Forum

Home care expectations in late stages of MS

Hi all,

This is my first post here. I am hoping to get an idea of some other people’s experience of the level of healthcare assistance that has been provided to their loved ones in the latter stages of MS.

My mum is now 59 and was diagnosed around 20 years ago, she is now completely bed ridden only leaving the bed via hoist for showers and the occasional trip out with my dad in her mobility vehicle. She has a care package provided by a local home care company and is visited 3 times a day. This package works well for my mum and the carers cannot be faulted for their care and dedication. Where I think my mum’s care is lacking is in the provision of assessments of the disease and what medications she is taking and the effects (good or bad) of those medications. My father is my mum’s primary carer and I really do feel that he has been left to fend for himself somewhat in this regard. He is the one who has to request changes to drugs and possible other solutions, he does not seem to get much help to do this and it seems a constant fight to push for what may be needed.

Is this normal? Do other carers have experience of having to constantly push to have their loved ones assessed? Is it the case that as my mother is now deemed at the end of life stage, that health professionals will simply look to maintain a level of comfort rather than assess for possible complications. My mother’s swallowing is deteriorating quite rapidly now, when does someone asses for that? It just seems that the whole approach is very reactionary with little planning for what is to come. Is this a resource issue or just ‘the way it is’?

Thank you very much for reading and I would be grateful for any replies or guidance on this.

Ryan

Ryan,

I am so sorry to hear about your Mum. MS affects the whole family doesn’t it?

I cannot offer any advice I am afraid. There will be plenty of people on her who can. Maybe put this post over on the PPMS section, you may get more people reading it there?

May I wish you all the very best for the future.

Anne x

Hi Anne,

Thank you very much for your your reply, it is much appreciated. I will try posting in the section you suggest and see if I can get some feedback there.

Take care,
Ryan

Sorry for answering so late, but I just found this thread. I think you should change your mother’s health professional, who will be able to consult and assess possible complications. It’s sad that this is happening.
About your dad, maybe he needs to rest. He’s been taking care of her for so long that he is morally tired. There are many agencies that can help him with it, like assistinghands. Also, talk with him. Possibly you don’t even know that he is struggling.
I hope that your mom will get better.

Hi Ryan,
Sorry also late reply as not been on this forum in a while since the changes.

My hubby is 58 and diagnosed with Primary Progressive MS in 2003 first signs 1998. Since then he has been lucky to have had a great MS consultant at Kings who is even at hand on emails if required. We had an MS nurse but during Covid times that was put on hold but gradually being introduced again.
I can contact a physiotherapist and occupational therapist if required. These contacts have built up over the years.
From start of diagnosis I was the one who did my research so I could try and be one step ahead…not always easy.

My hubby is now bedbound too and speaks very little but I still try and engage in conversation so he wont lose the ability to speak.

He holds saliva in his mouth and I got onto the Speech and Language therapist who is very helpful and she monitored his swallowing. Hubby was then referred by her to a hospice for assistance with medication for the excess saliva and he is now on Atropine drops 4 times a day under the tongue. They are eyedrops but get used for excess saliva also. It helps a little.

Your mother sounds like she needs more visits than 3 times a day.
Look into Continuing Healthcare. My hubby now has 5 visits a day and has hoists etc like your mother.

Your father can also have a carer assessment and get hours per week where he too can have a break but covid times now so not many places to go but even out for a few hours will make him feel better and this would include a sitting service for those hours. People are not quick to let you know about these things but please enquire.

All the best

Caz