Hospice consult: I have managed to get the... - PSP Association

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Hospice consult


I have managed to get the nursing homes panties in a bunch. Oops, don’t really care. After all, I am my dads voice since PSP took that from him. I contacted his primary care doc to see when it would be appropriate to bring hospice in. She said a consult right now would be great, too many people wait too long to bring hospice in. The nursing home flipped out! “Do you know something we don’t know,” they said. Just that he is 4-5 years into a progressive terminal disease, duh. Had the consult yesterday and the hospice nurse is quite certain he will qualify. Last week he was moved to pudding thick liquids and neuro said he needs feeding tube. Dad says no to that but I’m not sure he really understands what that means so meeting with dietician to explain that to him next week. Today he was moved to puréed diet and physical therapy ordered because mobility had declined significantly. Sorry such a long post. Seems like when it rains it pours.

13 Replies

Well done. You do know something the home doesn't. Hospices are great. I had a 6 hour break yesterday as a hospice at home nurse took over my caring. Nice pub lunch with my wife's cousin and some necessary shopping.

My husband was still walking and talking when he went to the Hospice day centre. With regards to the PEG, staff at the hospice recommended he had one fitted two years before my husband eventually agreed. He was on puréed food all that time but given slowly, he never choked on it. He did when he managed to steal a chip from a plate though. When the PEG was first suggested by the hospice, he had a swallowing X-ray at the hospital and the doctor said it wasn’t necessary at that time as well. He eventually had one fitted 10 months before he decided he didn’t want to be fed any more. I don’t know what the relationship is between care homes and the hospice as my husband stayed at home but on one occasion, when I hurt my back, he had to go into a care home for two weeks. During that time the hospice would not let him attend the day centre. The explanation was that for that time he was the care homes responsibility.

Best wishes


You did the right thing in my opinion, considering you probably know more about the effects PSP can produce then the nursing home staff and doctor.

I constantly ask the staff why things are done, what's this medicine for etc. Dad can't do it and like you say "I am his voice".


You definitely did the right thing.

I've lost count of the number of arguments I had with health and social care professionals over my dad's situation.

He had input from the hospice for the last 12 month's of his life, and they supported and helped him with the necessary paperwork to set out his wishes for end of life care ie no intervention, no tube feeding etc.

My stock phrase was "with all due respect, my only concern is my dad, not your..." insert here whichever phrase you like - resource, staff, budget, knowledge etc.

Fight as hard as you need to to get the care you deserve - good luck x

in reply to Martha_k_uk

Thanks for the words of encouragement!

Dear Tante, that was not a long post, and if you DO need a long post - you do it, and don't apologize!!

It sounds like you're in the middle of a 'step-down' in your father's health." always a stressful adjustment - you don't know what's going to happen and where it will "settle". Sounds like you're doing everything sensible you can. As usual, no-one understands PSP the way we do - no surprise there.

I hope he's able to take in the information about PEG feeding and make a decision he's content with. Most of all, he is aware that you are there and advocating for him and giving love. Nothing better you can do than that :-)

Hugs to you XXX

Anne G.

Yes Anne, as usual, outsiders don’t understand. I guess that’s what makes this forum so important after all, others who understand what you’re going through.

We had to make peg tube decision today. After one day on puréed food he apparently did nothing but choke so the nurse called us in to tell us we needed to make decision now. After carefully explaining, dad agreed to it. I have been dreading this step.☹️

Sorry to hear that Tante. Special hug to him tonight XX


Hi tlovins

It sounds like you are doing great.

My experience of most professionals in this care business is that they just don't want opinions.

The other thing is that they clearly communicate between themselves, but to often not with us,

It feels so dated, like stepping back into history. So I do say my piece and, though always trying to be diplomatic, ?I have my say! Like you I am my wife's voice and feel it wrong not to speak up.

It sounds like you are doing well.

I'm so sorry about the step down.

Best to you both



Your dad is blessed to have a daughter who is looking out for his best interest. And yes, You do know more than that nursing staff. From personal experience, I waited too long for hospice care. The company I used were fantastic.

Wishing you wisdom and strength in your oversight of care for your dad.


Hi Tlovins - When my mom went into the nursing home I was told that they had only cared for one other PSP patient. So it might help if you can aid them (gently of course) into the world of PSP. Years ago I arrived to see my mom hustling down a hallway with a therapist (a small woman compared to mom) holding onto a thick belt. My heart did some flops as I stopped them, introduced myself and asked do you know my mom has PSP and falls easily. The woman said she is having a great walk and is enjoying it so I figure she will tell me when she is tired. After I shared my limited knowledge of PSP the woman's face change from happy to oh my. Together we helped mom back to her wheel chair (mom was upset with me for ruining her fun). Mom did love to walk and luckily there was a tall muscular young man who took her for walk once in while. I was always happy to see him and so was mom. Follow you gut - it is usually right. Sending You Hugs - Granni B

My dad has been on hospice care since day one. I took him to the doctor and he said I don’t know exactly what’s wrong but let’s get help in. Since then, he was diagnosed with PSP and it has been a whirlwind of emotions. Misdiagnosed for MANY year really pisses me off.

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