hi this is my first time posting. I care for my mum who was diagnosed with MSAp about a year ago. She was being treated as a Parkinsonism patient for 18m prior to this. In this total timeframe my mums decline has been rapid especially in the last 12months! She lives alone and has a care team x4 a day for personal care and to get her up and put her to bed. Since Christmas we have noticed she is really struggling with getting up from her chair (she cannot walk and is moved with a Sara steady) to the steady. A member of her care team informed me last night that they are having to support and assist mum more than they should and it was starting to become an issue. We have also noticed she chokes on a regular basis, she has lost her autonomic swallow function and drools all the time, her voice is almost a whisper and she is struggling to feed herself. My husband and I provide all her care needs outwith the carers and I know that her time living at home is becoming borrowed time. Where do we go from here ? My mum is complete denial about what is happening to her and I am drowning with the pressure or caring for her, trying to hold down a full time job and family life. Any pointers would be appreciated. Thanks
where to go from here?: hi this is my... - Multiple System A...
where to go from here?
Hello and so sorry that your mother is experiencing such a rapid decline and for the huge pressure and worry this is putting on you and your family. It sounds like your mother urgently needs assessment as her mobility, swallowing and communication needs seem very advanced and put her at considerable risk. I would suggest that you contact the MSA nurse asap with all the above information. They will understand the situation and the speed of decline. They will also have an understanding of your local services and how best to escalate your concerns. I’m sure others on this forum will have more advice. Please do keep posting for support and advice. All my best wishes.
Hi. My wife had all the symptoms your mam is having and as well as all the help your care team can provide, I found our local hospice was invaluable for advice and help with all the needs my wife required. They were on hand whenever needed and helped with any additional equipment needed. If you haven’t already contacted them can I suggest you consider this for your mam‘s needs now and in the future. Their help is second to none and they are very sympathetic with what you are dealing with. Hope this is of some help to both you and your mam.
Sorry this reply was for Helping mum 25
Hi
Really sorry to hear about your mom and her symptoms are typical of MSA.
Acceptance is the hardest part of this journey and sometimes you may have to be cruel to be kind or get her to chat to a professional who is not a family member.
Have to contacted the MSA trust as they have some brilliant nurses that may enable to offer guidance.
If she can't eat and drink sufficiently then of course you will see further declines in the condition and a PEG is one way of helping with this.
The forum is here to help any way we can so keep asking.
Paul & Sue
My wife had a similar diagnosis 18 months ago. Sue's main issue is mobility. I gave up work last April to care for her and at the minute we are managing quite well. Like others have said contact your MSA nurse. They are brilliant. Also if you have a local hospice get in touch with them. We've recently been in touch with our hospice and again they are fantastic.
It's a hard journey and we need all the support we can get. Take care and stay strong. x
sorry to hear about your situation. We have very similar situation here but I am retired and provide 24 hour care. The other replies cover most things but you can/should apply for Attendance Allowance…...about £73/week..not huge amount but may help. All the best.
thanks for your replies. It just feels very lonely at times. I am in touch with the msa nurse for our area and I’m seeking support from my local carers association x
Hiya - oh I’m so sorry I really do feel for you - not so long ago we were in the exact same situation as you - unfortunately my lovely Dad passed in January - he was also in denial or would just never accept how poorly he was - he was adamant he was not leaving his home of 50 odd years - the strain & pressure on my brother & I was immense but we allowed Dad to do it his way & supported him throughout with the help of carers also 4 x pet day . I don’t know now how we got through it but we did & I am now a little lost having time on my hands but I am so comforted in knowing we allowed & enabled Dad to have the ending he wanted xx I hope & pray you have the strength to get through xx ♥️
Thank you for your story. I have managed to talk mum round and she is open to exploring going into full time care. This in itself feels like a weight has been lifted. I have spoken with our local social work and they are visiting next month to do an assessment on her. I’ve been told it’s not a quick process so we will need to take it as it comes x
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