I’m Jen, I’m 37, I live in Lancashire and I’ve been a carer to my husband Dave since we met 13 years ago. He was diagnosed with PPMS in November 2004 and had several sessions of Mitoxantrone chemotherapy to try and halt his rapid progression, which thankfully it did for a couple of years. Sadly, his illness progressed again and in 2014, he became almost permanently confined to his bed. I was forced to quit work the following May as Dave needed 24-hour care as he was now unable to feed himself at all.
So, here we are! 2018 and things tick along OK mostly! Dave has bathroom time three times a week where he’s fully showered and I empty his bowels for him manually. His bladder issues are managed with a sheath catheter and bags, and thankfully he can still eat and drink via mouth. Which for a pizza fan is definitely a good thing! We manage completely by ourselves currently, no care package – we just don’t need it. I’m fit and healthy and can manage him with all the equipment we have. Our OT is wonderful and she got us a reclining shower chair, ceiling track hoist, powerchair, profiling bed and helped us get a modular Symmetrikit armchair for him. It makes him look like a Bond villain in some kind of throne which he loves!
That’s where the help mostly ends.
Being a full time carer for a loved one is physically and emotionally exhausting. If it was my paid job, I’d get holidays, days off and the ability to switch off at the end of the day. What we do as unpaid carers is 24/7, 365 days a year.
Dave hasn’t seen a neurologist for 10 years. He has access to a neuro-rehabilitation consultant for any symptom management but that's it. I’m under a carers organisation, but due to Dave’s severity, there’s not much practical help they can provide apart from a small grant I receive once a year to help pay for visiting my parents as they live in Devon. Our biggest issue is respite. We had a horrific experience with domestic carers earlier this year and we now know that he needs to go into a home for 24-hour care if I go away again for more than a night. The problem is finding a care home that will accommodate him as most only cater for the elderly, and also the issue that the places that will take him, don’t provide bookable care. This means that I’ll have a frantic ring around a couple of weeks before I visit my parents to try and get him a place. I also cannot book a holiday in advance. I’ve never been abroad and would love to go away with friends but how do I do this if I can’t book Dave in respite? My friends and I have already lost hundreds cancelling a trip away last year due to care falling through. The respite provision for those with advanced disability is horrendous where I live. The only option we have is to book him in a respite holiday centre in Southport at a cost of nearly £2,500, and that’s only on the proviso that a GP clears him to go a fortnight before. If not – we lose the money for the centre aswell as my holiday.
I’d love for more to be done to help those like myself who need to find suitable respite places for severely disabled adults. I’ve had to ring dozens of places for myself and not one person in the carers organisation, social services or NHS led care services have been able to help. We’re just left to try and find places ourselves and gamble on me getting a much needed break. Full time carers like myself save the community THOUSANDS per year in care costs – if I left tomorrow due to having had enough, they’d have to step in then, right? They need to stop carers getting to that point of dire frustration. Being a full time carer for a loved one is physically and emotionally exhausting. If it was my paid job, I’d get holidays, days off and the ability to switch off at the end of the day. What we do as unpaid carers is 24/7, 365 days a year.
WE HAVE RIGHTS TO A LIFE TOO.