Hi all
We have just started the process of finding a nursing home for my lovely mother in law, and are finding the process somewhat bewildering. I suppose I was naively hoping I'd find one in Worcestershire that specialised in caring for people with PSP, and of course, I've now realised that's not a thing. Absolutely any thoughts, advice or comments welcome.
Hi,It is a difficult process and a lot will depend on what stage your mother in law is at.
I can only offer our experience and hope it is of some use.
My mum had some respite care prior to going into a home to enable me to go on holiday. Whilst it wasn’t a very positive experience, it did give us some pointers to look for when she later made the decision to move permanently into a home.
At 74 mum is quite young and doesn’t have any other conditions other than PSP. The home we chose for respite had mainly dementia residents which was quite overwhelming and scary for mum. In her current home she is on a separate nursing floor which is much calmer and quieter and better suited to her needs.
We also realised a closer proximity to home was better to enable more visits, not just from me but other family members and occasionally friends.
Speak to the staff and find out not only if they have experience of PSP but also if there is a willingness to learn about it as each case is different.
Check how flexible they are with visiting. Whilst some homes have retained an appointment system, my visits can be as long and as often as we like which is reassuring and really helped in the beginning.
Make a short list and go and visit places. You can get a lot of info online but visiting a home is the best way to really get a feel for it.
There are a lot of tricky decisions to make. Even if you find a home that seems to suit, I would recommend booking some respite with a view to permanent if it works out. That’s how we did it the second time and it seemed to make the transition easier for everyone.
Nowhere is perfect but you can still remain very involved in your relative’s care. I hope your search goes well.
I agree with Willowden. That’s my recent experience too. My husband now resides permanently at the nursing home he went for respite to. He is 10 years into his PSP. It isn’t perfect but he is separated from the dementia patients and staff are pleasant. I visit daily and give him a pampering session that the staff have not got the time for. Like a good shave, a proper clean of his teeth and a daily hair wash. The home always keeps me updated with his condition and never minds me ringing anytime. They will also learn to look after PSP patients by observing how we communicate with our loved ones and I will leave little notes for staff to put on his radio or CD player when he is awake etc. Generally I am happy with the care there and after having 2 carers four times a day at home and numerous sitters and all the other responsibilities, I can now look after myself too and get to spend quality time with my husband. I wish you all the very best.
Hi KasendaThank you so much for your reply and for sharing your experience. I know that my father in law will want to visit daily and do a similar pampering session for my mother in law. Your point about quality time is so important, at the moment my father in law is doing the most amazing job caring, but the change in the relationship from husband to carer is so all-consuming that I am hoping that the move to a nursing home will mean some restoration of their beautiful and frankly inspirational husband-wife relationship.
Hi
Independent Age | Services to support older people to live. Charity ...independentage.org
have an excellent free guide called Finding the Right Care Home which you can download [in the Housing section]. they also have a helpline 0800 3196789
Hope it will help. Love AliBee
We were in the same position last year, having lost my dad the year prior mum was on her own on a ground floor flat ( still undiagnosed at this point) having carers 4 times a day ( often refusing to let them do anything then ringing me the moment they left asking me to go and do stuff) her falls were getting worse and were being put down to age ( she is 72?!?!) She ended up in hospital after a fall led to her being laid on the floor all night as her lifeline was out of reach, the registrar on duty had experience of PSP and spotted all the classic symptoms straight away - finally we had a diagnosis which strangely enough was a relief!Whilst she was in hospital he explained about PSP and it’s progression and that from the history I gave that she had probably had it a number of years already. He told me that she was at a stage where she was going to need round the clock care and could probably see I was at the end of my tether. So then we had to break the news to mum ( I never in all my days would ever imagine having to put mum into a home the feelings of guilt some days are too much but there was no other way and we now realise it was the best decision)
We looked round a number of homes in our local area to get a feel for them and my sister who works with social care designing systems spoke to social workers and got recommendations.
The one we settled with is a small home with about 25 residents set over 2 floors the dementia residents are ground floor. It’s an old Manor House and mum has a room at the end of the top floor on its own ( mum is a private person and doesn’t like company at the best of times🙈) has her own bathroom and it’s a dual aspect room. The carers are mostly lovely ( though we have had our moments with the odd one) the manager is very approachable and encourages open visiting ( which I like as it feels more homely and dropping in anytime I know they aren’t hiding anything if visitors can drop in unannounced)
Mum will tell you she hates it but most of the time is settled and has adapted to it - I have peace of mind knowing she has someone there 24/7 although still go running when she messages asking for something!
Some days are hard when she’s having a bad day and asking to come home is heart wrenching😢the home have a file containing all the information on her condition ( they had previously had one other resident with the condition) there’s a lovely garden which we go in when visiting but other than that most of her time is spent by choice in her room. We took some of her own furniture and trinkets to make it feel more like her own place. I visit every other day and my sister does the same so she still sees us as much as she use to - the saving Grace is that we visit as daughters and not as carers which has strengthened our relationship.
It is probably one of the hardest decisions you will have to make and like I said I never thought I would put any of my parents in a nursing home but it was what was best for mum knowing she would get the round the clock care she needs.
Visit as many homes as you can, look at the other residents, speak to relatives ( the home were happy for me to do this which I felt meant a lot) above all just make sure you know you are doing it with your mother in laws best interests at heart
Sorry for the long winded post hope this helps x
Thank you for sharing your experience Walking18. The guilt you mention is something we are all struggling with. We had all hoped that we would somehow be able to manage between us, but the situation is such that my lovely mother in law cannot be left even for a minute or two because she forgets that she will fall if she stands or walks unaided. We are in the process of drawing up a short list of homes to visit, but it is such a daunting process, and we are all so worried about what the level of care will be like. I think it would be reassuring to find somewhere with experience of caring for people with PSP like you have managed to do. Thank you once again for your words of advice x
Considering Nursing home for husband with PSP.
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