my mum is due to go to respite shortly with a view to being a permanent resident.
it’s a very hard decision but it’s become a 24 care situation (she lives with us) as he mobility isn’t great. She’s had several falls in the last 12 months. Therefore needs assistance even with a walking aid & can’t be left in her own.
neurology consultant believes it could be PSP.
I’m interested in anyone who has a relative in care who has PSP, how do he care home help them & have there been any issues/frustrations etc.
I’m worried that they won’t know what she’s trying to say, mostly she tries hand guessers & as she lives with me I can occasionally pickup what she’s trying to say.
any experience shared welcome.
Thank you.
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Martini123
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What country are you living in? There would be no point in me commenting if you aren't in Australia like we are. However there does come a time when our loved one needs to have full time rest home care but you need to do thorough research to make sure they will get the correct help they need. So few people are aware of this horrid disease - I have had to teach our rest home many things and now best to care for my husband.
We’re in the UK, London. The respite care is in a brand new care home so currently only a handful of residents. My thinking was it would be more comfortable for my mum not seeing too many people all chatting & hopefully she’ll have a little more attention from the staff.
Dear Martini123, I am in the UK and Mum has been in a nursing home since November 2023 and she moved to a permanent one at Easter 2024. She never wanted to go in a nursing home so there is so much guilt that goes with it.
Mum’s home is small with about 28 residents, all with similar conditions, particularly Parkinson’s. The staff will get used to your Mum’s needs but you might need to help them to start with.
My mum was hoisted bed to chair at first but has just recently started standing again with assistance so we feel she is making good progress and she gets lots of stimulation everyday.
It is a very hard decision but I left details of PSPA with the home and they are trying to research it as much as they can to learn about her needs.
In Mum’s respite home most carers were Indian or African and they didn’t speak much English so it was difficult for them to understand Mum and for Mum to understand them!
Her permanent home is in Walton on Thames, so just outside London and I have to say they have a good mix of India and Phillipino who all speak good English which has helped Mum.
So I think in terms of language you will find the right home for your Mum. And remember you should be involved in her care plan all the time.
It’s not easy, is it and all we want is the best for them ❤️
hi, my husband is 72 and has PSP and I am in the same situation. He falls a lot and needs constant supervision as he still tries to do things he can no longer do. His speech is very quiet and slurred and he is difficult to understand. He also has swallowing difficulties. I myself have health issues and can no longer care for him day and night. It was so so hard to accept that he had to go into a care home, the guilt has been immense but for his safety I had to agree. Since May he has tried 3 different homes now and next week he will decide which one he prefers to go in long term. I am still feeling guilty but with my daughter’s support I will have to learn to accept it. I also feel cheated of the retirement we had hoped for. I just hope he will be safe and happy in whichever home he decides on. All the best.
I feel for you, I’m also thinking of trying at least a couple of homes.
Two main things are language & food. Although mum eats all cuisines she’s Indian & recently become vegan. Indian food will accommodate that well.
My husband & son are also helping me not to feel guilty.
I retired end of last year, took early retirement at 60, I had always planned to retire once my son finished school (he has just completed his A levels). My husband & myself want to begin our retirement plans next year so need something in place.
first of all, my sympathies for your mum’s predicament. My husband is on that path with a diagnosis of PSP but can walk with his wheeled walker outside and an NHS zimmer around the hse. The dementia has kicked in but isn’t too bad as yet.
Anyway, if your neurologist ‘thinks’ it’s PSP has he/she done MRI scans a few months apart? That’s how you get a definite diagnosis. It would show a build up of ‘tau’ protein. In people with Alzheimer’s, it’s a build up of a different protein.
We had to go to London to see a fantastic consultant at UCL who made the diagnosis but it was worth it.
We saw Dr Cath Mummery at UCL. She is the lead researcher in the Alzheimer’s trials and has been on tv twice lately. She’s a lovely lady but doesn’t see many patients as she so busy with her researching and lecturing. We had to wait a few months to see her and unfortunately she doesn’t deal with any of the health insurance companies! She said it’s not worth her while. A neurologist we saw locally (south Essex area) referred us saying if anybody can diagnose my husband’s problems, it’s her!
Hi Martini123, if in the UK, phone the PSPA Helpline (pspassociation.org.uk) and discuss your difficulties. The PSPA can arrange online training for Caee Home Staff, if the care home is agreeable. I put my wife into two care homes for respite for me, I wish I had not because she did not have good experiences, I felt awful after learning the details. No one understands or can care for a loved one like a close family member but it is very hard, even more so when you cannot get an adequate care package. All my very best wishes.
Thank you for the information re helpline, I’ll check it out. One of my concerns are if the card staff are experienced in caring for residents with PSP.
Martini123, very few Care Homes are experienced with these conditions, as with changing staff for various reasons few if any of them will have dealt with PSP/CBD before. You are so dependent on staff taking responsibility to search and educate their fellow staff. One of my wife's carers left the care company to work in a home and when I met her later she said that due to her experience, when a resident came with PSP she downloaded the info from the PSPA website and circulated it to her colleagues. When so many of the medical profession are ignorant of PSP & CBD (a doctor may come across one case in their life time, some never) one can hardly expect care homes to be better. This is why the PSPA are making every effort to educate. I do hope you find a solution that is the best for your Mum's wellbeing. It is so stressfull gradually being locked away inside one's self unable to communicate and be with total strangers who don't understand.
We are in UK. my husband has CBD and has had three spells of respite. First one was awful - the home assured us they could care for him but they hadn’t got a clue. In the end after 4 days of the week I brought him home. He had a bruised and swollen knee caused by not moving him properly - plus lots of other problems. We then went through the social worker to obtain a nursing care assessment. At that stage he did not qualify for full CHC funding but he did qualify for the lower level of nursing care - which meant he could then have respite in a nursing home. The next two spells of respite (first one week and then later two weeks) were in an excellent nursing home who looked after his basic needs very well. But he was unhappy because most of the other residents were non verbal while he is still reasonably compus mentis - so he spent most of his time in his room with no stimulation . I ended up spending a lot of time with him which wasn’t helpful to me. We agreed with the nursing home manager that two weeks was too long and any future respite would only be a week. Since then his condition has deteriorated and he has been awarded full CHC . We are hoping that he can now be fully cared for in his own home as long as possible - as that is what we believe is best for him and what we both want
Someone in the community of caregivers once wrote “it is not my job to care for my loved one; it is my job to find the best care for my loved one”. And I would add that the main caregiver is the most appropriate to frequently express affection and accompaniment to the patient without excluding other friends or relatives.
AJK2001 said:“A demanding selection of external caregivers and their renewal depending on the circumstances and evolution of the disease is essential to maintain a good quality of life for both the patient and the patient's family”. This AJK2001 suggestion is essential to me.
There is always the possibility for the caregiver of losing patience, or not having enough hands for the task at hand. It is then when attacks the feeling of guilt, unfairly. Be careful.
No one will understand you unless they have been through such an experience. There is always the feeling that you could do better and always keep your nerves under control. We are not perfect and whoever does everything she/he can is not obliged to do more. It is relatively frequent that a situation, a small accident, a major difficulty, a rebellion of the patient puts the caregiver on the verge of losing his nerve. Leaving the place for 10 seconds and thinking that the enemy is the PSP and not the patient, can avoid difficult situations to regret.
Faced with the dilemma of caring for the patient at home or in a nursing home, I share these words from “Dance 1955”:
“How is it that there is so much ignorance in nursing homes hospitals etc etc.? When my husband was diagnosed with this disease I didn’t understand it either so I googled it.
Whenever I take him somewhere a nursing home/hospital I always give instructions/ information about the disease but it doesn’t get read they don’t have time so I have to spend all my time going in and eventually taking him home as it’s easier for me in the end.”
In our case, we decided to care for the patient at home. This implied a significant economic cost and a demanding personal dedication on the part of the caregivers, especially the leader caregiver. As well. On our case and circunstances I believe we did what was best for the patient, caregivers, and family members.
On april 2022 Bazooka111 contributed these meaty reflections with which I am completely in tune:
“I think I’m losing my mind as a caretaker. In fact, I feel like I have lost myself on this journey. Respite is my salvation.
We all have this mountain we are climbing, and some days feel like we are barely hanging on … I choose to focus on the good. I am not naive, I realize I am going to have to eventually say goodbye to my Mother from this dreadful disease —- but, I refuse to let anticipatory grief smother the days, weeks, months that I do have left.
Being a caregiver is something that no one will ever really understand, unless they have been there.”
Take your own decision.
Finally, reproducing the phrase of “Anne Heady”: "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
Lots of strong & useful quotes. Lots to think about. I’m trying not to make rushed decisions but each day I go from, ‘maybe it’s not that bad’ to ‘definitely can’t cope’.
Initially we had planned respite in January but when we took to see s place her face was so scared ‘ worried. We cancelled it as I felt guilty. But 6 months down the road it’s taking its toll again.
This site has been useful for support & information.
You have summed up all the emotions and feelings and experiences that I have with my husband. Thank you - it all helps address my feelings of guilt - even though everyone keeps telling me I’m going above and beyond I still feel there is more I could and should do. But I take great comfort from the very first quote - for a long period I felt I had to carry on doing everything for him, even though it was becoming more and more difficult for me - I was determined to follow my marriage vows - but then a shoulder injury while moving him meant I had to seek extra help - that was a tipping point and since then I have been a tireless advocate for him in finding and organising the most appropriate care I can - at this stage of his illness that is probably the best way I can help him
hi Martini, my dad has PSP (we are in the Northeast of England). He went into a care home in October, for time to think care, whilst he could still speak of sorts and after three weeks he asked us to sell his house as he wanted to stay in the care home.
I explained to the unit manager/senior nurse, about PSP, and where my dad was at with each symptom. He actually researched the condition and I know that he told some of the carers about it too. The staff are brilliant, and as he has been in there for several months now, they have had chance to get to know him well, so as he declines, they understand what it is he wants etc.
So I guess, what I’m trying to say, is that the kindest and best thing we did for him, was to suggest time to think care, when we break it down, this is us actually looking after him, and doing what is best for him. The hardest bit I found was not being involved in discussions with the dietitian, SALT, the falls clinic, GP etc, as prior to him going into the home, that had all fallen to me, but I’ve got used to it/come to terms with it now.
Hi, my mom never went in a care home as we felt there wasn't enough adequate care and knowledge of PSP in care homes in our area. We contacted the PSP charity and they said they would be able to send someone from the charity to explain what PSP is and how to look after people with it. As everyone is different your care needs will change over time.
hi, thanks for your post. I am in the same situation and I am not sure which way to turn. I am the sole carer for my husband who was diagnosed 2018 with PSP, he is struggling on his feet, can’t speak, swallowing is an issue and we are now on a puréed diet and shakes via the Peg. Iam doing everything for him, the lifting is really becoming too much and I really need a break, struggling to find any respite care for him, even for a couple of weeks, he has been to Leuchie house before but wasn’t that keen on it and that is only for respite and not permanent. But I think we need to start looking for care that is going to take the strain off me, I have looked at getting a live in carer but that would only be for 8 -10 hours a day and it’s a huge amount of money which won’t be covered by funding, (Scotland). so I would still be involved in his care with this which is a plus to a point. He always said that he didn’t want to go into a care home but 24 hour care is really what he needs and I am struggling to provide it. On phoning round looking for respite places the lack of knowledge about this condition is huge. So going to make a list of his care needs and a pros and cons list, home care versus care home and hopefully move forward. Best wishes P
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