life is life

[DJW]

When and if the time comes that I can't swallow or feed myself or breath unassisted, then my friends it is my time to die. I refuse to go down the path of tube feeding or any intervention that artificially sustains my life. I feel that I will be dying with dignity and saving my wife and children the hardship of becoming my carer.

[Bowler]

When and if the time comes that I can't swallow or feed myself or breath unassisted, then my friends it is my time to die. I refuse to go down the path of tube feeding or any intervention that artificially sustains my life. I feel that I will be dying with dignity and saving my wife and children the hardship of becoming my carer.

Obviously it’s a very personal choice and one that my wife Ann chose which obviously I had to support. Watching Ann slowly starve herself to eventual death was the most difficult and horrendous thing that has ever happened to me her lover and carer. I’m just saying so you are prepared. Having said that this disease affects everyone differently so it may not have the same impact on you. If I could ask one thing of you it is please have an honest discussion with your family and support team.

[DJW]

Bowler Thank-you for the reply and insight. I don't want to become so reliant on another person that I can't live without their care. I know I am loved but the sacrifice that my wife will have to make is to great and I don't want to become a prisoner of my body.

[matthew55]

Currently I can no longer talk, eat or drink and I am on pump feed. I am checking out when I can no longer use my hands but my MND will kill me before that happens. Life IS what YOU make it. Just saying init? 😉😁z

[Bowler]

Bowler Thank-you for the reply and insight. I don't want to become so reliant on another person that I can't live without their care. I know I am loved but the sacrifice that my wife will have to make is to great and I don't want to become a prisoner of my body.

I totally respect that but if you haven’t already done so please have the discussions. These are choices that will impact not just you but your whole family.

[Ellie]

We all do what we feel is appropriate for our individual situation - there is no right or wrong way, no rule book.

I refuse to go down the path of tube feeding or any intervention that artificially sustains my life. I feel that I will be dying with dignity

Dying with dignity and having a feeding tube, using NIV or other interventions are not mutually exclusive.

I have many life enhancing tools - feeding tube, NIV, braces, meds, carers, mobility aids, profiling bed, eyegaze tech, wetroom and a supportive family and friends - and when I die, I too will die with dignity.

[DJW]

Ellie good point, it's not dying with dignity. Death without indignity is what I meant. I do apologise.

[Ellie]

DJW Again, death without indignity is something to which we all aspire - there is absolutely no shame in having a feeding tube or using NIV, just as there is absolutely no shame in not having a feeding tube or in not using NIV. Living where we do, we are fortunate in having the latitude to determine (most of) our treatment in a non-judgemental fashion.

Once we are diagnosed with MND, we find ourselves at the top of a hill - some of us roll down the hill without obstruction; some of us roll sideways for a bit before changing direction; some of us find big clumps of heather along our path, which holds our weight for a bit before yielding and we continue our journey. We all end up at the bottom of that hill, having come down it in our individual ways, without anyone claiming the moral high ground - as we know, MND produces no winners...

I admire your strength and resolve.

Love Ellie.

[Deb]

Ellie, I just love the analogy of us all rolling down a hill taking different paths and journeys. Im hoping to hit a very large clump of heather.

I guess we all have very different ideas about what interventions are acceptable .Since I was diagnosed I have totally changed my mind and I am willing to accept help available but I respect anyone who doesn't want it.

I am fortunate in that I have had time to think about things and talk to people. The experience and understanding of friends on this forum is invaluable.

Love and hugs,
Debbie x

[Suefromwakey]

I read these and don't know what the hell to say............just want you to know I am reading and with you........fgs

[DJW]

Ellie 🤗 i agree with you we all are on the same boat, is that an iceberg I see in the distance? See you at the bottom of the hill you lovely person.

[matthew55]

Everything ends, mountains, seas, suns and planets. Compared to that lot what are we? 😁😁x

[Olivia H]

It is a very personal choice. That is a wonderful analogy Ellie. I've also added to my visualisation a bridge coming off that hill, aka a cure, taking us off MND mountain before we get to the bottom. Given the marvels of the Covid vaccine, I think we can ask the medical world to get cracking on that bridge now!🙂

[Bowler]

I’m with you all the way Olivia with the bridge.

[denise]

My husband has a feeding tube. He's not using it yet but I know his hands are such that this will be an option that we will gratefully use. I encouraged him to have it done because I wanted to help him. Originally I had to cancel the operation because he wasn't having it done. My daughter told him 'dad it's not just about you'. don't know how I would have felt if I had to just watch him starve when he didn't need to. He has a bipap machine to help him breath. Great we all need help so why not use it. I'm asthmatic I use an inhaler and do what I can to help me. There's nothing that says I won't be in an accident tomorrow and end up worse off.
take what help you can and improve what you have now. Worry about the rest later. I'm sure your family would rather have you with them knowing you are trying to help yourself. Its your choice and their's too. You must talk to them. Think about what it would be like if another member of your family was in your place. Wouldn't you feel hurt?