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Old 08-17-2019, 02:45 PM
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Originally Posted by choclgs View Post
Many of those offering advice, especially the experts, have not been caregivers before. Many times I've left appointments with more questions than answers and could have same myself the trouble of going to speak with them.
I went to a caregivers support meeting this last week and was floored, angered to be honest, at the misinformation the facilitator was giving. Her qualifications for leading the meeting are based on her end of life care for her boyfriend. If you ask her, he had dementia. So I was left to assume she knew what we're up against. When I said something about the lack of resources for respite care, she loudly declared that anyone with a dementia diagnosis can be put on hospice. That's not true. Hospice is reserved for a very specific period, namely the last 6-12 months of life as best predicted by a medical professional. So when I pressed her to explain more about this widely-available hospice care, she said her loved one passed in four months after his diagnosis. There are some MAJOR gaps in her story or her experience. I can't tell which one. I was relieved that another man there had been caring for his wife for over six years and could support me in assuring her that's not how it works. But what if he hadn't been there? Dementia is a generic diagnosis and can be made decades before passing. We're on year 11 with my dad.

We're finally looking into a day respite program. My dad will qualify for roughly 60 hours a month of care. We'll take him and pick him up and it's completely the opposite of his preferred lifestyle. He's a quiet, stay at home, watch documentaries kind of guy. But we have no choice. It's breaking my heart that we can't afford in-home care.
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