A different take on dementia

Alice Ashwell shares insights on her mothers journey with dementia and her own learning from it.

Alice Ashwell, is a Marina da Gama resident, life coach, counsellor – and a woman with first-hand experience of a parent’s struggle with dementia.

She wants to help those caring for someone with dementia see the illness in a different way.

From her sun-soaked deck with the neighbour’s cat asleep at her feet, Alice talks of her own journey with her mother, who lived with dementia for 15 years.

“In the end, when she had lost all of her language other than two phrases, we were able to sit together and commune, in absolute silence. And the experience of love was something that – in her younger years and with all her stiff upper lip societal conditioning – we were never able to share before,” Alice says.

“The best advice I ever received about this process was that we have to accept that our elders are stepping into a world that is different from ours. For them, it is like buying a one-way ticket to another land. They will not be able to come to us. But, we can go to them. We can step out of our world of societal rules and constraints and linear time and reality as we know it and we can visit them, in theirs.”

These are not platitudes; these are the Lonely Planet guidelines for negotiating the unknown journey of a love one’s radically altered world. And a reminder that it’s new to them, too.

“Initially I thought I was helping by correcting Mom. She raised us strictly on the 10 commandments, and we were inculcated with truth as priority. So if she said it was July in the middle of January, I would correct her. Over time, however, I realised that the only thing I achieved by doing that, was upsetting her. Because in her world, in that moment, it was July.”

Alice says not all parts of the brain are equally affected by dementia. Poetry and music are doorways to intact and whole memories in many cases.

Two weeks before her mother died, the family gathered around her piano, and she gave her last recital.

Alice’s invitation to see the effects of dementia differently, or to see the unexpected gifts and joys it offers, is borne out in her workshops for carers and family members. Part counselling, part workshop, they help people find ways to cope.

“A good sense of humour is going to be essential down the line,” she says. “But, before that point, there are little things to consider which are going to make everyone’s lives easier.”

She uses the example of bath time, which can be a real trial for some elders. “It is worthwhile to remember that because a person’s rational or thinking mind has deteriorated, they are now far more emotionally attuned. They can read you probably better than you know yourself. And if you arrive agitated or angry, they don’t know why, and you will be perceived as a threat. Or worse,” she says softly, “They may know exactly why”

For many people who are at this age and facing dementia, nudity has been taboo their whole lives. Many husbands have not even seen their wives naked – after a lifetime together.

It is, Alice says, then entirely understandable for this generation to balk at being told to undress in front of carers they may not even remember or recognise. “Would you?” Alice asked.

What appears obstinate or obstructive behaviour is often sourced in fear or the person feeling threatened.

Alice says many people have asked her why she visited her mother, when dementia robs the person of the entirety of their memories, rendering their closest loved ones as absolute strangers.

“I am often told but she can’t remember you, why do you go?” Alice says. Her answer is: “I remember. That’s why. And this can be our gift to the sufferers of dementia. When they have lost everything and often everyone, in their time of greatest need, we can reflect back to them the essence of who they were.”

Alice believes that people living in retirement homes who have extra time on their hands can bridge the gap for care-givers by visiting people with dementia, as friends. She also teaches family members to create a book with their elder’s life story, with photos and suggestions of music to play when visiting them, so that carers or “friends” visiting have an idea of who the person was before dementia.

The rates of dementia are steadily increasing, Alice says, and she suspects that her mother’s generation was the last with proper provision made for lengthy frail-care expenses.

“Many to most middle-aged people today do not have the sort of medical cover or funds set aside for this. And yet our diet and lifestyles are pushing so many more of us towards this diagnosis,” she says.

She says literature abounds now about the deep-reaching effects of stress, and the typical high carbohydrate and sugar-laden diets.

Alice says her own choice of a vegetarian diet for many years was not, in retrospect, beneficial to her, personally. A fall off a chair broke her wrist in 22 places, and she was diagnosed with osteoporosis. She knows she is further at risk for dementia because of her mother’s diagnosis. “My mother’s diagnosis came during my own early middle life, at the time I was my busiest, and it took me a long time to accept the teaching that her dementia offered me. I learned to be in the now, which is what centuries of elders have urged us to be. I have learned how to manage my stress, how to regulate my own system, and to ensure I take time to walk in and immerse in nature.”

She says her whole life, her mother was wise counsel for her, a great intellectual partner to grapple ideas and philosophies with. And that in her last years when the only words she could speak were, “I love you” and “How beautiful” she was still teaching, still that wise counsel, from the depths of silence.

Alice says she watched her mother shed the rigidity of conditioning and reclaim the warm joy of moving from a “human doing”, back into a smiling, warmly contented, human being.

To find out more, contact Alice on www.facebook.com/DementiaConnectionsSA or email her at: alice@heartofnature.co.za She has a website: http://heartofnature.co.za