From a Carers point of view: Eating and Drinking

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

As with a lot of aspects of this disease everyone’s symptoms progress at different rates and people’s ability to eat and drink varies quite considerably.  In our case Craig was able to swallow and still eat and drink until the end, although we had to make modifications to allow him to do that.

In the early days the changes we made were related to the fact he lost strength in his hands and arms first and quite quickly.

Craig was a very independent person and wanted to be able to carry on as normal for as long as possible. Although we hadn’t officially had the diagnosis, we were well aware that he was deteriorating and needed to make some adjustments to allow him to function on his own, without me constantly worrying about him. As I was still working, I needed to think ahead to things he might need during the day. Some of the things I did were minor in the grand scheme of things but did allow him to be able to look after himself in my absence.

Things like I put the tea bags or coffee container (with the lid partly open) on the counter top along with a mug so he didn’t have to reach up into the cupboard. I moved things he would need to the top shelf of the fridge. I put milk in a small container that he could pour without having to take a lid off, but one that didn’t spill or break in case he dropped it. I bought a lightweight mug that was insulated so it didn’t burn him when he made the tea but also kept it warm longer.

We bought a one cup kettle as it was lighter and he could manage it for a while, then we moved to a kettle that you filled from the side which meant he didn’t have to lift the whole kettle.

I put his medication in a small dish each morning, as he couldn’t get the pill box open to get them out. A lot of the things I did were small but it made it easier for Craig and stopped him getting frustrated and being constantly reminded he couldn’t do things any more.

 I’d just like to point out that Craig was a house husband so usually he would look after the house and anything related to it, but with the diseases progression he was increasing unable to do that and I had to quietly step back into that role.

There are several useful gadgets you can get to help with opening jars and cans, easy open lids etc It is definitely worth googling what aids are available as you never know you may find just the thing you need.

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