This is written from my own experience of living and caring for a loved one with MND/ALS.
As you navigate all that ALS has to throw at you, one of the things you don’t really want to acknowledge, is that your loved one will pass away in the near future.
It’s easy to just avoid that aspect of the disease and not talk about it, as if not talking about it means it won’t happen. Craig and I hadn’t talked about it, until one of the professionals looking after us said that they thought it was time for us to talk to the palliative care team.
I must admit that was a bit if a shock, as Craig was doing okay, he certainly wasn’t near death. When the palliative nurse came, she explained that it was good to talk about these things in advance, so that we could discuss them, so we could make the right choices for us. She went over what would happen near the end and what our options were.
She asked us to think about several areas such as whether Craig wanted artificial ventilation, would he want to be resuscitated if he had a heart attack, would he like to die at home or in a hospice. She also urged us to think about funeral arrangements, whether Craig wanted to be buried or cremated.
Craig decided he wanted to die in the hospice which I must admit did surprise me, I thought he would want to be at home. I didn’t question his choice but when I think back at this decision, I am certain it was because he wanted medical attention on hand. He didn’t want to die coughing or in pain. I think it was the right decision, from his point of view, as he did need medication changes frequently in that final week. It was a little impersonal though, as we were still not fully out of covid measures and the staff didn’t linger. They were also quick to get rid of me after he died which was hard.
They did however let me stay with him the whole time, sleeping in the chair by his bed. They also let me help to clean and change him after he died, so I could make sure he was properly cared for and dressed in his favourite T shirt and socks. On reflection I think the fact that Craig didn’t die at home was easier for me in the end. I’m not sure how I would have reacted to knowing that he died in our bedroom.
The palliative nurse said it was important that the medical team looking after Craig knew his wishes, as he may not be able to communicate them himself. Craig was always very clear about what he wanted in life and this was no different. He didn’t want anything to prolong his life so he agreed upon a no resuscitation clause and also no ventilation or artificial feeding of any kind.
Craig wanted to have his service of remembrance in a woodland chapel near where we lived followed by cremation. Once he had made his decision, we then spent several weeks organising his service. (It took several weeks because we could only do a bit at a time as we kept getting upset). It was hard going very emotional but Craig wanted it all sorted out before he died. He didn’t want me to have to worry about it after he’d gone. So, we organised it all choosing songs he wanted and readings. He wanted a coffin made out of pallets, which his friend made for him. He wanted everyone to carry a red rose and lay it on his coffin, which we all did, it was very moving. Quite where that idea came from, I’m not sure. He asked me to speak at the service, which I promised to try to do. In the end I did manage it somehow without dissolving. I read the speech to him before he died so he knew what I was going to say.
I found it so much easier after his death not having the extra burden of trying to second guess what he would have wanted. I was having enough trouble just putting one-foot Infront of the other.
For us talking and organising those last few weeks made it slightly easier there were no difficult decisions or uncertainty whilst we were dealing with him being near the end.
Ultimately the choice is yours. I realise that some people find it a hard topic to discuss and would rather not, which is of course is fine too.
Author: Anita Newton