PSP and care homes

[Emma-C]

Hi everyone, I have been a member of this site for a year now and read the posts regulary, taking great advice and comfort from you all.

My 67 year old mum has been battling with PSP for 5 years and I would say she is now in the advanced stages. She still lives at home with my dad, and we have carers visit twice a day, plus 4x overnight sits a week. I live just a few minutes away and play a huge part in providing care and respite for my dad, alongside working a full time demanding job and looking after my three young children.

We have overcome so many hurdles in order to keep mum living at home for as long as possible, however I fear we are reaching the point where we cannot provide the level of care she needs, and that me and my dad are reaching our mental and physical limits. It absolutely breaks my heart but I think we need to start preparing ourselves for moving mum into a care home.

I have huge concerns about her living in a care home and I was hoping some of you could share your experiences, good and bad, for us to consider, and to hopefully set my mind at ease.

The physical care that mum requires isn't what worries me - feeding, toileting, bathing - it all comes with difficulties but nothing that can't easily be managed. It's the behavioural challenges that worry me, and make me question how this would be dealt with in a care home.

Her impulsiveness, restlessness and unpredictable behaviour means she can't be left unsupervised at all. She may appear calm and cooperative one minute, but the moment you turn your back she attempts to stand up and walk, resulting in falls. What she says and what she does are two different things. She is particularly restless and demanding through the night, and despite taking two prescribed sleeping aids she hardly sleeps. She has problems with her bladder and struggles to pass urine. This, alongside a fixation with going to the toilet, means she demands to go to the toilet excessively, often 3-4 times an hour. Due to limited mobility and poor balance, taking her to the toilet is no easy feat, and is very frustrating when 80% of the time she doesn't even do anything. But, if you don't take her to the toilet when she asks, she will attempt to take herself when you turn your back, resulting in falls.

These are the things that concern me the most if she lived in a care home. I worry that she will be left unsupervised and either hurt herself or be lonely. I worry that her behavioural issues won't be understood and that her fixation on going to the toilet will be ignored, leading to her becoming even more restless and unsettled.

I could go on! I'm a worrier and an overthinker at the best of times, and this just feels unbearable I was hoping someone could perhaps alleviate some of my concerns or provide some tips or guidance.

Thank you in advance, and my heart goes out to everyone living with this horrible disease directly or indirectly.

Emma x

[Kelmisty]

Hi!

I moved my Mum to a carehome on Thursday , obviously it is nursing care which is the first important aspect.

We are lucky as they already have a man there with PSP so recognise the illness, what is new to them is the fact that Mum has CBD too.

So far there have been two falls, but these were ones where Mum decided to try to take herself to the Toliet alone - her legs don’t work enough anymore. These would have happened no matter were she was as she had four visits a day and 10pm - 6am care in her flat. There will always be risk of fall but they can deal with it and have been thinking of things to help counteract.

But the home has been great, they check on her hourly if not more during the night, in the day they are in & out all the time. I would say it’s important to do your research, look into them and don’t leave it until it has to be a last minute move. As not everyone has capacity immediately.

Mum also has a buzzer to push when she needs help and at the moment can do this which means toilets trips are good, unless she decides to try and take herself!

I had no choice to move her as I couldn’t fill in all the gaps in care, constant response to falls, etc.

it’s a hard decision but whilst I’m feeling guilty, she needed 24/7 care.

X

[Sun-flowerwearer]

Hello Emma, you describe the impulsiveness aspect of PSP so perfectly and the issue of endlessly requesting to go to the loo. I had a husband with PSP that was exactly the same. The need to get up to urinate was relentless and hardly ever resulted in a drop shed. The district nurses scanned his bladder at home and found retained urine in large quantities. It was a medical problem caused by PSP. They inserted a fowley catheter and this stopped the need to get up for the better and may be something to consider for your mum. It will help some of the impulsiveness but not all. I agree she will still need 24/7 supervision and as her brain is incorrectly telling her to move even though she can’t. They will have monitors and mats in the home but they will need to be instantly responded to so I’d be asking about staffing levels in ratio to residents. I’d suggest a smaller nursing home environment would cope better.

[David750]

Hi Emma-C, if you are in the UK phone the PSPA Helpline and speak to a Health Care Navigator. The PSP Association (pspassociation.org.uk) runs online tuition with Car Home Staff to ensure they are up to speed with what to expect of your Mum. I feel for you as this is a big decision to take on your own when you are already very tired and worried. All my very best wishes

[LuisRodicioRodicio in reply to David750]

Hi David 750 !!

I am amazed at the organisational capacity and the establishment of circles of help and support for this type of neurological disease that I see in the UK. I am not aware of any other similar experience. In this respect you are formidable. Hats off!!

[Newstead1]

I understand completely how you feel. My husband was falling constantly at home and I was struggling to keep him safe. He is like your mum and continually tries to get up to go to the loo if not responded to immediately resulting in another fall. My health is poor and I couldn’t lift him, so after a fall resulting in hospitalisation I made the decision to try a nursing home. He agreed so we tried three different ones for a month before deciding on his present one which was the one he preferred. They did all vary so I’m glad we did. They have sensors in the room, fall mats and sensors he can have round their neck or on his wrist. He still has falls but it’s much safer as there are nurses always available. The carers are lovely and he actually has much more company and does activities most days. He also gets physio regularly, his hair cut, podiatry included. The down side is the cost which is huge but I’ll pay for as long as I can. I hope this helps. Xx

[GeorgeMMXVI]

Hi Emma,

Sorry you’re on this journey. My Mum is in a nursing home but has still had some falls (although nowhere near as many as when she lived at home) Once you find a potentially suitable home, you could try a respite period before a permanent admission.

Nicki xx

[Grease3]

Hi Emma, some very good experience and advice given already but our Mum is in a small nursing home (about 25 residents) and seems to have more residents with Parkinson’s. They get Mum up every day and take her to the lounge with lots of activities (she enjoys cheese and wine!) A previous larger home she was in for respite left her in bed and the lounge they had crammed residents in so wasn’t very appealing.

So look for a smaller home, with a good bright lounge area and good wellbeing co-ordinator. Check if they have experience with PSP or similar.

The one thing they tell me and what the palliative nurse says is she is being looked after and safe which is all we could ask for. Have faith in them and you’ll know if it’s not right!

Good luck