I’m thinking of refusing food and drink because my mnd has gotten too much. does anyone have any experience of someone doing this. it’s causing so much distress for family
Hello, I have just read your post and how distressed you sound. Please contact the Samaritans on 116123 and talk to them. Talking or just thinking of talking to someone may help you sort out the things that make you feel so desperate. We are always here for you but please ring 116123.
I am thinking of you. Bless you. Sxx
Echoing the words of support from @SusieM & @Tillwemeetagain, there’s lots of people to support you through this @bengeeson. It sounds like you’re going through a difficult time and things are feeling too much for you at the moment. I’m also hearing this is having an impact on your family which in turn might be having an impact on you. By posting here you’ve taken a really positive step. I’m wondering if you can share more with us about how you’re feeling and what you mean by things getting too much?
@SusieM mentioned a great organisation you can reach out to if you feel you need more support outside of the community. Samaritans are always just a call away 24/7 any time you would like someone to talk to for some support. I’ve also listed below a few more options you may like to look into:
- Shout are contactable by text, 24/7. You can text SHOUT to 85258 and talk to them about anything.
- You can also find your local NHS urgent mental health helpline .
- If you have any concerns for your health or safety, call 999 or go to your nearest A&E.
Here at Sue Ryder we also offer an online bereavement counselling service. This is a free service and sessions are held via video chat so you can attend from home. There’s more information about this service here: www.sueryder.org/counselling
Keep reaching out for support and keep us updated with how you’re feeling 
thanks to everyone I can’t talk and am locked in And peg fed. does Sue rider offer this
@bengeeson that sounds really difficult not being able to ring someone. Samaritans also have an email that you might prefer using and you can reach out to them at jo@samaritans.org. Shout are also a text option which you can always reach out to by texting SHOUT to 85258.
At Sue Ryder we offer video bereavement counselling and we also have our online community here which you’re welcome to keep posting on. There’s lots of caring people here to help you 
Are you receiving much support at the moment from your family or any other organisations?
Please remember we are always here for you and I now understand your position. I do understand what you have thought about but it isn’t going to be nice, there are others around for you. Is it possible to talk to your family, they may be other ways they can help you. Please take extra care and I wish only the best for you. Bless you. S xx
Dear Ben, I am really sorry to hear this. My husband Jeff stopped eating and drinking as he could not face another step with MND. Like you, he was trapped in his body. He could not speak to me anymore. It’s absolutely devastating for you and your family and friends to go through this!!! He was even booked for Dignitas in March, but thankfully he passed away at home and I was with him.
Jeff’s nurse from St George’s hospital, London told us that if he doesn’t want to use his ventilator, they can help him to be comfortable. Same with PEG. You don’t need to be dehydrated. NHS can help you. Also, people from Trinity Hospice were very supportive and they only wanted to follow Jeff’s wish to stay at home and be comfortable.
I miss my Jeff every minute and not coping very well, but I am relieved he is not suffering anymore.
Thinking of you.
Petra x
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Petra, am so pleased you have shared your story with Ben and I am in awe of your courage in supporting your husband. I normal visit an hospice and I have seen what life can be like for people in these circumstance and I am so grateful that my husband didn’t have those problems.
Take courage from what you have been through and you will find life becomes easier but our loved ones will always be part of us no matter what. Blessings to you all. Sxxx
Hello Susie123,
thank you for your kind reply. It must be very difficult for you too.
Take care.
Loads of hugs,
Petra x
thanks petra for sharing. yes it’s incredibly difficult can I ask how Jeff passed? I would much rather be at home but I have a 5yr old daughter who I need to consider. do you have any children? thanks for sharing
Hello Ben,
No problem at all.
it is extremely difficult to make this decision like yours. Jeff was on ventilator that night and at 2am he wanted the ventilator off his face so I helped him. I also sorted his pillows so he could be comfortable again and can breath. He passed away in his sleep around 3am. He just drifted off. I was there, as I was watching him and checking on him. His body was very weak (no food, no drink for few days) He refused to have PEG. He would rather go to Dignitas. He didn’t want to suffer.
The palliative care was booked that morning to give Jeff some medication. I cancelled them at 7am as Jeff was already gone.
I completely understand your concerns about your daughter. It is very traumatic. The only concern Jeff had, was me. We don’t any children. Jeff just turned 55. We were together for 23 years. We just lived for each other. We even had the same Birthday. We were like twins.
Children are very bright and understanding. We have two nieces which are similar age as your daughter - 4yr and 6yr and we are very very close to them. Jeff loved them to bits and they loved him. When Jeff was still alive, he told them that he will be going away soon. They won’t see him any more, but his spirit and his soul (like an angel) will always be with them. Children still have the instinct to feel and see things. When they recently visited me, we talked about Jeff like he was still here. They are of course sad not to see him, but they understand. Everybody has to go one day.
Ben, I am not sure if I helped you. The only one thing Jeff told me when I asked him, if he is scared of dying, he said: NO, I am not, I just don’t want to leave you behind.
Jeff nearly died when he was a little boy. He was drowning. He told me that he saw this amazing light, so peaceful, he didn’t want to come back. Luckily he did, as I am so grateful he gave me 23 years of unlimited love and happiness. I wish we could stay together longer, but his soul was ready. He just had to move on.
Take care. Please write anytime as I am on Sue Ryder’s site a lot. Feeling a bit lost.
Petra
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thanks petra. I too want to just drift off. Was he reliant on ventilator?
also how supportive were hospice who is working with you now to help you grieve?
Hi Ben, Jeff only used ventilator when he was weak to breath. One day, he didn’t use it at all and other day he used it 2hours twice a day. So he wasn’t on it all the time.
Regarding the grief, the hospice specialists and even other charities including Sue R. offered support. So far, I only had one session with a bereavement specialist straight after I lost Jeff. It was far to early for me to speak to someone as I had a very busy schedule ahead of me. The doors are open for me so I can give them a call if the grief is unbearable.
I was very impressed how NHS staff handled and respected Jeff’s wishes straight from the beginning. They were so open with us how they can help Jeff’s suffering when the time comes. And when I needed them, they were ready for action. The Trinity hospice and GP were extremely helpful.
Yes, drifting off is a very nice way to go.
P.
Hi bengeeson
I hope you are not in pain and try to drink.
There are fortified drink with the nutrients to keep you going if you having difficulty eating solids.
Also there are the powder you can mix with anything .
Children are resilient and dont grieve as adults do, but they will remember what they see and what people tell them. They often do role play and act or imitate many times what they observed until they move on.
It is the way how they understand the things sround them
Try to drink so your daughter see it and if you cannot talk try to write all thing you wish her to know, someone would read out for her, she will make sense those words. Be honest even if reality seem cruel that is better than children as help them to understand.
Ask your Palliative Nurse for a syringe drive maybe that can help you to be comfortable ask for the drinks there are also fortified moosh and jellies or you can buy from pharmacy.
I hope you are without pain and comfortable.
Hugs xx
Hi Bristles
Thanks for correcting me.
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Yes, it is difficult one.
With MND late stages you are fed by PEG, so it is very difficult to recommend something if you don’t know the progress of the illness. Every case is different. You can’t basically swallow anything (not even water) as your throat muscles are not working and you can choke or end up with a terrible chest infection.
best,
P.
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