LIVING WITH DEMENTIA
Agnes Houston is a captivating and inspirational public speaker, says Joy Orpen, but she has been battling a brain disorder since 2006 — and now she helps others cope, too
When Agnes Houston, 65, gave a talk at the Royal Dublin Society (RDS), her large audience was so spellbound, you could have heard the scurryings of a very tiny mouse. Not bad for someone who, seven years ago, was diagnosed with dementia — a progressive brain disorder.
Agnes was attending the recent Fifth International Dementia Care Conference, organised by Sonas apc, a non-profit organisation, offering training for those caring for people with dementia.
She is an extremely articulate and energetic campaigner; a role she could never have foreseen for herself when she left school at 15 to work in an office. Later she joined the British Army and became a nurse. She was in Hong Kong as the Vietnam War was drawing to a close, and encountered many young American soldiers who had been physically and emotionally traumatised. “My experiences helped me with later strategies,” she says. “In the army, you make the best of what you've got.”
Soon after, Agnes met Alan, her future husband and, 40 years ago, they had their daughter, Donna.
Over the years, Agnes specialised in orthopaedic and intensive-care nursing, but in 2000 she became “disillusioned” with the system and opted to manage a chiropractor service instead. “I made the office run smoothly,” she says. “I was a great communicator and a problem solver.”
But in 2006 her bosses noticed Agnes was becoming confused and disjointed. “My speech was all mixed up and I started to point at things because I just couldn't find the words for those things.
“I was known for my razor-sharp memory, but one day I was teaching someone to use the X-ray machine, and the next minute I had forgotten how to use it myself, and now I had to ask that person to show me,” she says.
Agnes says that from the very beginning her army training helped her put strategies in place. “I was covering up when sometimes I didn't even know my name,” she admits.
She wrote reminders for herself and they were still being found in “weird places” two years after she left the practice. “Recently, I saw a note from that time. I used to write beautifully, but this writing was childish and dyslexic. Quite telling, really,” she says. “Writing notes was one thing; but you couldn't cover up the loss of words.”
Eventually, one of the chiropractors advised Agnes to be checked by her GP. Soon after she learned she had early onset — classed as under 65 years of age — early stage dementia. “I got angry when I got the diagnosis,” she says.
Ironically, she was then looking after her father, who was also living with dementia, so it was a bleak time for her. “There were no books and no helpful hints about the situation. I had a label for what was causing my problem, but they never really gave me any hope. I just thought, ‘This is it — downhill all the way’,” Agnes recalls. “I couldn't remember how to use a computer, I couldn't write and now I knew I couldn't work. I wasn't capable of getting on a bus and paying the fare, so I had to walk; and if it rained, I couldn't go anywhere. I went from being a very active person, to someone being ‘done for.'“
Fortunately, one of her dad's carers told her about the Scottish Dementia
One day I was teaching someone to use the X-ray machine, and the next minute I had forgotten how to use it myself
Working Group (SDWG) and took her to a meeting. “What an eye-opener!” she says. “There were people sitting around a table and I heard laughter. I couldn't figure out who had the diagnosis. Above all else, they gave me hope. I thought, ‘If they can do it, so can I,’ and so I took my first positive step since my diagnosis. They showed me by example. They encouraged me to speak up for myself even when I couldn't find a word. They helped me put things into perspective and they made me realise I still had stuff to give.”
Agnes immediately became a member of the SDWG and has hardly had time to catch her breath since then. She is on various committees advising government and health bodies on the best ways to assist those who are living with dementia. She says the diagnosis made her very sad for all the things she lost. But taking appropriate medication has helped enormously. “I take one pill a day. At the beginning, it was like getting new glasses — suddenly you can see, though you never realised you had been blind. It's still working for me,” she says.
However, Agnes does suffer from a range of common but little-known symptoms, including neurological vision impairment: “My eyes see, but my brain is slower to interpret these signals,” she explains. Consequently, she bumps into things and has to be wary crossing the street. She uses a white pointer stick, which she says is useful in “helping you understand you need to give me more time”.
She has an aversion to loud, everyday noises (hyperacusis) and experiences profound fatigue, which she says is caused by mental stresses and brain deterioration. So she takes power naps and sleeps for at least 12 hours a night.
Agnes, who is now separated, lives alone — quite happily. She loves her “wee knitting group” and does yoga and meditation — to keep her “spiritually nourished”; it also helps keep her constant anxiety at bay.
She says a set routine is crucial to her everyday existence. “I have to put everything in the same place,” she says. “Donna knows not to touch anything when she comes for visits from her home abroad.”
She says she always advises those caring for people with dementia to remember their “core” needs —
communication, orientation, repeated reassurance and emotional support.
Agnes's fire alarm is linked directly to the fire station. She has a community alert button and carries a card explaining her condition.
All these things help her maintain a happy, independent existence. Otherwise she is busy campaigning at her computer and at meetings all over the place, including Brussels.
“We're promoting early diagnosis; that way medication will do the maximum for you,” Agnes explains. “If you have good, positive diagnosis support you'll be maintained in society much longer. That prevents you from going into a nursing home and that saves the Government money.
“We also need an international network of positive groups of people with dementia, influencing and making changes for improvements in the care of people with the condition. The most important thing is that you allow people to travel their dementia journey in their own way.”
Agnes's stellar performance at the RDS conference is surely proof that she is taking her own, very sound advice.