I'd like to say that I am better at this caregiving thing but... not really. It is the hardest thing! Never mind how I feel.. poor Betty is just beside herself. She thinks she is dumb. She is absolutely convinced that this forgetfulness, confusion, chaos can only be described as, dumb. If you think reassurance should help.. try to understand that she retains no info for longer than a minute EXCEPT negative things. So, if I were to say, "Betty you ARE stupid" she would retain that for many hours. But if I say, "Betty you are NOT stupid it is your memory problems" that is gone from her brain in less than a minute.
This is a woman with one of the lowest self-esteem's I have ever known. I have always said I thought she had a big touch of narcissim but honestly I am not sure you can have that and the worst self-esteem, ever. From what I have known of her she has always insisted upon compliments. She did it through manipulation, a training of sorts. I won't bore the blog with the details but suffice it to say most people knew to tell her how good she looked when she walked into a room.
She always told stories, still does, of the pretty girls who could have had her husband and how she went crying to her mother. Or how she asked Bo, I bet over and over why he chose her over the "pretty" girls. Mind you.. this was an attractive woman. Even with her wrinkles at 91 you can see she was an attractive woman.
So to the present, now her constant question is, "Do you still love me now that I am stupid?" I really feel a thud in my heart and stomach when she says it and yet there is a part of me that replaces the word stupid with, "not pretty." It always feels a bit manipulative. There is always that underlying need to be reassured. It is a lot of work!!!
She has always been a lot of work.. is my take-away. I'm not trying to be mean I am trying to describe the way you must always be on your toes, always say the right thing or she will turn on you, like a stepped on rattle snake. I believe that those around her, her husband, her son and daughter, her relatives, they all learned what to say, because it made life easier. There is no one in my sixty three years who could "be insulted" quicker or take offense faster than, Betty.
I was a late-comer to this party. All I know is what I have gleaned in the past fourteen years. I watched the "manipulation" as I like to call it and wondered how grown people could be ruled by such a little woman. LOL! Yet she scared the hell out of me the very first year I met her. Got me right in line with the others.
Bo, her husband, got up early in the morning like me. We were in the livingrom, next to the closed door bedroom, and he said good morning to me in a whipered voice. He was a bit hard of hearing but we were not talking "loudly" when the bedroom door burst open and and there she stood with the angriest look and voice I ever wanted to hear. "Do you have to be so rude when people are trying to sleep?" "There is no need to talk so loudly out here disturbing me." If you could imagine flames shooting out and a face distorted into some evil mass... that is what I think I saw. HAaaaa!!! It was the last time I went out there in the morning during our Christmas visits. It is the reason I went into our cellar with headphones when she visited and was asleep on the second floor. It is why I tiptoe into the livingroom every morning now. I was trained.
So, on the one hand we have this woman who thinks no one loves her because she is dumb and on the other we have the woman who SNAPS at the slightest wrong word. I sometimes feel I am living with two different women. She is a bit like the dog who snaps at you and then licks your hand.
It is a lot of work to find balance. Sadly with this disease she hardly has control over any of this baloney so it is all up to us to try to keep her from snapping. I am here to confess.. failure. Almost every day Bob or I say "the wrong thing" and she is OFF! Often I am left staring into space wondering to myself.. now how the hell did THAT happen?
Our biggest issue here now is that Bob and I are not talkers. Betty is a talker. She repeats the same thing over and over and over. Talking to Betty is; I talk, you listen, wasn't that fun. Betty believes that Bob and I should shut off the television, turn off the computers, put down the books and sit and listen to her for hours. She really does. Here is the problem. It isn't happening. Neither one of us are big talkers. I guess we are not good listeners either because we both think we listen to a lot and Betty thinks we never listen. Also she will only sit in the dark den with the dark paneling and the not enough light with no breeze. We sit in the livingroom with the curtains open, LIGHT as can be with a ceiling fan on, constantly. We have invited her over and over into the livingroom to sit with us but she just cannot do it. We shut the fan off so there is no "breeze" but that is just not good enough. So, Betty gets angry. We try sitting with her awhile but it is never enough because she cannot remember for even a minute that we did.
And so, Betty listens to her music and clicks. Tongue clicking is all we hear all day and night. Music or no music, tongue clicking. Click. Click. Click. I read a woman's blog today whose husband whistles. Trust me. Either one would drive a person mad. You might think that whistles must be worse than clicks... no. Repetative anything, is enough to drive one nuts! So, I admit that this rambling rant is an indication that I am nuts.
I have no answers only questions. How can we make Betty's day better? How do we hire a companion for her who will sit and listen and maybe get a word in? How do we ease her fears and make her feel safe when she cannot remember we live here? Is there a way to stop the clicking or must I wear headphones all day? How do we have less "snapping into nasty" and more happy moments? What can we do to make our lives more bearable? What can I do to help Bob deal with all of this because I am really afraid he is going to drop dead one of these days?
If I have not mentioned lately, I hate Alzheimer's... let me make it clear. I HATE ALZHEIMER'S.
