My mum has been diagnosed with PSP for 2 years now( though she had a lot of symptoms for at least 2 years prior) she has lost her mobility and is transferred from bed to chair by a hoist, has lost her speech and lately seems to be having a lot of trouble with hand/eye co-ordination. She use to enjoy using her iPad to do jigsaw puzzles but seems to be struggling and easily gives up.
She’s struggling at meal times and I have been reassured by the home someone will sit and help her at meal times ( though I have been in and have found her with a tray of cold food in her knee and her struggling )
I have repeatedly left info from PSPA around her room, her SALT assessment instructions are pinned on the wall yet the other day when I went in she was laid in bed as the carer on duty felt it would be safer and more comfortable for her??? I rang the manager of the home to complain that A) it poses a choking risk her being in that position when eating B) I don’t want her getting use to lying in bed all day and C) I asked my mum if she had asked to stay in bed and she said no!
Mum seems to be having choking episodes a lot more frequently both when eating or just sitting I have asked for her to be seen by SALT again for an update as it is well over a year since her last one
Any advice is welcome as this is the only place I have to go for advice
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Walking18
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How is the registered Manager when you speak to her? Does she try and improve things or do you feel that they try to appease you but nothing changes?
Is the home a nursing home so they have the skills needed to look after neurological conditions as your mum advances in her condition? The community neurological team in my area always offer to train the carers on things as they know it’s difficult for people to understand the illness.
It’s tough though, I never think my mums carers do a good enough job - but I can’t do it all.
The manager has agreed to send an urgent referral to SALT for a re assessment to see if they feel anything has changed.
I don’t feel the staff at the nursing home have any understanding of mums condition as I have had to point out that certain things ( like her outcry’s and crying) is all part of her condition. The manager states she has looked after one other patient with it during her career.
I did give the manager all the information for carers that the PSPA sent me and told her they are willing to do teams meetings with them to help educate them on the condition but nothing has ever come from that.
If I ask any of the carers what condition mum has I can guarantee they either don’t know or will say Parkinson’s
The PSPA did offer training to the care home when mum first went in I gave the manager all the info but I guess you can only lead a horse to water ….
The PSPA have been my only support since mums diagnosis - she was discharged to the nursing home after being given the diagnosis 2 days before ( well I say she was it was actually me that was given it and just told it is a degenerative illness where symptoms worsen ) we have seen the speech therapist regularly in the beginning but she retired and her replacement has yet to appear!
I know it’s a bit of a postcode lottery . My mum was fortunate that her consultant specialised in PSP . When diagnosed I was given a card with a direct number for the Parkinson’s nurse and was told any issues with mums PSP I was to ring her instead of GP . She was able to push any emergency request for SALT through a lot quicker than GP etc. Does the care home have any contacts within the hospital Parkinson’s team if you don’t ? Wish you and your mum all the best.
My husband died of PSP in January and he was in a care home. When he became unable to feed himself and was put on puree food I went in every meal time to feed him. The reason I did this is that from the outset I discovered there were not enough carers to cope at meal times and those that needed assisted feeding were left until the last by which time the food was cold. It was very stressful for all of us but I am glad that I was able to give him some dignity to the end. The last few years have been very difficult for us both with him understanding what was happening to him and me watching the deterioration. We were lucky in Oldham having great support teams and the specialist was amazing but at the end of the day it is heart breaking watching anyone with PSP.
I try to get in meal times when I can but it’s difficult when I am working shifts ( I’m a nurse )as well as having my own family’s needs to support, the idea of her being in a nursing home was to give piece of mind that she is being looked after and her needs met.
I have already raised the issue with the care home manager who has assured me she will have someone with her at meal times to assist eating - I can only do my best but feel I’m stretching myself very thinly between everyone who needs my help which some days becomes too much
Yes there are no easy answers. We found that the carers and the care home cared but just did not really understand the condition and there were just not enough staff. I was fortunate in being retired and my daughter worked shifts so she helped when she could. We complained to the care home so many times about different things and I think the bottom line is there are not enough staff and they work long hours for minimum wage but this does not help those in care. At the end of the day those of us who care can only do our best but it is exhausting, frustrating and heart breaking. x
I recognise a lot of this in my dad’s situation. He needs to be fed by a member of staff in his nursing home. It worries us that they may not have the time needed to go at his pace, which is slow. But they assure us they do. Similarly, we coincide our visits with evening meal times and take over feeding responsibilities. It requires patience to get enough food into him. The home weighs the residents monthly so if there is a decrease in his weight it should be spotted quickly. But we don’t want anyone to give up on him! Good luck, wishing you strength x x
I lost my amazing Mummy last Thursday. She was to be 87 on the 2nd of June, started symptoms of PSP in 2015 with slurring of speech, swallowing difficulty and a heaviness in her right arm.
I am devastated for myself but cannot help but feel relief for her finally being released from the restraints and horrific symptoms that PSP brings.
Feeding is a BIG problem and I urge you to keep pushing for SALT at the home.
If your Mum is choking please consider alternative ways of getting nutrition , fluids and medications into your Mum. For us we needed an NG tube and latterly a PEG tube.
Neither are ideal, neither will be wanted I`m sure but from the safety aspect , if your Mum is choking more frequently then she is at risk of aspiration and this is NOT what she wants. It is frightening to choke and moreover should food or fluid enter her lungs, she may develop a pneumonia.
While she can communicate perhaps put it to her as an option?
My experience of care homes is not too positive hence I opted to care for my Mum at home until the end, I fought for every bit of help I could get, often making myself appear a nuisance but ... so be it !
I utilised District Nurses, Hospital Consultants and their nurses , Community Nutrition Team , St Giles, SALT, OT`s , Neuro Physio`s (Botox injections and early days musculoskeletal Physiotherapy.)
I feel in the home you must shout loud but also, utilise the other services in the community for "advice" for you . If you are informed then you will know what to ask for. Maybe ask for the SALT team number so you can call them yourself, this would either assist the home or spur them into doing something themselves perhaps !
If your Mum is feeding "at risk" ( choking ) this is something that SALT MUST ADDRESS, Feeding is a serious issue for those with PSP and the home needs to treat your Mums needs here very seriously. She should have someone with her for each and every meal/drink/medication and staff need to be trained and present to assist her whilst she is still ingesting orally.
If they don`t give her this then for me they are negligent and not caring for one of her most serious needs.
Having navigated the PSP path with all its problems from medical ignorance and sometimes `apathy', CQC top rated care homes failing in their duty of care to the dreadful symptoms suffered and how to (try to ) manage them , I am full to the brim with experiential knowledge that I will gladly share if it helps you or your loved ones.
Keep going, stay strong and do not stop pointing out failings in care - you are your Mum`s voice.
Thank you for your reply so sorry to hear you have lost your Mum.
My mum is only 74 this year so still relatively young when she was diagnosed 2 years ago. I would have nurses her at home if the circumstances had been different but I was told she needed 24 hour care and was living in a rented flat which didn’t allow modifications. I have 2 daughters at home and no spare rooms to convert to allow a hoist, hospital bed etc - I have had many feelings of guilt with mum being in a nursing home but given the circumstances it was agreed it was the best option.
She has already told us she doesn’t want a feeding tube - she has always been against any medical interventions and eating is her only pleasure left at the min so once that is taken from her I think she will decline.
I am constantly chasing the agencies dealing with her and reminding the home to chase them too.
Like previously mentioned by others it is generally a good care home, it’s the lack of carers and sickness that affects the care given. Working for the NHS I understand the pressures only too well and how staff are getting more and more thinly spread
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