Our journey with PSP has been brief .. compared to many on here. From symptoms showing up to passing I would estimate 4 years. Diagnosed in May 2023 after a 9 month slog of neurologists, eye doctors, scans and MRi appointments. At diagnosis my 63 year old husband had effortful speech with long pauses before starting to talk. His eyes were failing him. He had a frozen face and staring eyes and walked with a shuffle. He’d fallen a few times and had obsessive moments where he would decide on something and have to do it! Very quickly thereafter he lost his speech completely, his ability to dress undress, get in and out of bed, put his shoes on and began finding different food difficult to swallow. He was impulsive and fell and needed 1:1 supervision at all times to keep him safe . 6 months ago he was totally dependant upon me for everything including being fed and holding drinks to his mouth. He’d been hospitalised twice, had bouts of aspiration pneumonia and utis. He had a fowley catheter and could not walk unaided … without me holding on to him. Two months ago he became bed bound, on liquid only diet and slept 20 hours plus each day. He was half the size weight wise than a year before and on morphine for pain. Tremors and flinching much worse. Two weeks before the nurses attached a syringe driver as he was so bony it just hurt to lie still. He wanted less liquid, couldn’t see.. all heartbreaking to watch. Age 64 and looked nothing like he looked a year ago. He died a week ago. At home with me as he wanted. We had amazing support from our GP, St Luke’s Hospice, Ots and physios and district nurses but nothing we did stopped PSP doggedly marching onto the end. Nuerologist only good for diagnosis not the day job!
I am now living alone for the first time 42 years.
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Sun-flowerwearer
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Dear Sun-flowerwearer that is heartbreaking news. Huge virtual hugs for you 🫂. I'm glad you were able to keep him home as he wanted but it must have been so hard to see him struggle and then finally letting go 💔. I will be thinking of you. Xxx
So sorry to hear this Sun-flowerwearer. This sounds so like my FIL in a lot of ways. I agree you cannot stop the PSP but you can make them as comfortable and do everything possible by having the support available as you did. It was lovely that you kept your husband at home until the end. Thinking about you. Take care of yourself.
I'm so sorry to read your post, almost everything you've said is a carbon copy of the experience with my husband, who lost the fight last year. He was 71 and was diagnosed 4 years previously. He too died at home after a second stay in hospital. I had to fight to get him home as they really had no idea about PSP, and didn't understand that his decline was due to that as much as the fall that he was admitted for. Our only difference was we had an amazing consultant neurologist, who specialised in PSP; sadly that wasn't enough to stop the progression of this awful disease.
I hope you can take comfort by the fact that your husband is no longer suffering; that's what has got me through it. I just miss the good times we had before PSP, all 54 years of them.
I'm sorry if this post has made it sound all about me, but sometimes it helps the process. I'm getting through it and you will too.
In a few precise lines you have concentrated the reality, the cruelty of the diseases that today we call PSP for the patient and the caregiver, the impotence of Medical Science to cure or at least make this disease chronic in a dignified manner and the little attention that this medical research It is included in the plans of developed countries to combat it.
Now, the hard moments of parting, the emptiness in the house, the meeting and reorganizing of the objects that accompanied life together, the daily activities that must find new objectives, new paths that give meaning and content. There is still a lot of life and much to do.
The path, the paths will appear, the emptiness after 42 years will not be able to be filled by anything, nor by anyone, and will accompany you on the new path.
Thank you for having written those lines , a big hug and courage.
My dad is at end of life with this awful disease PSP fighting to get the help he needs every day. Agree once diagnosed his consultant slowly faded away. I was called out of work on Friday as the care home rang to say he was passing, but then realised they had found him asleep with his eyes open which is part of the condition x
what to say - you must have felt so helpless as this cruel disease tightened its grip and there was nothing you could do to save him. I do hope you have a loving family and friends who can support you but just remember he’s now out of pain and not suffering any more. My husband is on this journey and his limitations worsen each week - it’s very scary but we have to soldier on. Thinking of you 😔
So sorry for your loss. I hope you’re getting the support you need and can take some comfort from knowing you did everything you could and that your husband is no longer suffering. Lisa
so very sorry to hear of your loss. It’s the most dreadful disease having to watch your loved ones deteriorate and in your case so rapidly. My heart goes out to you.
I so sorry for your loss of your husband. I lost my darling Huband and of 51 years in May this year and your husbands story was exactly the same. He passed at home with our family around him surrounded by love. This is a hard journey for the ones that are left but try to stay strong. RIP💜
sorry to hear about your husband. You describe exactly my experience with mine. Unfortunately due to my poor health my husband is in a nursing home now as I couldn’t cope with the constant falling. Take care. X
So sorry to hear of your loss. Thank you for sharing your experience of psp. It resonated with me hugely as carer for my partner with psp. Look after yourself and take comfort in knowing you did all you could for your husband during those harrowing timesxx
so sorry you had to say goodbye to your husband it’s an awful disease the worst I’ve ever seen I lost my husband too 21 months ago I think we miss them more because they were so dependent on us and now we have to learn to not only lose our husband but learn to not have to be so needed anymore
Please be kind to yourself you have done an amazing job and he was at home with you I believe now they have no illnesses we just can’t be with them massive hugs to you 🌹
Hello Sun-flowerwearerMy story is quite similar to yours. My husband passed away on 3rd July.
He was diagnosed just before Lockdown, but probably had the beginning of PSP a year or so before then.
His condition was Progressive too. He had many backward falls & occasionally sideways.
He used a walking stick , then a Rollator etc etc eventually ending up sadly bedridden. That was so hard to see him in that hospital bed, as he was a very fit & active guy before horrendous PSP struck.
He too lost so much weight he was a shadow of his former self. I cared for him at home all the time, it was just me & him❤ of course he had Carers & was under Pallative care with local Hospice & district nurses but I have to be honest nobody knows your loved one like you do. I dont think GPs District nurses have much knowledge of PSP. He went into the local Hospice for about a week but that was a fight to get him in there & he went in for Symptom control & they expected him to come home to me after the 2weeks were up!!! I found that very strange as at that point he was hardly swallowing/ eating/ drinking.
I just about made it to his bedside to hold his hand before he passed away.
I believe he waited for me before he let go💔💔
I hope you made some lovely memories with your husband & like you for the first time in 26yrs I'm on my own.
Give yourself time to rest & reflect now which I'm trying to do but it's very hard. Thinking of you &of all the other caregivers & Warriors of PSP❤❤❤❤
I'm so genuinely sorry for your great loss.I know what you have gone through. You have made huge sacrifices to love and care for your dear husband and he knows this and he thanks you. Be brave soldier.
Sosorry to hear of your loss Sun flower wearer. Concentrate on remembering the good times before PSP took over. I hope my family do when I go. My journey is a bit different In that I had a stroke about four years prior to my diagnosis. The stroke left me paralysed on my righ (dominant) side. I had started to improve, but then found whatever I did I was deteriorating. It was so frustrating. I wondered if I’d had another stroke. I went to A&E for a scan - after having seen my GP who put it down to old age! Eventually saw a Neurologist who diagnosed PSP within a minute - it was so obvious to someone knowledgeable. Perhaps, though, it has been easier to accept than if I’d been able-bodied. I sincerely hope I don’t deteriorate much more, for my family’s as well as my own sake. Anyway, as I say - remember the good times; I’m sure it’s what your husband would want.
so sorry to hear that sad news, I can understand as my wife as PSP diagnosed some 4 years ago, since then she as gone slowly down hill with most of the symptoms your husband had, I was her main carer for most of the time then when I just burnt out and could not manage anymore she had carers coming in 3 times a day but it even got to dangerous for them to handle her so now she is in a nursing home under palative care, we count every day as not sure how much longer she as got but the suffering is heartbreaking to watch, my deepest thoughts are with you as I can feel the suffering you have been through, god bless
Hi sun-flowerwearer, sorry to read your husband has passed,but life will still go on with friends and family to get you through the grief and lonely times to come , but take comfort in remembering the great times you both shared in your 42 years together. Good thoughts for the future. Xxx
I send my condolences and strength to you Sun-flowerwearer. What a hard journey for you and your hubby. We can only give what we are able to try and ease their suffering. Sounds like your husband was so lucky to have you in his life for those 42 years.
I'm in tears as I read this. My beautiful wife Jenny had almost the same progression. She passed forward from this form of existence only three months ago. She started to struggle in 2021 but still was able to walk on her own and swallowing fine. She lost 30 lbs in her final year. She also got impulsive and insistent on standing up on her own which led to many falls, some even while I was 3 feet away from her. I ended up having to do everything for her which had me frustrated and frazzled sometimes on a daily basis but I would give anything now to go back to being frazzled while caring for her. But then I think she would have had to suffer longer with not being able to swallow, being wheelchair bound, struggling to answer people that spoke to her.
Horrible f***ing disease that I will curse until the day I die
Thank you to everyone who has responded. I know you all understand the trauma of caring for someone you love deeply and seeing them succumb to this horrible disease. We grieve every day for so many reasons while they are with us and the grief and despair escalates with progression. I felt relieved for my husband initially but it’s oniy been 11 days and I now feel without the burden of daily caring totally devastated for him losing his life to this monster. I was consumed by my own hell of the physical and emotional toll of having to be on duty 24/7 as well as sadness for my husbands plight. Now my burden has disappeared I can truely focus on what he has lost .. his old age for a start as wasn’t even at retirement age…at 64. I can think just of him and not mix it up with my own self pity too. I am sure you all know what I mean.
so sorry to hear of your sad loss. My wife who I have been married to for 64 years is slowly deterorating , reading al your posts make me dispair and upset for her future but we must carry on regardless. Our love to you xx
Thank you for sharing the details of your husband's unfair and untimely demise. As you say 64 is just too young. Ruth has just turned 65 and her progress has been slower than your husband's, but we are heading to the same sad end and it is getting closer. And then I too have no idea what the world holds when I am not doing 24/7 care. You have been amazing to be his carer all this time and all of us here salute you, even if the outside world have little idea what you have been through.
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