Build-UK Chat Forums

[Hayleywart]

Just over two weeks ago Mum went into a hospice, partly to give me some respite, and partly to try and get her pain under control. Although they have made some progress with her pain, she was feeling really unwell over the weekend, and was vomiting. I spoke to her doctor on Monday and Tuesday and he said she was loads better, but my brother said he phoned her on Tuesday and she wouldn't speak to him because she wasn't well, and a friend of hers drove 60 miles to go visit her, and was also turned away.

Then yesterday when I phoned her I couldn't understand her at all. The only word I managed to understand was 'okay' but nothing else. Her speech has been very hard to understand for about the last two months, and my kids can't understand her at all. But normally I can get the general idea of what she is trying to say.

Then when the nurse came back on the line she said that Mum was really battling to swallow. Several times during the course of her illness, Mum has been offered a 'PEG'. She has so far always refused. If her swallowing has deteriorated now to the extent she can't take food, then she will be put on a fluid drip, and then it will just be a matter of time . I am hoping they will let her come home for that time.

On a more positive note, when I spoke to her today her speech sounded slightly better. But what I don't get is that they said they didn't even offer her some 'Fortisip' which is a liquid food she has lived on for the last two months or so. They said they were worried it would get into her lungs and she would get a chest infection. So which is worse? Getting a chest infection, or slowly starving to death? I'd personally like to take my chances and have some Fortisip. I know she is also really thirsty all the time, but they are only letting her suck crushed ice. They are waiting for the specialist to come and see how she is swallowing and if she should be 'allowed' anything.

So I just really don't know what to expect now. I hate to think of her away from home in what could literally be her last weeks. Who knows, she may even change her mind about the PEG in which case she could still have quite a lot of time left. Can't quite get my head around it all.
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Remember - Baaaahhhh means No!

[Stuart]

Hello Haley, I am very sorry to read of your mothers condition. There is no real excuse for not feeding her
since there is an alternative to a peg tube. I'm not sure of its medical name but, a feed tube can be
inserted through her nose and into her stomach. These are not normally recommended because of discomfort
and unsightliness. You should have been told about this procedure when a peg was first talked about. It is not
very wise to feed a person if there is a danger of food entering the lungs. This can lead to various types of
lung infections, and are very difficult to treat. A lot lead to pneumonia.

Have word with someone in authority, and ask if your mother can be fed through a feed tube through her nose.
I'm not sure if any anesthetic is needed for this type of insertion but, it must be worth asking about. I am
sorry I never thought of this earlier, it might have saved some of the problems now being faced.
Best Wishes.
Stuart.
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Dont just live with MND, MAKE IT LIVE WITH YOU. Diagnosed, September, 1997.

[Hayleywart]

Hi Stuart,

Thanks so much for your reply. My Mum has been offered the nasal tube which you suggested - she has also refused that. She is in a lot of pain, is now completely paralysed, can no longer speak, and for some reason even her eyesight has deteriorated (I think the muscles in her eyes have weakend and she sees double / struggles to focus). In truth, she has very little quality of life left, and has said she does not want to drag it out.

Basically we have been told that unless her swallowing improves, she will just be kept on a drip to keep her hydrated, and allowed to pass on in her own time. My argument with this is that she is very thirsty (despite the drip) but is not 'allowed' to drink for fear of aspiration and subsequent chest infections. Surely that should be up to her, if she wants to take the chance. We have been told if she is indeed no longer able to swallow, we should expect about 2 - 4 weeks.

However, all this said, I must mention that a very similar situation happened shortly after New Year. She had a bout of vomiting, after which her swallowing and her speech became very poor. But after a few days they picked up again. Perhaps the same will happen now.
_________________
Remember - Baaaahhhh means No!

[Claire]

Hi Hayley,

Sorry to hear that your mum is so poorly. It is a shame that she won't accept the nasal tube as my mum had one inserted when she first went into hospital for about 5 days and apart from a bit of discomfort she didn't complain. She was then put on to pureed hospital food (not the best) for a few weeks and was advised to have a PEG fitted which she is on Monday before she leaves hospital. Strangely though they have received the results of her swallowing tests and despite some concerns have allowed her to start back on solid food. I guess this will continue at home until they feel she needs to use the PEG.

Claire

[Stuart]

Hello Hayley, I wish there was something Jean or I could do to help. We will both be offering prayers for you all. It seems very little given the circumstances.
Best Wishes,
Stuart.
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Dont just live with MND, MAKE IT LIVE WITH YOU. Diagnosed, September, 1997.

[Karen]

Hi Hayley

I can understand your aggravation at your mother now being allowed to drink. She has made it plain that she doesn't want to linger so it would appear commonsense that she should be made as comfortable as possible in her final days. Can you not make this clear to the nurses?

Good luck!

Karen
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[theflyingpig]

What can I say Hayley, your mum knows what she wants, but she also needs to get this through to the nurses, somehow.

I'm sorry, this is a difficult time for you. Keep your chin up, stay strong for the family and see you at the other end.

Nx
' :@

[Hayleywart]

Have just had a call from the hospice. The speech and language therapist was round this morning, and has been helping Mum with trying different textures, and coaching her swallowing. Apparently she is managing a bit of juice, and water, and has also had some yoghurt. They will be discharging her on tuesday, without a drip as they feel (for now) she will manage well enough without it.

Mum did take a similar turn for the worse, just after New Year, also following a bout of vomiting. Her swallow and speech became quite bad, but over the next few days picked up again. It sounds like she has improved again over the past two days, so let's hope it was just a scare.
_________________
Remember - Baaaahhhh means No!

[Rachelg]

Hi Hayley

So sorry to hear how difficult things have been.

Mark regularly has a videofluroscopy done. This is where they film by some sort of xray machine the throat and watch the swallow. This really guides them on advise for eating and drinking. In Mark's case the decision is no drinking at all and only eating for taste as long as the consistency is correct which basically means Angel delight. I wonder if your mum could have this done.

It really is a shame that she refuses the peg because Mark is fed overnight with multi fibre and vitamins and that keeps him strong. Maybe if your mum is up to it she could keep on with fortisip at least to try towards keeping her strength up a bit.

I do know that before Marks swallow went, when he could still eat a bit, if he was stressed or upset or angry he was unable to swallow without choking maybe this is what happened with your mum. We were also told that Mark should never attempt to eat or drink when he is tired.

I am glad your mum seems to have picked up a bit.

Take care
RACHEL