Refusal

[Tess]

My partner has expressed his wishes on refusing several things in the future.

Can I ask, if he were to refuse a peg/rig in the near future and only wanted to be fed solids, what would this lead to if swallowing becomes more difficult? Death by choking?
(Slight sarcasm there, but not so sure how this is going to go down in the future).

Anyone know?

[denise]

To peg or not - read what Matthew has said. It might help make a decision.

[Bowler]

Hello Tess. My wife has gone down the no peg route. It’s been 5 years now and she is as of today unable to swallow any food. She is very thin and very weak. It is the most distressing thing to watch happen to a loved one but I have to respect her wishes. So far I’ve been told by the medics that they will give her medication to keep her comfortable until the end. I will be having a detailed conversation with the team tomorrow.

this thing is tough

[Bowler]

Tess I wasn’t sure about being to graphic but on balance if you are trying to make a decision It might help.
as the swallow has deteriorated the type of foods has changed. She has ended up with just custard and yogurt for the past couple of months. This started to come back down her nose and squeeze out of her mouth. I’m not saying this happens in all cases but it is the reality of what has / is happening right now here.

I’m sure you will both make the right decision for you.....god bless

[matthew55]

My best friend was an alcoholic and drink killed him. You can lead a horse to water.... What I mean is that when a person needs help there is only one person who can decide to get help. Happy Days.

[Tess]

Super tough Bowler. Yeh i read previously Matthews all for it but I know all individuals are different.
Thanks for the responses. I just have to get in my head how this may go down...

[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.

[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.

[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]

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

[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

[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

[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.

[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

[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.