Alan, Me and MND, Part 2: end of life

We didn’t have much experience of hospices and didn't really know how they worked. I had one friend who had passed away in a Marie Curie hospice, but we had no idea what it was really like.

When we started to go to the hospice on a regular basis (for support meetings), surprisingly the environment felt really calm and cheerful. The building was lovely and Alan soon became comfortable with the idea of being there. 

About a year after diagnosis, he contracted pneumonia and had to go into hospital for emergency treatment. I think he thought then that he was going to die. 

At that point, it started to hit us that we needed to understand what his end of life situation could mean. 

Alan didn't come straight home from the hospital. He needed to go to the local hospice (The Myton Hospices) for symptom control. That was a good decision because it was in the grounds of the hospital and the staff were incredible.

Symptom control was a phrase that was a bit unknown to us. It eventually became apparent that Alan was being stabilised, making sure he was on the right drugs so he could return home.

During his time at Myton, they helped him record his life story, which was a wonderful thing to do.

Alan coming home in February 2019 was wonderful. A lot of people think that when you go into a hospice, that's the end of your life. But it wasn't true in Alan’s case. 

When he came home we started talking seriously about what he wanted for the time he had left.

Unfortunately, Alan got pneumonia for a second time, and went into a Marie Curie hospice on 9th April 2019 after a spell in hospital. The hospice turned out to be his last and final home. While he was there, he could no longer speak and was on a lot more drugs.

His kidneys started to fail too. At a long meeting with all the doctors, Alan's family, myself, and the social worker, it was advised that he stay in the hospice and not return home. 

He was entering the end of his life. It was a very sad time.

At that point, we got funeral directors involved. They met Alan, and we talked about his wishes for his funeral, and his ashes. 

We talked about my life after he died. I asked him specifically what he wanted me to do. He was very sure that he wanted me to find a new relationship. He thought I should move out of our house, and said, 'you can't move on until you move out of our home. I want you to be happy. You're too young to be on your own.'

I asked him how he felt about me writing a book because other people had suggested I do that. He said, ‘I want people to know what this disease is like, not just for me as the patient, but for you as the carer.’

He was in Marie Curie for two months. He died peacefully on 5th June 2019, nine days before our 5th wedding anniversary and a few weeks short of his 65th birthday.

Being a carer is one of those roles that is often overlooked and underrated. You go into it without any training, and you don't have a manual. There is love in your heart, but it is hugely demanding.

Due to all the medical equipment, Alan slept downstairs in what used to be our dining room, with me upstairs. We had an intercom so I could hear him if he needed help. I didn't get a lot of sleep because Alan's ventilator mask would slip off in the night and need adjusting. Eventually that wore me down so much we needed support from night sitters provided via the care package. 

The Marie Curie hospice played a critical role in everything, right to the very end. Alan hadn't had a bath for 18 months – he could only have a shower at home. In the last few weeks of his life, the hospice used a specialist hoist that lifted him off his bed into a jacuzzi bath. It was a joyous experience for him! 

I now encourage everybody to go and have coffee in their local hospice just to get to know the place, because most hospices have lovely cafés and what you pay for refreshments helps with their funding. 

My original perception of a hospice was low. I had no real expectation or awareness of them. When I went to see my friend who was in Marie Curie before Alan, I was absolutely blown away. In his room there were bottles of wine and boxes of chocolates and there was lovely furniture and nice comfy blankets everywhere. I remember thinking, ‘wow, this is better than a hotel!’ 

It’s daunting the first time you visit someone in a hospice, but it completely opened my eyes.

I never really went back to the hospice until my husband was ill, but now I go all the time because I'm a volunteer. I often just go for coffee with friends. I feel it’s my spiritual home, because Alan died there. I feel drawn to the hospice and that's why I'm raising funds and awareness. 

At the end of my life I want to be in a hospice if I have a choice.

I think everybody needs go and see their local hospice and experience the environment before the need arises. 

It demystifies everything and helps you understand that these places are beautiful and the people who work in them are complete angels. 

If everybody took the time to understand what hospices are really like, more people would be less frightened about the end of life.

> Use our Hospice care finder tool to explore hospices in your area.