This is written from my own experience of living and caring for a loved one with MND/ALS.
This topic can be a delicate one to discuss and I have to admit I found it hard to begin with, but after having to do all Craig’s personal care for over a year, by the end of it discussing his bowel movements was a normal conversation, not with his friends I might add.
As I’ve explained before, Craigs hands and arms went first, stopping him being able to do anything for himself or at least very little.
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.
Helping Craig with his personal care was one of those things that in truth I hadn’t thought about when he was diagnosed. Helping him get dressed or feed himself is one thing but to then have to take him to the toilet is quite another. In reality we just took it in our stride, made easier because Craig didn’t make a fuss about it, so neither did I.
As he deteriorated, and helping him get to the toilet wasn’t enough, we started looking around for things to allow him to have independence for longer. We got a device that fitted on the front of the toilet that was designed to direct the urine flow into the basin. This had limited success. Instead, he folded layers of toilet paper and held it against his penis when he urinated, so that the urine ran down the paper and into the bowl. This worked well.
We had a downstairs toilet which we fitted with grab rails. We were able to use this for some time until we reached the point that he needed lifting equipment to hold him up, so that I could clean him, 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 connecting 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 was enclosed, so I could deal with it in the morning. This was also another reason why he just wore shorts whilst at home, 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.
There are a variety of bottles available for urinating so worth researching. The usual bed bottle, one that you have in a hospital, we found difficult to use, whilst the one we had was easy and didn’t lead to many accidents. It wasn’t fool proof but it generally worked well.
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 from the wheelchair to the toilet and vice versa, we then started 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.
Washing and showering became more difficult as time went on and he was very reluctant to have showers towards the end because it was so tiring. He didn’t like getting cold and he found the move from the shower to the bedroom afterwards uncomfortable. Having warm towels helped, I used to keep them on the radiator and then wrap him in them when he came out of the shower. You had to be careful when drying him, patting rather than rubbing. You also had to make sure he was completely dry and not left damp, as clothes then stuck and rubbed. His skin became very thin and delicate and he would cut and bruise easily.
This is where having good help is crucial, carers who understand the need to be careful and to support him whilst showering.
He also became very sensitive to smells, so all the washing products were fragrance free and gentle. We used ‘simple’ products because of this, as well as baby cleaning products. His skin also became extremely dry and flaky, which then irritated and was itchy, so we used Aveeno cream which was very gentle. We tried other products but found this was the best for him. I know it is supposed to be good for eczema. We also used a dandruff shampoo that was for dry skin, as this was gentle. We tried several other products before landing on these ones. As with lots of things, its trial and error finding something that works for you.
Craig would never let anyone else shower, wash or take him to the toilet, which I fully understood. It wasn’t just the privacy element of it but the fact I knew what to look out for, how to hold him and make sure he was comfortable. I also preferred it, as I knew he was cleaned properly. I couldn’t do it on my own at the end but I always did it with the other carers.
Keeping them clean and dry is so important to make sure that there are no other problems because of this. Also checking their skin carefully to make sure there are no friction or pressure sores. There is a lot to remember and consider when caring for someone else. I hope some of my tips will be useful and perhaps save you time having to experiment with different products.
Author: Anita Newton