Eating

[steph75]

My mum has suffered with PSP for at least six years now.

All of her food is puréed and her liquids are thickened. It's come to the point where everything she eats or drinks makes her choke, cough etc. This is making her obviously not enjoy her food and she gives up. Even when she's not eating or drinking she is coughing now. She has tablets to stop the saliva.

Mum does not want a PEG fitted and is quite adamant.

I guess she will come to the point where she won't be able to eat any longer, but I just want to know if anyone else has experienced this, and what will happen etc. If there is anything more I can do to help her eat.

I don't mind negative comments, I would rather know. That way I'm prepared.

Thanks

Steph

[Bumptastic]

I'm afraid I don't have any advice, but wanted to say that you are not alone- my Dad is in the same situation as your Mum is, and is barely eating or drinking anything, so I too would be interested in others thoughts. I read the PSP association's fact sheet on swallowing to see if there were any tips on there, but unfortunately didn't find anything to help. PSP is so cruel.

[steph75 in reply to Bumptastic]

The nurses where mum is have never dealt with this before either. They have asked the neurological nurse to pay mum a visit. So maybe then can help x

[AmandaF]

Hallo, Steph,

I admire your Mum and I admire you for confronting the future like this.

My advice is to involve your doctor at this point. You need advice about how to manage the next stage, as your Mum stops taking food. I see that your Mum is already in a nursing home, but you might ask for a referral to your local hospice, who will be able to support both you and your Mum both now and possibly later in the hospice itself, if you wish. What I did not know, is that hospices provide care in the community in many ways for people with life-limiting conditions. You can go and visit the hospice yourself to see if it offers any advantages over the nursing home, when it comes to the final stages. Even if you and your Mum decide it is not for you, I think a hospice might offer advice that will help you plan.

My Mum also planned not to accept a peg or tube feeding when the time came. In the event, she died before we got to that decision point, but I know she would have stood by her decision. I hope I would have been courageous like you and supported her.

Good luck, Steph. Thinking of you both.

Amanda.

[steph75 in reply to AmandaF]

Thank you Amanda

Yes we do have involvement with the hospice and currently waiting for a visit.

I take it, it isn't long once they cannot eat any longer?

[AmandaF in reply to steph75]

Hallo, Steph,

I honestly don't know and I guess each person is different. I would get your GP back in, because you seem to have hit a decision point. Maybe they can advise you.

Also, the NHS site gives broader advice about end of life,

nhs.uk/Planners/end-of-life...

Good luck, keep in touch. Hope you get some guidence soon - it's very difficult for you.

Amanda.

[ketchupman]

What will give you a little extra time with your mom is to have them start thickening her food and liquids. Initially she will need to have it at a consistency called nectar thick. But eventually it will have to be honey thick. There is a product you can buy called "Thick-It". It's a powder and you just add so much to liquidifued food or drink to get it to the right consistency. It doesn't change the taste at all. You will generally know when you have the right consistency whenever she swallows and it goes down without her having to cough or making choking sounds.

I know it's hard. For my wife, we went with the PEG, which is AWESOME. But my wife was stricken with this horrid disease at an early age (mid 40's), so it was a much easier decision for us to make.

God bless you, your mom, and all your family.

Ketchupman

[steph75 in reply to ketchupman]

Thank you unfortunately mum has her food and fluids thickened already to stage 3 and beyond

[longsuffering]

Please don't dismiss the PEG idea. my husband was dehydrating on a holiday we spent the rest of the time in the Gold Coast University Hospital( a very good hospital!) with him on a drip to redydrate. came back to Sydney, got a PEG-it was murder-they gave him a feed that gave him cramps. Then a few months later it came out overnight, went to hospital a different dr (at ST George) put a different one in, we started a new feed then BINGO. Since then we have been on 2 cruises, to the theatre many times, to watch the grand children every week at sport, to art galleries etc you get the picture-I take a little bag with a couple of syringes, a couple of bottles of feed (Ensure 2 cal per ml-always go for the highest calories-don't listen to dietitions who tell you different) and a bottle of water-he has been fed on boats, trains, planes, theatre foyers(out of the general view). Some days are hard, but he is still here and enjoys as much life as he can. we go to restaurants-yes I fell a bit guilty, and he always reaches for glasses and food-you have to watch him-but without the PEG, none of this would be possible and he would have been long gone.