Sometimes I think if I hear “you should be used to it by now” one more time, I shall strip off my clothes and run naked down the street, screaming like the screamer in the Edvard Munch painting!
Let me be very clear–you NEVER get used to living with a person with dementia, never!
How could you get used to such a situation? Every day you share a home with a person who does not care about you, who has not the slightest interest in you or anything else. Add to that, his physical abilities keep diminishing a bit here, a bit there. His reasoning abilities, if not completely gone, are seriously dysfunctional, so you are always walking on eggshells waiting for the next thing to break or be left on or be left open, as well as trying to guess where he’ll need help next so that you can anticipate it and do something about it before his frustration level explodes, which it will, especially if he thinks you are trying to help him because he hates help.
And his frustration is always present, though he can only articulate it with a steady stream of swear words all day long, his favorite being “shit, shit, shit” morning, noon, and night. Can you imagine how hearing that day after day for years and years wears you down, especially when there is no end in sight?
And there’s the craziness–inexplicable behaviors that leave you scratching your head or words that make no sense. Honestly, if there’s such a thing as reincarnation, and I have to be reincarnated, I want to come back as a neurologist and figure out the human brain.
I try to keep my head up and a smile on my face, but it is getting harder. I teach and meet up with friends and go to movies, but then I have to come back home again, and I just hate walking in, seeing a man who looks like the husband I shared everything with, but is now an indifferent stranger who no longer shares anything. Sometimes I sit in my car, my eyes wet with unspilt tears, steeling myself to go home and face another day, another night of craziness and loneliness.
Sometimes I become a grumbly bear with a poopy expression, and the suggestion is made that I should count my blessings instead of feeling sorry for myself. I do count my blessings every single day. I am grateful for and appreciate my children, whose love and care are beyond measure. I cherish my friends. I delight in my students. And books and films provide much pleasure. BUT, I also feel sorry for myself because I just cannot get used to living with a person with dementia! So, please, because my running down the street screaming while stark naked would not be a pretty sight, do not ever tell me again that “you should be used to it by now.”