Breaking down barriers

By Grace Mist

When June’s husband asked her one morning to start the lawn mower she thought he was joking. But the request marked the beginning of his dependency on June. Raemond was diagnosed with Alzheimer’s in 1986 and June became his sole carer for 10 years.

Raemond’s memory steadily deteriorated and his behaviour became more erratic. He forgot what to do when he got in the shower, how to dress himself. He would become agitated and distressed whenever June was not around. June remembers this period in her life as an "ordeal", full of sadness and despair.

She compares Alzheimer’s to "having a nightmare with your eyes open". She had very little support from agencies, and none from her family or friends. " Even when my husband was in the early stages, I could see he was missing men’s company, so I arranged for one of his friends to take him to a game of golf," she says.

"But the friend brought him back early saying that he didn’t want the responsibility. How do you explain to someone that they are not wanted anymore?"

June is resourceful, ready to improvise to save Raemond embarrassment and distress. Some mornings, June would take Raemond for a trip to Richmond, a short drive along a two lane highway from their home in the lower Blue Mountains. They would sit at a cafe and have a drink. On this particular hot day, June asked for two iced coffees served with a big dollop of cream. Raemond looked at the cream, then picked his knife and fork to eat it.

"No, no", June says, "use the straw." But Raemond had forgotten how to drink with a straw, and seeing his mounting distress she says, "Don’t drink it, the milk is sour. Let’s go home and we’ll make a cup of tea at home."
"Yes, yes," he answered really pleased.

In 1997 June became ill and had to place Raemond in The Ritz Nursing Home at Leura. She cried daily, even in her sleep. Whenever she visited him, she never saw any other relatives there. When visitors are not recognised by their loved ones they keep away believing they are not important or that they cannot make a difference. This keeps Alzheimer’s patients isolated from the public and away from the reality of family life.

June saw her relationship with her husband as a belonging, an unbreakable bond with each other that transgressed Alzheimer’s. She chose to talk to her husband in whispers, as good friends talk to each other when they are playful, and saw it as helpful and intimate. And one day Raemond surprised her when he said in a whisper "I wish I could be with you again," she recalls with sadness.

In one of her visits when June saw her husband folding and re folding a serviette it occurred to her that he was bored. June started to research ways of creating something practical to occupy her husband. She wanted to give him something new that he could keep as well.
After talking to nurses and occupational therapists she developed a "sensory cover" to slip over a hospital table. She attached zippers, buckles, pockets and soft wool tassels to it to provide texture, colour and noise.

"I laminated a photo of his mother and placed it in one of the pockets. He found it and had a loving conversation with her," June recalls.

Today June is an advocate of dignity for Alzheimer’s sufferers. She has created three types of Therapeutic Tactile Table Covers, and through her business she has helped many people from Indonesia, Canada, USA and Australia. She was awarded a Gold Medal at the 31st International Exhibition of Inventions held in Geneva earlier this year.

"It has been an interesting time, but I would be happier if I didn’t have to make another cover, if there wasn’t a need for them. If there was a cure, I would close up and I’d be happy. That’s what is all about."

How to care for Alzheimer’s patients

Caring for someone with Alzheimer’s is a challenging role, one that demands total acceptance of the illness. Carers feel powerless and frustrated when faced with its effects on their loved one. Creativity and an open mind are essential ingredients in a successful relationship.

The relationship between carer and patient needs to be based on unconditional esteem. Being affectionate, sincere and truthful ensures trust and emotional safety for the patient.
When faced with odd behaviours, it is important to try to understand the patient’s emotions and feelings behind them.

The environment needs to be safe and the small daily routines organised so that they are achievable. Focusing on good experiences rather than on results takes pressure from both the sufferer and the carer.

Carers need to look after themselves as well. Having someone to talk to about their experiences, getting outside help, and having time out is beneficial to recharge emotionally, gain perspective in a difficult situation, or simply to relax.

For more information on Alzheimer’s disease you can contact the Alzheimer’s Association on 9805 0100 or the Dementia Help Line on 1800 639 331.
(Source:www.dementia.com)

The 31st International Exhibition of Inventions, New Techniques and Products held in Geneva exhibited items from more than 40 countries.

Australian inventions were well represented and won four Gold Medals, three Silver Medals and the Batelle Research Institute Award, which recognises new technologies.