I am new to the forum and was advised to order my question on the forum, so I hope someone can help. My mother was diagnosed with PSP about 9 months ago but has been exhibiting systems for the last 3 years. She deteriorated rapidly in the last 6 months and we are fast approaching a time when she will lose all mobility. My father and i care for her at home with no carers. We do not want to send her into a nursing home but have been advised by our GP that we will not have that option due to the level of care she will need.
Has anyone got any experience of keeping a loved one at home with care for end of life treatment. A nursing home is not an option for us and Mum would never want it.
Any advice is welcome.
Written by
am2015
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Oh god it's soooo hard isn't it, I totally get you!
Firstly I'm in a similar situation, mum and I care for dad who is also fast approaching loss of mobility, we are also the only carers at the moment......how long we cope is a huge question I have?!
I got the local hospice involved via a GP referal, the hospice will give you the best advice, I feel.
Do you have a neuro team involved and social services
Of course this assumes you are in the UK?
I'm sure loads of the lovely people on here will have some very good advice!
Thank you so much for your advice. It's very hard carrying for a parent, emotionally draining. I think the uncetainty makes it so much more difficult. The neuro team aren't really doing very much, but my husband is a doctor so that helps to understand PSP but doesn't prepare you for it.
All families/ situations are different but lots of us here look after our loved ones at home. It's not easy but with carers helping and all the equipment in place, it can be done providing the main carers are healthy and willing and able to do so. You need advice on adapting your home and getting equipment so if you have professionals involved, phone them, the occupational therapist can make suggestions and refer your mother to other agencies if necessary. As Satt2015 suggested, ask your GP for a hospice referral. They are not just for end of life but for anyone living with a life limiting condition. If your mother hasn't yet seen an OT, ask her GP to refer you. Your mother will rely on others for every need eventually but I think it was a bit harsh of the GP to say caring for her at home was not an option. A difficult one, yes, but not impossible.
Thank you again. The advice on the forum was so quick. I really didn't expect that. We have had a hospice referral, but they didn't really offer much advice or help. M
Hi.my mum has no mobility, and social services provided us with 2 hoists. We have carers coming in twice a day to get mum up, and put her to bed, and dad and I do the in between.
You will need help as the disease progresses, or it will take its toll on you.
Please don't feel bad about accepting all help offered.
Get social services, and OTs involved and they can put the equipment in place for you. X
Thank you. It is very hard not to feel guilty. Mum was always there for us and note it is it turn to do the same. I have now reconciled that we will need help, a big step for us as we didn't want to go down that route.
I cared for my husband at home until he died on 20 January. We live in southern Turkey. He was diagnosed in March 2013 but had displayed first symptoms three years previously. Up to April 2015, by which time he was urinary incontinent but could still walk with support, I was his sole carer. Then I found a private care home where he went for day care, 10-5, two days per week. Last September my daughter moved here to help. By that time he was totally incontinent and in a wheel chair. I am not at all a natural carer and am now realising what a huge physical and mental toll it has taken on me. Our climate here is wonderful compared to UK so rarely a day went by that he didn't spend time outdoors breathing clean air, not to mention eating excellent locally grown fruit and veg. Another point that helped was his physical size. We were the same height (around 5ft 6inches) and so I was able to lift him and although he had numerous horrendous falls he only fractured a bone in one wrist once. We had our downstairs bathroom converted into a large walk-in shower that did accommodate the wheelchair towards the end, a ramp built to the front door and grab bars fitted around the house. But that seems minimal compared to the hoists, etc., that others here have to use. So it is possible to care for a PSPer at home given the right physical conditions and sufficient stamina. To be frank I would have found it extremely difficult, if not impossible, to cope with carers coming and going and the unbelievable bureaucracy pertaining in the UK. As it is he passed away in his armchair by the fire which was exactly what he had wanted: to die at home, pain-free.
I'm sorry to hear about your loss, but am grateful that you took your precious time to respond to my post. We feel the same way, the intrusion of people coming in the house upsets my mum and dad (these are OT, SALT etc) don't know how they will cope when help is needed.
Yes of course you can care for your Mum, you just need lots of help! I am presuming you are in the UK, talking about the NHS! Get social services involved. A must is a referral to the local hospice. As NannaB says, they are there for illnesses like PSP, for people who need support, to live! If you have to pay for services, talk to your District Nurse, or the hospice about CHC funding. It's hard to get, but designed for people with complex illnesses.
Think your GP went to the same medical school as ours, although in fairness to yours, he does seem to have a clue about the disease. S's GP has never heard or even bothered to research this vile illness!
Hang on in there and stay on this site. We are all Carers or sufferers of PSP and we all use this site to rant, rave, kick and scream, nobody judges, all feeling exactly the same. Ask any question, at any time of the day. The site is world wide, so someone should be around to help, or just listen.
Don't dismiss the nursing homes! They are not all bad. S went into one recently for respite and was happy. (S was definetly NOT the sort of person you could see in these places!!!). My mum is in one now, she has Alzheimer's and is the happiest she as ever been and loves her "home"!!! Some people hate the idea of close family having to do, what will need doing and would much prefer a stranger/nurse do these intimate caring tasks.
What is right? It's whatever suits YOU!!! We are all different, have different needs, circumstances. Don't let ANYONE talk or suggest you do anything that you are not comfortable or happy with. I find asking the mirror what I really want, helps!!!
My wife was diagnosed with PSP in April 2014; however, she had symptoms of the illness for several years before the diagnosis. I don't know how my wife's stage of PSP compares with you moms, but my wife must use a walker, has problems swallowing, difficult speech, and starting to have memory/cognitive issues. I too am concerned about the future. I currently have a home health aide 8 hrs/day, 5 days/week. Since I prefer not to put my wife into a nursing home, my next progression will be to hire a full time live in home health aide, essentially a 24 hrs/day, 356 days/year.
I think that my husband must be at the same stage and I am trying to get everything in place to care for him at home. All of our family live many miles away so we aren't able to get regular support from them so it is basically just the two of us. The countless agencies that need to be involved are now on board and appointments can be quite overwhelming. We don't get any other carers in as yet and he doesn't go to day care but I am hoping that he will be going to the hospice once a week after Easter although he is somewhat resistant. It does take a lot of effort to get everything in place but I couldn't bear to put him into a home unless it becomes absolutely necessary but don't dismiss the idea of respite time in a home so that I can recharge my batteries. You have to wonder why some GPs are in the job when they show no empathy for their patients and families. I hope you get things sorted out soon. xx
Thank you. We're on our way to things sorted, but it's a very laborious task, they don't make it easy for you. They make a difficult situation more difficult. I hope your husband is able to accept the services the hospice offer.
Katie good luck with the Hospice. My husband didn't want to go. Was really adamant. So I asked him to go for one day to see what he thought of it and if he didn't want to go again that was alright. I was crossing my fingers as I said that. Well he went and came home with a big smile on his face! He had really enjoyed it. Made friends with two other men, had a great meal and was happier than I had seen him for ages. So I think you might find your reluctant husband will like mine enjoy himself! Fingers crossed for you.
By the way if you think you will care for him alone please read the post from Amanda otherwise known as Satt2015! She thought she could do it with her Mum and now they are in meltdown! PSP and related conditions can make the carer very ill from the stress and tiredness. Please read what she has sent as it's so true.
Good luck and we are always here Katie but you will need other help or you will be ill.
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