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My name is Kathy. I am relatively new to being an unpaid carer and it took me some time before I even would call myself such and come to terms with this new chapter of our lives. My hubby was diagnosed with primary progressive multiple sclerosis in 2019, aged just 51.

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.

Summer time in Britain… well it certainly doesn’t feel like it does it?

We have been agreed to for carers benefit, just in time for M’s last few pays to go down to half. And I do feel financially we are being looked after. After all the inward battles I have had over carer benefit and should I apply, when I should… etc. We bit the bullet together and two weeks later we were nicely surprised. We certainly didn’t think it would be that quick.

I am still waiting to see if another door will open for me. Relief work in its nature is inconsistent, and where I was promised work at the start, it isn’t every week. I cannot commit to 12 hour shifts, so for me six hour shifts in this line of work are a limit (as it is so full on). The problem they never explained is these shifts are limited because, like most care/support roles, they like to bleed as many hours out of a person they can. So more 12 hour shifts are available. I have done cover for part of a shift before. But it was only once.

Hmmm… anyone who has held a similar role will understand. I do like the work but as I said to my sister recently it is not where my passion lies. I have gone back to voluntary work as well, mentoring a survivor of DA and this is much closer to my heart. And at the start it is all by phone, so that is fine.

Everything has its time. I have stepped back from Julian House homeless hostel for a time, as I feel I need to follow my passion and I believe this is God given. So you ask what has this to do with being a carer? Everything. Managing time and making choices is key. I am not in my 70’s, or retirement age, I am not ready to be full time carer. It took me a long while to accept I am a carer in the first place.

The whole term can have negative connotations, and many carers become people who serve in the background, over-looked and even feel forgotten. I don’t believe that is the path chosen for me, certainly not yet. I care deeply about M. Everyone that sees us together notes this I feel, many are the comments we have had about our relationship. But I still believe there is more.

I hang on in hope for what may be around the corner, knowing so much is uncertain in our lives now. But I realise also, where the infusions are helping him, I need to use this time and be pro-active as much as I still can.

On a different note myself and my sisters are still waiting to hear what will be happening with my Dad. The saga continues with his leg and we are desperate to get him out of that house, but he is still there, despite there being continued problems with his leg. It is a continued concern in the background, while he goes further into debt.

I try to distance myself as much as I can because it would be easy to get sucked in by his situation and attitude. As soon as we know what is happening then the pressure will start again. But as it is it just feels like the same circle going round, until he agrees to move out and his leg is sorted once for all.

In the meantime I continue to support M up to his big meeting next week, which is playing on his mind. The final work meeting announcing severance. He will feel fragile after I have no doubt. He is still up and down with it all as he tries to accept what is happening. A later blog may follow. This journey is tough, make no bones.

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