Well, I've been reading posts here for the last few years and, although informative, I didn't think I'd want / need to post myself ... How things change!
My wife was diagnosed with PSP in 2019 and since then I've been no1 carer with some help from a small (and wonderful) care team (privately funded) who give me about 20 hrs a week off and a 48hr break every 2 weeks. K (wife) is chair/wheelchair/bed bound, can't speak, can't eat (PEG tube fed), can barely see (very little eye movement), is 'functionally' incontinent (ie sort of knows if she needs the loo but can't communicate her need in time). Her (our) days are spent listening to Radio4 (God bless the BBC!) and me reading to her.
So life is constrained to say the least. We had an active, vibrant, busy, sociable life before the diagnosis. Now we are confined to barracks. Trips out are marred by discomfort (in the wheelchair) or the Russian roulette of unpredictable bowel movements. Incontinence pads cope brilliantly with the urine ... but unexpected poos are a nightmare to cope with if we're out and about.
Most friends have, understandably, fallen by the wayside. I keep up with some, but few people want to come and sit with us given K's catatonic state. We're no longer a laugh a minute; not the greatest of company.
To get dark about things, K is otherwise remarkably healthy: good heart, good lungs (reduced chance of aspiration due to PEG tube), great liver. I wish I could say the same about myself. So, all the info says that death comes about through falls (not likely for us as K is not put in a position where she might fall) or aspiration pneumonia (also currently unlikely). So what is her life expectancy? And what is her lived experience? And also what has my life become?
I foolishly asked our nurse specialist what the longest time a PSP sufferer in her experience had lived for. She said 20 years. I'm afraid I swore. I'll be lucky if I can survive another 3. I'm just so bored. My brain is atrophying. I've been disagnosed with high blood pressure. I can't get enough exercise. I'm drinking too much. K's PSP is slowly killing her. Her PSP is rapidly killing me.
I konw, I know, you'll all say 'Stop feeling sorry for yourself' 'Get a grip', but my life has been torn apart by this as well. K used to say (when she could speak) "Why me?" ... I feel the same.
I'm not looking for solutions. There are none. My wedding vows say 'til death do us part' and 'in sickness and in health' and, although I don't have a religious bone in my body, I did make those vows (in a registry office) and I will (probably) stick by them. But at what cost? I have friends who are dying of cancer. I have a friend with MND. Their life sentances are awful, but in relation to PSP their's are mercifully quick.
OK, I'll shut up now. Thanks for reading if you've got this far, and welcoome to my world. If you're caring for someone with PSP your experience might be similar. If you're a PSP sufferer then please know that those who care for you love you but are suffering too.
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Leygonie
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Hi Leygonie, I'm reading this just as I go to bed after a day of caring, appointments and all the other stuff. I really wanted an early night but husband with psp likes to stay up quite late so early nights are stuff of dreams. I feel I want to respond more fully but I'm too tired for that just now but I felt it important to say how much your post resonated with me and I think many feel the same abd I'd hope noone responds with "get a grip". You describe so accurately life of a psp carer and I've been known to say its a death sentence for the psp person but its a life sentence for the carer. Know that we are here x
I get it, my Mum isn’t as far as your wife, but her illness has not only just ruined her life it’s ruined mine too.
I work full time, then spend 5 evenings at Muns + any emergency evenings, pick ups, medical appointments, other appointments, food shopping, dealing with rubbish carers etc. She can still just about communicate and has her mental capacity according to the NHS so refuses to go to any sort of nursing home (I so understand as she’s 70) but this means I loose even more time. Life is a constant struggle waiting for the next thing and it just takes more from me the worse she gets.
In reality I don’t want to do this, but she’s my Mum and I’m the only one local so there is no one else. But I crave the opportunity just to hitch the caravan up and go away without arranging my brother to come down to supervise Mum.
PSP and CBD doesn’t just ruin my Mum’s life, it’s ruined mine, my husbands and sometimes I just wish I could step off the treadmill to be me again.
I think we all emphasise with the conflicting emotions around PSP and the nature of the "loss" that we cannot explain to most people. I'll be sounding off one of these days too. Meanwhile know that you are a good, kind person and nobody deserves what this disease does to us. Take care. You are not alone 🫂
Dear Leygonie, I am sorry to hear of your struggles. The unknown future is also hard to cope with. My husband had symptoms in 2012 and diagnosed 2 years later with PSP. Life changed from bad to worse very slowly and gradually . We had a happy marriage and no way I was going to leave him. But my own health suffered and 10 years after caring for him at home , I had to admit him to a nursing home. I was there daily to see him and made his life bearable. He passed a year later. But in the last year of his life I could live my life again with the help of the Nursing home. Don’t feel guilty about a ‘Home’ and when the time comes your loved one will understand too, that there is a limit to what we can cope with. I wish you all the best 🙏
I feel your pain and know exactly what you mean. I am my husbands sole carer and I have realised this disease not only destroys your loved one but also chips away at you own sanity/well being. I am lucky that I can still work and able to have a couple of hours of an evening to visit friends or take my frustrations out at the gym. My thoughts are with you and hope you find a way to try and build something for yourself again.
My heart goes out to you. Our journey ended in 2019 following a diagnosis in 2015, but I still dip in and out of this forum.
Everything you have written resonates with me and I'm sure everyone on here. The thing that really stands out though is that apart from carers, who you fund, you seem not to have any other support. I think it's time for you to reach out for some. You are doing your utmost to keep your beloved wife safe, but who is caring for you? Have you both ever had any respite? Are your GP or community nurses involved in her care? You have to care for you too, so please seek some help.
OMG, If I were to post something it would be exactly the same as this. I am in exactly the same circumstances apart from the fact that my husband did suffer with a nasty bout of pneumonia in January and the medical team made the decision that he needed 24 hour nursing care. They told me to prepare myself for the worst. Malc was moved to a nursing home 10 miles from where we live. At this point his catheter was removed, and we had strict instructions Nil by Mouth.
Since being there Malc has stabilised and has been free from infections. I visit every day and spend at least six hours with him. There are not enough staff to be able to offer the interaction he needs. He cries when I leave, he wants to be home but in reality this is impossible.
I agree, a cruel condition for both patient and carer.
Hi, I think you have written what many carers feel when caring for someone with PSP/CBD. It is a traumatic time for everyone & you are having to deal with so much.You have described my husband, whom I lost in February this year.
He couldn't move, smile, talk, express himself in any way, was incontinent, had terrible spasms, it is truly a wicked disease.
My daughter always described his condition as 'his living hell'.
He, like your wife, was also fit, heart, lungs, kidneys etc, he passed after 7 years, which is what they say is the expected life expectancy for someone with CBD.
He was peg fed but he still choked & aspirated many times. His coughing & mucus caused him tremendous problems. He eventually couldn't digest his feeds and his body rejected them. The peg was good for medication as it kept him relatively free from pain in his last weeks, days & hours.
I have never heard of anyone living for 20 years with this condition. How cruel would that be.
I am so sorry you are going through this awful time. All I can suggest is that you get as much help & support as you can, I think you should be entitled to CHC funding which would give you respite hours. That, in itself is a battle to get but worth it if you get it.
We survived by listening to music on utube, he loved Santana & Pink Floyd. Smooth radio got us through many sleepless nights.
My husband is now at peace, he is free from this monstrous disease, I miss him terribly & at the moment can only remember his suffering, I hope with time I will remember our happier days .
Rant away! You're not alone in your thoughts. My mother's in a similar way, also diagnosed in 2019, but can still eat and declined a PEG, if needed. It's just another layer of cruelness in the disease that it can be so drawn out especially once a patient bed/chair bound. The frustrations of communication go both ways too. For I'm just as helpless trying to understand what she has been trying to say.
Dark days for carers too and can't imagine anyone here, Leygonie, saying "get a grip". I can get funny comments from my husband and some friends when I say I want her to deteriorate quickly but it's coming from a humane place that when the inevitable happens it will stop her pain for she has no life. Why would you want quantity of days when there's no quality?
No right answers I'm afraid, just rhetorical questions. I hope you're making the most of those 48hrs respite, guilt free.
Morning Leygonie you are not alone in your journey with your wife. I myself felt the very same as yourself in fact I would say I felt trapped in my own home. No longer able to get out as it wasn’t safe to leave my husband. Even with carers to help you are there 24/7. Sadly Karol passed a month ago 💔 Gone from being on the go all the time to nothing. 💜
oh yes Leygonie I hear you! Thank you for voicing what so many of us have been thinking. I don’t know who I am anymore, my identity has changed so much. The problems you say of going out, dealing with those situations when out, oh yes! My husband has refused PEG, so the noise of him clearing his throat and the time taken to eat a meal, another reason unable to go out. These problems limit my going out too, as we haven’t found somebody who feels comfortable feeding him or taking him to the loo. We have Carers who get him up and dressed but that is it. As you say, radio and listening to the tv is our entertainment. We now have ‘books’ from the RNIB, three books read and recorded on memory sticks. The RNIB have been so helpful and these books have been a real welcome change!
Thank you for ‘sounding off’, you have voiced what so many of us feel. We are with you.
According to the information I have so far, for the most common and aggressive types of PSP (PSP-RS and PSP-CBD), a half-life is estimated to be 6 years from diagnosis and 8 from the first symptoms, although 4%. of cases can reach up to 8 after diagnosis, 10 from the first symptoms. Other types such as PSP-P (Parkinsonism), PSP-GF and other very rare ones may be longer lasting.
Although this disease offers very erratic symptoms in its development, I have a document that describes a sequence of symptoms as a function of time, starting from the first symptoms, and that can guide, although not precisely, at what point in the disease. the disease that the patient encounters. This information has somewhat shocking data since it comes at the end of the process.
And if, especially the main caregiver, is dedicated to managing the process but also offering support and affection to the patient and also taking serious care of himself, not losing contacts or social activities, participating in activities that provide distraction and vital stimulation and taking vacations of at least 10 days, twice a year.
There is life during the process and there is life after.
Finally, reproducing the phrase from “Anne Heady”: "Never forget to get enough rest, ask for help and, above all, get rid of guilt!"
OMG!!! It’s rarely I dip in these days, much less contribute, but I just had to reply to you. My husbands journey ended over 7 years ago, having been diagnosed 3 years before. I still bare the scars, anyone who says “get a grip” has DEFINITELY never come across PSP, much less cared for a loved one.
I always said, my husband has PSP, but I’m the one suffering.
Your post any one of us could have written and I assure you, if you look back, you will read no end of similar posts. We have all been/are in the dark place you find yourself in, longing for the end to come, then consumed with the guilt of wishing our loved one gone. Don’t doubt for one minute that some have even tried to speed that process. ( please don’t!)
There is nothing I can say will help you at this moment. My own thoughts are, with the benefit of that wonderful thing called hind sight. Now it is all over for me, I will never regret those long years. It was a very precious time, caring for my husband. I still miss him dreadfully, even though my life has moved on and I am happy again.
The only regrets I have is I didn’t accept or demand more help. Thought I was Superwoman, well PSP soon put paid to that notion! The most important person in your wife’s care is you. Therefore you have to 100% fit, big laugh I know, but it does mean you MUST get plenty of rest, eat well and have time off, even if it is inconvenient. Your wife will not survive if you don’t.
The most important thing I can pass on to you is DITCH THE GUILT!
thankyou so much Leygonie for posting this. I recognise so much of what you’ve written and it’s such a relief that someone is brave enough to say it. It helps to know there are others feeling mentally emotionally and physically exhausted and wondering how any of us carers come out of this alive - never mind with some degree of sanity
. I’m sole carer for my husband and i realised today when i took him out for a hospital appointment - which meant that for once someone else was “responsible” for his safety for an hour and a half, - that I spend every waking minute in a state of high tension, waiting for the latest fall while my attention is taken for a moment, or for the overwhelming incoherent agitation he suffers, or the latest current symptom such as choking or double incontinence, to change our lives again. . I feel frequently overwhelmed and can’t see how we go on, except that it seems to be the only thing we can do until we don’t. It is a life sentence. And i feel guilty for “betraying » him by writing all this.
All i can do is send you a hug and the knowledge that you’re not alone.
Your experience sounds very similar to my parents. My mom had PSP over 5 to 7 years up until the 29th April this year with my dad being her main carer 24hrs a day, 7 days a week with no respite for 4 years. My mom's heart, lungs, blood pressure, liver were all good. She ate by mouth and never had pneumonia or aspiration. She continued like this until the last 2 weeks of her life where her jaw just randomly shut tight for nearly 2 days and she just collapsed forward in the chair unable to sustain her own body weight. Then she became bed bound and eventually nil by mouth. We all suffered severe trauma in the final days watching our mom having not eaten for 14 days or fluids for 9 days. You have to find the strength to carry on and be there for the person who never asked for this evil disease. My dad now says he has all the time to do whatever he wants but now doesn't want the time because my mom is no longer here. Please reach out and speak to someone if you are feeling low.
LeygonieI'm sorry to hear this disease has entered your lifes.
Think carefully about whether it is time for your loved one to enter a care facility. Don't let this disease take you too. We don't have to keep loved ones at home with this disease, going to a care facility does not mean we are not playing our part til the end, it means we are taking a positive step, to stay as fresh as we can for as long as we can so we give our psp person the very best of us up to the very end. Stay strong.
Great words that largely reflect my life too. Now that Ruth has a PEG she could continue a long time even though she is becoming more locked in and everything is slowly declining as you described. Meantime I am drinking too much and it is getting worse......I have been the carer since 2016 and I need a better strategy if I am going to survive this. Anyway, no answers but as you can see you are not alone!
I would love to! We would have a lot to talk about and put right!
On a serious note Ruth has in place a RESPECT form from the hospice which highlights her wishes. The hospice tells me that if we think Ruth has no quality of life (unable to communicate and not appearing responsive to family etc.), we can choose to no longer feed her through the PEG and only use it for hydration. This would bring about her death in a short period of time. Ruth is happy about this and it is apparently ethical.
Anyway, I do hope you hang in there and get through this in one piece.
I agree with what’s been said so far. PSP is a burden to all involved. My mum (78) was diagnosed in 2020 after years or her backward falling being investigated. I was happily working overseas and my dad became her full time carer, though she could still do a lot at that time.
I agreed to come back to UK and ‘support’ my dad last summer. However, once back, dad (86) basically said he couldn’t do anything anymore. So, here I am 10 months on, I haven’t worked and can’t claim carers allowance as I’ve been out of U.K. too long. I live in the same house so never escape and am not in an area I grew up in/have friends in. My dad makes a song and dance if I go to visit a friend in London and I am just getting grumpier and grumpier day by day. We have carers come in 3 times a day to help mum wash/dress etc. but they stay 30 minutes and the timetable isn’t fixed weekly so it’s hard to try and make use of that time for myself.
Mum’s not independently mobile anymore but the impulsivity makes her try and get up if she’s left unattended. The Parkinson’s nurse thinks we wouldn’t get CHC because she doesn’t fall enough, but that’s only because I’m yelling at her 3-10 times a day to not try! She’s put me in touch with a charity that offers carer support and who might be able to sit with her 3 hours a week when they have a space. 🤞🏽🤞🏽🤞🏽
I feel awful as I’m so grumpy, but I’m also stressed at what’s happening to my future… I’m 56 and not wealthy enough to retire. I’m living off of savings and dad thinks that’s a reasonable ask as mum was a good mum. He thinks I don’t have to worry about the future as I’ll inherit their half of the house (I bought half to help them a few years back) so long as they don’t go into care.
The guilt at my own grumpiness and stress of own future makes me feel like a horrible person and I’m filled with dread that this will go one for many more years and take me with it. I know there are many people out there who are in similar situations and who survive it and sharing your stories and coping mechanisms helps me believe I can too. Thank you all and stay strong.
Hey Salamanda, you really are in a rough place, and I just want to say I am sorry for it. I am sure it feels like your ordeal is endless. Mine did, too, but things don’t stay the same, although it can be impossible to see any hope from where you are. Exhaustion is the worst. If you can get outside at all, even for a half an hour, I recommend it. Taking care of yourself is important, too.
Hi SalamandaX, in reading you response I noted you mentioned the Parkinsons nurse said chc success unlikely. We had this from a parkinsons nurse but we applied and were fortunate to get it. Key is there are primary health needs and very importantly well met needs are still needs, so if you're having to guide, physically help and save mum from falling she has high needs in this area. I would suggest you read up on chc the process, criteria etc and assess your mum against the domains and if you think you have a chance get one of the medical professionals to engage and help you apply. Do use the info on this site about chc if you put chc in the search bar it will come up with previously useful posts on the subject. Also if you cluck on members and type in my name and then look through my replies to others you'll find some about chc which may be helpful. We are going away tomorrow...planning a break even in the next county with a psp person is I think one of the most stressful thongs so far....I'll need a holiday after it🤣 once you've read up on chc do come back to me by a pist or private message and I'll help all I can . BW Millidog x
Hi Salamanda,Just a quick comment about CHC. It's irrelevant that your Mum is only having a few falls, the reality is that she can potentially fall more often and the risks with those.
Look at PSPA's website on CHC, they have some wording that helps on all the categories.
Hi Leygonie, you're having a tough time and, as you can see by the replies, everyone on this forum caring for a PSP sufferer knows exactly what you're going through. This is how it is. Can I be honest with you?
You ask what is K's life expectancy? Who knows? But I think you can forget the 20 years max you've been told. Some may, but having read so many posts here the average span seems to be much less than that. My own experience with my husband was less than 5 years. Still active in 2019, diagnosed in 2021 and passed away in January this year.
He, too, was in reasonably good health. No problems with major organs but then PSP gradually shut him down. And that's the thing with PSP, it's progressive. The French call it a paralysis, not a palsy (paralysiesupranucléaireprogressive) which explains it more clearly, I feel.
What is her lived experience? Probably not great, given that she can't move freely, enjoy eating, can't speak or see well.
What has your life become? Your life is on hold until you are no longer required as a carer. You are actually fortunate that you have so much 'respite time'. Some carers do not get any.
I'm sure that most carers have tumbled into the 'struggle puddle' that you are currently in. Take a deep breath, make the most of your free time to strengthen yourself and remember why you married the girl you are now having to do so much for. Love will see you through this.
Oh, and have a rant anytime you need to. As you've seen, we all understand.
You 'sound off' as often as you need to! I understand exactly how you feel although my husband with PSP is not as advanced as your dear wife. It is the most difficult, life changing, heart breaking, tiring, draining thing being a carer for a loved one. I feel very sad that some of your friends have drifted away, we are experiencing that already. Some I know will be here with us both every step of the way and they are the special ones you need to focus on and not think of the ones who have drifted. I know it is difficult but when you do get a bit of time to yourself try and take some form of exercise. I have started exercising again and it has helped me not just physically but mentally and I seem to be able to focus on things better. Like you say, there are no answers, but this forum is here for you and so many of us understand. I have recently signed up to 'Headspace', and have found it to be really helpful. It offers a free 30 day trial then a one off payment for a year. we have the soundscapes on through the day (birdsong, flowing river sounds etc) even my husband has found it relaxing so you could both benefit from it. Also lots of meditation and talks, which I have found help me. Bit sceptical at first but would recommend it, here is the link;
Thank you for posting this. It sounds as though you and your wife are at a similar stage to us, except my husband has CBD and we have the BBC World service! So far I have kept strong for both of us . Luckily I am fit - for now - but yes, I’m also drinking too much - because I can - even though I know it’s doing me no good. He’s just had the PEG fitted - and during the procedure they have discovered a malignant tumour. The irony and unfairness of it . But you are facing this stoically, keeping strong, and that is all we can do for our loved ones. Thank you to everyone on the forum for your support
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