OBSERVATIONS & FEEDBACK

airwolf172 · June 3

Caring for my DW at home. Early stage AD, complicated by recent stroke. Largely recovered from stroke and now eligible to resume donanemab infusions.

DW in denial & angrily resistant to medical help, OT/PT, meds and any caregiver advice and acts. Lotsa verbal abuse & defiance.

Observations:

1. We caregivers share similar burdens but there are few solutions, if any, to what were enduring. Prayer maybe. In contrast, I have found DARE-don’t argue, redirect- to be helpful.

2. We caregivers shouldn’t expect much from our neurologists. While they’re empathetic, their experience is combatting AD, not dispensing caregivers solutions. Ours is supportive and knowledgeable, but has provided no caregiver solutions.

Question:

DW won’t let me out of her sight, almost literally. We’re together 24/7. Coupled with her angry resistance to change, I’ve no opportunity to plan/implement lifestyle changes for our benefit. To those caregivers experiencing the same, how do you get away to accomplish anything? How do you overcome angry resistance and refusals? Any success stories?

Iris L. · June 3

Read about anosognosia and shadowing. These are normal for PWD.

Iris

jehjeh · June 4

https://alzconnected.org/discussion/73189/observations-feedback

It took about 6 months but we finally found an in home caregiver who comes for 4 hours, twice a week. This gives me time away from DH to leave the house make calls, shop... it's helpful but he still calls me frequently to ask me to hurry home. I can usually only get 2 hours away. She is more of a companion who also helps with bathroom trips and sandwiches and beverages. She's older than most caregivers so they have a lot to talk about. The social aspect is the key for us. I hope you can get some time apart. 24/7 is unsustainable.

airwolf172 · June 5

thank you, Iris L & jehjeh! I’m reviewing home care assistance options. I sense my DW will balk but I gotta do something.

harshedbuzz · June 6

@airwolf172

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

You are spot on about neurologists— most have little to offer beyond a comprehensive evaluation and diagnosis. For behaviors like your wife is exhibiting, a geriatric psychiatrist was much more valuable to us. Your wife would likely benefit from some psychoactive medication to even out the anxiety that is driving her agitation and the shadowing behavior. FWIW, shadowing is a symptom not typically seen until the middle stages of dementia.

With meds on board, she may take to a companion caregiver if presented as something else— a cleaner, friend-of-a-friend new to the area, a student nurse earning clinical hours. Another option is a day program which you could frame as volunteering or social club.

Mom and I found this stage of dad's dementia to be the hardest on us as caregivers. He had just enough on the ball to be aggressive and uncooperative while we were trying to take the best care for him. He was miserable with the new restrictions in his lifestyle and told me he intended to make us as miserable as he was.

Later stages had different challenges, but they weren't as emotionally taxing for us. YMMV. That said, given that the new infusions medications work to give patients more time at their current level of function, for my dad it is not an option I would have pursued.

HB

airwolf172 · June 6

https://alzconnected.org/discussion/comment/244916#Comment_244916

Many, many thanks. Your reply is reassuring and helpful. Very much appreciate your sharing. I’ll seek a geriatric psychiatrist.

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