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- 10th October 2019 at 8:25 pm #119452TrudyKParticipant
My 72 year old mum was diagnosed 3 weeks ago after a rapid decline in what we had thought was PD (diagnosed 7 years) ago. Her symptoms have come on thick and fast and the decision was made to move her to 24 hour nursing care. Up until 3 months ago she was managing living alone with little help with anything. This move was made more traumatic due to a horrendous 14 hour stay in A&E the night before our arrival with a serious temp control issue and shallow breathing and arriving at the home in an ambulance. This was followed by the onset of severe REM sleep disorder – nightmares and vivid dreams. Then followed by starting Entacapone (recommended by our consultant) – this resulted in severe daytime hallucinations/confusion/and very disruptive nighttime behaviour. All from my calm, gentle mum who’s biggest concern was not being a bother! Due to these side effects the drug was withdrawn but not fast enough and the home didn’t correlate the behaviour with the drug. She’s traumatised and we’re now struggling with if this nursing home is the right one for her but the availability of suitable homes is very small.
As I’m sure other members of this forum have discovered because MSA is rare it is so difficult to get places to understand what we all need.I’ve now enlisted the support of the local hospice, the MSA nurse, Neuro Nurse….its been exhausting as nothing comes to you – you have to find and sort everything!
Does anyone have advice on:
– REM Sleep Disorder, how do you deal with this especially emotionally and in a nursing home environment
– How do you work with nursing homes to extend knowledge and ensure best care
– Deal with the fact you don’t lose cognitive function – mum is struggling being the youngest and ‘most well’ person on the nursing floor?
– the transition from home to 24 hr care?11th October 2019 at 12:21 pm #120871Diane BallParticipant
Sorry that you have found your way here! but well done for trying to get the best support you can. Do you know that the MSA Trust have another forum on HealthUnlocked https://healthunlocked.com/msa-trust which has more readers than on here so you might find a wider range of replies there, and if you are on Facebook there is an ‘MSA UK and Ireland’ page there which has quite a few contributors.
I haven’t got any experience of nursing home care, my husband is still at home and we are fortunate enough to have a home big enough for all the necessary adaptations and I am fit and well – all advantages that others don’t all have.
Geoff has had occasional episodes of REM sleep disorder, particularly early on and they were part of the diagnostic symptoms but they were never severe enough to medicate. He has had some symptoms at times that have been distressing enough for someone to try to treat but we have found that those medications make things worse. The only constant thing with MSA, in my experience, is that nothing is constant – things change day to day or in slightly longer phases. Some things which can be a real issue then become less so and I try to watch and wait as much as possible before getting treatment in case it resolves.
Sorry that I can’t answer you questions more helpfully, perhaps others will be able to.
Best Wishes, Diane11th October 2019 at 12:58 pm #121037TrudyKParticipant
Thank you Diane – yes nothing is constant, the last 3 weeks have been a whirlwind. I think our concerns have been around the lack of understanding of her condition, we’re really hoping the hospice can help and we need to work with the home she’s in to build this. Thank you for the heads up on the other forum – it looks helpful.
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