Mum has been on soft foods for a number of months now and recently I have started her on purée foods but on Wednesday she suddenly said she (I think as communication is very limited so I often have to guess what she is trying to tell me) could no longer swallow and since then she has been vomiting and can only manage small sips of water. Although she is excessively thirsty.
Has anybody else experienced this sudden onset of not being able to swallow?
It is always so hard to know if it is connected to PSP or if it is something else or just an upset stomach.
Many thanks
Written by
Jeas72
To view profiles and participate in discussions please or .
20 Replies
•
Yes! Mom had classes on swallowing & breathing at the nursing home. I am not sure they helped but both made mom mad... she said, "l have been breathing & swallowing all my life! Her first class at the nursing home was teaching her to chew properly... well that one made her angry too. I thought it was nice that she got extra attention sessions from the staff... Sending hugs... Granni B
Thank you Granni B, mum has had some of those lessons from the speech therapist in the early days of Dx, but same as your Mom she found them annoying and upset her more as she felt she was like a child. Such an awful situation isn’t it not knowing what’s best to help and without clear communication to be able to tell me it’s very much a guessing game.
Oh I am sorry you and your mother are going through that. My guy found the swallowing lessons very helpful and he managed pretty well until the end, but they were given to him very early in his progression, so he was able to make new habits. Watching on an x-ray scanner when they did his swallow test was very enlightening. It was clear where the vital muscle was not responding. It's cruel the way the disease seems to zero in on necessary and vulnerable functions.
Obviously your mother is in immediate danger if she cannot swallow even liquids. Do you have any hospice or other home care? Would you consider intravenous fluids? Have you decided not to get a PEG?
Thank you for your response and sharing your experience.
Mum is managing sips of water at the moment but she doesn’t want anything else. This will be ok for a few days I think, but she can’t last on that long term. I think I would have to speak to her GP if it lasts past the weekend and see if she can have intravenous fluids at home am not sure if that can be done or if she would have to go into hospital.
We have carers going in 4 times a day but mum has refused a PEG and although it’s sad I can’t totally understand her decision on this as her quality of life at the moment is not good at all.
Chris, too refused a PEG and managed to eat a pureed, soft diet during the last few months. Sadly he lost his swallow a couple of weeks before he died. I'm sorry to say, this might be the beginning of the end. Talk to your GP and see what he recommends.
Take care of yourself too at this difficult time. Keep on keeping on, you're doing a terrific job.
Thank you for your response Anne I am sorry to hear Chris experienced the same. I am fearful this may well be the beginning of the end as you say. I will certainly speak to the Gp and see if he can recommend anything.
Surprisely, JPEG, are a necessity for nutrient, but does not reduce aspiration and aspiration pneumonia. Regurgitation from the JPEG is a problem of itself. It was common past recommendation, but studies proved it wrong. Verify this with your doctor or second opinion which I have done several times Early on after several cases of aspiration pneumonia, a speech pathologist almost had me convinced I needed one. This is one example of asking questions paid off,
If you have SALT support contact them, if not the GP. Don't leave it. If necessary contact out of hours team.
Mum's swallow deteriorated over time but when she stopped swallowing she stopped, she wasn't vomiting, just couldn't empty her mouth, so get it checked out on case it's something else.
If your Mum needs intravenous fluids, she will have to go to hospital for this, it can't be done at home. For us this was the desicion point, Mum had stipulated all along she didn't want a PEG and wanted to die at home. So in her situation when she was unable to swallow and became dehydrated there was no point going to hospital to be rehydrated as we were only delaying the inevitable and at the same time putting mum in a situation that would have been scary for her. She stayed at home and was looked after by people she knew and liked and died peacefully with myself and my husband with her. It was heartbreaking but I get much solace from having been with her and knowing she wasn't distressed or anxious and she got her wish.
You may not be at this point now but it's worth thinking about how you want to manage the end as you need to make it clear to the Drs. I found the out of hours team were keen to send her to hospital until I presented mum's advanced desicion to refuse treatment, whilst her own GPs were far more, I could send her to hospital but I don't know why and she's comfortable and well looked after at home.
It's an awful time but I found the anticipation worst than the actual time and the last couple of days we had were actually a very special time.
Mum has spent so much time in and out of hospital prior to diagnosis of PSP as they didn’t know what it was and with very little results because they couldn’t do anything, so she made it clear when she could, that she didn’t want to go in anymore.
I fear I may have to face this situation soon but I hope if it is that they are as calm and peaceful as your mums experience.
Sorry hope you don’t mind me asking how did you know when your mum had stopped swallowing altogether? Did your GP or SALT have to confirm this?
I can’t tell if this is just a temporary thing whilst she is vomiting and maybe if it’s just an upset stomach she may be able to swallow again once it has cleared.
Good question, the carers picked it up first, she'd been eating less & less & mainly fortified drinks & they realised that they were just sitting in her mouth, the Community Matron came to see her to take a blood test for something else & just said to try & get her to have sips of water if we could. We knew she was clinically dehydrated because it showed on the blood test. Then a couple of days later the carer rang in the morning to say she couldn't rouse Mum and then the Community Matron came round & set up the syringe driver for end of life medication to make sure she stayed comfortable. We were very lucky in the support we had from the Matron & the Carers who were all brilliant. We had had a concern about Mum's health a few weeks earlier & the Matron had got the end of life drugs prescribed then, so we had them when we needed them, rather than having to run round trying to get them when you just want to be with the person.
As your Mum is vomiting I would get the GP to check her over. Is she constipated? If someone is badly constipated this can lead to vomiting. I wouldn't leave it over the weekend, I would get an out of hours doctor in today & I'm surprised the carers haven't said to do this.
It's good that you know your Mum's wishes with regard the PEG & hospital admission, it makes decisions so much easier when you know you are doing what the person would have wanted and gave me a great deal of comfort to know I had supported Mum to have the end she wanted.
Thank you so much I am sorry to ask such difficult questions, but it is very helpful to receive an insight from somebody who has sadly been through it.
I have called the out of hours doctor waiting for them to arrive.
Don't apologise for asking questions. I choose to stay on this forum in the hope that I might be able to offer some advice that helps someone else. That's what makes this forum so great, you can ask anything and share the ugly stuff if it helps.
Thank again, it is very much appreciated and this forum is so good to get real life experiences the things the doctors can’t you. She had a peaceful night, doctor confirmed her swallow has gone now and they are putting an end of life care package in place so she can stay at home. Some tough days ahead 💔 but I am able to stay with her now which is good.
Early on in my progression, the SLT taught me some wallowing techniques that I still use today. These are taylored to my needs, others will be different. Perhaps another assessment is required.
Sorry to hear that. Usually it is not so abrupt. Please get a speech therapist evaluation and a swallow test ( radiology) done as soon as you can. They will tell you the status after the test.
Hope you find positive results and her response is only due to upset stomach.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Swallowing problems...what can I do to help?
swallowing problem and continues coughing
Swallowing / Deglutition problems
Swallowing
