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burnt2acrisp (@burnt2acrisp)

Caregiver Burnout Warning

Caregivers: Dementia | Last Active: Nov 2, 2020 | Replies (42)

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Thank you all for your kindness and advice.
I'm afraid that my post did devolve into a rant against the V.A. The title – and main point – of the post should have been "How To Make Your Loved One Fear And Hate You In Just 50 Complex Steps"
For years I've been trying to overcome my outspoken aversion for the V.A. Always heard that one has to recognize a fault to correct it. Thought I was making a little progress…on a scale of one to ten (ten being the worst) the present horror show is about a negative seven.
I've spoken to hubby's facility doctor once and he said that it would be nice to have some brain imaging before proceeding. I'm all for that and told doctor I had already spoken to a V.A. Community Care coordinator who said to let them know if anything was needed but doctor is proceeding without it.
There was one symptom that doctor seemed a little mystified by. Hubby sometimes suffers a strange muscle lock-up. Seems to be connected to over-exertion. He starts leaning backwards further and further until he loses balance and falls. Twice this went much further and his knees bent also until his whole body was bent into a backwards leaning 'U' shape. So far back that had he fallen he would have landed on the top of his head. During these episodes he can flex his hands (maybe grab a support) that is all. Very hard for me to ease him to a safe spot because muscles are locked tight. The muscles then release in 3 to 4 minutes. The incidence of this phenomena appears to be decreasing though he now usually walks with a more upright posture than he has for years. Does this ring a bell with anyone?
@momkids – I think that you are absolutely right and I should seek better diagnostics. For all anyone knows he might have a brain tumor or something. No one's done so much as an ex-ray.

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Replies to "Thank you all for your kindness and advice. I'm afraid that my post did devolve into..."

I think that you did a fine job of not ranting against the VA too much. My husband is former military but does not use the VA, although his brother is a disabled veteran and he does. We have heard lots of stories about how difficult it is to navigate and get care even for simple things, much less something as complex as your situation. It know it's hard right now, but you are doing the right thing. Hang in there and we are here to support you.

@burnt2acrisp You are very courageous and have done what really needed to be done. Your strength is to be admired.
About his leaning backward at times: I would suggest you ask for a list of the medications he receives. Some may have a problem like this as a side effect. Or how 2 drugs may interact. It may be worth investigating.
Have you checked to see if the facility has an ombudsman? An ombudsman is someone you can bring a complaint and they investigate. They are usually called after you have tried everything else.
I wish you all the best