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.”
Take care,
Kate
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I have never seen another woman's vagina, so have no idea what they look like, except mine.....I assume you mean (not vagina), But labia....the outer lips. I think it is sad you/anyone thinks any body part is ugly. Our bodies are amazing. I dou
Roadrunner,
Let us know how your lips turn out, mine are so thin I have often thought of doing something. But I am scared whitless!
Unfortuately, beause of people’s ignorance we suffer. People are uncomfortablle with others pain and want to fix it, so they say stupid things. People think all kinds of things about our situatiions…….I endured a 31 year marriage of abuse and found the courage to gt a divorce…people think I should be over it, et….it has been 8 years…….being alone is excruciating, but people don’t want to hear that, they want to “fix” it and say hurtful things. Uhless they have walked in our shoes, they should just….shut up!
I am sorry you are living like that…My hugs and love
That is the thing…..many times we tell the wrong people, and they add to our pain, and so we keep silence and suffer. I understand craziness and lonliness.
a P.S. my friend who is also divorced and lonely…hears “You should LIKE being alone.” Of course, these are people who have never been alone.
I say, don’t take me where you haven’t been!! Have you ever thought of counseling for yourself?
I have that poster of the Edvard Munch painting, the scream….
Who in heaven’s name says these things to you? How insensitive can they be? You are living in hell and my heart goes out to you. Thank heavens you do have some venues for escape but, as a fellow teacher, I know how that occupation can drain your energy even when you love it.
You are going to burn out if you do not get some help. It sounds as if your husband is relatively young to have dementia. My grandfather developed it in his seventies and it was hell for everyone. He finally had to institutionalize and I believe that is what saved my grandmother’s life as she was so tired of caring for, watching out for and almost fearing him. He did become very abusive, hence the institution. She felt so guilty, that she had forsaken him in his time of need. A wonderful nurse took her aside and told her to go on living her life because really, the man she had loved and married no longer existed and no longer had the capacity to love or even remember her. But she still had a life to live and she should not live it feeling guilty. That advice gave her the courage to once again embrace life and she lived into her late eighties.
I hope you have support- if you do not you need to seek out some fellow caretakers.