From Amy with love...

What it's like to be the carer and wife of someone who wants to give up and leave you behind...

Amy's words...

In happier times; together the way we should be

I am not a writer but I am going to attempt to put into words how it feels when your wife tells you she wants to go to Dignitas for legal assisted suicide, it was heartbreaking, soul destroying; like she was telling me she had cheated but rather than being in the arms of someone else it was with the idea of giving up on us, of giving up on herself and of leaving me in a world that would no longer have her in it. 

In all honesty I wished she had cheated with someone else, at least she would still be here, at least she would still exist in my world, I would then have every right to be furious with her but we could get through that, we could fight to be together; I would be able to fight to get her back but I couldn't fight this; I couldn't fight for someone who was no longer here.

First of all, the biggest feeling I got was an overwhelming mixture of denial and grief; Initially telling her she was being silly and that we would get through it, telling myself things weren't as bad as they seemed. That it would get better, she would get better, laughing and joking with family as if my world hadn't started crumbling beneath my feet. 

Carrying on like she hadn't just dropped the biggest bombshell; Unfortunately, my mind couldn't switch off and I kept repeating it in my head like a mantra making the smallest tasks difficult to concentrate on. Working out our finances became mind-boggling, everything just seemed so trivial and unimportant and I couldn't focus on anything other than the thought that I am losing her, I am losing her... I am going to blink and she will be gone.

I think the second stage was anger; She wanted to give up and leave me all alone when I had given everything up to stand by her and support her! Anger that I had to carry this burden on my shoulders as she had made it clear I was to tell no one else; why break someone else's heart when mine was clearly enough. 

That I was not a part of her equation before making this massive decision, that she could imagine leaving me so easily was just too much for me. It has to be the hardest thing I have ever had to deal with and I still struggle with it now.

One of the hardest aspects was seeing our nephews, completely, innocently oblivious to the fact that their worlds were about to be shattered and their innocence lost because my wife couldn't cope with the pain of living anymore and for her it was easier to leave us all than it was to keep suffering, to keep fighting. 

We argued, she begged me to understand, she desperately wanted me to agree with the choice she had made but that was the problem she had made that choice; I'd had no say and I couldn't agree. Not only would agreeing mean breaking my own heart and the hearts of our family but there was also something fundamentally wrong to me about agreeing for someone I love to die; and to die by choice.

I would not only be betraying my beliefs but betraying my nephews and family by being any part of this decision that would change everything for all of us. I was absolutely devastated and so, so angry that she would expect me to do that. That she would leave me with the guilt and everyone else's anger; that would have no place to rest but on my shoulders seemed so cruel.

Then comes the selfish wave; When I tell her to fight because I don't want to be alone, I don't want the pain of losing her, that I cannot picture my life without her as I wouldn't cope because I love her more than anything but again this makes me angry at her as she is willing to leave me behind. To leave OUR dreams, OUR future in tatters and to leave me with nothing but fragments of the life I thought we would share. 

Eventually I think you do kind of accept it, to a certain point I did anyway; I thought if something doesn't change she is going to go to Dignitas regardless of my view because she cannot live like this anymore. She was hurting every moment of every day and could see no way out, no light at the end of tunnel, it was hard to imagine just how that must have felt. 

I knew it was hard for her, more than just hard really, it was impossible but at the same time unless you go through it I don't think you can completely get it. With that in mind I don't think she could completely get what I was going through either. 

We were hurting each other trying to come to terms with the fact that she didn't want to live like that anymore and I didn't want to live without her and no matter what way we looked at it one of us would lose.

Fortunately, I found support groups and we found a treatment to give her hope (not a cure). Facing the possibility of losing Christie made me fight harder and me being so distraught made her fight harder. We searched and searched expecting the usual; nothing but what we actually found was possibility. 

That possibility came in the shape of Stem Cell Replacement Therapy; it was hugely expensive, in fact it cost much more money than I thought we would ever be able to save. The only thing I could think of was GoFundMe; I had read stories of people asking for help with medical costs, funeral costs etc and I thought; Why not us? What did we have to lose? 

The very night that we had found out about the possible treatment, after we had spent all day in talks with the clinic I posted the GoFundMe page and spent a sleepless night hoping against hope that it would work and that I would be able to keep Christie with me.

I can honestly say the fear that it's one day possible that she will again mention Dignitas never goes away and I have cried more tears over this than anything else I can think of. When she has a flare up that lasts and lasts, when she is depressed because of the MRS, when she is in hospital yet again, when Christmas is taken over by her illness; I worry about it again and again and sometimes I truly feel like I can't breathe with the weight of it all.

I just want to make it clear when I say I gave up so much to care for Christie I did it gladly and I have gained so much more in return. I know some people think its a huge burden considering my age and that I am missing out on living a full life, Christie is the first to say that, but I can honestly say that I am happy. 

I am in love and the only thing I would change is Christie's illness so that we could both live a full life together. I would rather live half a life with Christie than this full life everyone talks about without her because a life without Christie is no life to me. 

I also know that there are some people who believe being a full time carer is easy, that it is an excuse not to work and I really don't want anyone to think I resent Christie for this but being a carer to someone as poorly as her is more than a full time job; It is a 24 hour, seven day a week job that I happily do but that is all consuming, exhausting at times and really quite frightening at others.

I watch her eat wondering if this is another time her throat will swell and she will choke AGAIN, I watch her sleep and listen to her breathing pattern thinking about whether I should wake her to give her a nebuliser, I see her swelling spreading and get the Epi Pen out ready; there are so many dangers that haunt our everyday lives; I would rather work as a bin lady, a vermin exterminator, a chicken truck driver lol than watch Christie suffer like this.

That isn't an option; I don't get to choose whether our lives change, Christie's illness dictates that, she has no say either, we are ruled primarily by MRS and to some point that is okay because I signed up for it and I would do anything, live any life so long as I get to spend it with her.