DEMENTIA: The cruel disease that will leave you bereaved twice

Sandra Perkins
Sandra Perkins
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Former Garstang Mayor Sandra Perkins will be taking part in the Blackpool Memory Walk to remember her husband Alan who she lost to dementia.

She tells AASMA DAY why she is a great advocate for people donating their brains for research after death so a cure can be found for the cruel disease.

When you lose a loved one to dementia, you actually end up grieving twice.”

Sandra Perkins, 72, who lives in Garstang and lost her husband Alan to Pick’s Disease, a form of dementia, says dementia is very painful and devastating for the family and friends of the person affected.

She explains: “You lose the person you have loved and live with for many years.

“When they get dementia, it is like a bereavement as you lose the person they were.

Sandra Perkins' husband Alan

Sandra Perkins' husband Alan

“I lived with Alan for more than 40 years so it was very hard losing him to dementia.

“But then when they die, you lose the physical person so you are bereaved all over again and are grieving twice.”

Sandra will be uniting against dementia and taking on Alzheimer’s Society’s Memory Walk in Blackpool on Sunday October 8 to remember Alan.

He was diagnosed with dementia at 60 and died at the age of 72. Sandra was Alan’s carer for eight years before he went into a care home full time when he was in the advanced stages of the illness. Caring for Alan inspired Sandra to raise awareness of dementia not only by setting up her own dementia café in Garstang but by signing up for Alzheimer’s Society’s Blackpool Memory Walk.

But then when they die, you lose the physical person so you are bereaved all over again and are grieving twice.

Sandra, who was Mayor of Garstang in 2011/12, says: “When Alan went into care I needed to do something to make the time without him more pleasurable. I was co-opted on to the Town Council and eventually became Mayor. Alan died, and during my year as Garstang’s first citizen, I raised £3,000 for Dementia Research and £1,000 for a teenage respite facility. One of the events was having my head shaved which was quite traumatic for a 68-year-old. It was then I decided that I would try to start a Memory Cafe as a lasting memorial to Alan.”

Sandra is also a Dementia Friends Champion and promotes Join Dementia Research, having donated Alan’s brain and spinal cord for research.

Sandra feels very strongly about people donating their brains for research and says many don’t realise your brain is not automatically donated if you sign up as an organ donor and you need to make special arrangements to donate to a brain bank.

Sandra explains: “I think it is important that brains are donated for research as, without research, we are not going to find a cure. I have actually signed up to donate my brain, too, when I go as research needs to be done on healthy brains as well as those with dementia so they can be compared and the differences can be looked at.”

Age is no barrier to Sandra, who has kept herself active since losing Alan.

Sandra says: “I am 72 and will be another year older the week after the Memory Walk. However it’s the old story, I don’t feel my age as I am a great believer that age is only a number.”

Around 16,280 people are living with dementia in Lancashire.

Deborah Parker, Alzheimer’s Society operations manager for Lancashire and Cumbria, says: “Dementia is set to be the 21st century’s biggest killer. We are calling on family, friends – and furry four-legged supporters – to unite against dementia this autumn. Dementia devastates lives. Walk with us at Memory Walk and dementia won’t win. Every pound raised will help Alzheimer’s Society provide information and support, improve care, fund research and create lasting change for people affected by dementia.

“Alzheimer’s Society is urgently calling on people to register now at: www.memorywalk.org.uk and unite against dementia.”

• Sandra’s dementia café is held twice monthly at Garstang Library one morning and one afternoon session. They have craft sessions, speakers, reminiscence sessions and swap experiences. For more information about attending the coffee morning, contact: 01995 471236 or 07768 062349.