January 31ST last year i had the first article about dementia and my campaign ,i was reading it this morning as many things have changed ,BUT the heartbreak and isolation and need for help remains
so i thought i would share my story once more
ITS SUCH A CRUEL ILLNESS (RUSSEL LEADBETTER,HERALD JAN 31ST 2011)
It happened again just today. He has dug out some old photographs of his parents. Their marriage lasted 40 happy years, until Tommy senior’s death from cancer. He was the only boyfriend, the only husband, Joan ever had.
“I can remember why my mum loved my dad,” he says. “But my mum can’t remember the man she loved. It just brought it home to me again, how cruel this illness is.”
He can also remember how, when he was young, his mother would always be the first to help a neighbor in trouble. Now she is in trouble, and it is a burden Tommy, one of Scotland’s 660,000 carers, has shouldered largely alone.
Joan, 71, has vascular dementia, the most common form of dementia after Alzheimer’s disease. It is caused by problems stemming from the supply of blood to the brain. Some 72,500 Scots have some form of dementia.
These last three years have been long and exhausting for Whitelaw, 48. When it is just the two of them in their Glasgow home, he dare not leave for fear of what she might do. He recounts a dauntingly lengthy spell when he could not leave the house at night. “Sometimes, when I speak to her,” he says, “it is a shell I’m speaking to. But she is still my mum.”
There are also financial restrictions to being a full-time carer – he receives just £53.90 in carers’ allowance a week and £79 a fortnight in income support – “but you learn to get by.”
In June, he intends staging a walking tour of Scotland’s key cities, in order to highlight dementia and to reach out to other carers and invite them to tell their own stories.
Tours are in Whitelaw’s blood. Before he took a career break in 2007, he had travelled the world, working in merchandising for rock groups and artists.
He was once global merchandising manager for U2, a job that took him to scores of exotic locations. Other acts he has worked for include Madonna, Sting, Pink Floyd, George Michael, Barbra Streisand and the Spice Girls.
“I had been travelling the world non-stop for 20 years. An office job in London didn’t work out and I was told to take gardening leave. I was burnt out, to be honest. Like many Scotsmen before me, I decided to come home to my mum, to relax for five or six months then go on holiday.
“But I walked in to the biggest shock of my life. I walked back into turmoil, and I wasn’t prepared for it. My mum seemed to be lost in the big world. None of her bills had been paid for a long time. She wasn’t the same mum I had left all those years ago, and spoken to by phone from time to time.
“I put it down to old age – an easy thing for people to say. I realized that things weren’t right so I got a doctor involved, and she was taken into hospital and diagnosed with vascular dementia. My dad had cancer, and cancer has a starting point and a finishing point. In his case, he lasted nine months. But there is no finishing point with vascular dementia.
“Even then, at the outset, I thought I could stay at home and look after her, and maybe do the odd little tour. That was in 2007, and I have been her carer ever since.
“I did the typical thing: I felt I could look after my mum without any help. I went through a year of doing that, but in the end you know you have to accept help – though the people who help you need more help, funding and awareness-raising campaigns.”
He adds: “Until last October, I went 15 months without leaving my home at night, because I can’t leave my mum. If I judge her right, and get a sense how she is, I can leave the house for an hour to nip up to the shops.
“But after an hour her mind wanders, she becomes panicky. You sometimes need to take a deep breath on the doorstep; you don’t know what you’re walking back into. I find myself taking a lot of deep breaths these days.
“I admitted to my GP that I wasn’t looking after myself and had put on three stone. He said in order to look after someone, I had to look after myself, and he referred me to the Live Active scheme at BellaHouston Leisure Centre. I’ve been going there since, and I feel better mentally to deal with my mum.”
Carers in Whitelaw’s situation often struggle to find the right words to describe their journey. “To me,” he says, “it’s as if you are at a certain point on a staircase. At the top is where life used to be for someone. You stay at your level with the person you’re looking after, but you’re never going to go back up the way. You go down one step and you know you’ll never even return to the old one.
“That’s how this illness affects you. The more incapable and confused my mum becomes, the less she remembers, that is how it stays. It never gets any better. Just as you think you are getting the hang of it and adapting to the needs of caring, she moves down another step, and that is where she stays until she moves down another step.”
He has realised, he adds, that not even doctors completely understand dementia. “There is so much more research needed, more funding. I’ve read all the dementia handbooks, they give you a guideline and I am glad they are there – but they can’t tell you how to deal with somebody at three in the morning who is asking to go home and who is getting dressed five times a night. You recognise that dementia affects everyone differently.
“Now I have got my mum a couple of days’ daycare a week, at the Mallaig Road centre. Alzheimer Scotland helps me with befrienders. I have to thank them, my family GP, my local pharmacy and the staff at Elder Park clinic. Without them, it would be impossible to keep my mum at home.”
To coincide with an Alzheimer Scotland awareness week in June, Whitelaw plans to take a week’s respite care and walk between Scottish cities, starting in Glasgow and finishing in Edinburgh, all to raise awareness of dementia.
His old contacts in the rock business have offered to print special T shirts, and he hopes to be joined by volunteers along the way.
“I would like people who care for relatives with dementia to give me letters about themselves and their caring,” he says. “About the sacrifices they make, or even how rewarding they find caring. The idea is to hand all the letters to Msps at Holyrood, so they can read these real stories from real people, and maybe gives more thought and funding to dementia treatment.”
Alzheimer Scotland, www.alzscot.org. Call 0808 808 3000 for information and support. Tommy’s page is at www.alzscot.org/pages/tommyontour.htm. His Just Giving page is: www. Justgiving.com/Tommy-Whitelaw
£23bn cost but it’s the funding poor relation
Dementia costs £23 billion each year in care costs and lost productivity, according to Dementia 2010, a study for the Alzheimer’s Research Trust. This is more than cancer and heart disease combined – but the true social cost is incalculable, said Liberal Democrat MP Paul Burstow in a foreword to the report.
Some 55% of the cost of supporting sufferers comes from the pockets of unpaid carers like Tommy Whitelaw.
Author Sir Terry Pratchett OBE, patron of the trust, who was diagnosed in 2007, has described Alzheimer’s as a “dreadful, inhuman disease”.
Dementia directly afflicts 820,000 people in the UK, yet is the funding poor relation. For every pound spent on dementia research, £26 is spent on cancer research and £15 on heart-disease research.
The Alzheimer’s Research Trust’s chief executive, Rebecca Wood, referring to “hundreds of thousands of devastated lives”, said: “If we spend a more proportionate sum on dementia research, we could unleash the full potential of our scientists in their race for a cure. Spending millions now really can save us crippling multi-billion pound care bills.”
MUCH HAS CHANGED SINCE THEN ,BUT ONE THING HAS GROWN STRONGER MY DESIRE TO RAISE AWERNESS
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