I've been a member of this community since my husband, Tony, was finally diagnosed with PSP a year ago - but haven't posted any messages until now. Sadly Tony lost his battle with the condition earlier this month and I wanted to write something about our experiences. But also to say how helpful it's been to read all the posts and for the information shared. There have been times when it's been difficult to read about the pain and difficulties so many dedicated family members and carers have to suffer on a daily basis, but also very comforting that we weren't alone.
Like many people with PSP, he was originally thought to have Parkinsons. Looking back, Tony had actually been demonstrating symptoms for a couple of years - such as falling backwards and failing mobility - but they were masked by the fact he was waiting for a hip replacement operation. So whenever he was seen by a health professional, his falls were put down to problems with his hip. After his eventual hip operation in March 2018 (following many months of delay), he failed to get his expected mobility back and we had to re-assess what was happening.
Our 'journey' since that time will be very familiar to many people in this community. We had to accept that Tony would need assistance to shower, dress and would need a wheelchair to get around. After seeing a specialist last February, whose suspicions of a PSP diagnosis were confirmed in May, we had to face the reality that not only did Tony have a life-limiting condition, it was probable that it was already quite advanced. Within a few months his ability to swallow without choking deteriorated, and despite an initial horror of having a PEG (stomach-feeding) inserted, the increasingly constant chest infections and difficulties getting the right level of nutrition and hydration persuaded us both that it was the only way forward. He had this procedure in November and this probably extended his life for at least a couple of months.
By this time he could do very little for himself and we were lucky enough to have a team of excellent carers coming in daily. I was still trying to work full-time in a demanding role, and Tony was desperate for me not to have to give up work - so every day demanded a military-like schedule to ensure everything worked. We continued to get excellent support from a number of health and social care professionals - including a Parkinsons nurse (who also had a few PSP patients); the local community nurse team; a speech & language therapist; dietitian; social work team etc.
I should explain that we live in Perthshire in Scotland, and undoubtedly benefited from the Scottish Government's policy of free personal care & integrated health/social care system (even when it didn't work as well as it should have - everyone tried their hardest to sort things for us).
Tony lost his battle with this cruel condition three weeks ago. He died at home - as he'd wished - in the hospital bed we were provided by the health service. The initial relief that his pain & suffering was finally over has, of course, been overtaken with a profound sense of loss and grief. We were together for 40 years and it will take me a long time to come to terms with his passing. But - I can remember with pride and love the courage he showed, the amazing care he experienced, the fantastic support we've had from family, friends and neighbours. And above all the memories of a life well-lived and a love which will endure. I'm very lucky. Tony was a writer and journalist, so I have boxes of his cuttings and examples of his writing - which will be a great comfort in the months and years to come.
Forgive me for such a long post, but I want to finish with a list of the things that really helped us - which may be helpful for those who are still in the earlier stages of PSP.
1: an early assessment by the local social care team
2: which led to direct payments (Self-Directed Support Option 1), allowing us to contract our own self-employed carers on a flexible basis
3: CBD oil (we used Nature's Aid 10% spray from our local pharmacist) - this made a great difference to Tony's pain levels and enabled him to cut down on the analgesics & codeine he was originally using
4: Sara Stedy stand-aid - I know other posters have mentioned this. It was a life-saver in so many ways. A great piece of equipment which enabled us to move Tony easily from chair to bed, shower, toilet etc.
5: PEG - this originally seemed like a traumatic option - but it took away the fear of choking, infections etc and was easier to manage that I'd originally thought
6: Various aids such as inflateable cushions and additional mattress became essential
Above all, accept as much help as possible and, as a carer, don't feel guilty about taking time for yourself and getting respite whenever available. Caring for someone with PSP is exhausting and emotionally draining. I credit our two wonderful Labradors with keeping me sane and getting me out for walks - their presence was also very therapeutic for Tony.
Wishing everyone going through this journey all the very best. And if anyone who reads this is based within a radius of Perth/Dundee in Scotland, I'd be happy to become a 'PSP buddy' if it would help anyone.
Written by
Elma32
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This post has really touched my heart; thank you for sharing with all of us. So many of us can relate to your story in one or another, and I feel this forum is a God send. I pray that you find some peace and comfort as you negotiate each day ahead .... ((hugs))
Thank you for the lovely post ❤️ my deepest sympathy.may Tony rest in peace 🙏 God bless you and please take care of yourself memories will get you through this sad time.
Thank you for your post, I am sorry for your loss.
You are fortunate to live in a country where HEALTH CARE is economically shared by all.
My son died of PSP 2017 (at barely 55 years of age). We live in a country, USA, that has NO UNIVERSAL HEALTH CARE. I give thanks for President Obama's Affordable Care Act (ACA). Without it my son would have died must earlier. His was a story of responsibility, and much formal education...but then PSP, and with it came no job, no health insurance, and left with a PRE-EXISTING condition.
Hi Elma32, Thank you for sharing your story and for the list of helpful tips. I’m so sorry that Tony lost his battle to PSP. What were some of the articles that he wrote about? How wonderful to be able to be with him through his writings.
We live in the US. I’m keeping my husband as comfortable as possible and I’m learning to laugh at the smallest of things. It’s just easier than worrying and better than crying.
What a lovely post. Very sorry for your loss. My husband died four days ago soI know where you are how different he was to your Tony. John suffered no pain and never choked etc. I too have found this site invaluable but many times been in tears reading peoples journeys. You were fortunate with funding as we had to pay everything until he got funding a month ago. X
Hi Dickenson, sorry that you too have lost your husband. There have been so many in the last few months. Sending love to you and praying you find strength for days ahead. Take care, Nanny857xx
Sending you lots of love and hugs, take good care of yourself as this grief is relentless and also difficult to deal with but so glad you have many happy positive memories as they will help you over the coming months
My elder sister, 75 years old, is having PSP which was detected about 5 years ago. She is now probably at her terminal stage; has not been able to communicate, unable to control eye movements, and has been on feeding tube for six months. She has been in and out of hospital for gastritis bleeding. It is really sad seeing her so helpless but there is nothing we can do but to give her comfort.
Thank you for sharing your experiences. Sending love and condolences at this sad time. Tony, like so many, is now free of this devastating disease. Please look after you now.
I am sorry for your loss, but it seems that you were both valiant and strong through it all and I am sure that strength will enable you to continue pressing on through the days and years ahead.
So sorry to hear of Tony's passing but so glad he was able to stay at home, quite how you managed that whilst working full time I don't know, you must be a very special lady. It must have been such a comfort to him to stay in his own surroundings and having the dogs for companionship. Take care of yourself now. xxx
Despite your own difficulties you have offered your support as a PSP buddy to someone in your area - such a wonderful act of kindness and so heartwarming. Sometimes offering help to others despite our own needs can be very therapeutic during our own grief journey. As others have said though, make sure you find time for yourself now as you need to heal as well. You don't always realise, until it's over, the impact that caring has had on your own wellbeing.
Thank you Elma for sharing your experience. So very sorry to learn of the loss of your dear husband, now at peace. We with spouses still with PSP or CBD still have that journey to complete. Your tips therefore are very welcome. Like you I read the posts when I can as time is so very short as a carer, with less time to post as so much there is one could write about. We are in Ayr, Scotland. I asked for Option 1 from Social Services but was refused as PSP was viewed as a short life condition. Not all Councils have the same policies.
Such a clear empathetic post I’m so sorry . I too can’t fault the help we’ve been given . It’s a horrible illness and my husband’s progress has been relatively slow until recently . He is now in a wheelchair and has become very stiff . We have a carer for an hour in the morning to shower and dress him and today we start with a carer at bedtime . He is extremely tired at night and his brain can’t tell his body what to do . It takes several minutes for him to be able to process how to move his legs to start walking ( with help) from bathroom to bedroom .
He wears a convene all day and night but we are having problems with the sheath coming off and he consequently has had a few accidents .
I’m now feeding him , (much to the puzzlement of a six year old grandchild)and he is choking a lot more with drinks . Life isn’t great with PSP
Dear Elma. I was very touched by your message and your elegant summary of the journey you have been on with your husband though his illness.
Firstly, I am so sorry for your loss.
I come from Ireland but live in Edinburgh now. It is my father who has PSP and is living at home with my mother back in Ireland.
So many of us share the same stories of a long journey in the shadow of PSP before the diagnosis is finally reached. My father is a retired General surgeon, who one might expected to have more insight into what was happening to him in the earlier stages of this disease. Similar to so many, his journey to diagnosis was a bumpy road which started with a marked and unusual depressive phase, which was entirely out of character for him. Ultimately a diagnosis of MS was reached and it appear that he has this overlying his PSP.
The diagnosis was really only properly reached about 18 months ago, when his mobility took a dramatic decline in October 2018. Up until that point he had been managing with a rollator, but there was one day when quite literally unable to lift his feet to turn. This was a bit of a crisis point, and required several weeks of hands on support from myself and my two Siblings, putting a basic package of care in place to help get dad up in the mornings and put him to bed, to get a wheelchair accessible vehicle for mum, hospital bed installed, and a Turner a (which was the predecessor of the incredible Sara Steady, which has since replaced this).
Both of my parents are retired. Dad is 77 and Mum is 73. They were an active couple who loved to travel have always kept reasonably fit and enjoyed hiking and walking until Dad's mobility no longer permitted this. All in the last six years, Mum has had a back operation for spinal stenosis, a hip replacement and is struggling with osteonecrosis in her knees. She is no longer anything resembling her former spritely self and the toll that caring for Dad is taking on her is quite evident, both physically and mentally.
She has care through an agency every morning (2 carers for about 45 minutes), a short visit from another carer midday ostensibly to help with toileting, and a visit from a single carer at bedtime for about half an hour. Apart from this, I think she has help perhaps on a couple of mornings at most for a couple of hours. Other than this care, she does everything herself. The initial emergency package of care we put in place in October 2018 essentially has not increased to match Dad's increasing needs and Mum is stubbornly resistant to engaging more support.
A number of things struck me when reading your post... Firstly that you continued to work through your husband illness. Secondly how well it appears you have navigated the Scottish care system. Thirdly how clearly organised you have been and mentioned the 'military precision' required to arrange appropriate care for your husband and your acknowledgement and praise for those who have delivered his care.
It also struck me that you had been able to speak to your husband and ascertain his wishes (ie to stay at home) and that you seemed to have managed to put in place a package of care that supported this decision whilst enabling you some space for yourself.
I would be so interested in speaking to you Elma to hear what package of care you managed to put in place for your husband. My sister and I are here in Edinburgh and our brother is in Dublin. My kids are getting bigger now (aged 7 & 9) but both of my siblings have younger ones and time for all of us is a precious commodity.
We all go over as often as we can, but it is clear to us this Mum is buckling under the strain and struggling to work out what a satisfactory care package might look like. She herself is a retired GP and this perhaps is a double edged sword, with her more capable than most to carry out the job of caring and less able to relinquish control.
It is so recent since your husband passed away and you will need time to grieve. As such there is no rush in replying to this, but when you feel able, I would value hugely hearing about the support you put in place for your husband which enabled you to care for him at home until the end.
Thank you so much for sharing your experience in such a succinct, elegant and helpful way.
With kind regards and sadness for your loss, sincerely Rachel.
My sincere condolences to you on the loss of your husband. 💔 I too love in Scotland. (Scottish Borders) and we had fantastic assistance from local services to help my Dear late Wife, including Option 1, which was a God send. She passed away peacefully in our own home, thanks to all the help we had. It's over 2 years ago now, but still hurts like hell. Look after yourself and hold the memories close to your heart. May he Rest In Peace and prayers for strength to you in the times ahead. 🙏🙏💔💔
So very sorry for your loss. Your story mirrors that of many on this forum, thank you sooo much for sharing. Hugs to you and your beautiful Labs, they are such a comfort as you know.
Tim
Your message has touched my heart again this morning. I read it yesterday but did not take time to write of my sadness over the loss of your hubby. Sometimes l am without words... but you put your words together elegantly. My labs are also a great support at times like these. Take care of yourself & enjoy the unconditional love from your dogs as you walk along the path . You will be a great supportive PSP Buddy. Sending Gentle Hugs... Granni B
Dear Elma, Thank you so much for your post. Actually, it has taken my breath away. You have described the situation which arises with this terrible disease so accurately. The patient does suffer but so do us carers and it is all so hard to bear and watch and endure. However, to care for our loved one is what we really want to do and wouldn’t have it any other way other for us to be with them, at their side and seeing that everything possible is done for them. I did that for my father and I’d do it again a hundred times over. It was an honour. He has passed now five years but still I have not got over it or come to terms with what happened. Maybe it was because I never really came to terms with acceptance. I think that’s really important as it helps one to put things a little more into perspective fairly early on and so one may be able to be better prepared for it all. Perhaps this little tip may help others too, in addition to your wonderful post.
Thanks Elma for that really helpful post with many tips. I hope you have relief in the fact that you did you best and that this horrific disease has now escaped a wonderful man so now he can rest in peace. The suffering for the person is monumental and I feel even harder for the families.
Look after yourself now dear as you have spent ages caring and loving. God bless you with a loving support system which is the best thing one can ask for. Lots of love and hugs in this difficult time
Hi Elma, I'm so sorry for your loss , but messages on this Forum are invaluable for all of us on this Journey of PSP. I live near Edinburgh and my husband was initially told he had Idiopathic Parkinson's disease five &@ half years ago , but in 2018 was told by Consultant it was probable PSP? He has been in care 11months as he kept falling & has no safety awareness!! Its been hard as I have worked in care for many years & never wanted this . I feel guilty on a daily basis. You take care of yourself now.Regards Caralime
A very touching post, your husband would have been very touched at the lovely things you have written about him. I wish you well on the next stage of this journey and hope that you get plenty of support during the grieving process.
My condolences. I am so sorry for your loss. It is evident that you did an amazing job with your husband. I can only hope that I am half as good as you when the going gets tough. My wife was diagnosed in July of 2017. She has been on a slow and steady decline that I fear is beginning to accelerate. She is now bed/wheel chair bound 95% of the time and I can hear the issues starting in her chest, but no dementia, no loss of executive function, and no, and no loss of saccades (but every other eye symptom PSP can throw at you). I, too, work Full Time in a very demanding job and fear that I won't be able to keep doing so. But I don't really have a choice as we are only in our early fifties and have kids in secondary school and University. Your story touched me and inspired me. you did an amazing job. Now, please take time for yourself. I know how busy and stress-filled this last year has been. Be kind to yourself. You earned it.
Dear Elma; my condolences on the loss of your life mate and dearest one. Thank you for your very articulate history and the points you found helpful in retrospect.
It will be a tough couple of years getting through the shock, loss, disorientation and just grief...but we are a supportive community here, and if you need us we'll be here.
Thanks for your post. I am sorry to hear about the journey you had. It is very hard. My husband had diagnosis earlier this year following scans etc last year. However I think he has had PSP for some time. My mum who had dementia passed away a few weeks ago and my son is also unwell. How did you manage with work etc. I have been encouraged to keep working but I’m not sure how I can do this.
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