Nursing home

[sodthis]

Hi, my mum has PSP and has been in a nursing home since November 2020. Since she has been there her mobility has gone from walking short distances with a frame and sitting in a chair to laying in what I call a bucket chair all day. She now can’t even clean her teeth. The home don’t want her mobile because of falls risk, but her muscles are wasting and I’m trying to do movements with her, her neurologist says she needs gentle mobilisation, but waiting for physio to visit. Does anyone have experience or advice please, I’m so worried she’s being allowed to deteriorate unnecessarily ?

[honjen43]

Hi sodthis . Appreciate the reasoning behind your moniker - but would be good to have a Christian name!!Welcome! You should get some answers and great help here.

Sorry to hear about your mum. Yes. She should have a physio and daily exercise programme, whether standing with help or seated or lying down. I agree your mum will lose muscle tone if she is not helped to move. Daily physio should be part of their care plan for your mum! They are not doing their job!

Does the care home your mum is in cater for Parkinsons disease?

We found a lot of help from a Parkinsons nurse, who seemed to understand the need to move more than the caregivers.

A physio came to us and helped hubby through exercises to keep muscles working.

She also took us to a Dance for Parkinsons session. This included all levels of mobility as well as able bodied partners, and we all joined in and swapped partners, so it was a free for all. All seemed to enjoy the experience!

The music, jazz and dance music, helped to free the brain from thinking about how to move and they all moved more easily. Those who could not stand easily did the dancing seated, using hands, feet and knees. Those who had the shakes seemed to stop for a while when the music took over. Many fell asleep over their coffee and biscuits afterwards!

Try getting in touch with the Parkinsons Àssociation in the area and see if they are active. Also get in touch with your doctor and ask for daily physio and exercise regime for your mum at the home.

Hope you get some help and some action soon!

Hugs

Jen xxx

[sodthis in reply to honjen43]

Thank you 🤗 my name is Susan, I got fed up trying to set a username. Mums home is not a specialist one, but I can walk there in five minutes. I will contact Parkinson’s, good idea thank you. I get so frustrated because she’s out of my care, even though I have an LPA for health and welfare. 🤗🤗🤗

[highopes in reply to sodthis]

Hi, sorry to hear that you are in a similar situation to mine and many others. My mother was diagnosed in May 2019 with PSP, after many years of taking her to GP and various hospital appointments and feeling "fobbed off". We have felt very let down in our experience, from the Neurologist there was no follow up, or referral to anyone else. We do however, have help from a Hospital Support worker now, who unfortunately has personal family experience of PSP. We are still struggling to get my Mother assessed by anyone. She is also in a local care home a short walk from us, who seem to be managing her but the residents are mainly Dementia sufferers. In January, she was admitted to hospital with a DVT, GP refused to do a home visit! Over nearly 3 weeks she was transferred to 2 more hospitals, not ideal for a PSP patient. She also tested positive for Covid but thankfully, was not really ill with it during her stay. On discharge , I reluctantly had to let her go into a care home. In hospital she was being hoisted into bed from a chair and was no longer walking. This has continued in the care home, she has not even been seen by a GP and no physio, which I believe could be helpful. The care home have tried, unsuccessfuly, to locate a PSP specialist nurse. So today, I am still battling to get referrals from a GP, who has informed me she is "only a locum, and asked me what PSP is!" I would also like to add, thank heavens for this Forum which does offer a wealth of information and makes you realise that you are not alone.

[sodthis in reply to highopes]

Hi highopes, sorry about your troubles. Mums neurologist has been quite helpful, referring her to a physio and the palliative care team. They are coming next week to assess her. I find you have to nag and remind people all the time. I’m trying to contact Parkinson’s, who help PSP people too. Also the PSP organisation can give advice, and there are various groups to meet with when it starts again. The pspa will send out information on psp to you and the home. Good luck. Susan xxx

[Banta123]

Hi there..so when my dad was diagnosed coming up to 2 years we knew what was going to happen as we crazily researched what we could. He has a carer twice a day at home. Do my mum is his full time carer and she has requested for the carers to specifically exercise with my dad when they come. This is because my mum says she is happy to dress and feed my dad but also he won't exercise with my mum and so its his motivation. We now have a personal trainer twice a week which has definitely helped with his muscle strength. Please try and get physio or someone in with your mum more regularly to keep her going for longer. We have to stay positive for them and prolong this disease.

X

[Goroos]

Good morning Sodthis,I have just read your post. Your journey mirrors our journey.

We were contacted during lockdown that mum needed to go into a bucket chair ( known as a princess chair in Australia). It has been downhill ever since for mum. Slowly all movement and function closed down.

Six months ago we employed a private Physio to visit mum. She does a wonderful job relieving the stiffness in mums neck and arms.

The facility does have Physio’s but to get good attention this is the way to go. My mum worked full time until she was 72 so she is in a position to fund the extra care, including a private carer to help her feeding which takes so long because of the swallowing difficulties .

Something that was suggested to us but we could not get into the facility was a pedal on a stand that they can pedal on while sitting in a chair.

It’s a very frustrating journey. We are into our sixth year and it has taken a toll on all of us.

Keep thinking and trying everything and speak up. Take care also x

[MRSYafffle]

Sorry to hear about your mum. I think it's just so difficult to get any help from GPs everything seems a battle. My mum has been fobbed off for about 5 years and was told unofficially she had suspected PSP after a very difficult appointment just before lockdown when the neurologist called in a colleague to discuss her condition without telling us what the condition was. He had mentioned parkinsons on a previous appointment. After a pressing him he told us what he suspected which was only confirmed last week. The journey on the NHS website doesn't seem to be what happens or who gets involved. My mum is mobile but has had some falls breaking her hip last Aug. She has 4 carers but won't really let them do much as she is trying to complete usual tasks herself. This is far from ideal but as she can still do them albeit badly I think it is helping with her mobility. She has no physio or anything much as described on the NHS website, she has issues with balance,stiffness,eyes, swallow and can bearly speak or be understood. She can't write much now. I go everyday and my brother has moved in to help. I would copy and paste the help and treatment from the nhs website into an email to the carehome and the gp and underline the physio aspect currently falling short.

The illness is a real battle but is made worse dealing with people who have little or no knowledge of it at all.

I hooe your mum can get some mobility back. Good luck. Email everything even after a call follow it up with an email to confirm what was discussed as what is promised and what happens are entirely different.

[rosestewar in reply to MRSYafffle]

I'm sorry you got into this situation, and you have to seek help from others. I realize how complicated it can be for you. For example, I still didn't know what to do with my parents during a pandemic because I was still working, and I couldn't take care of them and the children at the same time. So I decided to call where they were until the pandemic, to use the opportunity to call people to their homes to take care of them. Now, even so, comes the young lady who is interested in her parents' condition. If you would like homecareassistance.com/tamp... , this is the link, and you will already decide how to do better.

[MRSYafffle in reply to rosestewar]

Thankyou I am in the UK.