Refusal

[denise]

It's the whole responsibility thing. It's daunting. It's scary. I try to come up with conversations on what we should think about and all I get is: I suppose so, if you want, whatever you think. Then when I agreed to him having the peg he revolted and now he's changed his mind and going ahead with it. I've told him at this rate I might run away. 😉

[matthew55]

What I don't know about feeding tubes isn't worth knowing. It's the only thing I'm good at these days! 😊x

[Ellie]

denise It's totally natural to be worried about what's expected of you in potentially having to look after Stephen's feeding tube, and all the feeding etc - it's all unknown to you and must be daunting.

Take a look through this site, hopefully it'll help and of course you can ask us anything: https://mytube.mymnd.org.uk/

Love Ellie.

[denise]

stephen has had a chest x-ray and ecg and his peg should go ahead in 2 weeks. its a bit nerve wracking especially as we thought he was going to have it done on wednesday but this was time for a chat about the procedure. have to say that didn't really help much infact i nearly changed my mind but stephen seemed ok about it. its like when i think we should go do something he comes up with the opposite - i need to change my way of thinking

[Tess]

Of course this helps Broostine, great to hear all experiences and thoughts x

[Ellie]

It might take baby steps Denise - the seed has been planted, who knows what may happen over time x

[denise]

Conversation with the doctor focused on the right time for the procedure. The threat of choking and that was about it. This is not an easy one but I'm going with better to have tried.

[Broostine93]

Hi Tess,

I have experience of this with my Gran who refused the PEG. Her swallow steadily declined over about a year before she passed away. We started with 'softer foods' like chocolate eclairs, mashed potato, well-cooked veg and sandwiches without crusts, eventually moving on to soups and mash doused in gravy. For the last few weeks of her life, she only ate mashed-up weetabix with loads of fortified milk and some yoghurts and some ice cream (the nursing home provided soups made from powder which got caught in her throat, so I imagine 'normal' soups wouldn't have been a problem). The last couple of weeks of her life, she had no desire to eat so continued with drinking apple juice *the only thing she would drink*. The last few days she only sucked on ice lollies to give her some moisture. She did not choke to death (that was one of my fears, so I completely understand how you feel)- it was calm and peaceful and she just drifted away. I hope this helps xx

[Ellie]

Ah, that explains things Phil.

Hospices are normally fantastic places with great staff - hope you both get good support tomorrow.

I don't know what I was in a previous life, but I'll take the owl 😊

Love to you both.

[Bowler]

Ellie. Were you an owl in a previous life 😂

will be talking to hospice tomorrow. Changing the eating position is not really an option because being any other position than fully reclined in her chair has Ann struggling to breathe.

thanks for taking the time to reply your input is always welcome.

Phil

[Deb]

Some conversations are just impossible and decisions are so personal. I have huge respect and admiration for partners and carers who respect their loved one's decisions concerning interventions. It must be so hard !


Hugs to all,
Love Debbie x

[Ellie]

No Tess, it doesn't have to be brutal - that is where the brilliant Palliative Care team comes in. X

[Tess]

Thanks for your input Ellie, good info to keep in mind.
.
To be blunt it sounds pretty brutal, but I know some individuals don't want to suffer for so long...if only there were other options (we have discussed this, but not easy convos to have)

Tess x

[Ellie]

Bowler I'm sorry your wife is at this stage. My soft palate is weak too and it's horrible when food and liquid come down the nose - with compromised breathing it can feel like suffocation 😥

If it's been a while since she has seen an SLT, maybe they can suggest the best position in which your wife should be fed etc. to minimise regurgitation. Likewise, if she has not seen a Palliative Nurse recently, get in touch with them.

Big hug to you.

Love Ellie.

[Ellie]

Hi Tess,

If your partner does not want a feeding tube and if his swallow does weaken, his progression will be monitored by his team, including Palliative Care. If it gets to the stage when he frequently "chokes" on liquids and/or food and his cough is not strong enough to prevent liquid and food from entering his lungs, he will likely get aspiration pneumonia. Repeated chest infections are a common cause of death in ALS/MND.

If and when one's ability to eat/swallow deteriorates to such an extent it's no longer physically possible to eat, they will get meds to allieviate hunger pangs etc. - bear in mind that by this stage, the person's calorie intake will have gradually decreased over a period of time, leaving them weak (i.e. it's not as if they go from eating 2000 calories per day to abruptly having no calories from then on) These meds are usually given under the skin with a syringe driver.

It is his decision to make and I hope he has the facts (without the drama) to allow him make an informed decision. He should talk to his SLT, MND Nurse and Palliative Nurse etc if possible. He should also know that if he were to get a feeding tube, he can choose to use it only for meds, fluids, food or not at all; he can still eat and drink if he has a tube; he can stop using the tube at any stage.

Big hug to you Tess, and nothing wrong with having a good old cry (but I wish you didn't have to...)

Love Ellie.