I recently posted about my dilemma with putting Mum (72 with PSP) in a care home. We've been looking at potential homes with Mum, but some just offer residential care while others offer nursing care. Do we just need to be looking at homes that offer nursing?
Your thoughts/experiences would be very welcome.
Nicki x
Hi there
My mum who is now 74 went into a nursing home after being finally diagnosed with PSP following yet another fall which led to her being hospitalised after being on the bedroom floor overnight ( she had taken her lifeline call bell off and couldn’t reach it)
Although a shock it was finally reassuring to get a diagnosis as her GP had been treating her for middle ear imbalance and vertigo for a number of years!
Following her diagnosis a doctor had a chat with us to ask about living arrangements as at the time mum was in a flat and having carers call in 4 times a day ( but had started ringing me at all hours during the night and was having increased Lifeline call-outs following falls) it was during this chat that a nursing home was mentioned.
She needed full time care and that the condition would only get worse. I asked about a live in carer but was told that wouldn’t be enough as she would need a hoist and major adaptations to her flat in order to accommodate her ever changing needs.
Mum went into a nursing home once discharged from hospital - I won’t lie it wasn’t easy ( I carry the guilt and will continue to do so as it’s not something I ever imagined I would do ) Fast forward 2 years mum is now immobile requiring a hoist, needs an assisted bath, has lost her speech, is incontinent and often chokes. So although it was a hard decision deep down I know it was the right one for her.
I would advise to go straight for the nursing home otherwise you will find your loved one will settle and get use to a residential home and then will have to uproot once their needs become more complex which will be harder for them in the long run. I did look into residential homes but most of the residents were able bodied needing minimal assistance and mum was already at the stage of needing more nursing care.
The doctor who diagnosed her helped us secure CHC funding due to the nature of the disease and how it was already affecting mum.
Hope this helps somewhat to making what is a very difficult decision
Jo x
Hi,
I have just been through the same thing with my dad. We had no choice (funds) to have to put him into a residential home as they didn’t see his needs as nursing, even though the time will come to go into a nursing home. Unfortunately 6 months into being in a residential home he fell badly and broke his hip and was in hospital for 4 months, during that time he kept aspirating and has ended up with a feeding tube now, he has lost all mobility and communication, he’s actually bed bound now! So now he is being assessed for a nursing home! Finally!
If you have a choice I would definitely go straight for the nursing home, it has been a challenge moving dad from one to the other. As much as we don’t want that to happen, it is much safer in the long run, with a nurse on site.
Hope this helps 😊
It’s such a hard decision with so many factors involved.
In my experience I would say you need to be looking at nursing. Mum was kind of between residential and nursing when she went into a home about 16 months ago. The home actually assessed her as nursing and I’m glad they did as her swallowing deteriorated quite quickly and the nurses were very proactive. She has recently been fast tracked for CHC funding so things have moved on.
Some residential homes told me they wouldn’t take mum because of the nature of PSP and the future problems it would bring. Although it was hard to hear, I now appreciate their honesty.
Whilst I never imagined mum would be in a home, I am still very involved in her care. Mum had some respite at a different home before and it wasn’t great but gave us pointers to look for and avoid when making the decision for a permanent move.
Good luckx
Hi all, just exploring this for my Dad as well. What is CHC funding? Are you in the UK? Thanks
Yes I would agree with a Nursing home. PSP is very complex and one can deteriorate rapidly. My husband is in a Nursing home and often gets chest infections. I am happy that he has a qualified nurse 24/7.
I agree with the majority to look at nursing homes. As you know the condition will only get worse and another move when nursing is required could be very unsettling especially if agitation sets in.
Good luck, I hope you get somewhere that can take the best care for your mum. These are hard times and never easy decisions.
Cat
Dear all,
Thank you all for you advice following your own experiences. I find this site an amazing support for health matters where we have become incidental experts.
Onwards and upwards 😘
Nicki xx
Dear Koalagal
CHC is NHS funding in the UK for patients who qualify with such conditions as PSP.
Hope this helps.
Anne
sorry you are going through this. Mum has PSP and we tried carers at home three times a day, then a live in carer and then two live carers due to increased needs and night waking but very quickly moved mum into nursing care . we bypassed residential and dementia level care and went straight to nursing due to speed of deterioration eg no mobility and requiring two people and hoist for transfers, behaviour etc. it was a tough decision but the right one.
Hi there,
Not sure if a residential home is the same as a private care home, but that is where I put my Mom. She had CBD & I think they did a remarkable job considering. It was the same price as assisted living (about) so it was pricy… not sure where you’re from, but maybe that can give you another option. Love & light to you & your Mom.
My mum has a live in carer. Ceiling hoists are in place. All have been funded. This is hands down the best option for her, as she realised after a 2 week stay at a nursing home! I think every situation is unique and really depends on the individual carers. A high level of experience directly with the condition or similar neurological conditions is essential in my mind. Good luck on the journey, hope you find a solution that works for both of you.
I deliberately chose a home that provided nursing and residential care. For her first two years they assessed her as assisted care despite the fact that she couldn’t walk when she moved there. They’ve now moved her to nursing care and we have the assessment for nursing funding next week. This was because she now needs to be fed. Despite reassuring me that they could absolutely cope with mum’s condition they still have no clue what to watch out for and haven’t proactively done anything without me hassling - apart from putting her on nursing care which gives them more money.
Hi Nicki,
PSPA suggested a nursing home even if it was more for residential care when she first moved in. Like the others here, it wasn't an easy decision, even harder when we had to move Mum during lockdown. She's never fully settled and we've had to move her twice, partly her temperament irrespective of PSP.
The most immediate thing I noticed was the reduction of falls as she had been falling almost daily on her own.
One thing that bothered Mum in particular was, at 74 (as she was), she felt, and kept repeating, she was too young to be there. She was one of the youngest whereas on a nursing ward they can have a wider age range of residents and that might be something to consider. The home where she is now has neurological specialisms and that was reassuring for all of us so the staff are used to a range of communication and mobility disorders but realise that these are far and few between.
Like Jo, I also had (and still have) guilt but it is impractical to care for Mum otherwise. A home also has access to medical resources and relationships with GPs and hospitals that are difficult to get hold of otherwise.
Good luck!
my mum was only recently diagnosed with psp . However, we had carers coming to her home for 7 months prior to diagnosis. Eventually though we all realised that mum needed 24 care. It is a care plus nursing home she is in. I can see her deteriorating fairly rapidly and am relieved we won’t have to uproot her again.
To be honest I am still terrified by what I read on here as to how this awful illness escalates…. But it’s probably better to be prepared for what’s ahead.
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