A new project is giving voice to people with dementia and their carers

Love letters

A new project is giving voice to people with dementia and their carers

by Sep 25, 2013

Tommy Whitelaw-JG

Over the last two years, Tommy Whitelaw has received hundreds of love letters. Wives write pouring out their feelings for their husbands. Sons tell of their devotion to their mothers. Childhood rivalries are long forgotten as siblings affectionately put pen to paper.

Two years ago, Whitelaw began sharing his own love story. His experiences as a full-time carer to his mum, Joan, who had developed vascular dementia, had opened his eyes to the crushing blow the condition deals some families. Seeking comfort and support, he launched a campaign from his bedroom asking others to write to him about their experiences. He pledged to take their letters to the Scottish Parliament and pounded the streets of Scotland to collect many in person.

“Every letter I’ve received has the word love in it. Every letter. But in all those letters love is matched with loneliness and isolation – the exact same things that I was feeling.”

Many of the letters end with a declaration that the author just wanted to write to someone who wouldn’t judge them – a sentiment he was also all-too-familiar with.

“I felt judged at all times caring for my mum. And sometimes when you feel judged it stops you asking for help. When you feel judged, you think, ‘Well, I will try to do this myself.’ And you can’t do it yourself.”

Whitelaw, who made a short-film with Alzheimer Scotland about his ‘Tommy on Tour’ campaign, has been shortlisted for a Scottish Health Award for his efforts. He passionately believes that no one should face dementia alone and hopes that speaking out will help others to realise they don’t have to.

He is a natural storyteller and his tale of a son’s unwavering love for his mother starts with a visit home after an extended period of working abroad.

“I had a wee argument with my girlfriend and like all good Scottish boys, I ran straight back to my mummy for her to tell me I was still a good boy! But when I came back to visit my mum, I saw a lot of changes.”

He had already planned to take three months off but then those three months turned into six, and then a year, as he fought to get his mum formally diagnosed while still not understanding where they were or what lay ahead. At the end of that first year, he made the decision to remain as his mum’s full-time carer. By their third – by which point he says dementia was “doing everything in its power to affect my mum’s greatness” – he admits he fell apart.

“The two of us were at home lost. I was absolutely on my knees. I was at a crisis point just trying to get through each day in the hope that if we made it through today then we might make it through tomorrow.”

The turning point came one day when a district nurse arrived to tend to some pressure sores his mum had developed.

“She knocked on the door and I shouted down the stairs, ‘I’m bathing my mum, who is it?’ She said, ‘It’s the district nurse.’ So I said, ‘Can you please come up?’ But as she walked up the stairs, I started crying and just couldn’t stop because I didn’t know if I was doing it right, I didn’t know how I felt about doing it.

“She came in and she helped me get my mum out of the bath and showed me how to take care of my mum as a woman; how to protect her dignity, how to dry her. Then she sat down and she put her arm around me. And she was the first person to say to me, ‘You’re doing all right.’”

It was as simple as one professional taking the time to listen and respond. But it was a pivotal moment in his carer journey, he explains.

“Nobody had ever really asked me how I was doing. And I have to say the difference between her walking up those stairs and walking back down them was incredible.

“When she walked up them I was thinking, ‘Will I be able to continue to give my mum her personal care?’ And when she walked back down those stairs I thought, ‘Absolutely, I can.”

Whitelaw cared for his mum full time for six years before she finally passed away in September last year. He feels her loss acutely and describes her as “the most magnificent, kind person I’ve ever known”. But while he feels lucky to have been her son, knowing how wonderful she was made it all the more difficult to see her diminished by the condition that sought to dominate her final chapter.

“My mum was viewed as just a person with dementia. Everything she was before didn’t matter. And what happens when everything you did before doesn’t matter? Is everything you can do next not going to matter? And that is the heart of this.”

Whitelaw continues to visit hospitals across Scotland to raise awareness amongst staff about the importance of supporting carers in contributing to delivering person-centred care.

“When my mum had dementia, nobody really asked all that much about her. How can you really help someone if you don’t know what makes them smile? If you don’t know what makes them sad, or what makes them feel safe, or fearful, angry, secure. Unless you ask those things and understand that about someone you can’t help them. And that’s where we fail; when the time is not taken to understand those things about people.”

Now, as project officer for the Dementia Carer Voices project, Whitelaw continues to engage with carers and raise awareness. In doing so, he is joined by former MSP, Irene Oldfather, who is now programme director for the project and the dementia side of the Life Changes Trust – a landmark £50m independent trust that was established by the Big Lottery Fund with the aim of transforming both the lives of young people leaving care and those of people with dementia and their carers in Scotland over the next ten years.

The Dementia Carer Voices project, which is run by the Health and Social Care Alliance, recognises the importance of the carer’s voice in informing future service provision and in empowering carers themselves.

“The project seeks to narrow the gap between policy and practice by raising awareness and promoting the Carer Voice and Carer rights,” Oldfather explains.

“Tommy’s work reaches out to people and touches their hearts. For those who have been through the experience, it resonates and they realise that they are not alone. And for those who haven’t, it touches a chord and opens their eyes to the emotional rollercoaster of caring for someone with dementia, which unless you have experienced it, almost defies description.”

As convener of the Cross-Party Group on Alzheimer’s during the last parliamentary session, Oldfather led the development of a Charter of Rights for dementia in co-operation with Alzheimer Scotland and the Scottish Human Rights Commission. She says Scotland now has a “highly developed” dementia policy framework, which was further strengthened when the charter was embedded into Scotland’s first national dementia strategy.

“Dementia has never received more public attention or media coverage than it does now,” agrees Alzheimer Scotland chief executive Henry Simmons.

However, he adds that the “insidious forms of stigma and discrimination” that continue to surround the illness means Scotland still struggles to find the words to talk about dementia in everyday life.

“This leaves people living with the illness in the painful position of frequently becoming isolated within their homes and communities, simply because those around them don’t feel comfortable talking to them or trying to understand their experience. Carers often struggle to balance children, employment and supporting their partners with caring for older family members – we need to help them in these difficult situations.”

Dementia was listed as a national priority in Scotland in 2007 and Simmons says a “great deal” has been achieved in the intervening period.

“We are now in the early stages of Scotland’s second national dementia strategy, the Promoting Excellence training network is in the process of equipping our health and social care staff with a better understanding of dementia and the Standards of Care for Dementia in Scotland provide clear guidance on what people with dementia and their carers are entitled to with regards to care and support in Scotland. These policies are starting to filter through into the lives of people affected by the illness, particularly people who have recently been diagnosed, following the Scottish Government’s one year guarantee of post-diagnostic support from a named worker,” which he points out was based on Alzheimer Scotland’s Five Pillar model of Post-Diagnostic Support.

Additionally, he says the 10-point action plan for acute hospitals, as outlined in the current strategy, will help Scotland get to grips with the major issues surrounding the care of people with dementia in hospitals.

“However, there is a huge amount still to do. Despite the best of intentions and the changes already made, people are still experiencing significant problems in dementia care and support in Scotland. Our Dementia Helpline receives thousands of calls every year and the majority of these are from people in very difficult situations: struggling to get good quality care at home, carers not getting enough support, confusion over welfare rights and access to benefits and all too often people just feeling that they have no one to turn to, that no one understands,” he says.

“There are 86,000 people in Scotland with dementia, enough to fill Hampden Stadium one and a half times. This is a huge public health issue, one that affects almost every family in Scotland. Nobody experiencing this illness –either as a person with a diagnosis, a carer, a partner or a family member – should have to go through it alone.”

Whitelaw says he was asked recently if he would care for his mum all over again.

“I said, ‘Absolutely. But only better’.”

While he admits that it saddens him to say it, it also drives his determination to ensure others are better equipped than he was to face the challenges dementia poses.

“I didn’t know what rights I had as a carer. So I want to engage and let carers know that they absolutely have rights. We have promises from government. We have promises from local authorities and we have to empower people. If we empower people in the right manner then we avert crisis. And everybody we allow to reach a crisis, we’ve failed them.”

He can’t rewrite the ending of his mum’s story, no matter how much he might wish to. But by encouraging carers to share their experiences, he believes it will enable more to come forward and seek the support they need and deserve.

“At this time we have no cure for dementia,” he says.

“But loneliness and isolation and a lack of understanding, we can absolutely fix those things.”

http://www.holyrood.com/2013/09/love-letters/

2 Responses to A new project is giving voice to people with dementia and their carers

  1. Rhonda Nay says:

    This is fantastic

  2. This is a wonderful idea which I will aim to adopt in Bermuda with the members of my support group. I also looked after my mum for a number of years. She was 67 when she was diagnosed with Alzheimers. I would do it all again and better as well…

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