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'Alzheimer's came in on my mam so subtly and quietly'


Anne Joyce's dream is to build an Alzheimer's village where people with the disease can get the care they deserve. Photo: James Flynn/APX

Anne Joyce's dream is to build an Alzheimer's village where people with the disease can get the care they deserve. Photo: James Flynn/APX

Anne Joyce's dream is to build an Alzheimer's village where people with the disease can get the care they deserve. Photo: James Flynn/APX

My sisters noticed it first. They found that my mother Nelly was not exactly her usual self. In the early stages, she was forgetting things in the midst of a task. After lifting a saucepan or making brown bread, she would leave the gas cooker on. She was forgetting to take showers. She became confused while dressing. She began to forget about appointments or making arrangements. The change in her presented itself so subtly and so quietly.

We gathered as a family and decided that one of us would stay overnight with her for her well-being and safety.

Her routines and the days and nights became all jumbled up. We regularly found her at the kitchen table with tea, eggs and toast, reading her bible at two or three in the morning. As a family, we realised there was much more amiss than old age. She was then 78. We searched the internet and found that the changes in her behaviour were part of the seven stages in Alzheimer's.

Alzheimer's began to gather speed and so did Mam. She drove the car like a bat out of hell, robbed the top deck at cards and repeated the rosary over and over again. She was the designated taxi driver for her card games with her friends. After many near misses, she drove down a steep embankment in pitch darkness, miles from her intended destination. She was unfazed by it all.

Cooking began to lose its appeal for her. It was not unusual to walk into her kitchen and find a line of brown bread lying on the countertop cremated. The gas cooker was left on indefinitely. An electric hob had to be installed and a security alarm placed on the door to alert us if mam tried to leave the house at night time.

One winter's evening, she climbed up on a table to close her bedroom curtains. She fell off breaking her hip and wrist, resulting in a trip to hospital for treatment. Because of this accident, we gathered once again as a family to decide what best to do. We battled between reality and heart-breaking guilt. Were we equipped to see out the stages of Alzheimer's? Or was nursing-home care the better option? We agreed, with the greatest of reluctance, on nursing-home care.

At this stage, Mam had become confused and also suspicious. According to her, someone mysterious had stolen her glasses, her rosary beads, her remote control and her purse. Her memory began to decline more. She overloaded her dinner with salt or her tea with sugar. The nurses and carers had to remove them. I remember watching her demeanour change like a child as if she felt someone might take her plate away before she had finished. She would brazenly take food from her granddaughter's plate without remorse. Mam's attention span was fading rapidly. When card playing, she would throw the deck into the wind with annoyance. At times she appeared terrified, telling me there was something evil about. It was impossible to convince her she was in safe hands.

She went through a hoarding phase. Supplies had to be removed from the shower room as newspapers, pads and toilet paper were stuffed everywhere. Mam now had to wear incontinence pads. Her brain was not sending the necessary messages when she needed to use the toilet.

It was not unusual now to find her overdressed or trailing the corridors trying to find an escape route. Losing interest in food was the next step. She had to be spoon fed and encouraged constantly to take sips of liquid. Probably the worst period of time was when she got dreadfully dehydrated and flipped right back in time to revisit her youth of over 50 years previous. She was inconsolable. It became a common occurrence to find Mam in bits, weeping, filled with hopelessness, despair and sadness.

Mobility was the next issue. Taking instructions to move became impossible until, eventually, excursions became a thing of the past as her movement became limited. Sitting upright for long periods of time came to an end and she was starting to spend her days slumped over in uncomfortable positions. She was now speechless, expressionless and motionless.

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Mercifully, she could still be moved gently for bed changes and bathing without discomfort or, my greatest fear, the use of a hoist. In the end, she lay drifting in and out of sleep states with a look of bewilderment.

We were blessed she was a resident in a modern, up to date nursing home and had the cosiness of a wonderful air mattress, which the nurses and carers constantly readjusted for her comfort and movement. Thank goodness Mam did not reach the end or seventh stage of Alzheimer's, where limbs seize up, causing deformities and rigidity. I was terribly hurt that my Mam, Nelly Joyce, had put all her faith in God for her 78 years and was then handed this end-of-life sentence which would last four years until her death aged 82.

Our family started to accept our fate. We marched forward with conviction. The compensation was unbelievably positive - we grew together as our compassion, determination, love and newly acquired wisdom pushed its way through the darkness.

This journey was filled with tremendous sadness. We had to learn to carry a torch of light and love to lift the despair where possible. It made us stronger, more tolerant, more resilient and opened a door of awareness about others walking this trying road with mediocre support.

We were blessed that my mother resided in a wonderful nursing home for her final two years on a support scheme from her pension and that we had a big family. I know people not so blessed who end up on their knees with no support. As a society that sings equality, this is unforgivable. My dream is to build an Alzheimer's Village where there is a feeling of security and purpose and independence for those afflicted.

The purpose would be to find a way that everyone reaching end of life is treated with angel hands and hearts and given the care they deserve.

* A Reason To Love More - The Alzheimer's Enigma by Anne Joyce is published by Three Sisters Press and is available at www.areasontolovemore.com and in good bookshops nationwide.

What is Alzheimer’s disease?

Alzheimer’s disease is the most common and well-known cause of dementia. It is recognised by the build-up of protein on the brain, which forms plaques and tangles that stop the brain working as it should. In general, with Alzheimer’s disease, changes are gradual over time and, in general, people live eight to 10 years after diagnosis.

What are the symptoms?

Memory loss is often one of the first symptoms of this disease, however, there are a range of early signs and symptoms, including getting stuck for words, misplacing things regularly, losing track of time, changes in mood and behaviour, and difficulty in finding the way, even in familiar places. If you are worried about any of the above, visit your GP or contact the Alzheimer’s Society of Ireland at alzheimers.ie.

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