We were visiting my parents-in-law for a family meal when my mother-in-law said to my father-in-law, "Come on dear, it’s getting late, we’d better go home." My father-in-law quietly replied, "We are home love." This was the first sign my mother-in-law was experiencing memory loss and confusion. Over the next six years we watched her gradual decline from a vibrant, active woman to a debilitated, confused and helpless invalid. Alzheimer’s disease eventually claimed her life.
Over the past 21 years, I have observed family friends, Harold and Helen*, come face to face with Alzheimer's disease. Helen was diagnosed at the age of 57 and with no known cure, Harold has had to slowly watch the love of his life drift away.
Helen’s beautiful nature made the initial painful news that little bit easier as together they faced the future with strong faith in each other and their heavenly Father. Helen was aware her memory was fading and in the early stages was excellent in steering the conversation to Harold, who gave her the security and support she needed. She quickly became more and more dependent upon him.
Helen, like many sufferers of dementia, would have moments where she responded to old familiar music, even at times singing along or moving to the beat. And Harold, like so many carers, was determined to give his wife the utmost support that was humanly possible.
Harold wanted to make the most of every precious lucid moment by being as creative as he could in thinking of relevant activities they could enjoy together. It was clear at times that more than human hands were ministering to Helen.
Six years ago Harold had to make one of the hardest decisions of his life and pass the primary care of Helen over to the caring team at AdventCare. Over the years the disease has slowly but steadily progressed and Helen has deteriorated to the point where she is left with little more than the swallow reflex.
Helen’s non-responsive expression provokes mixed feelings. There is the significant reality that, short of a miracle, she will never speak again nor be able to give a hug, squeeze a hand or sneak a smile.
Regardless of her physical condition, it is still surreal to be in her presence. There are moments when Harold and the family shut their eyes and enjoy the memories Helen worked so hard to create.
Most grandmothers are adored by their grandchildren and Helen is no different. Even though there is no response from her now, the feeling of being in her presence evokes a multitude of happy memories of when she could tell her grandchildren how special each and every one of them was. Helen had a unique gift of making every child feel like they were her favourite.
Helen recently celebrated her 78th birthday amongst family and friends. Her children and grandchildren came from near and far to celebrate and share the special day. The beautiful, loving, caring wife, mother, grandmother and friend could no longer communicate with them, but she is still, and always will be, Helen.
Harold encourages anyone faced with a similar situation to be open with each other and plan for the future. Like many couples with friends, some of whom are now being diagnosed with Alzheimer's, there is the inevitable variety of responses from denial to education and acceptance.
In my role as chaplain I believe a person living with Alzheimer’s disease is still capable of receiving love and kindness and a sense of wellbeing from the presence of others. I often invite Jesus into their room by reading Scripture out loud, praying and playing or singing uplifting songs of praise to God.
As we recognise World Alzheimer’s Day—September 21—may we all be reminded of this disease and openly and lovingly support those with dementia and their carers. As a community we face increasing challenges to keep up with the number of cases being diagnosed every day.
* Names have been changed for privacy.
Ten tips toward a dementia-friendly church/community
- Trust in God—draw strength from prayer.
- Enjoy the time you have together both individually and through church fellowship.
- Learn to live in the Alzheimer’s world—don’t argue, avoid negative non-verbal cues, e.g. sighing, rolling of eyes.
- Be responsive to lucid moments, allowing him/her to remain in control for as long as possible.
- Remember they may have years of experience and words of wisdom to share even if they can’t remember names of family and friends.
- Encourage communication about the past even if the details change from time to time.
- Remember that exercise and laughter benefit mind, body and soul.
- Don’t avoid opportunities to interact with persons with dementia and their carers.
- Access and accept support from church members, support groups and, if appropriate, professional organisations such as Alzheimer’s Australia.
- Express love, as it is the greatest gift of all.
Lindy Sperring is chaplain for AdventCare, Victoria.