This is written from my own experience of living and caring for a loved one with MND/ALS.
On reflection and thinking back I am sometimes struck by the things that became important to us. Trying to maintain some semblance of a normal relationship was one of those things. Being able to have time out, time when we got lost in each other, was something we cherished. Being able to laugh together despite everything.
One of the other important things was sleeping together in the same room. I didn’t want to be apart from him not even for a night, I wanted to be able to see him, to smile at him and comfort him if he needed it. I didn’t want him on his own with his thoughts. I realise that this is very personal, as I often didn’t get much sleep because I was watching him, but for me, I needed to be there.
To begin with we were able to sleep in our own bedroom with some small adaptations to the bed. Side rails were fitted to stop him rolling out and to give him something to hold onto when getting in and out of bed. We also raised the bed up a bit, a small thing but it did make quite a lot of difference to how easy it was to get in and out. When he could no longer manage this, we were given a hospital bed. It was strange getting rid of our double bed as it marked a significant progression, but there was no other choice.
I bought a single bed which I built next to his hospital bed. There was enough room down the middle between the beds for him to walk down. But as his mobility decreased and I needed to help him walk from the wheelchair to the bed and then lift him, it became apparent this wasn’t going to work anymore. I couldn’t get the wheelchair close enough. We had to rethink.
We needed to move the hospital bed into the spare room that had the wet room attached. This made sense on lots of levels, firstly it meant taking him to the toilet at night would be easier. It also made the personal care issues like showering in the morning more straight forward. The room was bigger and his lifting equipment fitted in there better. Also, it was a straight line from the lift to the bedroom, we didn’t have to try and negotiate tight corners to get in and out of rooms. I had already destroyed skirting boards and door frames with bad driving. The problem with this room was that there wasn’t enough space for another bed.
My solution, because I wanted to still be in the same room as him to sleep, was if I say so myself ingenious. I asked Craigs friend to build be a bed attached to the wall, that I could fold up during the day when I got up and pull down when I was ready to go to sleep. It was completely out of the way of the lifting equipment and the hospital bed. I had to remove the mattress and covers each time I put it up but that wasn’t too much bother.
I could have used the baby monitor and slept next door but I didn’t want to, I wanted to be where he was, so I could see him. This is a personal choice; you may prefer to have just that little bit of time to yourself, to take stock, perhaps to let your emotions out and have some quiet time.
In the later part of the illness being with him in the same room was very useful, as I was up to him every half an hour or so making him comfortable. I could hear his distress and react to it immediately.
In the beginning Craig was able to use the controls on the hospital bed and raise or lower the bed himself, but as his hands became worse this was no longer possible. The enablement centre was excellent and came and made adjustments to the controls each time his circumstances changed so that he could use them for a little longer. He had a little movement in one finger so they gave him a touch pad which was attached to the covers, this was fine as long as it didn’t move because he couldn’t move his arm to reach it if it did. When this no longer worked they made a special glove that was attached to the control, again it worked for a while. In the end I had the bed controls as close to me as possible so that I could make adjustments when he needed them.
I wouldn’t have known any of this was possible if it hadn’t been for our Occupational Therapist monitoring every aspect of our lives and helping us to manage each new set back, often with technology or a different piece of equipment. Having a team around you who are aware of these changes in your circumstances is vital. I wouldn’t have mentioned half the things that had become difficult if she hadn’t asked about them, I would just have assumed we had to live with them, not realising what was available out there to make life easier. It’s always worth discussing every aspect of daily life with your professional team as you never know what is available until you ask.
At the beginning we hadn’t thought about the need for a hospital bed and how big it was or the need for lifting equipment, this just wasn’t on our radar. This is just another example of us learning as we went along and adapting to each new scenario. I wouldn’t say this was the best way to handle it but on the other hand we weren’t worrying about what was going to happen next because we had no idea where the disease was taking us. They do say ignorance is bliss!
Author: Anita Newton