This is written from my own experience of living and caring for a loved one with MND/ALS.

Whilst sitting down to write this article I am in a quandary as to what topic to tackle next. In some respects, the order to me is logical but I’m mindful that you may be at different stages on your journey and might find another topic more useful. Having already discussed adapting your house, clothing, eating and drinking and the importance of looking after yourself, as well as your loved one, there are so many more areas still to cover.

In the end I have decided to stick with the order in which I had to deal with things because of the way Craig was affected by the illness.  As I’ve explained before Craigs hands and arms went first basically stopping him being able to do anything for himself or at least very little.

I found myself in a position of having to do all his personal care. Any of you who have been mothers or fathers probably didn’t find this very difficult but I haven’t been a mother and to be honest I was dreading it. In reality I just took it in my stride made easier because Craig didn’t make a fuss about it so neither did I.

 Helping his get dressed is one thing but to then have to take him to the toilet and wipe his bottom is quite another. I haven’t had children so haven’t had that experience of caring for someone else in that way.

You have to learn to adapt and take each set back as it comes and deal with it. This is when I think it’s so good to be able to talk to someone about the shift in your role. No longer a wife or husband but suddenly a full-time carer too. The lines can get blurred between the two and I think it so important, if you can, to keep them separate. We used to have date night and quiet time, where it was just about us as a couple, not the illness, when we talked about hopes and dreams even though they were never going to come true. That is before those discussions  turned to end of life and other serious issues when we could no longer pretend it wasn’t happening.

Talking to someone who has been through it who understands would be my advice. I did talk to friends occasionally but they couldn’t really comprehend what it was like. Other illnesses are not quite the same. Talking to someone who has lost a loved one to another terminal illness isn’t the same as you have to be there 24 /7 you can’t leave them alone.

Helping Craig with his personal care was one of those things that in truth I hadn’t thought about when he was diagnosed. As he deteriorated, I helped him to the toilet and he called when he was done, then I helped him sit on the toilet and go for a wee. We got a device that fitted on the front of the toilet that was designed to direct the flow into the basin. This had limited success. Instead, he folded some toilet paper and held it against his penis when he wee’d so that the urine ran down the paper and into the bowl. This worked well.

When he got to the point that I needed to clean him after going for a po I was more comfortable with helping him and we both took this in our stride. That surprised me as I’m not good with toilet discussions but i was to become much more used to it over the following months as I ended up having several discussions on this topic with the nurses.

We had a downstairs toilet which we had fitted with grab rails we we could use for some time until we reached the point that he needed lifting equipment to hold him up then the machine no longer fitted in the space.

When we started using lifting equipment, we also started using a bottle for Craig to urinate in. It had a tube that fitted over the penis and a long tube attached to a storage bottle so was great for using when we went out as well as at home. We also used it at night so that I didn’t have to get him out of bed. It didn’t need to be emptied straight away as the storage bottle at the end kept it enclosed so I could deal with it in the morning. This was also another reason why he just stayed in shorts  whilst at home (covered with a blanket) because it was quick and easy to use the bottle he didn’t need to get up to use it, he could use it whilst seated when standing up became more difficult.

This is definitely one of my top tips, the bottle was great, easy to use and portable. We never had to worry about whether we could find a toilet that was suitable. We found that not all disabled bathrooms were adequately designed for our needs. I know that some people in this situation, when going to the toilet becomes hard work, opted for a catheter. This is an individual choice. We considered it and it was offered as an option but for Craig it was an acknowledgment that the disease was winning and he didn’t want that so we explored other options and that’s how I came across the bottles we used. I’m not sure if I would have preferred that he had a catheter maybe it would have been easier for me I’m not sure but in the end, it was his choice and I had to adjust to whatever decision he made. I didn’t have a strong feeling on it either way.

Where possible we went upstairs to the toilet as that felt more normal. as the disease progressed and it became more difficult to get him up into his wheelchair and then upstairs then form the wheelchair to the toilet and vice versa, we then stated using the commode chair. He sometimes needed to go quickly and so this was faster than going upstairs. We still had accidents but we dealt with them when they occurred.  

Making decisions about their care should always be done jointly. Just because I didn’t have a strong opinion on something didn’t mean we didn’t discuss it. In the end though I always let him make the decision after all it was his body and ultimately his life. I always understood the decision he made I didn’t always agree with them especially around end of life care, but as long as he was happy with them.

 

Washing – using towel cape / wet room for bath chair / patting dry / warm towels were more comforting and helped drying process/ shower needed 2 one to hold whilst other washed/ delicate skin rubbing/ bed sores/friction burns.

Looking after his skin and delicate body.

Having the right equipment tailored to individual needs is so important in helping to be comfortable and avoid other complications. A good OT or nurse who monitors you closely is key to making sure changes can be made as they needed. You may not be aware yourself of alterations that can be made to ease discomfort.

Craig had a recliner chair that was specially made for his dimensions. It was designed to support him where he needed it. As his needs changed, we could re arrange packing within the chair to give additional support.  As his neck muscles weakened the head rest could be adjusted to help support it. This wasn’t perfect and we used rolled up towels as a neck support. You can get neck supports that blow up or have padding in which support the head and chin but we didn’t get on with these the rolled up towels worked better for us.

Because he sat a lot of the time, I had to monitor him closely for sores and redness caused by pressure on his bottom. He had different cushions to help with this. The cushions provided support, padding and were designed to allow air to circulate. I would also lift him or move him regularly just to give his bottom a rest.

Luckily he never suffered from bed sores form the constant sitting but he did get some patches for slipping down in the bed. He sat at night he didn’t lay flat because it made him cough so he did literally have no relief form the pressure on his bottom. They were like friction burns. A special dressing helped this by cushioning the sore and healing at the same time.

He did occasionally get sores under his arms on his side where his arms had sweated and then rubbed. Because he couldn’t move his arms himself they were constantly against his body. I felt so guilty when I discovered this because I felt I should have checked him more closely, but I didn’t even realise this was possible. I came to discover quite a lot about looking after an immobile person over the time I nursed Craig. I did however check closely after that and made sur he was positioned so there was a gap letting the air in.

His skin became very thin and delicate and he would cut and bruise easily. He had an old person’s skin. You had to be careful with washing and drying, patting rather than rubbing. You also had to make sure he was completely dry and not left damp as clothes then stuck and rubbed. 

He found smells really bothered him making him cough. This became more of a problem with time and people who visited had to be really careful with perfumed products. We asked people not to use anything or to use non perfumed products. I’m not sure this is a common problem but for Craig it was a big issue.

This comes back to everyone being different and you may recognise some of these issues or they may be things you need to be aware of or you may never need to worry about them, I think the more knowledge you have the more prepared you will be.