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“There needs to be greater support for carers”: Denise’s story

My experience is I think what a lot of people experience: You ask for help and no-one will really help, they all answer ‘we will see what this specialist says’ or ‘what that specialist says’.

At first, when my husband was diagnosed with Parkinson’s and lost his job, he became very depressed. It took forever to get someone to listen, one and a half years in fact, before he received treatment with antidepressants – which he still takes.

The impact on myself and my mental health was enormous, because he didn’t do anything except drive me to work. One day I couldn’t take anymore and collapsed crying against the wall, and that made my husband realise it was too much for me.

After that, it got a little better but not a lot. Coping with my own disabilities and his Parkinson’s and depression kept me on my toes. I would doubt myself and wonder if I was doing the right thing (this by the way is still the same today).

I became a member of Swindon Carers Centre but could not attend a lot of things because I was working full-time. Things got on top of me. I had Chronic Obstructive Pulmonary Disease (COPD) and was also diagnosed with Peripheral Neuropathy. I had to cut my working hours to just the mornings, which meant I lost half of my wages.

I still couldn’t attend a lot of things at Swindon Carers Centre. Then a manger at work started to tell me I had to come back full-time. I was diagnosed with Inflammatory Bowel Disease (IBD) and with anxiety, but I was determined not to let this manager win. I was at home for three months, at which point I had to tell my head manager and HR what was happening at work. They were shocked, and I was able to keep my job but I went to another department for a while.

Nobody ever asked how I was feeling, although they would ask my husband how he was feeling (and he would always say he was fine). If I tried to explain things when they got too much for me, I was brushed away.

Four years ago, after a two-year fight to get care workers into our home, we finally received that help. I was taken into hospital, but I advised staff that I wasn’t going to stay because my husband could not be on his own.

A nurse advised me she was going to get things sorted and called a care company with the times they needed to be there. Everything was sorted until the day I came back home when the care stopped again. There was no time for me to recover, and I was back in hospital again after a couple of months.

This time I advised the nurse that I needed permanent paid-for care for my husband, because I could not cope. We finally had care workers coming in twice a day at the times they needed to come in.

Unfortunately, after a year, the care workers started coming in later and later. Instead of 8am, they started coming at 11am. When I questioned this, the office staff told me they were too busy to get there at 8am and morning calls could take up to 11am.

My husband needs to be washed, dressed and have his breakfast by 8am because of his medication, but I was told that they were too busy with other people coming out of hospital. You can understand why my anxiety levels went up. I could hardly sleep because of my anxiety and arthritis. Everything felt like a vicious circle.

My husband got diagnosed with dementia, which made my world collapse, but I couldn’t let him know. My sons tried to understand but were more worried about their dad than how I was coping. My mental health is still very fragile, but I can’t let anyone know because when I tell them why, they think I blame my husband.

I have had talks with social workers, but they don’t have a clear answer. They tell me that I am a strong person I will be ok, or they ask me if I would like antidepressants (which I don’t want).

After fighting so hard to get help for my husband and not getting the real support I need myself, I really think that there needs to be greater support for carers. Most of us don’t want to see loved ones go into care or a nursing home. But if we’re not well, we are no longer able to care, which can bring real feelings of guilt and regret.