This is written from my own experience of living and caring for a loved one with MND/ALS.
How things have changed in the last five years, in England any way. When Craig was diagnosed, I would say that generally people didn’t know much about ALS and I would put myself in that camp. I didn’t really know what it meant and what the implication would be for us. I was sometimes mystified by others responses when I said he might have ALS, but on reflection it was clear that they knew what that diagnosis meant.
Several high-profile sports personalities have raised awareness of ALS in England. They have also raised a lot of money towards research and specialist care. Technically it should now be easier to get carers who appreciate the care needed for someone with ALS.
Having to look after someone with ALS has its own unique challenges which I think are hard for others to grasp if they don’t have experience of it. The speed at which the disease progresses is terrifying and its so unpredictable. You can’t generalise about the diseases progression as no two cases are the same.
I also fear that in England it’s a bit of a postcode lottery as to whether you get specialist care. We were lucky because our local hospital has a specialist MND/ALS unit so we were well looked after in many ways. Unfortunately, I have heard many stories of people suffering with ALS not getting the care they needed or the system being too slow to react to their ever-changing needs.
I’ve said many times about the part covid played in our journey but there are times when I think it worked in our favour. We didn’t have to wait to see professionals in our team they were readily available to us. The occupational therapist was able to visit and access Craigs needs and provide new equipment as required at short notice.
The problem we had was trying to find carers to help me when it became clear that managing Craig on my own was becoming more difficult. I was struggling to look after him and to keep on top of household chores. He was also becoming floppier and I couldn’t support his head and move him safely with the mechanical lift.
I contacted several agencies but no one had any availability. Lots of over seas carers had gone home, some had stopped working all together because of covid. I was on my own and starting to get very concerned about Craigs safety. In the end I contacted the occupational therapist who was able to find emergency carers to come in and help for a week.
She then managed to find some local carers who were prepared to take us on. We thought this was going to be a massive help, under the impression that perhaps I could then step back a little and do other jobs, whilst they looked after Craig. In reality this didn’t work.
They were more of a home help which meant they were more used to helping people get dressed, making sure they took their medicine, doing light cleaning or shopping. They were not used to looking after someone like Craig who needed more specialist care. In the end I still did all his personal care but they helped by holding his head whilst I moved him or washed him. It was a help in the mornings, getting him out of bed and getting him dressed. In the evening however because they came so earlier and Craig did not want to go to bed at 4pm I still had to put him to bed on my own.
We had other issues too with one of the carers wearing rings and having long nails, which they aren’t meant to do. She cut Craig once which was very upsetting. We then had to complain. Craig was very sensitive to smells and despite saying several times some of the carers arrived with strong perfume and we had to send them away again. We never had the same people regularly so you couldn’t build up a relationship with them.
Craig was very delicate and needed to be handled gently which they didn’t seem to understand which was another reason why I ended up doing most of the work myself. His skin was thin and bruised or tore easily, which meant that drying him after a shower needed to be done carefully.
We did eventually find specialist carers. The difference was astounding, they were so gentle with him, they massaged his arms and legs and listened very carefully when I explained how he liked things. Unfortunately, we only found these a week before he died.
It is so important to find the right carers for you, ones you trust to look after your loved one. If you are lucky enough to have family members who can help this may take some of the burden away. I found it hard to trust anyone else to look after Craig properly, so I was always with him even when we had good help.
When choosing carers try to get as much information as you can about them. Try to read reviews or speak to others who have used them if that is possible. You may even find an organisation who can recommend carers to you.
Author: Anita Newton