Swallowing Problems.

[Chris215]

My wife Rita has been admitted to hospital with severe swallowing problems. There is talk of a naso- gastric tube being inserted so that nutrition, hydration and medication can be provided bypassing the need to swallow. Has anyone experience of caring for a relative with this condition? Particularly a non-medical Carer.

[FredaE]

not particularly pleasant but better than aspiration pneumonia.

It gives time for alternatives like a PEG to be considered but depends on how the patient feels. My husband kept pulling it out as he couldnt tolerate it. The hospital insisited on putting it back with an Xray so as well as glowing in the dark he would not have been able to go home when his broken bones were healed. This was what he wanted more than anything so we made the decisionto take him home, knowing he would not be able to eat enough. It was the right dcision - The rest of his life was shortened but surprisingly happy

Because MSA is so variable and problems appear at different stages of the disease, for some one else the right decision could have been to put up with the tube. There re no hard and fast answes as I am sure you know. Just a choice between bad options.

FredaE

[Chris215 in reply to FredaE]

Freda, thank you, this is helpful. I wonder if I might press you for a little more advice? What was it like feeding your husband via the tube? What kind of support did you have from District Nurses, Speech Therapists, nutritionists? I am trying to work out how challenging it might be for me as the Carer.

[FredaE in reply to Chris215]

He had no tube when he was in my care at home so obviously no support. Sorry I cannot help you there.

In general the the more medical care,as opposed to social care you have the better your chances of funding for care at a a later date. Depending where you live the medical services (pre covid) can be so stretched that you can spend a lot of time waiting for help with tubes and catheters to arrive. With hindsight it would have been better to have a PEG fitted but by the time that was obvious it was too late as he would not have been able to stand the op. Others on here should be able to tell you about the pros and cons of PEGS -

[Chris215 in reply to FredaE]

Thank you for replying Freda, that was kind of you. Rita has now been admitted to Addenbrookes Hospital and is receiving end of life care.

[FredaE in reply to Chris215]

I am very sorry to hear that. It must be such a sad hard time or you. We can only send our love and support

FredaE

[Chris215 in reply to FredaE]

Thank you Freda.

[Diane831]

My husband didn’t have a nasogastric tube but did have a PEG for feeding. The dieticians and speech therapist get involved and you would get support. As others have said having a feeding tube is a very personal decision for each person. For Geoff it took all the pressure off trying to eat enough to keep well and as he had medication to take which was not related to the MSA it made that much easier. It helped him keep well and fight infection, but it was his choice.

Are you in the UK as that might affect what is offered and available to you.

Diane

[Diane831 in reply to Diane831]

This is a link to a good website about tubes. Mostly PEG, and written for MND patients, but the information is really helpful if you feel like looking into this more.

mytube.mymnd.org.uk/

[Chris215 in reply to Diane831]

Thank you Diane for the care you have taken with your reply. Events have moved on and Rita is now receiving end of life care.

[Diane831 in reply to Chris215]

That is sad to hear. I wish you and Rita peace despite how suddenly this has come and how unfair it seems.

[Chris215 in reply to Diane831]

Thank you.