Article on Hospice in US

[daffodil48]

this article talks about how, if you have dementia, you can get into hospice sooner than the 6 months left to live and the criteria they follow. Is PSP classed as a dementia disease? agingcare.com/articles/hosp...

[Dadshelper]

Curious and curiouser.... I just spoke to dad's doctor and social worker at the nursing home a few hours ago about bringing hospice in.

What I was told is that if a person has a terminal illness, there is no real hope for prevention care to be of help and doctor signs off hospice care is needed then Medicare will pick up 100% of the cost. Normally they come when there appears to be six months or less to live but quite often hospice is involved for a longer time.

I have a meeting with a hospice agency tomorrow, Thursday, at nursing home. I'll know more then.

Ron

[daffodil48 in reply to Dadshelper]

Good luck. I have read how helpful they are xxxx

[Motts in reply to Dadshelper]

Ron - Good Luck with your meeting. I still remember ours. I dreaded it and was a bit nervous. The meeting went well and mom's hospice worker was an angle. When I left the meeting a Safety Officer had a tiny stray wild kitten - I took him home - fed him & washed off his flea . . . I needed a cuddly fur ball to hug and love and he is still with us today. I believe animals rescue us more than we rescue them. Sending you and Dad HUGS - Granni B

[Dadshelper in reply to Dadshelper]

I meet with 3 hospice agencies at the nursing home, that way they could visually see dad. After that I went to have some lunch and mull over the choices. All the agencies basically offer the same services and the cost is covered 100% by Medicare/Medicaid . I choose my agency, all things being equal this rep's father passed away from complications to Lewy Body disease and she knew of PSP/CBD. The paperwork was completed and they should start seeing dad today, with 3x/week the scheduled visits..subject to increase if need arises.

Ron

[DeDeDickson]

I’ll be honest, I didn’t read the entire article word for word but did skim through to see if I could find where it indicated that hospice would take a patient sooner than “six months to live”. I didn’t see it. I work for a hospice (patient care coordinator) and the doctor overseeing the patient’s hospice care must sign an order stating that the patient has less than six months to live ‘if the disease progresses its normal course’ (the exact words escape me now). I do not believe there is any exception to that.

But, to answer your question about PSP being classed as a dementia disease, I don’t know. 😉

xoDorie

[NHGrace]

PSP doesn’t not fall under dementia as many never experience the symptoms associated (like short term memory loss, etc). Of course, some do. But PSP is a neurological condition with more motor neuron involvement (like ALS). Having said that, PSP of a certain stage should qualify for hospice. Yes, there is the “would your doctor be surprised if you’re living in 6 months” umbrella, but my mom was started in May to provide additional help and support while we renovate our home to accommodate her living with us. They’be been amazing! And everyone we’ve met through them says that most people don’t utilize it until too late (they are actively dying), when quality of life and help adding meaning are less of an issue because medication/pain management (if the dying people have either) are the main focus.

[racinlady]

I tried to respond to this yesterday, but I guess my reply wasn't accepted because I had been off the site for awhile. I moved and didn't have WiFi for a couple weeks.

Yes, PSP will qualify your loved one for hospice services in the US. My husband has been in a hospice program for two years this month. Hospices here seem to have different interpretations of the Medicare rules so you will have to be persistent. The first hospice our Dr recommended refused my husband, but the second one I contacted admitted him. Hospice has been a godsend. They are a great help with figuring out how to solve the problems that arise with PSP. They can get you the equipment you need and can bring in OT's and PT's as needed. They also provide home health aides to help with bathing and personal care. The support and reassurance that you get helps make this journey not so lonely. They also, along with our Dr, helped me see a year ago that it was time for a care home for my husband. I am grateful for that. I don't know where I'd be by now if I had tried to continue caring for him by myself.

An additional benefit of having hospice is that it has enabled us to use an assisted living facility for my husband instead of a more costly nursing home. Hospice oversees his medications and offers a medical backup.