Nimisha and her family are trying to provide the best support they can for her dad, Sharad. However, their experience of the dementia care system has been a constant struggle. Here, Nimisha shares her experiences of navigating a broken system of care.
I don’t think dementia ever affects just one person. It affects everyone close to them too – their family, their friends. And my experience is that the care system hasn’t helped any of us. It’s actually made things more distressing – for my dad, Sharad, and for all of us who are trying to make dad’s life with Alzheimer’s as comfortable as possible.
We were warned about the fight we would face to get the support we need. But nothing prepared us for this reality.
We first began to notice dad was having problems with his memory in 2015. A memory test and a scan confirmed it was dementia.
My mum and I went on a dementia awareness course at that time, and we were told we would have to fight to get our voice heard and to get dad the right support. But nothing prepared us for how hard it would be.
We spoke to social services, and the third question they asked us was, ‘How much money do you have in your bank account?’ We were told if we had more than a certain amount, we wouldn’t get any support, and the tone was just so cold.
We were a family facing up to dementia for the first time. We needed compassion, empathy and guidance.
We were spoken to in a way that made us feel it was wrong to ask for support and information. It was like dialogue was being shut down, not opened up.
I spoke to social services again on the phone after that, and was told dad needed an assessment for his needs to be worked out. But then there was silence. No follow-up letter. No phone call. Nothing.
I called back to find out what was happening and was treated like I was an inconvenience. One person actually had the nerve to say to me, ‘What’s the emergency?’
It might not have felt like an emergency to them, but my dad needed help – and I needed support to get that help. But instead, the process just got more and more painful.
At the moment my mum is my dad’s main carer, but we know that can’t last forever. We’re resigned to having to pay for his care privately.
I definitely feel there is discrimination against dementia in the healthcare system, compared with other conditions. It’s so hard to get support.
When I was young, dad was energetic and vivacious. He was always ready to swoop in with a huge cuddle, providing us with endless love, support and sound advice, and encouraging us to be the best versions of ourselves.
All I want is to help him get the support he needs now to be the best version of himself, but it’s such a painful and difficult process.
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