This is written from my own experience of living and caring for a loved one with MND/ALS.
When you talk to anyone who has cared for someone with ALS you will find that no two stories are the same, everyone’s experiences are slightly different. Some of the things I say will resonate more with some people than others, but hopefully you can find something useful in what I have written.
There are no set rules as to how you should respond to suddenly becoming a carer to a loved one. I don’t think any of us really know how we will react until we are in that situation. I can only describe how I reacted and what I did, but some of our story was dictated by the circumstances we found ourselves in because of covid intervening in any plans we may have made.
As a carer it’s not just the physical support that you are giving but also the emotional support helping a loved one come to terms with not only the loss of their mobility and independence but also the fact that the diagnosis holds a death sentence.
Whilst all the time you are trying to cope with your own emotions around losing your loved one in the way you knew them, the change in dynamic to them being totally reliant on you, to realising there is no happy ending, to having to do all their personal care something you may never have had to do for anyone before, not to mention the physical demands of having to lift and manoeuvre another person. All these things are swimming around in your head whilst you are trying to support your loved one. It can be very overwhelming.
I made a decision early on that I would never allow him (in my case it was husband Craig) to see any frustrations or emotions, although that didn’t completely work out as we cried together often, sometimes over the loss of small things. I hid any irritation from him. Its only natural to get frustrated and irritable especially when you’re tired. It’s very full on, there is no rest bite, especially nearer the end. I think it’s normal to sometimes feel that everything’s one way and no one is looking or caring about you.
You have to allow others to help and take some of the burden, to ensure the time you have together is positive and quality time. There is no shame in asking for help or admitting you need it.
In my case this issue was mute as there was no help available. Covid made finding carers impossible, Craigs daughter lived too far away and didn’t drive. Craigs friends would have helped more, if the circumstances had been normal but they weren’t.
Normally there would have been a lot of support available for me as a carer through the doctors (carers support group) and MNDA (motor neurone disease association) as well as other charities but because of covid there was none.
If you are lucky enough to have a big family you can share the care and give yourself a break. Its important to talk about things with friends and family if you are the sort of person who needs to do this. I know some carers who feel that talking to their family makes it seem as if they are complaining or makes them look weak. They feel that they have to be strong for their family and support them. You have to remember that you can’t shoulder it all you have to share at some point. You have to look after yourself as well. If you would rather talk to someone else, so that you can remain strong in the eyes of your family, there are plenty of people available.
Looking after the mental health of your loved one is important but so is looking after your own mental health. You will be no help to them if you yourself are struggling. Finding time for yourself to do what you like to do whatever that may be is vital. I love to be in the garden so would potter around out there whilst Craig napped or I would go for a short walk or I would read. It doesn’t really matter what it is, just sometimes you need alone time to help you process what is going on. For me again covid stopped some avenues of escape because i was limited in where I went or who I saw. I found comfort in writing; I kept a journal that I’m just managing to read again three years after his death. Writing down what was happening helped me track his illness and also help me express how I was feeling. By writing it down it helped me process those feelings and made me feel better, almost as if now that they were written down they were dealt with. Sounds a bit odd but it worked for me, and is certainly worth a try.
It is worth googling what help is available in your area or asking your health professionals, who can give you guidance. There are usually group and individual meetings as well as on line support groups that you can access from all sorts of charities. My advice would be don’t cut off ties with groups who offer help just because at the beginning you feel you don’t need it. You may find as the disease progresses having someone there in your corner is reassuring, to talk to or offer advice. Also remember that these support groups are there after you’ve lost your loved one too, they don’t stop because they have died.
We are all different and some of us will accept more help than others but if you do want help and support it is out there for you, you don’t have to do it on your own. Sometimes just having someone to chat to who understands works wonders. Also remember doing something for you if even for a short time can be revitalising.
Author: Anita Newton