State of Caring Survey - 2025

All about caring
21

I had a further example - today - of not quite understanding from a Neurologist both Graham and I have great respect for.

She suggested that Graham needs to get a ‘normal life’ back and he mentioned he used to like to travel so she focussed on saying we SHOULD try travelling. I gently pointed out the problems around taking wheelchair, walker, sticks, then a bale of pads, chair and bed pads, along with his ventilator and the bits needed for that as well as a pharmacy of meds.

Poor lady didn’t get it and said ‘get back on to Urology and get help from them’… Last time we spoke with them, we were passed to Bladder and Bowel Team who just said “three pads a day…”

My point is - it’s not UNWILLINGNESS to do things - it’s the sheer effort involved.in going away for one or two nights. This evening G had a massive flood and thankfully the pad on chair saved the sofa, but I have a bag full of urine soaked clothes. What do I do with those in a hotel?

If that happens during the day - my whole day changes from whatever I have planned. It’s simply not possible to plan a simple routine as we have to “expect the unexpected”. I am in awe of @Charlesh47 for getting a week away with Gill, Mike and Dave and surviving the planning, packing and travelling.

THAT gets overlooked all the time, so a NORMAL LIFE cannot exist for a Carer, which means we cannot ASSUME that work is an automatic option, no matter how much WE would like it. Just think I could escape to work and forget all the worries at home.

I’m sounding negative, I know, but…

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22

@Paola_Carers_UK
I can only echo Chris here. I chair 2 Book Clubs one having just had its 10th anniversary and am an avid reader. There was a part time job at the library - 6 hours on a Saturday but with the option to cover for staff holidays and sickness. I would have LOVED to have applied but dared not. Like Chris says, it is the sheer realities and unpredictability of life as a Carer that makes working a non viable option for many. I would also have loved to have done vol work because if my husband dies or goes into Care before I reach state pension age, I am going to whip through my private pension. So I would have loved to have done things to make my CV more viable. Ditto a computer course that a place in town runs. But being able to get out every Monday morning for 3 hours including travel time was not an option. I cannot even see a counsellor partially due to finances and partially because it is not easy to commit to 6 sessions at the same time same day of the week.

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