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This is Caring: Emily

Emily has cared for her husband Neil since she was 24. She talks about the challenges she’s faced as her husband’s health has deteriorated.

Being a younger carer can be isolating. I’ve been caring for my husband Neil, since I was 24. Most other carers I meet at our carers centre are over 60, they’re very friendly and helpful, but I find it harder to relate to them.

Emily i care 2

My husband, who has just turned 51, started feeling very ill around eleven years ago. He became too weak to walk to the local shop, which was so close you could see it from our house. The GP wasn’t sure what was wrong with him and when he was sent for further tests, he collapsed.

He was rushed to hospital and admitted. After a week in hospital the doctors suspected renal failure, which was confirmed by a specialist shortly after.

Neil was in hospital for quite a while and had to give up his job as a driver for a fruit and vegetable company. He made applications for PIP (Personal Independence Payment) and ESA (Employment and Support Allowance). Without Neil’s income, we fell behind with our rent payments and, unfortunately, we were evicted from our home. We were placed in a bed and breakfast and eventually we qualified for a one bedroom flat. It was
a very stressful time.

The housing trust made a referral on our behalf to social services and we were allocated a social worker and occupational therapist. We were awarded housing and council tax benefit and ESA and Neil was awarded PIP two months later. Up until this point I had continued working as a cashier at ASDA, however, when we started claiming ESA, it became clear that it would be better financially for me to leave my job and start claiming Carers Allowance.

I found the social worker friendly and helpful, however, we’d been on our own with no help or advice on how to manage the situation for six months. Although I had heard of social services I had no idea what they were, so it never crossed my mind to contact them. The social worker suggested that we employ my brother in law as Neil’s driver. She also got us an electronic bath chair that Neil could use to get in and out of the bath.

After a few months of living at the property, Neil’s health had declined and the one bedroom flat was no longer suitable. Neil couldn’t get in and out of the bath even with the chair. We had been given an NHS wheelchair for Neil, but the door frames were were too narrow for us to move it anywhere. I was also sleeping on the sofa when Neil wasn’t well. Our social worker helped us secure a two-bedroom bungalow, which is fully accessible and has a wet room. The next problem we faced was fighting the bedroom tax. We were initially turned down for Discretionary Housing Payment (DHP) to help with the bedroom tax. However, after contacting our local MP we have been awarded DHP. It’s been a difficult journey, but we’ve kept fighting.

Emily i care

Since then Neil’s health has declined even further, he was diagnosed with autonomic neuropathy, Barrett’s Oesophagus, and has suffered a couple of mini strokes. Dramatic problems with his blood pressure affected his sight and he’s now fully blind. He has dialysis in hospital three times a week, and is hoping to lose enough weight to be put on the transplant waiting list.

My caring role mainly involves giving Neil help when he asks for it, running errands, such as going to the shops for him, guiding him or pushing him in his wheelchair, and helping with his communication needs or filling out forms. Neil likes to be as independent as possible and most of the time he can do things like wash and dress himself unaided.

We have a Carecall alarm system in our house so that in an emergency Neil can get help via his pendant if he’s on his own. This gives me great reassurance, so that I can leave the house. I like attending a weekly photography group, and I sometimes go on day trips with the local Carers Centre and I’m taking driving lessons. It is important to me to have a life of my own, obviously Neil’s my first priority, but he says himself he doesn’t need a nanny.

I’m quite passionate about trying to improve things for carers and disabled people, so I like to attend local groups such as our local disability forum to try and give carers a voice. I will never forget how difficult those first six months were, everything changed we were thrust into a new world we knew nothing about.

Looking back on it all, it was quite stressful. I am determined to try to make sure no other new carer goes it alone and gets access to the help they need.

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