Larry is in the later stages of PSP. He’s in remarkable good health to date but he is declining. I have been asking the primary care doctor about hospice care for the last year. I have been told he really wasn’t at the stage for hospice. My understanding of hospice was one didn’t have to be dying to be in it. This past week on the home visit from the doctor palliative care was suggested. That would lead to hospice when necessary. The intake nurse showed up yesterday to do the paper work. She asked me why I had not request hospice care. Told her I had been asking about it but being told no. She made a phone call to her office. As of now the care will start out as palliative unless after the doctor signs off on it being hospice. That will be determined this coming week. Supposedly I will get more support if he is in hospice. What that support is I don’t know. We’ll see.
Palliative/Hospice Care: Larry is in the... - PSP Association
Palliative/Hospice Care
Good luck Jeff.
I'm not sure what palliative care means if it is not hospice. I guess that must be an American concept? Maybe it is what we call a nursing home? A good nursing home should give him all that he needs. In the UK an Hospice is mainly about end of life palliative care, pain control especially.
It must be a big step for you. Wishing you well on that.
Best to you both.
Kevin
Palliative care focuses on the symptoms and stress of the disease and the treatment. It treats a wide range of issues that can include pain, depression, anxiety, fatigue, shortness of breath, constipation, nausea, loss of appetite and difficulty sleeping.
The nurse felt home hospice would be better at this point. That does more. What I have no idea.
It must be grim then.
I'm sorry to hear that.
Best to you.
Kevin
He’s still n good shape for someone with this disease but he is declining. In the last 6 weeks it has been faster than in the past. I don’t think he will die soon. The home hospice is to put in place what I will need when the end really is here.
Hi Kevin
We will be offered palliative care through our hospice in West Sussex at the right time. In the uk I think it depends where you live as to level and collaboration of relevant services.
Best
Helen
Thanks Helen
We've not met before here. So hello! 
My query was more about Jeff's situation in the States.
Thanks for coming back though.
My wife is in a Nursing Home whose staff are trained in end of life and palliative care. They are backed up by the palliative care team from a local NGO.
Were she in a different nursing home she would go to the local Hospice when she had a need.
As you say it varies so much.
Best to you
Kevin
GP's don't seem to have a clue about Hospices. I was told by my doctor, they were places for people dying of Cancer only!
Hospices are marvellous places, they help people to live with their illness, not die.
Hope they can provide the help you need.
Lots of love
Anne
Good luck Jeff hope you get the care and the help you have been asking for, xxxx
We will see what happens. I seem to have gotten the visiting nurse’s attention yesterday. She understood what I was asking for.
Isn't it wonderful when someone finally understands the situation... and helps!
Hospice at mom's nursing home was very helpful. I am not sure what they offer in home. But hopefully you can get out of the house & exercise like you used to... or just sit & have coffee with your cousin. I used to feel like a hamster on the wheel... around & around we go... coffee was my sanity time (& still is). Sending you & Larry hugs... Granni B
P. S. We have about 50 hummingbirds now. Not the hundreds like previous years. So we are saving money on sugar.
Yes, someone finally heard me. We’ll see what happens now.
The two mugs of coffee jolt me into action daily. I usually run out of steam by noon. Then it’s nap time.
We get a few hummingbird every year. They feed on the flowers. They are so territorial. I’ve found myself in the middle of fights a few times. They also seem to question my presents at time.
Agree with Heady, the hospices are there for anyone with a terminal illness and the help they provide is generally excellent, they care for the patient and family too! Never ever be put off using one! X
That was my understanding. If I didn’t think medicine fairly incompetent to start this would have been a surprise.
Hi, Heady, good to see you here as ever!
As a general response for our UK friends: hospice here in the US is often geared to home care rather than being provided in an institutional setting, although it can also be that, more commonly if a patient is discharged from acute medical treatment at a hospital to a hospice level of care. It essentially differs from general home nursing care in not offering physical or occupational therapy geared to improving function, instead providing more comfort to patient and carer.
Palliative care might be more what you'd say is for living with illness rather than actively dying, but still assumes that relieving symptoms rather than treating the illness is the goal, like our hospice does.
My mother's marvelous GP, who was Henry's, and kindly agreed to take my mother on when she moved here last fall, is the one insisting she get evaluated for hospice, even though the hospital said she's too healthy for it, since the hospice nurses can provide pain meds at need, and my mother has been having a lot of pain. We are trying to get her back on her feet, but I am having to face the idea that may not happen. I'm worried. We were having such good times!
Hi EC, sorry to hear your Mum is having problems. I hope they can help her with the pain. Always here if you need a rant. AND don't forget yourself in all this, make sure you are getting plenty of rest.
Sending big hug and much love
Lots of love
Anne
Thanks, Anne. Love back atcha!
The nurse yesterday said doctors don’t seem to understand hospice isn’t just for people with 6 months left. How they got their degrees without learning this is a mystery.
There was some kind of legal change to the near- death requirement in recent years. Hospice when I first approached maybe in 2013 said a doctor had to sign a statement predicting death in 6 weeks. In 2015 or 16 I was told that was obsolete.
Dear Jeff
How frustrating for you!! But pleased you will both hopefully now get more support
Love and hugs Tippy
It is a relief for me to know the nurse felt hospice would be better for him.
Dear Jeff, that's good. I had great help with hospice for my sweetheart and am in the process of applying for it for my mother. Here it meant having lovely caring nurses available on call day and night, medical supplies and painkillers that I could administer delivered to the door, a social worker who offered support to me and helpfully advised me on what to do when he died, music therapy, which was wonderful, and a massage therapist, too. There were other services I didn't get a chance to access. I hope your agency is as good as ours. And you can get some help so you might rest a bit.
Best wishes, Sarah
It’s funny. We are both so independent. I welcome help but an not sure what this will offer.
You don't need to accept anything, but it might get you a chance for a bit of rest for yourself.
They will offer to help with bathing and dressing Larry and they’ll do some basic chores around the house like change the bedding. When the time is right they will deal with pain management. At least this is what hospice did in 2013. I hope they are still as good as they used to be. It’s tough letting others into your space but once you get used to it I think you’ll be glad that you did. I wish you all the best.
Sending hugs from I SewBears
Xoxo
He is up most days at 3:30 in the morning. I may or may not go back to bed. By 7am we have eaten breakfast, had showers and if his bedding needs changing, which is almost daily, the laundry is in the washer or the dryer. Someone from hospice showing up at 8 or 9am isn’t going to have a lot to do.
I hope you get the help you need, Jeff.
Its clearly become a huge struggle for you and Larry. Good luck. I found the palliative care team wonderful for Chris.
love, Jean x
The care has taken a toll on me physically and emotionally. I know we are moving into a new phase and am trying to get things organized. This should be a big help. I hope.
Yes. It's loss after loss isn't it ?
X
There’s a new plateau in development. No idea where he will land.
Dad was in a nursing home and had hospice the last couple months. Hospice basically took over all meds and supplying any type of medical devices/equipment with the nursing home staff still doing the normal routine of feeding, bathing, etc. The staff also administers any meds hospice prescribed. A hospice nurse dropping in daily for a bit to do a checkup and just talk. I was told a patient can go to hospice long before being on "death's doorstep". The only hard criteria I know of is death COULD happen within 6 months IF nothing is done at all. My aunt was under hospice care for nearly a year after she refused treatment for her 3rd bout of lung cancer.
My understanding of palliative care is it's more of a pain management care for the terminally ill.
Ron
Other than PSP Larry is healthy. He will tell anyone who asked he feels fine until he tries to do something. He is in the latter stages of this disease and his body is beginning to fail. This could take another year or more. No way to really know.
Hi Jeff. Nigel had the Palliative Care team involved from the hospice but at home. The wonderful thing about the team is that there is usually a 24 hour help phone line and there is a Palliative Care Team doctor. They were so lovely. two of them came out when I could not get him off the commode and were always willing to listen and then in hopsital they liaised with the Hospital Palliative Care team. Good luck. Big hug. AlliBee
Thanks. No idea what to expect.
i sympathise my husband has had PSP for 3and a half years He is wheelchair bound and often very silent but sometimes when nurses or doctors come he tells them that he is fine !! last night he was in alot of pain and wanted it cured immediately. I phoned the out of hours doctors and spoke to a wonderful nurse who said He needs pain management and to get him into the local hospice in order to get on top of this More and more I am being told thtz the Hospice is the place to mange pain and get advice not to die
I really think the hospice nurses are the best help on offer
With love
Hi Jeff its interesting reading and learning from yours and others experiences. I feel you are a dedicated devoted and loving carer for Larry. Love to you both x
Hi Jeff
Hope you are able to get the help & support you both need. You look after Larry so well it must have taken it's toll on you. Fingers crossed they offer something sensible & useful for you both. xxx
Best of luck Jeff!
Glad to hear that you’ll have more support in this challenging times.
Love and light to you both,
Mx
It is amazing you are talking about this right now. a few weeks ago CH was in a bad way. Each night when he went to bed he was sure that it was to be his last night. I called the GP to find out what I should have in place for this time. Nobody got back to me. Last week CH became unresponsive and stopped breathing for about 90 seconds after a gigantic sneeze. After a hospital visit it turn out to be a vagas nerve episode. When we attended a followup appointment with the GP I again inquired about the possible need for palliative care and what I should prepare for if things moved fast. The GP contacted the palliative care unit attached to the hospital and they have since contacted me. Again the aim is to keep CH at home as long as we can manage but I will be contacted by Social worker, a nurse and a doctor over the next two weeks. I am sure that it is support and comfort where needed whether in the last few weeks or days. Now Ch has picked up and is even trying to walk a bit with support ( I think he will keep going for months now). Who can tell with this disease what is to happen next? I think you have to keep positive and be prepared for anything. ... val. (we are TSV, Australia).
I’ve asked about hospice over the last year several times being told not yet. My understanding is when a disease has progressed to a certain point hospice can start for quality of life. The intake nurse was here all of three minutes before she asked me why I hadn’t asked for hospice instead of palliative care. After a life time of medical mistakes occurring in my life I‘ve learned to be wary of what a doctor tells me. Most everyone of them coming in admit they know little about the disease. I printed out symptom stages and give it to them now. Even the hospice nurse didn’t know anything about PSP but she knew what she saw. Larry isn’t dying but he is declining.
I live in the US and when my doctor requested hospice, I was told they would not accept him as a patient unless they felt he had six months or less to live. I disagreed that he had that little time left, but I really needed help at that point. He died less than two weeks later. I feel that his death was brought on by the general anesthesia from a partial hip replacement as it accelerated all of his symptoms and he went downhill fast. He had surgery in October and died two days before Christmas.
Sorry you did get the help you needed. Most medical people seem to use the 6 months to live. The intake nurse said not true. There is a bit of a divergence of opinion between the nurse and her office. The last doctor in here is to be contacted to have the palliative care upgraded to hospice. At this point either is fine. I can start him with palliative then move to hospice when they are all happy.
I called Hospice at Home directly. No Dr. Involved. They came out the next day, evaluated my wife, and bingo she met their requirements. Don't hesitate to bypass your Dr. He can't do anything for PSP, except keep billing you.
I don't regret calling them one bit. We have an excellent team helping me with my wife. Hospice is not just for end of life care. They will come help you.
And if by chance you get turned down, call another Hospice company.
Thanks. Good to know.
That’s where I’m at right now. Hubby spent a night in the hospital for observation. My MIL couldn’t rouse him from sleep when she came to get him that morning. So his neuro suggested taking him to the ER. They checked everything while there. All was fine. Probably disease process. When I remarked to the ER physician that thankfully he doesn’t have any swallowing issues, she said “Oh, they’re coming.” (Gee, thanks lady!)
Anyway, at his follow up with his GP, he suggested hospice. In process of checking them out now. In talking to the few who’d been out to the house, he could be in hospice for years. I guess they re-up the original 6 month term if the patient is still in decline.
But he has a neurology recheck on Thursday. If he says there is nothing else he can do...we’ll be signing George up with one of them.
This past week my 89 year old MIL informed me she couldn’t watch George anymore, as she’s not been feeling well. So I’ve been trying to shit n git someone else in here. Found a neighbor friend who used to be in health care. Fingers crossed it works out, as I can afford her.
Let me just say, I am tired of having to figure everything out and make all these decisions.
Let us know how things go for you.
Cindy
He may never develop swallowing problems. That’s the thing about this disease. There’s no consistency. All the symptoms are a general guideline.
That was my understanding about the swallowing issues—he might not get them. Tell you what, though, he scared me the other day. He was at the table eating lunch and he made this awful face. I’m hollering “Are you choking?” He couldn’t answer. And I’m thinking the ER doc was right and he’s choking on food now. Well, come to find out he was nauseous and trying to vomit...with not much help from his weak stomach muscles. It just kind of bubbled out of his mouth and down the front of his shirt and shorts. A lot of cleanup with these diseases, no?
The vomiting could be a problem with aspirating it into the lungs. As for Larry’s choking it is most every meal. I’ve learned distress choking from the regular choking. As long as he is breathing he is OK. The two distress chokings were due to something getting stuck at the back of his throat not in his throat. He managed to work it out eventually. Lots of clean up. Loads of laundry.
Wish you all the luck Jeff, if it helps, John was discharged from the Parkinson's specialist last December as there was nothing more they could offer and felt that John only had months left, I didn't believe that, but the St Peter's hospice were informed, and started palliative care with pain management and reduced as much of his daily medication as poss. Since last Christmas he has had two small strokes, chest infection, and bowel problems, apart from all the PSP's symptoms, but he has fought every challenge, and eight months on he is still strong and fighting, although completely wheelchair bound no body control. I will say they have been wonderful only see them when John has any episodes. They helped with advice on what we need to do to set up for the inevitable, like Power of attorney, DNR which we both agreed on, no pegs, and to stay at home till the end. They also have a drop in day at the hospice with so much going on for your wellbeing including chats and coffee shop, They have set up a five week one day course, to begin in September for us both, me as carer with transport provided, which can include physiotherapy. So hope the hospice you get can help you Jeff with as much. Good luck and wishes Jean 🙋
Thank for the information.
Oh by the way Jeff we are from Bristol UK, different postcodes may vary xx
We’re in Philadelphia, PA. Things will definitely be different here.
I am in the US and my mother was put into hospice (at my request) after almost a year of being in a clinical drug trial at the Mayo clinic that wasn't helping her. (The trial has since been terminated due to lack of efficacy.) Once in hospice, you have so much support! It really is awesome. They have a visiting nurse as often as you need, they supply all the adaptive equipment, they gave us a home alert system so that if she was home alone she could signal for help (she couldn't speak anymore, but was still an independent ambulator), they supplied all sorts of medications (most of which we never used), and also there are hospice volunteers that come once a week to just visit your loved one so you can have a break. There was a chaplain that would visit as often as requested too..she was there for my mom and for the family. There was a 24/7 phone number to call for advice, help, etc. If needed, someone came to our home usually within an hour of requesting. This was all done while she was living with me in my home. No nursing home involved. She stayed with us until she died last Nov. I cannot recommend hospice care for the end stage of this disease enough. They "enroll" them for 90 days initially, and then if they still qualify (meaning they still have a disease that will end their life) then they enroll them for another 90 days. And on it goes as long as you need them.
Good to know. Thanks.
Jeff,
Hospice covers people who are covered my medicare and diagnosed with progressive neurodegenerative diseases without having to meet the 6 month rule. My husband who recently passed away, was in a hospice program for almost 3 years. It is a common mis-conception still held by many doctors (and some hospices still adhere to the old rule too). Don't give up, you will find hospice to be very helpful in many ways; needed equipment, nursing help, personal care, etc.. It is also possible to be in a hospice program without your doctor's referral if it is a problem getting that. There was a brief period where our hospice decided my husband wasn't declining and discharged him. I appealed their decision and lost the appeal.
We were then referred for palliative care. As they explained it to me. They do an evaluation, then decide if you need any nursing help. If they decide you do, they will order it until it is no longer needed. You go through this process each time you need any help. Hospice, on the other hand, is just a phone call away 24/7. That's a huge difference! Fortunately, my husband landed in the hospital 3 wks later and ended up right back on hospice.
One added piece of advice, check hospice reviews and ratings There are differences between them. We had to change twice. The first because we moved. The second because I wasn't happy because I didn't feel like we functioned like a team. When we changed, the only regret I had was that I waited so long.
I wish you luck. Don't give up, you won't regret it.
Pat
Thanks for the advice. I will check out the reviews of this group.
Jeff
Thanks for all the information on hospice .I was just thinking about inquring about hospice care for myself . All the infomation was very informative. I live in Delaware. And enjoy reading your posts .
God Bless you both
Maria Elena
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