly or will I be happier? I think that he has always planned on returning home once retirement was here. Secretly, he was hoping that I would change my mind and want to come with him. By now he has realized that this is not going to be the case. So, he feels that he has to stay here with me, to take care of me, to babysit me, as he once said. The anger that comes out, I believe is a mixture between his need and longing to live at home and his commitment to me, whatever that may be. I am neither near retirement age, nor willing to uproot myself and move to Ghana. So, if the power of attorney that I hold ever kicks in, which decision do I make? The one that is good for his body or the one that is good for his soul?
Never in my wildest dreams did I ever think I was going to be in this position. I had fears about all kinds of things, but this wasn't even close to my consciousness. So, I'm not prepared. Is one ever prepared for something like this? I certainly wasn't prepared for entertaining the idea that I might send somebody off to be taken care of by someone who is not me. My mind is all over the place. I'm having a hard time focusing. See, what an afternoon with a demented woman can do for ya?
Yeah, me too.