I have been reading all I could on this group since my husband was diagnosed in June 2014. I think I was I denial a long time as things progressed so slow. However, in lighting speed ( at least it feels that way to me) he has taken a rapid decline, has been bed ridden 5 days now. Not eating or drinking much. I'm trying to get hospice out here to get him under their care. They say the Hospice Dr. has to come out and see if he meets the Medicare guidelines, but isn't scheduled to come till tomorrow. I called this morning asking if there wasn't any way someone could come today! I had to call the EMS Saturday night as his hands kept turning dark blue. Sorry I'm rambling here but feel this group understands. Thanks for listening to me ramble on.
I'm finally in the group😪: I have been... - PSP Association
I'm finally in the group😪
Welcome to a group no one wants to belong to,don't be sorry about rambling on.Ask away,scream, rant ,always someone that understands what your going through. It's a lonely journey.
Most importantly take care of yourself.
Dee in BC
Thanks for replying Dee, it sure is a long lonely journey that only this group can truly relate to!
Allalone2 welcome to this group. Sad to have to welcome you but glad you have asked for help. I live in the UK so things are different here.
However PSP is not there one day and the next it has changed your life. You are right to try and get the Hospice involved. I am so sorry the doctor can't come to visit until tomorrow.
Has your husband been diagnosed by a neurologist? I am assuming he has? Keep moistening his lips and he might be able to swallow ice cream or jello as I think you call it? Anything which just slides down. Jello is classed as a fluid. Just give him small amounts and make sure it has gone down before you give more.
Have you got any family or friends with you as this must be very scary but f alone?
I am sure others will give you some advice too.
Marie x
Hi Marie, thanks for the reply. Hospice has not called back today like I was told they would! I'm getting a bad feeling about this Hospice if they don't even care enough to call you back!
I have been giving him small sips of different liquids. He had me scared this morning when he kept moaning and yelling but couldn't tell where his pain was. Found some expired morphin that I gave him, it did finally help. I'm glad I found this group as its been a real help. We're in the US so things might e different.
Allalone2 That is bad that they haven't phoned you. Have you had any contact with them before? Here it's usual to have contact early on so they are aware of what is likely to happen.
I have to say at the end my husband died in hospital not the Hospice as he wanted to do. I was told by the hospital that there were no beds. It is a very small Hospice so that may be the case. Anyway my daughter and I spent every day with him and my son some nights. When he did his 2 nights then I took over and did a night. It was so tiring that I am still not right.
Your Hospice should come to you tomorrow. In the meantime try to give him some fluid as you have been, or ice cream or jello.
It is terrible that he couldn't tell you where the pain was. My husband usually had it in his legs and neck. Sometimes his arms. If you can massage him that might help.
Hugs to you
Marie x
Hi Allalone2, I live in Los Angeles, Calif. I am 77 years old. My son died, age 55, on May 4, 2017 at home. He was first DX with PD Jan 2015, and with PSP on Jan 2017.
He had, as I do, Kaiser Permanente health insurance. His through the ACA, mine thro my pension plan. He was first put under Palliative care, Nov 2016, when he suffered a bout of aspiration Pneumonia. He was then moved to Hospice care in Feb/March 2017. He received quick and excellent care. He suffered a 2nd bout of aspiration pneumonia April, 2017. He was given a PEG (feeding tube). I was told that my son had a very AGGRESSIVE form of PSP. It attacks different people differently.
My thoughts and blessing are with you.
Hi Enjoysalud. Can you tell me the difference between Palliative care and Hospice Care? In order to be put under Palliative care, did your son have to have an acute health condition like pneumonia?
Hi Etoile, I am leaving in the morning for Portland, Oregon, to visit with my daughter and family thro the Thanksgiving holiday week. There I will not have access to a computer.
I suggest that you GOOGLE the difference between Hospice and Palliative Care, but more importantly if you live in the USA that you call your medical insurance plan and find out what are their requirements. There are subtle differences between health insurance plans in the USA.
If you do NOT live in the USA call your health provider...........different countries have different criteria.
Just finished watching an older French film with English subtitles called AMOUR.....a very sad, but realistic film of an older caretaker and his wife who does NOT want hospital care. I ordered it thro Netflix.
Blessings.
Hi enjoysalud. I live in Canada (Ontario) but my brother who has PSP lives in the province of Quebec. I understand that the criteria to receive palliative care are different in each country. In our case, I have a hard time to get the criteria in writing. When I asked the social worker (lead worker for my brother) for the criteria and the steps to access palliative care in writing, she said that this information was in an administrative document that they don't share. She wanted to explain me the criteria and the steps verbally. Past experiences and my memory make me want to see this type of information in writing first, then meet for further clarifications, if needed. I find their answer to be lacking in transparency. I'm looking elsewhere but would rather spend my time doing something else.
I did not see the movie AMOUR yet but it's on my list and easily accessible with Netflix.
The family of my husband are from the States. Unfortunately, his grandmother who was organizing a fest for Thanksgiving is no longer with us. I have good memories of traveling to North Carolina for Thanksgiving. It was a break from our grey November and fun to hear the accent, see the Christmas decoration being put up, the shopping hype, football watching on Tv and going to the church. Most importantly, it was a very nice family gathering.
Have a wonderful time with your family for Thanksgiving.
So sad age 55 makes it even sadder. Did he have an autopsy done to clairify PSP or another Parkinson's Plus disease?
Hi, just walked in the door from my Oregon trip (7:45pm, 11/25). No. I regret that I did not have the time to research donating my son's brain.
yes would of been good to of had a autopsy. Hope you enjoyed Oregon, We live in Oregon have been doing a clinical trial at OHSU with the drug Salsalate for 7 months. Finished with it now so this winter no more traveling
Wow! My daughter lives in Tualatin, Oregon. She is a Trust and Estate attorney, married, two children both attending the U of Oregon. Her husband is a native of there. I have been flying back and forth since forever. The tradition, when my son was well, was that they would fly down on WED of Thanksgiving. We would be together on Thanksgiving, on Friday spend all day at Disneyland (my son always had a year round pass there), on Saturday we would pick up my dad and go out to lunch and they would leave on Sunday. Traditions change as we change.
This was my first Thanksgiving without my son. Last year he was getting over his first pneumonia bout, but doing good, and he and I had dinner together and played Scrabble after.
This year, the day before Thanksgiving, we went to see COCO. The story of a young boy who desperately wants to be a musician. It made me teary eyed as my son was a musician.
Yes, I do regret not having donated my son's brain, mostly to help the science of PSP along rather than confirm which brain disease my son had.............although that would have been nice.
Welcome. I live in UK so can't offer practical advice regarding hospice. Here I had good responses.
I remember how frightening and isolating it feels.
My husband also seemed to progress slowly but then really quickly.
All I can say is to give him mashed up food so he doesn't choke and to reassure him you are there.
I hope you get help quickly.
love from Jean xx
Allalone, I don't respond much either. I'm sort of off the subject that you are asking for right now. But I could totally relate to what you said about denial of psp because it was a slow progression for your husband. My husband seems slow too, so sometimes that seems to puzzle the doctors. Do you mind explaining his slow progression. My husband was diagnosed Aug 2015. He probably had it a year and half before that. My husband is still active we continue our daily lives but stay home much more and retired from work at 62 years old because of it. Thanks if you have time or anyone else is the same way.
So sorry I know you dont want to be here. So much good info and understandings here. Praying for all.♥️♥️♥️♥️♥️
Thanks everyone for your replies. What a great group!
Sorry I hadn't replied till now, but it's been a whirl wind since I first posted. I kept on Hospice and begged them to get out here as I needed them. They finally sent a nurse on that was on call Tuesday night instead of going through the process the next day just to give me piece of mind. Long story short once she got here and checked him over she made some phone calls and got the ok from Hospice and the Hospice Dr. to get him transported by Ambulance right away to the Hospice House. He's under their care right now and is being treated for pain.
I'll write more when I have time and things settle down some. Thanks again for all of you being so kind and supportive!
God Bless Ya All!
I no more than get on this group to chat and I'm dealing with my husband at the end of his life. It's a matter of maybe 24 left if that. He has deteriorated so fast the Dr. is even shocked! I'm at his beside watching this terrible desease suck the life out of him and taking his last breathes from him! 😪😰
My thoughts are with you. May you find the strength to support him.
love from Jean x
I'm still in shock, my dear husband passed away just before midnight Saturday night! I was his caregiver 24/7 for the past 3 1/2 years and he went into a death spiral so fast I still can't believe it. I miss him so much and I'm so lonely without him, how does one go on? My heart is broken💔
This group was my one and only source for info. on this terrible disease! Thank you all for being on here and sharing your stories.
God Bless you all 😇
I'm still having a hard time dealing with my husbands quick death. I knew the end would come one day but not what seemed out of the blue. I have been trying to get something done everyday. I was sick with a very nasty cold the first week so that didn't help. I have his Memorial Service finally planned for Dec. 17th. Not looking forward to that as it will ripe open the wound even deeper.
God Bless you all and I'll keep praying for y'all!
I'm so sorry.
My husband deteriorated and died quickly - but not as fast as you.
I still find it hard to take in. I found the memorial service helped me to remember him as he was. We all felt he would have enjoyed it.
Let us know how it goes.
Big hug for you from Jean xx
You are in the right place. I, too, was in denial because of the slow progression of my husband's disease until recently. Now, It is a daily struggle. I know in the not-so-distant future I will have to call in palliative care/hospice, but we're not quite there yet.
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