Feeding tube

[JoM]

Hi all, it’s my first post so please bear with me if I’m getting things wrong, or rambling.

My partner was diagnosed with MND at the end of October, so I’m on a steep learning curve & have been reading through all your posts in order to learn.
He has had an initial visit with the Specialist nurse, who talked about having a feeding tube fitted. His instant response was no, so I’ve been trying to chip away over the last few weeks to talk him round. The nurse said he has the ALS type & currently the only/most obvious problems are with his speech, swallowing & saliva. He is still eating, but food that needs chewing a lot is ruled out. Consistency of porridge, soup, custard etc is the better option, although he does struggle even with that.
My question is, has anyone not had the feeding tube or cared for someone that has refused it? I’m unsure what will happen when he can no longer swallow, but it seems that may be his plan, as a way of ending the progression. Having a conversation about it is difficult, not just because of his speech but also as he doesn’t want to talk about it 🙁
If anyone has any advice or suggestions, it’d be much appreciated.

We have out first visit next Monday at the MND clinic, so he’ll be seeing the dietitian, respiratory guy & specialist nurse. We’re also waiting to have an appointment with the speech therapist, so hoping that will happen this week.

Sorry the post is so long.

[shelly21]

JoM warm welcome to the group.

I have als which awhich my swallow and speech. I chose to have my feeding tube early.
my cough is very weak and to aid thinning down mucus down, I have to have 2 litres of water. I have fluids via my feeding tube. I would really struggle swallowing that much water.

Just thought I would add this because its not just food to think about.

[JoM]

Thanks shelly21 The nurse did say to him he could just use it for fluids & medication, whilst still eating normally. Just trying to sell the idea to him is like hitting a brick wall. Maybe they’ll push it a bit more next week. Nurse said his cough seemed good & breathing, but pointed out it would need doing before his breathing deteriorates, due to having anaesthetic. Nurse thinks he’s in denial right now, which I suppose is normal initially.

[denise]

My husband had his fitted early on. It's been handy to add extra water and feeds when he was poorly.

The operation is very quick and I'd recommend it's done but my husband was convinced he wouldn't have it. It took our daughter saying it's not just about you it's about us too.

[Bowler]

JoM. I cared for my wife for 5 years. She chose not to have any form of intervention including not having a peg. The likely outcome was clearly discussed many times but she was adamant so I fully supported her decision. The final year she survived on tapioca and custard. When she could not longer manage that she died.

I don’t mean to be patronising or over dramatic but your partner needs to understand there is a good possibility he might starve himself to death.

I can also say it was the worst time of my life watching her deteriorate mainly through lack of nourishment so you both need to be prepared if that is indeed his wish.

[JoM]

That must have been so difficult for you bothBowler & I’m sorry for your loss.
I know ultimately it is his decision, but I hadn’t realised you can survive for so long, eating the bare minimum. Maybe if he knows it’s not a ‘quick fix’ so to speak, he may reconsider.

I will admit denise when I realised he wasn’t waivering, I did say I wasn’t ready to let him go or that he’d give up so easily. It was an awful thing to say, but I just want him to have a chance of living the best life he can for as long as he can. Unfortunately he’s never had children, so I can’t even give that as a reason to sway him.

[Hope]

I asked for a feeding tube about 3 months ago because I am finding it difficult to eat. I was told I needed to wait until my next respiratory appointment in December and have been prescribed supplements to increase my calorie intake. I was told I would not suddenly find I can no longer swallow but I am not sure I believe that. I am now considering not having a feeding tube but am worried about the impact that will have on my adult children.

[MMG]

my husband had a PEG fitted on the understanding that he could choose to withdraw from using it when he decided he had had enough.

He did exactly that and died three days later, however the palliative care consultant did say that at that stage he was very poorly and this is unlikely to have caused his actual death.

However, the positive was that he felt it gave him control over the end.

[Ellie]

A warm welcome to the forum JoM

I’m sorry for your partner’s diagnosis and for the difficult position you both find yourselves in, especially so soon after his diagnosis. Tbh, I think the nurse could have let the diagnosis sink in somewhat before even suggesting that your partner needs to think about making such an emotive decision - the first few weeks are overwhelming enough but it’s been raised, so here we are.

It sounds as if your partner has ‘Bulbar onset’ ALS, meaning his symptoms are speech and swallow as you haven't mentioned any problems in his limbs. The SALT (Speech Therapist) will give advice on swallowing safely and foods which are good for him to eat and to avoid. For me, omelettes are a winner!

I’m inclined to suggest parking the whole feeding tube topic at least until his MND Clinic appointment. If he’s adamant that he does not want the tube, he will be supported by the SALT, who again will give advice on ways to get nutrition and hydration orally for as long as possible.

You mentioned difficulty communicating - the SALT will be able to address that too and get the ball rolling on a text-to-speech app/device.

I have a feeding tubethrough which I get all of my meds, hydration and the bulk of my nutrition, and I eat a small meal daily.

Love Ellie xx

[Jackie R]

Hi JoM, my husband refused to have a PEG for a few months. Eating gradually became more difficult for him, by the time he agreed to have the tube and the NHS got it organised it was too late, his stomach and bowel had moved due to his weak diaphragm. At the end he was living on enriched smoothies until he couldn’t swallow at all. He then agreed to have an NG tube placed but it was too late, he died a few days later. My advice to anyone with MND is get the PEG in early, even if you don’t need it at the time. With MND things can change very quickly.

[Claireflo]

Hi JoM, sorry you find yourself here and to hear of your partners recent diagnosis.

My dad was diagnosed with bulbar onset in May 21 after a year of inital symptoms. He was on fork mashed food before diagnosis and progressed through to liquidised (balancing the consistency so it wasn't too thick or thin). He was asked a couple of times about a feeding tube and he declined each time. His reason was because he's squeamish and didn't like the idea of the operation or having the tube in. However, he got to October 21 and his eating had really declined so at that point he finally decided to have the tube fitted. It was finally done in late December and by then he had lost quite a lot of weight as eating had become very difficult. He has coped so well with it and by March 22 he was unable to eat or drink so without it he wouldn't be here. Its also useful for medication.

There are different reasons for saying no to the tube and everyone's progression I'd different. As MMG points out above the tube still gives the person control as they can decide at any time not to take any more hydration or nutrition through the tube. My dad still had his mobility at the time he had the op (it was mainly his speech and swallow affected at the time). So for him he still had a quality of life that meant he wanted more time and that's what the tube has given him.

There's a site called My Tube that has videos from people who have had a feeding tube as well as one from the husband where his wife decided not to have the tube and had passed.

The inital diagnosis period is very difficult and overwhelming, denial is a natural reaction, maybe time to process everything will help. Also it might help having the various professionals explain it and talk it through, and the consequences of not having it. Its a really difficult situation for all so don't be hard on yourself for saying the right or wrong thing.

I hope the speech therapist can help with the communication challenges, my Dad uses something called a lightwriter, which speaks what he types. They may also suggest voice banking before his voice deteriorates further.

I'm sure you'll find lots of support here on the forum x

[TinyLady]

Sadly some of us don't even get offered a feeding tube. I think it's a dilemma but it's important to understand what is involved and have choices. I hope you find a way forward JoM

[JoM]

Thanks for all your replies. I think some points have been raised that may help with his decision. Control is a large part of it, as it must feel like he has so little now, so I think if he knows he can still opt to cut off using the tube when he feels enough is enough, that would reassure him.
His swallowing & speech have deteriorated since February 22, which was the first obvious sign, when initially it was thought he’d had a mini stroke. It then took 9 months for the MND diagnosis so now his speech is too far gone for voice banking, but we haven’t even had that suggested just yet.
I know there’s lots of things that will come up in time, but reading all your posts & comments does give some insight & helps hugely.
Thanks again

[denise]

Don't wait to be asked if you want one tell them you want one.

[TinyLady]

I was offered a PEG end of last February... but in August I was told I wouldn't be offered one and I had to maintain my weight myself. Hence the constant consumption of chocolate and ice cream!

But my case is (I hope) unusual. I think a PEG brings control rather than removes it. My concern is just that you have adequate support so you can manage the feeds/ care of it.