my mum was diagnosed with PSP last week after a few years of falling and other issues. Over the past month since seeing a physio, she has only fallen once (leaning for her dress). We have a care needs assessment Monday (set up before the diagnosis). For 3 years we have travelled weekly between my house and hers (I live 170 miles away) so we could do the fall clinic exercises daily (we were told the falls were due to her being weak). I’ve been her full time carer during this, sometimes she has good days and can get herself out of bed and on and off the toilet. Sometimes she can’t. She has been freezing for around 12 months ish.
Understandably she wants to live in her own house with carers. I can stay a week but have to go home to my husband the week after. This would mean she would be on her own with carers every other week. This fills me with dread but when we saw her GP before the diagnosis, she said mum is of sound mind and free to make her own choices. Intellectually I know this but she is my mum and I am worried. We would have a bed downstairs for when the carers were there so she wasn’t doing stairs on her own.
in your experience is it safe for her to be on her own every other week? We are desperately trying to find a 3 bed flat we can afford so mum has her own room to move in permanently when needed but until then, she and step son share the room by using it at different times, so it’s up and down the country which I also know isn’t good. Her views on a home have always been I will kill myself if you put me in one so that isn’t an option and I want to care for her.
Thank you in advance
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Not just re falls, re everything the freezing and anything else. She hasn’t hurt herself (yet) falling other than bruises. It just feels completely wrong to leave her on her own with carers. I am very biased though. She is my mum. I want to look after her, but cannot full time in one house, until I find and buy somewhere with a third bedroom and I’m not sure the travelling up and down the country is good for her (she is 82 if relevant).
My brother, 84, was diagnosed bout 4 yrs ago. His wife lives with him, he also has various carers coming and going. He has had many falls even with a no of people in the hse. They can also happen in hosp.
It's so good you want to look after yr Mum and are working to wards that. I completely understand how you might feel about the carers, but at least yr Mum's mind is ok and would she tell you how she finds them?
Try not to worry about her, send her lots of love and light when you not with her. Sounds like she's very lucky to have you as a daughter.
Have you any siblings to share the responsibility with.
You have to mind yourself too, that's a hellof a journey you're travelling.
I am sorry for your brothers diagnosis and that you and they are going through this.
The carers wouldn’t be live in, just the max social services would do I think (4 x per day). Mostly mums mind is ok, she gets a bit confused occasionally. She would probably be reliant on carers for food / drinks etc. We have cameras and Alexa devices (not sure she remembers how to use them).
I have siblings but they work (I stopped to care for mum) and had always said they don’t want to be carers. Mum will wake in the night thinking it’s times to get up, so this is hard for them with work. My sister could stay 2 days per fortnight but it is still leaves many days just carers and my brother is just in the last few months of his masters degree, he may be able to stay sometimes at a weekend after that. I’m just trying to work out if it is possible for someone to live on their own with a full care package with PSP.
Love & light for this journey to you, your brother and his family x
I definitely wouldn't even like to see my brother being on his own for any length of time, not necess someone in same room, but at least in the hse.
Only recently someone went as far as the bathroon with him and after they left ,he fell.
He doesn't seem to have near as many falls as he used to, which is great. Not sure why that is and hasn't fallen backwards as of yet.
You can only do what you can do.
Could the family between them afford a full time live in person, while waiting for a flat?
It costs bout €700 per wk in Ireland for non professional carer, i met a young man from Prilippines who was doing that work. Also knew someone who needed a place to live and did same work, all found, for around €250 per wk. Maybe worth looking into and still NHS carers
It’s about £1600 per week for a live in carer and none of us, including my mum could afford that unfortunately. We may have to continue with the weekly drive up and down the country for now. Unfortunately it means I can’t have any help for the time she is at mine and it feels awful not allowing her to try living in her own home with carers, even though the thought fills me with dread. Thank you for your answers x
...He doesn't seem to have near as many falls as he used to...Heartening but could you tell us what medicines has he been taking during that period. Best wishes
I’m so sorry to hear your mum has got this awful dreadful disease. My wife had PLS. And there is so many different names for this but it all comes under it all comes under one umbrella. My wife passed away in November 2024. My wife Pam and like many other people, it seems to take a couple of years to diagnose the problem of MND. I cared for my wife from the day she was diagnosed until the day she passed away at home. It was also Pam‘s wish not to be put in a carehome she wanted to be home and she got her wish. One day they could be alright and the next day is completely different. And part of the disease involves memory loss. My wife used to forget words when she was telling me something. Being with my wife every day I see the changes every day every little change I noticed or she would tell me. my wife every day I see the changes every day every little change I noticed or she would tell me. She couldn’t walk talk and had to be fed through a tube to get her medication and meals. Because the muscles in her mouth would not work anymore, so she couldn’t swallow. So the answer to your question would be yes someone has to be there 24 seven for your mum. to your question would be yes someone has to be there 24 seven for your mum. I had carers three times a day to help me because I couldn’t do it on my last six months or so. She had to be hoisted out of the bed to sit commode and they had to the work the hoist. I am telling you all this just so you know things do not get any easier. As I have learned firsthand. We did get a lot of help which was great and the carers were fantastic. She look forward for them to come in just to chat to her. My wife was 72 when she died. But still very young at heart. I am 54 we been together for 30 years. 30 great years. I would do it all again in a heartbeat. Whereabouts is your mum? I’m in Kent. And as I said, the help we got was fantastic. I really do hope things work out for you.. and this site is great reading all the problems on what’s happening to them was a real big eye-opener for me because I could see the changes nearly before they happened because of reading about how the people were describing their symptoms of not able to do things? Send lots of love and a big hug. And everybody is going to tell you this you’ve got to look after yourself as well and this is something you must not forget. ❤️
I am so sorry for your loss Golf007. I’m not comfortable her being on her own, so it may just have to be that she has to live in 3 homes (mine, hers and my sisters every other weekend) while I try and find somewhere big enough for us all on our budget. My mum wouldn’t want to go in a home and I want to look after her, unfortunately she has to share our second bedroom with my husband as it is his office and then every other weekend his son comes to stay. So we stay a week at mine in London, a week at hers in Shropshire and then a weekend at my sisters as I have to drive the child and bring him back. We have been doing it for 3 years now, so another 6-12 months should hopefully be ok, as long as mums condition hasn’t progressed too much by then. I have no idea what we can do otherwise.
My experience, as she progresses she won’t be safe alone ever. The falls will increase until she can’t stand anymore. She won’t understand that if she walks she will fall. Which means unsupervised she is a risk to herself, all the time.
We got to a point where Mum would fall even if left for 20 minutes between carer visits, I work full time and it was impossible to manage going back and forth. Mums been at a nursing home for over six months now, she has deteriorated a lot but she has nursing care for infections, blood pressure drops, falls, swallowing, communicate is very limited, mobility is almost zero, vision is not great, her bowels only release some of the time - I couldn’t look after her single handed now.
You mention moving your Mum around, this isn’t great for her, her progression can be overnight, a cold or infection can make things much worse, sometimes they bounce back, other times they won’t, they need to be in familiar surroundings. Equipment needs will increase as well.
My Mum didn’t want to go into a nursing home but agreed in August last year, that she needed help 24/7. I was exhausted trying to juggle it all. Just because your Mum says she doesn’t want to go into a home, doesn’t mean it’s not the right thing for her in the long term.
I am sorry to hear this was your mums journey. I am hoping we can move before symptoms progress too far. Unless my mum changes her mind in the future her opinion on a home was always I will kill myself if I go into one. I know she would hate it and would give up, so while I am able to, I want to look after her. If we get where I can’t then that is different, as her best interests are what is important.
If you keep her at home, make sure you have a team of people to help you (my husband helped me, but couldn’t/wouldn’t help with personal care) and everyone is happy to take a share. Long term 24/7 care is extremely hard and personal care isn’t for everyone.
In terms of accommodation, if you are trying to keep her in your home, it would be worth looking into the property requirements such as a wet room, wider doors as Sara steady, wheelchairs and hoists take up a lot of space. You mentioned a flat, make sure if not ground floor that you have a large enough lift for at least a wheelchair.
Could you look into renting an extra care flat via the council for her, they normally have 24/7 wardens present who used to initially help Mum with her freezing and falls (they would call me for a fall) for about 12 months we coped with four carer visits a day and me doing everything else.
Remember you need your oxygen mask first so you can help her.
Hi Kelmisty. I shall ask about the extra care flat via the council as that may at least give her chance to stay in her home town for a while (with my support every other week) until we find somewhere with suitable accommodation for her in our budget. I should imagine there is a very long wait for this though
Have you tried asking for a grant? Obviously, this doesn’t help in the short term, but could help with moving. You could also get a Social Service assessment for youself, for when she is staying with you. Due to the nature of PSP the symptoms are likely to get worse.
Hi Pspuser, we are hoping we can find somewhere before her symptoms progress too much (fingers crossed). Who would we speak to regarding a grant to help with moving? Many thanks
You say you have a care needs assessment today, if they are from Social Services you can ask them. Otherwise, ring Social Services and ask for an assessment (you don’t need a referral to get an assessment). What might make it more difficult is that you and your Mother live in different areas, try both of them.
You could also ring the PSPA, they may be able to give some advice
sorry to read about your mum. We recently lost mum to PSP and tried everything to keep her at home first with carers four times a day then a live in carer and then two live in carers but it was not enough. She needed two carers for any movement and her sleep pattern disturbed so even if one was day and one was night it wasn’t enough. She was only at home for four months after her diagnosis unfortunately and didn’t want to leave but she needed more care and 24/7 care than could be provided at home eg timed meds and at this point she didn’t have capacity and we used power of attorney. You maybe able to access attendance allowance for mum which isn’t means tested. She moved into nursing care and passed away earlier this month after three years in there. We found the community neurologist helpful in getting teams in to make adjustments to her house when she was as first diagnosed eg hand rails, recliner chair, ramps and eventually hospital bed. PSP association are great help do call them if you haven’t. We were fortunate to qualify for CHC funding for her nursing care but this was when she became immobile, high risk of falls and skin integrity, double incontinent, behavioral and communication issues and unable to feed herself etc. there are some other practical things to sort if you haven’t already eg power of attorney for health and also finance. Have the discussion about hospital admission and a respect form should be in place and also whether she wants a PEG if her swallow goes. It’s best to have these discussions as soon as possible. Mum decided she didn’t want a PEG and eventually it was unsafe to give her puréed food or thickened fluids so these were sadly withdrawn. We also had older person consultant involved, discussions with Hospice ( for family support) and needed to buy a specialist wheelchair as this wasn’t provided by the NHS. Do get her eye sight checked as this is often impacted eg can’t look up or down so where food is positioned is key. Speech and language team (SaLT) should also be involved for communication aids and plans and for decisions about adjustments to her food and fluids eg soft food and then minced etc. Remember every persons journey is different and I hope sharing my mum’s is helpful. Good luck and I hope you can access support available to you. Do DM me if you have any further questions
bless you and everyone here and their families. To reiterate every situation is different, the family support, the finances, where your loved ones are at with this horrid disease. Thankfully in the UK you can access lots of valuable support which is both means and non means tested - you do have to fight and learn to navigate the system, it’s not easy and certainly not quick. My view is that everyone with such horrible diseases should be entitled to CHC, there will always be an argument as to at which stage this kicks in however I don’t know where my parents and our family would be without it.
It’s sounds like you have adult social services engaged and make sure you ensure that as your mum has a palliative diagnosis, the GP is informed meaning you can unlock other services such as physio, OT etc and access to palliative / hospice services in your area.
My dad has advanced CBD .. your doing the right thing in terms of planning forwards as their condition can change rapidly. It’s not nice however, there is so much wisdom on this forum and yes it’s upsetting and scary to hear in places, it does give you a view into what to expect. Excuse me as I’m a little more matter of fact about dads condition nowadays because he is very much in the end stages and his suffering is horrible to watch.
Mum is his 24/7 carer as his wishes are to stay at home and to this point supported by CHC where he has 4 visits, 2 carers a day as he can do nothing for himself, just about being able to communicate. It’s been in place for 18 months post fast track.
what your doing for your mum is incredible, I’ve been doing those motorway drives as has my brother for years now. Your doing this with best intent and her interests at heart however you have to look after yourself in this equation - caring for your loved ones at home is very tough without someone there 24/7 I’m not sure it’s possible.
I can appreciate your mums wishes of not going into a nursing home but you should never feel guilty as it’s clear your doing everything possible, the one thing is you cannot do this alone, you must look after yourself in this equation you really must.
Thank you Harshacceptance. I have managed for 3 years on my own but will be grateful when I have some support from carers, but until mum is in one place and until the care needs assessment this has not been possible (a very long wait). Hopefully soon this will happen. If / when it gets to the point I cannot care for mum I know she will need a home but until then, I will keep trying.
I feel your concerns. I’m in a similar situation with my mum
She’s currently in intermediate care and will probably have to go home whilst we try to sort out a level access flat for her but this may take time. She doesn’t want to go in a care home but also is afraid to go home as she has steps to her front doir 10 and can no longer use the stair lift so she would need a bed in the room. She has fallen a lot at home as it is even with all the grab rails etc
There looking at carers now coming in 4 times a day and I think she will be expected to sit still inbetween visits and use a commode next to the bed instead of the toilet we had fitted downstairs
Sorry it’s not advice but I like you could also do with any advice on is it safe too x
I did have a vision of a level access flat with maybe an electric wheelchair to help her get around more safely combined with carers help to help promote a level of independence for her but I realise this would come with risks also so am trying to way up the pros and cons still
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First time posting on here
Deterioration- will we now qualify for CHC assessment ? 
Mum diagnosed with PSP yesterday
Refusal to acknowledge PSP
