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DiscussionGary Passed Away: Some thoughts on my hospice experience
Caregivers: Dementia | Last Active: 1 day ago | Replies (17)Comment receiving replies
Replies to "First of all I'm so sorry for your husband's passing and am amazed at the astonishing..."
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@standinginfaith - Oh my heart!
I am so so sad to hear of your experience, especially under these circumstances! Those people should NOT be in that line of work, in my opinion! (But not for you to deal with at all, especially not now...)
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Not that this concerns you now, but I am facing the hospice decision for my mother, and am listening to others' trials at this point in their lives to see whether it is the right time for this step. Our mother I am told is declining overall, but has no major medical conditions other than declining stability/highly limited mobility and increasing confusion about her circumstances.
I am advised by our mother's care facility doctor to consider placing Mom under hospice care through their facility. I am also advised - by my retired geriatric physician sibling - that facilities make a great deal of money from the switchover to Medicare-covered hospice care. This makes me question this step, not to mention that I have questions about how available the facility's designated hospice nurse and 2 aides can handle the 24/7 attention I would want for our mother in case of need, as she certainly is not the only hospice patient at this (upscale - i.e. very expensive, but all of them are) personal care facility, which our family has been associated with since my grandmother spent time there (over 40 years ago) in a coma for 2 years, and my father was a Trustee and lived there in independent living with my mother for 7 years before he passed away in 2013.
My mother is losing weight at 90 pounds now, but has a good appetite fortunately, though the food quality leaves MUCH to be desired.
If anyone would kindly share their decision on taking this next step under similar circumstances, I would greatly value and appreciate that. Her doctor states there is no doubt she would qualify for this Medicare-covered hospice care, and that if she were to improve, she could come off it (all with the necessary medical evaluations being done), and even then go back on it again if/as decline resumes/continues.
Finally, I was just cautioned by a family friend with her mother (at a different, upscale facility) in hospice short-term, then back out of hospice for now, and into memory care: that Medicare will NOT cover her regular medications (like for heart, thyroid, etc.) - ONLY those medications during hospice that are related to pain management. So I have to wonder what those medications will cost for us to continue her on out-of-pocket.
(I only mention "upscale" to refer to the extraordinary costs, yet with the same basic struggles, staff shortages, food quality issues, bureaucracy and communications issues that most assisted living facilities present these days.)
Thank you everyone. Mayo Clinic Forum is a lifeline in so many ways, and for me for so many years too. It makes these hardships less isolating, and sometimes less heartwrenching.