This is written from my own experience of living and caring for a loved one with MND/ALS.
Receiving the ALS diagnosis turns your world upside down and is quite enough to cope with, without having to worry about money as well.
Craig and I had the added problem of the covid pandemic. The country went into lockdown a week after he was diagnosed, I had to leave my job as a teacher, because Craig was classed as vulnerable. I walked out of my job after 30 years as if it was just ordinary day, no good bye speech or celebration.
I didn’t resign at the beginning because several teachers were also at home being paid, so it didn’t really occur to me, after all it wasn’t exactly normal circumstances. This meant we had an income for the time being. Craig didn’t work any way because he was a house husband. He was an engineer by trade and also a fire fighter but he had given these up a few years before.
We were in a situation where we had to consider finances and for the first time in our lives think about asking the state for help. We had savings but realised we needed these to adapt the house. We looked into what help was available for day to day living and also to help finance the alterations that would be necessary.
There are lots of organisations out there who are willing to help, depending on the circumstances and your eligibility, it’s just a matter of researching them. If that’s daunting ask citizens advice or a similar agency or even your health professionals to advise you.
We were lucky as our Occupational Therapist was able to help us, as well as a link person that we had at the ALS unit at the hospital. They were both very good at directly us to the right places. They had a lot of experience with these things so we tapped into their knowledge. I quickly became uninhibited about talking about what we could and couldn’t afford. Craig and I were both of the mindset if you didn’t have the money, you didn’t have it, you saved until you could afford it, but this was different, we didn’t have this luxury.
I applied for carers allowance which was straight forward. We applied for a blue badge which came through without any issues. The blue badge is the badge that allows you to park in disabled bays or on the street and avoid penalty. The problem came when we applied for disability benefit called PIP, (personal independence provision). The form was extensive and time consuming, not really an issue in the grand scheme of things I know. However, what we didn’t do was get advice on how to fill the form in, which we should have done, because we were rejected.
It took several weeks for us to hear back and when we did, we couldn’t believe it, they were saying his needs weren’t bad enough. I mean can you imagine our reaction, we were upset, angry, confused, you name it. They clearly had no concept of what being diagnosed with ALS meant. We had then to go through a long appeals process. Being cynical I think they just rejected it first time so that they would save money, as they didn’t have to pay us for so many months.
Part of the problem was because of covid they couldn’t come and see us, to interview Craig, so they did it on the phone. Craig being Craig was very positive about what he could and couldn’t do and gave them the impression that he was more capable than he was. I remember saying to him why did you tell them you could dress yourself and feed yourself when you can’t. He said “well I can do some of it!” Which was true, he could just about put a t-shirt on over his head at that time, but that’s was all. He couldn’t do up buttons or laces. He could just about feed himself but he couldn’t make anything to eat by himself.
I learnt very quickly that you had to describe the worst day, not the best day, when trying to get help. Also of course, with Craig, he was only going to get worse, not better, which they just didn’t seem to understand. In the end I asked the occupational therapist, the doctor and the consultant to write accompanying letters and I also got help with filling in the form. I wished I’d done this at the beginning. It was all upset and stress I could have done without.
We also applied for grants to help with the building work but because we had savings, we weren’t eligible. I found this very frustrating, because if we used all our savings doing the adaptations then we would need help from the state, because we didn’t have any savings, it felt like a vicious circle. We did however get a grant from the local council to fit the ramp outside the front of the house, so that Craig could get in and out with his wheelchair.
In England you pay for your prescriptions. Craig was on several medications so this was becoming expensive. We contacted the doctor about getting help with this and he applied for us to get free prescriptions, which was a great help.
Some organisations like the MNDA do also offer grants for adaptations. Some will offer other financial help too, but by far your biggest outlay will be having the house adapted, which can be costly depending on how much needs to be done.
The MNDA and carers association did give me money to treat myself as a way of making up for there being no other real support available, because of covid. The idea was that I could go somewhere for the day, to get away and have some me time. Covid made this impossible and also, I would not have wanted or been able to leave Craig for any length of time.
My advice; ask your doctor, consultant, local citizens advice, your friends and family whatever and whoever you have available to you, to find out about support, whether that be financial or emotional. There is a lot out there if you know where to look. Without the added complication of covid there should be plenty of choice and you can see what best fits you and your loved one. Make use of what is on offer as you will find it frees up time which you can then spend with your loved one, which at the end of the day is the most important thing.
Author: Anita Newton