Although mom is 95, her health is relatively ok. She does rest alot, and has lost 6 lbs. this month due to decreased appetite.
I was just wanting a break occasionally and have had a stream of bad home health aides and thought hospice may be the route to go Are there things about hospice care I should be aware of? What are the pros/cons? Any hidden charges that medicare doesn't cover?
The cons: the word itself "Hospice". Patients say NO as if it would somehow put off the inevitable. Family members think it is euthanasia. It is NOT about killing the patient, it's about removing fear and pain. It's about no more 911 calls, it's about no more rush to the ER. It's about taking time to say goodbye and not living in fear.
Know that you can drop out of Hospice care at any time. If she developes something new that you think should be treated more aggressively than is hospice policy you can simply withdraw before starting the treatment.
Statistically, hospice does not shorten lives. There have been studies (published on this site) that show persons in similar situations live a little longer on hospice than those who are not on hospice.
My husband was not going to "get better" from his congestive heart failure or from his dementia. My mother is not going to "get better" from her broken hip or her arthritis or her dementia. The hospice care was/is to see that they feel better -- or as good as they possibly can -- as long as they live. They matter to the very end. They don't just "monitor" patients on their way to death, they proactively make that journey more comfortable for all concerned. As a small detail, my husband was getting very bothered by his constant drooling. The nurse immediately came up with a solution that worked great. It didn't cure the root cause -- the dementia -- but it increased his comfort. My mother is having trouble sleeping. The hospice nurse is able to prescribe a sleeping aid and to immediately respond to family observations. We are not waiting to get a message to a doctor and a call back. Everything is streamlined to get immediate action.
My mother is improving more than expected (I think in part because of the extra attention she now has) and it is possible she will leave hospice if she continues to improve, and then go back on it later.
Hospice is definitely a program for persons in the final leg of their life journey. (Obviously that determination can't always be accurate.) If you don't feel your mother is at that point, you may want to defer consideration of hospice to a later time. But if she is near the end I don't think you need fear that hospice will hasten her death.
I have nothing but positive, encouraging things to say about both experiences.
It is intended for persons who have a life expectancy of 6 months or less, but obviously no one can predict that length of time precisely. Your mother probably qualifies because of the sudden weight loss. My mother qualifies because at 93 she broke her hip and has dementia. That combination puts her in the statistical category of persons who typically die within 6 months of the hip break. I thought it made a lot of sense to take advantage of what she was eligible for. The nursing home staff seems to be working well with the hospice workers and appreciate more helping hands.
So you see what I'm saying - my heart goes out because this is awful for you, but it may well be that brother and staff are not just wantonly making bad decisions and feel terribly attacked and accused and defensive. This is a time of high emotions for everyone. If you really have been told "no" by a judge in those firmest possible terms, you really have done all you can on the medical care issues; and you should do what you can non-medically to be with Mom and make her time as pleasant as you can.
let them operate unimpeded as long as they act like professionals , show your teeth if they cross your line in the sand ..
all costs should be medicare covered .
same thing happened with aps again as in my moms case -- they contact poa and threaten them in advance -- just to keep them on their toes . crazy policy but it works and americans are some common sense people . if it works , we want a boat load of it and we want it NOW .. lol
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