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Any ideas appreciated!

Hi everyone,

I wondered if anyone with similar experience can advise?

My mother has had primary progressive MS for about 18/19 years now. For the last six years she has been cared for a nursing home and has been entirely bed bound. We were advised by a palliative care team in July last year that she is now in the ‘end stages’ of MS and it was suggested that she may not be with us in 12 months time. We have tried everything in regards to her food and fluid intake as she has severe difficulties with swallowing. But after causing a lot of discomfort we decided it best to not continue with same. She manages to intake very small amounts of puréed food and thickened fluids, but she is not maintaining weight and is extremely thin. (Around 6 stone)

Just recently there has been a change in her which involves difficulty with excess saliva? I understand this is likely related to her swallowing problems. She constantly has to have something under her chin now which soaks up the excess saliva but it appears to be making her more uncomfortable and is making her sore around her mouth area. I find this change a bit surprising as over the years she has always had complications with not producing enough saliva and having a very dry mouth.

Can anybody explain why this has begun and what, if anything I can do to make things more comfortable for her?

Thanks in advance.

Hi Lauren,

Obviously, if your mother cannot swallow then the saliva has nowhere to go.

There are so many reasons why she is salivating and I would think that the only practical way she can be made comfortable is by medication, which will limit, or stop, the production of saliva.

I would have thought that a cream or ointment would prevent soreness around the mouth.

I do understand how distressing it must be and I hope your Mum can get some relief from this comparatively trivial problem.

Best wishes,

Anthony

Hi Lauren

​I would have thought either the nursing home or your mothers Palliative Care team would have some suggestions with regard to the excessive saliva and the problem of feeding.

Have you spoken to them?

I think there are drugs or patches that can help with the saliva. And PEG feeding for the food issue? Or is she already Peg fed?

It must be very difficult for you to watch your mother slowly deteriorating like this. You have my utmost sympathy.

Sue