Letters

‘Despite dementia symptoms, Annie is still with us, in her laugh … and when she smiles’

January 13, 2016

Forty-seven per cent of Canadians believe it’s not possible to live well with Alzheimer’s disease and other dementias. How about you? January is Alzheimer Awareness month and this year’s campaign theme is #StillHere. Although dementia is progressive and ultimately fatal, the symptoms and rate of progression vary from person to person. There is plenty of dementia care available so that people who have dementia can get the help and treatment they need within the comfort of their own home, but it is still an incurable illness that leaves them and the members of the family struggling for years. So how can you help someone living with dementia and his or her caregiver? First and foremost, become informed your local North Hastings office of the Alzheimer Society has lots of free information and Alzheimer staff are willing to spend time with you answering your questions. Second, become a dementia friend. A dementia friend is someone who learns about what it’s like to live with dementia and then turns that understanding into simple actions that can help people with dementia live well. It can be something as simple as showing some patience or spending time listening to music. Third, be a supporter. Make a donation, support a Walker or participate in your local Walk for Alzheimer’s.

During this month, a few caregivers in the North Hastings have agreed to share some of their thoughts on supporting a loved one who is dealing with Alzheimer’s disease.

Annie

“Are you dropping by tonight for a visit?” Magical words, an invitation to the home of our neighbours where we can bring my 88-year-old mother, Annie, to enjoy a kitchen party during the Christmas holidays. Here she will laugh, clap her hands mostly to the beat of the music, try to say something funny to make us laugh, count the four guitars and singers then tap her toes to a heartfelt rendition of Bud the Spud, a tribute to her P.E.I. roots. She will get up with us to dance, caught up by the joyous feelings, her eyes sparkling that radiant blue. Our neighbour with the golden heart sees my mother Annie for the person she is still, not the end-stage dementia that is her diagnosis.

To describe her now is not difficult, in some respects, bearing the classic symptoms of dementia. She does not know if it is day or night, has no yesterday or tomorrow and lives right now, always in the moment, which presents many challenges in caring for her, particularly when responsive behaviours occur. Despite the dementia symptoms, Annie is still with us, in her laugh, her enjoyment of walking or a car ride, when a please or thank you is softly spoken and when she smiles or dances to the music.

What she can physically do today she may not be able to do tomorrow but perhaps the next day as the world of dementia is ever changing, minute to minute, day to day and week to week. Choosing to see who a person is instead of what a disease displays is a shift of monumental proportions in our world where the common question is: why don’t you just put her in a home? It takes a different kind of understanding to see beyond a diagnosis so catastrophic as dementia to strive to maintain that important connection to the person inside, whether they remain at home or are in long-term care. The time you spend with your loved one can help to retain that connection through purposeful interaction, whether you are looking at pictures, doing a small puzzle together or telling a story. We have experienced a great retention of my mother’s personality despite her losses, supported through continuous stimulation and creating an environment at home where she is successful and can feel good about what she can still do. The Alzheimer’s Society provides a lending library, support groups, Music For Me program as well as other supports which are helpful to learn about this disease and is just a phone call away.

My mother’s story, our story, is only one of many, each with their own positive and challenging aspects related to dementia. We continue to live our lives with the intention to maintain a family environment in our home where my mother can prosper, enjoy a dance or two and laugh when she feels like it. We will always choose to see my mother, not the disease. The rewards of doing so will last a lifetime. Submitted by Katie Lobe

         

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