The Cleaver

A bit of writing about being neurodivergent, disabled, ethnic and a widow in Wales.

Kate Cleaver

I know spring is here because of the month, but really, I haven’t noticed it in the weather. It appears to be cold. Appears because this year my sense of time and expectations are completely skewed due to Roland dying.

I know it is April but, in many ways, I haven’t really left Boxing Day and cradling my husband as he took his last breath.

Saying that, I am getting there, I am putting one foot in front of the other. My dog, Pads, is helping.

Don’t think that grief is something you can see as a linear thing. It is a bit like time, because we live it chronologically does not mean it is.

Same with grief. Some days you laugh, others you cry and other days you have all emotions in one day.

Laughter

I am getting to the point where I can remember Roland with laughter and even talk about him without crying. Of course, this whole journey has been made a mite harder by being disabled and needing care.

Roland was my full-time carer. He looked after me when things got too painful and everyday did chores that eased my life.

It is the small stuff that is tricky. Every drink I must get, everything I eat I must organise and any housework I must sort myself.

He isn’t there with a smile on his face reaching for a mop or getting me a drink. I must do it all.

Pain

A chronic illness means it doesn’t go away. You can have flares and subsidence but essentially you must live with a level of pain.

The problem is that the norm Roland and I had found has simply vanished overnight. So, the balance I had is gone. The result has been a stay on hospital, 2 units of blood and my mobility vastly reduced.

Luckily my dog is extremely understanding and is happy to simply be with me rather than demanding long walks.

In a reality that has a fully funded social service, I should have had an assessment and had a carer in place less than eight weeks after Roland died. The reality is our social services are stretched to almost breaking point, so I am in a waiting list.

Any care I get I must pay for because there isn’t anyone that can do a needs assessment. So, that is what I have had to budget for.

Not only am I looking at a drop in income from Roland’s death but also a drain from having to pay for people to care for me, so I don’t become so sick I end up in hospital again.

I’m able to negotiate all of this but can you imagine what it must be like for people who can’t, who have no option but to live in a house that is deteriorating because they can’t physically stop it.

I can tell you that it is exhausting to try to keep up and try to stop it.

Family

This isn’t a pity party though. I have family and friends around me but none who can become unpaid carers, and with all the issues in the news I don’t think I would want to have an unpaid carer that was working as well.

The prospect of them having to pay back money when the amount you get is so tiny, is simply ridiculous. No, the only option for me was to get a carer in from a company.

There are a few ways to do this but talking to social services I found a company that works both with them and privately. This means that when I finally get the needs assessment, I will be able to transfer over seamlessly.

In the meantime, I will budget for a few hours so that I can keep my head above water, and not drown in mess and uncompleted tasks.

I’ll be able to look after myself a little better because I’ll have more energy to think about how to plan meals and have standbys for when I can’t stand very well.

Inaccessible

On top of that there is the fact the house needs the renovation completing. The problem is that now I have no energy to sort it.

With the carer in place then getting to the shop for plasterers and sofas and people to finish the kitchen won’t be so much of an inaccessible mountain.

And maybe, just maybe, if I don’t have all my energy going into simply surviving, I can finally start to draw and write. There may even be another book, or short story, or anything that is creative.

Silver lining

And yes, my dog is doing fine. He is wonderful and always at my side. He makes the hardest days a little better and keeps me moving despite the fact it hurts to take even a small step.

Every day I smile at his antics. Pads is making sure that despite the grief and the carers, or lack of, I am still in a mental place that lets me see that silver lining.

I can imagine the light at the end of the tunnel. That I can do this, even if it one of the hardest journeys I have ever taken.

Next month I may even have photos of newly painted walls and completed kitchens, you never know.

Until then though, next week is a huge change where I will finally get a little help. I can’t wait.

Read more from Kate Cleaver here.