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What is palliative care?

Posted by DanL @tunared, Aug 30 2:38pm

Our last visit with the neurologist was depressing. She said my wife is way past the bell curve in her progression, most patients with her dementia and the length of time she has been diagnosed have died. I’m not sure if that is good or bad. The neurologist did say she was end stage and we should be talking to a palliative care. We have a palliative care appointment in 3 days. What should I expect? Is there anything I should be careful of saying or not saying?

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celia16 | @celia16 | Sep 20 7:11am
In reply to @tullynut "I started the process of higher levels of care for my mother before we actually made..." + (show)
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I started the process of higher levels of care for my mother before we actually made a change. The starts were short term stays at memory care facilities. I did not realize they would accept patients for a week or two, but found that many would do that if they had The room to do so. Vacation of a week or two was a godsend for me. It also began the process of eventually moving her into a care facility full-time. In hindsight, I think the adjustment to a care facility is harder for the caregiver than it is for the dementia, patient. The beginning that process was short stays of a week or two, that would allow my husband and I to have a break and a vacation without worry, was a godsend.

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That respite care is very precious for caregivers. I had arranged admission for 10 days to give us a time to get rest, when the room became unavailable. Sigh. There is a shortage around here. Of course, this is self pay and expensive, but just necessary imo. I did discover that if the person is on Hospice they will make all the arrangements for respite care at a local NH at no cost for 5 days! It’s covered by Medicare. Transport too! I discovered that private pay for transport by ambulance is about $700.00 per trip!

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saraemma3709 | @saraemma3709 | Sep 21 8:15am
In reply to @tullynut "I started the process of higher levels of care for my mother before we actually made..." + (show)
Profile picture for tullynut @tullynut

I started the process of higher levels of care for my mother before we actually made a change. The starts were short term stays at memory care facilities. I did not realize they would accept patients for a week or two, but found that many would do that if they had The room to do so. Vacation of a week or two was a godsend for me. It also began the process of eventually moving her into a care facility full-time. In hindsight, I think the adjustment to a care facility is harder for the caregiver than it is for the dementia, patient. The beginning that process was short stays of a week or two, that would allow my husband and I to have a break and a vacation without worry, was a godsend.

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Yes, it is harder on the caregiver. My husband had to be moved to memory care because he could no longer stand or use the walker so I could not care for him at home not sure at all if he understands where he is I do have to make sure that his care That he needs is given.

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