How much food?

[denise]

Hi Sarah and Phil

thanks for replying. I think again it's going to be up to him to decide. It's going to be one of those strange conversations that we have covering so many things. I find I'm looking for an ideal moment to have a discussion. When the tv isn't on and he's concentrating on what I'm saying.

love and hugs Denise xxx

[slp]

I think that it is a very individual thing. As I mentioned I found it very difficult for a long time and my friends found it hard too xx They felt guilty eating in front of me.

To be honest it was time for me.

I do all the food shopping and my children take turns with the cooking. I enjoy watching them cook and help.

stay safe x Sarah xx

[denise]

I don't drink so find it awkward going out (seemed to recall doing that in another life) one coffee is quite nice but after that not a lot of choice. Feel a bit like a lemon sitting there without a drink but miss the whole social thing. So not being able to eat or drink must be obviously worse so what is everyone doing on these occasions? Sorry if this seems insensitive but I'm trying be aware before this arises.

[Bowler]

denise we simply stopped having family round for food 😞

[denise]

Hi everyone I agree with everything you say it's got to be his choice how can I say "no you can't have that bacon sandwich " if hes up for it and understands the risk then it's up to him. There's not a lot left for him to enjoy. I'm just making sure his food is easier for him to cope with.

the biggest thing will be when everything opens up and we can eat out again. We used to enjoy lunch out but I don't think he will want me helping/feeding him in public. The whole social thing will have changed. I forgot about how it will be when our family will get together and have dinner or bbq. We all enjoy a drink and food and by then he will probably find it hard to cope. That's why I think he should enjoy it while he can.

can I ask what you do when you can't join in with the meal. I know it's a strange question but I'm just trying to think ahead and be prepared.

love and hugs Denise xxx

[slp]

I also agree with Ellie. It must be Stephens decision when to stop eating or drinking. He alone knows how he feels and will know when the risk is too much. I think that I can safely speak for most here that are no longer eating, we got to a point where we knew that it was not worth the risk but it is hard making the decision. I love food and miss it more than anything. It is a social thing and when you don't eat people don't know whether to invite you out to eat. Then it becomes a bit of an elephant in the room.
I felt very emotional when I first couldn't eat anymore and I refused a New Year Eve party invite from one of my dearest friends because I knew the way the evening would go with lots of good food and great wine and the evening spent around the dining table.

I told my husband to go without me and I stayed home. I made the wrong decision but at that time I couldn't cope. Now I can.

I didn't mean to ramble on but I think that it is important to understand that it is not easy and people need to allow time for these processes to run their course and there is no right or wrong x

much love Sarah xx

[David R]

I agree with everything Ellie said, I’ve been told more than once by professional's to try and avoid the risk of aspirating even had two swallow tests under X-ray which weren’t good results, I know there’s a risk and I only drink tea or the odd calorie drink now, choked several times and worried for a day or two I’ll get an infection! Food wise you’ll know when the time comes and it's not really possible any more, I had a few times where food got stuck in my throat so I stopped food altogether. Also had a few occasions drinking and then choking I then just stop and put the rest through the tube with a syringe. I’m prepared to just take the risk as and while I can.

[Ellie]

It is ultimately his choice, Denise - nobody can force Stephen to stop eating and drinking.

The medics are worried about the possibility of him aspirating food and/or liquid into his lungs, causing infection or pneumonia and, as with many situations in living with MND, there is a trade off between risk and benefit/wants and needs/protocol and quality of life.

If Stephen feels safe eating and drinking, chances are he will continue doing so, as many of us would. If he has a few scary coughing episodes, he may reconsider.

There is no right way, no wrong way - people living with a terminal illness should get to choose their way, difficult though that may be for some medics to understand.

Love Ellie.

[matthew55]

I have made that decision myself even though I miss eating terribly. But at the end of the day it's an individual thing as everything with else connected to MND. 👍x

[denise]

There is something I am concerned about. Yesterday we were told that Stephen should not eat anything by mouth. He still likes to eat and he has so few things he is able to enjoy that I feel it should be his choice. He does have coughing fits but more likely to follow a cup of tea. What's everyone's thoughts on that one?

[Ellie]

It's great that you've managed to increase his weight, Denise - it must be very hard to know if you're doing the right thing by increasing his pump feeds, but at least you know what he's getting that way.

And, it may be his tiredness and lack of energy which is reducing his appetite and interest in food - it's a constant guessing game/game of compromise... x

[denise]

Hi Ellie

the peg feeding is taking away his appetite. He's on 800 ml at 100 speed. He just wants toast. Driving me nuts. I've just made mince, tomatoes and leeks and he's going to eat it or else. At least i know he's getting something. I think he looks better his weight has gone from 70kg to 80kg but he still complains of tiredness. I think he's sleeping better too. He's got high calorie desserts, which are very nice, and he's supposed to have 2 a day. He usually turns his nose up and I do have to feed him because of problems with holding a spoon. I sometimes help out 😋 thanks for asking xx

[Ellie]

Hi Denise,

How is the feeding 'experiment' going? Is Stephen's appetite any better?

Love Ellie.

[denise]

Stephen was encouraged to do overnight feeding. It didn't seem right to me. Thanks graham you confirmed my feelings.

[Graham]

Hi Sarah,

Overnight food is a bad idea. Your body is shut down and doesn't want food. Because we are generally inactive, we need less food.