Alan, Me and MND, Part 3: dying

The idea of someone dying in your own home is a double-edged sword. It's a wonderful thing to be able to offer that and I wish I could have done that for Alan, but I know it would have been extremely difficult and heartbreaking. Alan died in a hospice where there was so much support around us all the time.

Alan’s end of life was so calm because the right drugs were able to be given at the right moment, which might not have been the case if he died at home. At the long, multi-disciplinary meeting in Marie Curie it was hard on Alan to hear it was better that he stay at the hospice, rather than go home. But he cared for me as much as himself and didn't want me to go through more hardship. 

The decision was tough but it was the right decision all round.

I was quite terrified of Alan dying because I thought my reaction would be violent. He couldn't speak for the last few weeks of his life and that was so difficult, but he had already expressed that when it got to that stage, he didn't want to be on a ventilator.

When the moment came, I was visiting Alan one night and he didn't look well. His best friend who was also there noticed that Alan wasn’t his normal self. I called a nurse and she gave him some medication to help. But he didn't really respond, which was unusual. Normally the medication would calm him down, but it didn’t. In his eyes something was different. 

I called the nurse again and she also saw what I saw. She called in senior nurses and before long there were several nurses in the room. They took him off the ventilator and said to me, ‘it's OK to get on the bed now.'

So that's what I did.

As I held him I could feel him slipping away. Then, he just stopped breathing. I was calm even though I was quite shocked how suddenly it happened. The day before he had seemed fine.

Even though I had been thinking for a while that he could stop breathing at any time, I was not really prepared for it actually happening. 

Hazel: this photo (above) was taken on the 4th of June by a friend who was visiting. And we didn't know at the time that he was going to die the next day. So that’s the last photograph that was ever taken of us together.

I do feel that Alan’s death was very calm. All the staff in the room were calm and gentle as they each said goodbye to him. Everything was quiet because the noisy ventilator had been switched off.

It was so peaceful. I stayed with Alan for ages. I can't remember how long.

I'd read a brilliant book by Dr Kathryn Mannix (With the End in Mind) which had helped me understand what most deaths were like.

> Explore resources by Kathryn Mannix: Dying for Beginners: what happens when someone is dying, and Dying is not as bad as you're expecting

One of my friends had lost her dad and I'd asked her about her experience. I'd asked other people too. I really wanted to understand what the moment of death was like. While I did a lot of research, the thing that helped me the most was Kathryn’s book.

So yes, Alan had a good death. He had a good life, too.

The process of dying is really interesting to me now. 

I feel that, in an ideal world, everybody in hospital who's at end of life should automatically be posted to a hospice to be looked after. If I could campaign for anything, it would be that hospices get proper government funding to make sure they can provide the services we would all want. For me, there is no better place. 

I don't even think I'd want to be at home. I'd want to be somewhere where you press a button, and somebody's comes to give you the right support at the right time and spends time with you. 

The way I see it, it should feel like a five-star hotel when you are in the last moments of your life. I'd want some nice possessions around me, lovely gentle music playing, no beeping machines, several visitors holding my hand and reminding me of the good times. Basically, all the things you cannot have in a hospital. 

These days I talk about dying all the time because I do a lot of public speaking, sharing our story. Also, it comes up naturally when I am with my friends. I say to them, ‘don't wait until there's an illness in the family to think about and discuss these important things’. 

I'm very keen to help people realise that this is a tough subject, but an important one to talk about, because it takes away a lot of the stress that comes after someone dies. The more you talk about what you want for your end of life while you're not ill, the more you and your family can prepare for the day something will inevitably happen.

In my view everybody should have that conversation with their loved ones in a careful and measured manner, before the need arises. It could be started by saying, ‘I’d like to have a chat about an important subject, so there can be no doubt what I want when the time comes.’

No one lives forever. 

When we get poorly, we might not get better again. and we might need to go to a hospice or hospital. Let's talk about what hospital is like. Let's talk about what hospice life is like. Let's talk about what funeral services options there are. Let's talk about the moment of death.

Let's not be afraid. 

I’m no longer worried about talking about death, dying and end of life. I’ll talk about it with anyone, anywhere, anytime.

Lots of people probably think it’s bit morbid and would rather avoid the conversation, but I have already made sure my family totally understand what I want, and where they can find the appropriate documents if I were to die suddenly or in the event of my diminished capacity. 

I am proud of Alan and the way we tackled our situation. Throughout all he went through he never complained or gave in to self-pity.   

Even though he had to have absolutely everything done for him – he couldn't comb his own hair, or clean his own teeth, or wash or feed himself – Alan remained amazingly strong and conducted himself with humility and humour. 

My love for Alan continues, and people tell me our story is powerful and inspirational.

Alan and I are proof it is possible to have a good life, even while dealing with a complex medical condition. Despite MND we had some incredible adventures. They were challenging, and we had to go the extra mile to make them happen, but Alan had a good end of life. I have memories from that time that are just as meaningful as the memories from the period before he became ill.

Alan didn't want the illness to define him, and neither did I. We really did make the best of a bad situation and I've tried to do the same since he's passed away. 

There are multiple reasons I’m motivated to do what I do now. I want to honour Alan. I want to raise awareness of Motor Neurone Disease and in particular, the physical and psychological challenges faced by caregivers. 

I also want to give back financially. 100% of the money raised by sales of my book goes to the two hospices where Alan was cared for, and the MND Association. 

If I sell all 1,500 copies of the book, I’ll raise £20,000 (over 500 have already been purchased). And importantly, in the process, I will have raised considerable awareness. The book helps families because it's got lots of practical guidance in it. It also gives health care professionals a unique holistic view of their patients. 

My book will be of interest to families dealing with diseases other than MND, because the book itself is inspirational. It’s effectively a love story. It's our love story. Right to the end of our lives together.

Thank you to Hazel for sharing her story.