Everyone is different not only in how the disease progresses but also in how they handle it. There is no right or wrong way of coping with a terminal diagnosis.
There are no set rules as to how you respond to suddenly being a carer to a loved one. I don’t think any of us really know how we would react until we are in the situation. I can only describe how I reacted and what I did but some of my 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 the loss of their mobility and independence and also the fact that the diagnosis holds a death sentence.
Whilst all the time 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’ve never had to do for anyone before, not to mention the physical demands of having to lift another person.
I made a decision early on that I would never allow 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, I think its natural sometimes to 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) but because of covid there was none.