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Longtime caregiver looking for support and coping tips

Caregivers | Last Active: Oct 1 7:57pm | Replies (113)

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@jprust

I am a speech/language pathologist that spent years working with patients with dementia, strokes, brain injuries. I taught staff and family how to best communicate with the patients, how to set up the environment for successful interactions, strategies for interaction.
But my father had several small strokes, and then some form of dementia or mental problems that I had never encountered. Hoarding, delusions, strange behaviors, striking out at others started. It is so different when it is your own parent than when you are in a professional role. Just being able to vent and cry and talk about the craziness to a good listener is good for the soul. We also had to get guardianship and put him in a locked ward of a nursing home which was the most horrible thing to have to do. Dad was oriented, could answer all the questions on their nursing form. But he would show up at a family Christmas Eve party with a machete tucked in his belt. He was reusing adult disposable diapers, eating rotten food, showing up at the hospital for a heart transplant (at 90 years old).
I guess I am trying to say we can have the knowledge, the skills, the empathy, but when it is a parent all bets are off.
And also, we think we can handle more than others and set ourselves up to accomplish impossible tasks. There is a lot of guilt about saying “I can’t do this and I have to place this person in another setting.”

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Replies to "I am a speech/language pathologist that spent years working with patients with dementia, strokes, brain injuries...."

I am so worried that it will come to placing my husband in another environment--not now, but I am wondering how I will know when, as I seem to be getting somewhat used to his behavior. That's scary! I suppose a decision would be made when/if he became dangerous, violent or tried to harm himself? He has just turned 71 and has had chronic blood cancer for five years and chemo once during that time. He is now MRD (which is minimal residual disease) and translates to, remission but testing every three months.
I have encouraged him to seek counseling to help with the stroke effects but he sneers that there is nothing anyone could do to help him! He is very, very negative most days with occasional good days, days during which one would not notice that there was anything off about his behavior. It is very confusing because it seems up and down, like a roller coaster (roller coasters cause me to vomit = : O
Thanks for your kindness,
Athena

Your Father's behaviors sound quite like my husbands (not the machete!) Could you recommend any books or websites that discuss how to best communicate with brain disordered people? ( I don't think he has "dementia" but he does exhibit some of the described behaviors).
Thanks for any help,
Athena