Tomorrow my husband moves to a care home. Only 2 months ago he could walk unaided, talk and eat without help. He was diagnosed in December 2022.
This development has taken both of us by surprise. Even his consultant was shocked at his deterioration. Whilst I feel guilty about moving him into care, I am relieved at not having to care for all his needs.
I'm hoping the condition will plateau now to give us some quality time together.
I would be interested to hear if anyone else has experienced such a speedy change of circumstance. I appreciate reading all the posts as it supports my experience. Thank you
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Wybert
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My husband had PSP. I will just say that each person's PSP journey will vary. My husband had severe weakness when he was not properly hydrated. Numerous times, I took him into the ER for fluids. As his cognition and swallowing declined, his Doctor prescribed Donepezil. Originally, he was on 10 mg of Donepezil which improved his swallowing, alertness and cognition. Two years later when his symptoms of coughing when he drank fluids returned his doctor increased his Donepezil to 20 mg and by the next morning his eyes were opened widely and his swallowing was safe again. This amazed his speech pathologist. Unfortunately, while in the hospital, he slid out of the hospital bed and suffered a Subdural Hematoma which impacted his swallowing. This resulted in an emergency Peg-Tube and a decline due to a bleeding Peg-Tube, loss of weight, and aspiration pneumonia. I am sending you blessings of Peace and Comfort.
Hi, my wife was walking the dog in January and now cannot walk unaided.She had a series of infections and pneumonia twice in April and May. With each infection the PSP symptoms increased, now the infections are gone some of the symptoms have also gone but she has never recovered to where she was.
Her balance has never recovered and she fell on September 1st breaking her hip and Clavicle; we lived in the bedroom for 8 weeks until she was about strong enough to attempt stairs when she fell off the commode breaking the same Clavicle again. She has this week managed to get out the house fir the first time since the first fall.
So sorry for your situation, it's very challenging. Those falls can really take their toll. Take whatever support you can get and look after yourself xx
Hi, thank you for your response. He found walking difficult and his communication became challenging. Then he couldn't get up off the bed. At that point I called the ambulance who were marvellous and managed to get him downstairs and organise some emergency care. He has been in a local assessment centre for 4 weeks to give us both a breathing space and time to adapt to the changes in our life. He is so tired and often does not respond to me. Sorry about my rambling and thank you.
I recognise the deterioration and I too wandered why my husband seemed to progress so quickly. I’d say looking back I noticed changes in his personality in 2020 .. thought he was depressed about the covid lockdown. Then in 2022 he wasn’t talking much, very unmotivated, driving erratic, face frozen and eyes staring ahead. We finally went to the doctor and said something is very wrong. Diagnosis took 9 months of various tests and neurological appts and finally diagnosed in May this year. By May his swallowing was compromised, he was unable to read or look down and was sleeping excessively. Since May he has lost mobility and his body has stiffened up, his hands curl and have no feeling, he cannot do anything for himself so I spoon feed him and have caters to wash and dress him in the morning. He has been hospitalised twice since the end of September and now I think on his final stretch x Other friends have husbands that are still able to go out to places after 10 years! It’s a very unpredictable time line
So different for every case. I been thinking it was the final stretch for almost 2 years. You sound like you're doing a great job, take care of yourself too xx
It breaks my heart reading all these comments, but I'm sure you're doing the right thing. As you say you'll be able to spend quality time together which is so important.
My husband was diagnosed in June 2019 and deteriorated over the last year. He made the decision early on to have a PEG fitted which helped with his medication and over the last few months with feeding as he lost the ability to swallow.
He was at home until the end, apart from a couple of spells in hospital after a fall and pneumonia. It was so hard looking after him, a mixture of sadness, anger and desperation. Our hospice referred us for carers after his last hospitalisation, but I received a letter a week after he died, saying we didn't meet the criteria as PSP isn't terminal'. My family wanted me to send a letter back to them, but at that point I just couldn't be bothered.
Make the most of your time together and let someone else take the strain, you deserve it
Sorry to hear you have found yourself in this situation because of this awful disease but thought I would offer my story as I too had to make a similar decision with my mum.
My mum was finally diagnosed with PSP in 2020 the same year that we lost my dad and she went into a nursing home in June 2021.
Looking back she had started showing symptoms a few years before the diagnosis her speech had altered, increased falls(backwards rather than forwards) altered gait, socially isolating, fixed gaze …
She lost her mobility after a fall in 2021 and was admitted to hospital where finally someone listened to my concerns did a scan and gave us the diagnosis, although devastating it gave us an answer.
It was the doctor who gave us the diagnosis that mentioned nursing care as until that point myself and sister had been looking after mum with the help of carers going in a couple of times a day ( although she refused to let them do a lot and would ring us the minute they left to ask us to go and help her) He explained she would need 24 hour care with a lot of adaptations and could see how much we were already struggling trying to juggle everything
It was a hard decision to make but looking back was the best one - we became daughters again instead of carers and although mum gave us a difficult time over the decision she knew deep down our reasons for doing it
She went into the home June 21 and has just passed away oct 27th 😢
Her mobility went first, then her speech which we all found the most frustrating. At first she used a spelling chart and would point to letters to form a word or point to a picture, she lost this ability earlier this year along with her swallowing and was placed on thickened fluids and puréed diet which she adapted to well.
About 4 weeks ago we noticed her choking more and more even on the thickened fluids she started to pouch things in her mouth. This led to a gradual decline until it was decided to stop all oral intake exactly a week before her passing.
Her last time outside was 19th Aug where she enjoyed an ice cream at the annual summer garden party at the home after that it was a steady and gentle decline.
Her passing was really peaceful she just left us in her sleep ( although I was devastated after being with her round the clock for days she waited until I had left so I wasn’t with her at the time of her passing which I will always beat myself up about )
It still feels very surreal I just feel like I haven’t been in to visit for a few days, today we have to go and sort her room out which i know will be difficult but will try and stay focused and remember some of the fun times she had there. The staff were lovely and the manager very open to any problems we had
Dear Walking, I’m sure you have heard this, but it bears repeating: people very often wait to die until their loved ones aren’t present. Whether it’s the love that keeps them tethered or whether they want to spare the carers the trauma, or for some other reason, it’s very very very often the case, and it wasn’t something to blame yourself for. Of course it hurts. Of course you wish you had been with her I do understand and feel for you. But please don’t beat yourself up over it. It wasn’t up to you. Love and peace. And may her memory be a blessing.
Hello, my mom was walking around entirely on her own, still able to even go up and down stairs on her own, feeding herself and going to the toilet unaided Dec 2022. By April 2023, she was on a feeding tube and unable to walk, let alone stand. The consultants said such deterioration in such a short time was impossible. She is still with us, the tube has stabilized her deterioration.
She is at home, my father has decided to pay for care at home. We are lucky the house lends itself to such an arrangement.
So sorry for your situation. Sending both of you love on this journey. My mum has been in a care home for 20 months, she was admitted to an end of life care home. She's still here,very much deminshed but her will is strong. I've stayed off here as I was getting consumed by PSP advice. Totally my fault as that's just in my nature but I saw this today and wanted to wish you both well. One thing I've learned is that nothing goes as expected in this illness. I have accepted that and stopped trying to future proof events. Just be kind to yourself and find moments of peace wherever you can xx
As others have said, all experiences will be different. For us, there was a very rapid decline leading up to my husband's diagnosis. At the time (spring 2021) I thought I'd failed to pay attention, because within two weeks of my first misgivings, any stranger would notice his slurred speech and poor balance - most would ask if he'd been drinking (midmorning). Getting the diagnosis - and drugs (co-careldopa, and later Amantadine) left him highly functioning for over a year, during which we made many memories, and moved to a more suitable house. He even passed his driving assessment and got his driving license renewed for a year. We had a lovely walk through the forrest to a remote beach (a few miles walking - just with Nordic walking poles) and were about to go on holiday.Then he had a fall (from height) with a broken heel bone, taking him from independent to totally dependent within that single misguided moment.
A hard winter has brought him back to better mobility, sleep and communication. We even made it back to this beach this summer - now with a lot more effort and frequent resting breaks - but we did it.
Now I live with the constant anxiety of what happens next - and the first symptoms of swallowing issues have appeared through the last few months.
I am hopeful that I can continue to care for him at home (with a growing number of carer sessions so I can work and get some respite) but there are moments in any week where it feels impossible.
I doubt there is anything you could/can do to predict or stop the progression. Pain, infections, lack of sleep, changes in the response to medication, depression, or just the relentless way PSP attacks the brain - sometimes the setbacks are temporary and sometimes they are not.
I wish you well and hope you find that things are easier with professional nursing and care - leaving you to show your love and be a wife again. 🌻
My husband has PSP and he moved to a care home in June. We moved to a ground floor flat October 2022 and at that point he was walking with a stick around the flat and a walker outside. After Christmas he had about 14 falls very close together and he deteriorated quickly from there. He became incontinent and needed a vast amount of help from me and the carer who came to shower and dress him each day. I was getting up many times in the night to him, changing his bed at least twice a night. It just became impossible for me and we have no family nearby. So the home was really the only option. I was so relieved when he went in , he’s well looked after and he’s safe. So I would say don’t feel guilty, you’ve done your best, now enjoy visiting him and regain your relationship with him.
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