My name is Kathy. My hubby was diagnosed with primary progressive multiple sclerosis in 2019, aged just 51. It took me some time before I even would call myself a carer and come to terms with this new chapter of our lives.
I started writing this blog all about my journey, with a hope that it not only helps me, but also others who may be able to relate, as carers present or past. Hopefully it will be a help on some level, or at least a comfort other people on a similar journey.
My blog is on my Facebook page which is called ‘My blog’ (username Katunpaidcarer) if you wish to take a look. But extracts are shared here too.
I last left off when M was about to finish, with his last meeting at work. It has been practically six weeks ago now and seems like yesterday in some ways.
At the time it all felt so final. And M struggled that he had been given severance initially, rather than medical retirement. He missed out on this by months, down to their policies where he worked. But soon he came to accept it as they have, all in all, looked after him.
To begin with the void seemed huge, not having the structure or routine of work. We had various talks about how he could manage his time and the way forward. I suggested voluntary work. But he needed to get there in his own time.
A good couple of weeks on he had a conversation with the MS centre, and they suggested volunteering in their charity shop. A week or so later he went to chat about this in the shop, and the following week he started there. He now volunteers most weeks on a Friday. But there is no pressure. He perches on a stall for the most part and enjoys the banter of customers coming in and out. It is working well.
The rest of the week he is still working out but in our world that I have called an upside down life, the weeks can vary from week to week. Certainly for him.
As for me I have continued doing support/care work, feeling all the more unsettled but keeping a look out for a job that pulls my heart strings and challenges and stretches me, and hopefully using my mind, as I have such a busy brain.
I had an interview not long ago which the door closed to. I had an interview today and I now await the outcome. Finding the right balance has not been easy. But I have come to the realisation that while I can, I should follow my heart, and what I believe God is calling me to.
I could never commit to full time again, I need to be there for M for at least some of the time and ideally the evenings and night time. This job is a daytime job, no shift work and no pressure to do evening shifts. I realise that I need energy left for him also, there has to be a balance.
Once I have trained and settled in, this job should allow best part of the afternoons and evenings… but I will wait and find out.
I am blessed to be in a good church family, who really care. And I am thankful for all prayers that have been prayed for and over me, and us of late.
A few weeks ago I had an awful rash break out on my body, the doctors seemed clueless TBH but I do think it was partly stress induced as it was while we were down in Devon visiting my father, which is stressful in itself.
My father’s house is now on the market! It finally happened but is quiet right now. My sisters and I have persuaded him he needs to move now that his leg coming off is 95% likely to happen. He is waiting for the final yes, and he says he has accepted it. But, and there is a ‘but’, he still doesn’t get what it will look like being in a wheelchair 24/7.
We are trying to steer him away from bungalows – they are too expensive, and the one I took him to see was totally unsuitable for wheelchairs and needs loads of work. Taking him to see two properties was exhausting! And he simply couldn’t seem to get just how it is going to be.
I could not even get the wheelchair through the bungalow’s front door. My dad got up and hobbled with his bad leg over the lip and through the narrow opening. My heart was sinking. And I felt quite distressed after the whole saga, and my dad raving over it. Because the reality is he will not be able to do all he thinks he will, and it has not sunk in. Afterward we took him to the pub, and I had to take time out in the toilet and have a small cry.
But … I am keeping on laying that burden aside – now I am home there is enough to think about here. My sisters and I are in contact of course. And all agree that my dad would be better being moved up country closer to both my sisters on a proper old people’s complex, which is accessible. It’s just convincing him, to make this move. That is the hard part.
He sees his anaesthetist this week. We wait to hear for the next step.
I am still wondering how it is October already and nearly the first anniversary of my mum’s death.