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DiscussionDoes anyone have experience with Palliative Care?
Chronic Pain | Last Active: Jul 29 9:27am | Replies (154)Comment receiving replies
Replies to "I am also bothered by some of these posts. Hospice is an incredible resource that is..."
Hi,
I have been going to palliative care for several years now. I am 49 a nurse (and yes, I am DNR/DNI). I have gastroparesis which is a "terminal" diagnosis. I am not going to die today or in the next few years even, but I will likely die sooner than most because of it.
Palliative care is for those who have greater than six months (but up to 2 years), though I have been going to palliative care for 4-5 years now. I feel that by improving my quality of life I have been able to extend the quantity. Though this isn't always possible, it can happen. Palliative care does NOT mean you are actively dying. Improving the symptoms (and a good provider can think outside the box and has a lot of great tricks for symptoms management up their sleeves)/
Also, I have severe, chronic pain and palliative care has allowed this to be managed according to my wishes. The appropriate management of pain is what is allowing me to continue working.
My wishes are to die in my home, surrounded by my pets, friends and family. Since this is down the road, palliative care has allowed me to live my life to the fullest.
Windyshores,
I have praised hospice for the IN CARE HOME OF my dad.
They were marvelous in ALL aspects.
He died in his home, as HE Planned.
My point is, and its relevance, was in response to the initial post regarding PALLIATIVE CARE.
This was MY experience with My mother.
When she moved into palliative care from assisted living and had 2 doctors declare she had dementia, I became her medical poa.
If you read my post closely, you will see it was the Facility that was asking me 3 times if I would consider hospice for my mom.
Hospice did not address me.
She simply was Not a hospice candidate, not when she entered the palliative care facility or when she died.
Her condition did not warrant hospice at the initial admittance NOR when she died.
This was My observation and My private nurses observation.
Im directing my concerns with the palliative care FACILITY that had asked me 3 times and tried to SELL me into putting my mom into a hospice program by enticing me by saying she would benefit by getting:
1) 2 baths a week
2) her supplies paid for
3) a free wheel chair
She was already being Provided by the Facility with 2 baths a week, and could afford paying for whatever she needed.
My private nurse and I discussed:
1) WHAT would my mom be gaining MEDICALLY by going into a program she MEDICALLY And Financially did Not need? What would I be gaining if she went into hospice?
Nothing.
2) What would she be losing?
My legal ability to direct the Facility in providing the medical protocols my mom would want which I Did direct.
We decided No to the Facilities offer for hospices care 3 times.
THATS the point of my comment regarding Palliative care and the freedoms the Resident And Family MIGHT lose if they surrender their legal rights to a third party.
As Jake commented, they incurred a similar situation.
When considering palliative care for yourself and/or your loved one, Im suggesting the people considering it to be Thoroughly educated in ALL aspects.
Especially when the time comes when death is drawing near.
I wanted to maintain authority over my moms care.
I was blessed to do so.
She did not NEED hospice, BUT, if I and my private nurse thought her health would benefit from it, yes, I would have enrolled her in the Hospice of the Valleys program.
As for considering these graduated retirement communities:
understand,
your freedoms are yours while you're in good INDEPENDENT health, living in one of their private apartments.
Once you require assisted or palliative care, your freedoms and possibly your families freedoms diminish UNLESS you have a good medical POA out into place.
Hopefully knowing that fact wont bother you, but rather prepare you to put into place what you or your loved ones want until they leave this earth.