"Your needs start to diminish in importance. Your calendar has appointments, but not for you"

“I became a carer by stealth. As Mum and Dad got older, their fibs to the doctor became more significant, so I started to accompany them to GP appointments. Dad was happy to not have to drive as much, and that’s how it began.

We got Powers of Attorney in place, and for a while, everything was fine. Then Dad was diagnosed with vascular dementia, and a couple of years later, so was Mum. I took strength from advice the GP gave me – “You don’t have to be the provider of care, but you do have to be the facilitator of care”. Meaning, prepare to knock on doors, call, research, call again, know your rights and keep asking for support. “Facilitator”. I liked that title. But even that took a toll and takes time. I was made redundant, and to cut a long story short…et voila, an unpaid carer.

Your needs start to diminish in importance. Your calendar has appointments, but not for you. You stop making arrangements with friends, because you cancel so often, it’s just another source of stress. Your home becomes a place of work for district nurses and carers, who would walk into our home without knocking. I even made a sign, stuck it to the front door – “Please ring bell before coming in”, but it would be ignored.

I’ve seen acute kindness, and thoughtless cruelty. Now I have an intolerance of time wasters and meanness, but sometimes I’m laid back to the point of numbness. Thankfully I have good support from friends, my brother and his wife. My nephew and nieces are a joy. My dog is my sanity.

I’ve always been pretty resilient, but it’s been a tough few years. Mum died a few weeks ago, my sister and my dad have died, too.  During this time, I became a trustee of Dementia Friendly Prestwick, because I realised not everyone has someone to champion their needs.”

 

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