Saturday, July 15, 2017
There will come a time when I won’t mind anything that happens or that is said, or so they say. But everyone who cares for me, they have to care about things.
Caregivers have to sit by and watch as those they care for slowly die. They have to watch as they have good days and bad, as they laugh and when they cry.
They have to do this without losing their temper with the person they are caring for. Without losing their temper with themselves.
They have to do so much more than simply empty bedpans and wipe bottoms, they dry tears and clean up messes that happen and listen when the person they are caring for goes off on a tangent, or rant, and have to do this without getting upset or laughing at the person, though they will laugh with them.
Alzheimer’s/Dementia of all kinds affect everyone differently. They go down the road at different speeds and none in the same manner. Just because someone may go quickly doesn’t mean everyone or even most will follow the same.
I was diagnosed almost 10 years ago. Before the doctor started me on the medication I was indeed at a bad time. I couldn’t string words together or come up with words. Or I could think of words but not write them. For a writer this is very terrifying and upsetting.
After the medication I could write again and I went on with my life more or less not really realizing there was something wrong with me. Then something would happen and I would find myself slapped in the face with, yup, Alzheimer’s.
Despite going down hill every time they had taken me off my medication when I got sick or was admitted and they didn’t really understand the need for it or what the dosage was supposed to be I managed okay. Never got back to where I had been before, but not too far.
But the last few months have been harder for me to pull this off. It’s like I have been acting a part in a play and now the lines are becoming more difficult to recall. I am slipping and I know sometimes people might think it an act when suddenly I can’t do the things they had seen me do so easily.
When one moment I am fine and talking about, the word eludes me sorry but you probably know what I mean. I am beginning to struggle so need to make this quick. When one moment you seem fine and the next you can not get any word out or suddenly it feels like someone is smashing your brain into nothing, taking everything you spent a lifetime putting in there away. It makes me so angry!
I never asked for this and I most certainly would never pretend. Having your life slowly sucked out of you by some horrible thief who doesn’t care who you are or what you have done during your life. And having to know that family, friends and caregivers have to watch this play out to the end while you one day won’t give a shit.
I hear some of you, watch your mouth. No! I have just as much right to scream and yell and cry as anyone. I need to do this before I can’t do it anymore. While I still can, as Rick says.
We thought it might be due to menopause, after all I am only 53. but I am beginning to wonder. I was having signs way early, possibly as early as 30 my mom said. When she thought back.
I started with an idea, but somehow I lost it all. I know it was about caregivers and having to watch as we slip away. Am I still there?
Lost. I have been more lost than found lately. Words there and when I go to write them they always look wrong. When I type I trust the spellcheck like I never did before. I try to correct the wrongs but sometimes I can’t because I have no idea which one might be right.
All I can say is though even I think sometimes there is nothing wrong with me, when it raises it’s head and lashes out I am not faking it. It feels like an attack like none other. Sometimes there is a fog that takes things away and sometimes the world simply goes dark. Either way I remember little or nothing when it clears and when it clears now it doesn’t clear as well. I am still in a haze. My head feels stuffed too full like it is being smothered. Not too full of memories those are being stolen from me.
How much longer? No one can say. Only God knows.