Just holding hands by Elizabeth Long

In 1981 I met the love of my life, Noel. I was a 40 year old mother of three and he was exactly 10 years and one day older than me. Noel was a NSW Amateur Wrestler Champion, a specialised signwriter and topped the NSW Marquetry Guild Competitions for 13 years running. We were happily married for 30 years until his death in 2014.

In 2006 Noel required spinal fusion surgery and following his operation we decided to sell our home and move to Broadwater Court Retirement Village in Kincumber. Selling our home and numerous belongings caused Noel great distress. He started losing track of time, became confused when driving and forgetting to turn off lights or close drawers. Around this time he also began suffering from panic attacks and started losing the value of money, he was once persuaded by a sales assistant to buy an extravagant Mother’s Day present and began vastly over tipping in restaurants. There were still some good times though, upon moving to Broadwater Court we both took up new hobbies. I became interested in Line Dancing and Noel took up Tai Chi, he was very graceful.

Fast forward to 2009 and Noel’s Alzheimer’s Dementia was officially diagnosed, my experience as a Medical Secretary meant I’d recognised the symptoms some time ago.

I think of 2010 as the year our Alzheimer’s Dementia journey really began. We were very open with our neighbours about Noel’s diagnosis, but many acted like we were contagious. Often our friends and neighbours could not see the problem because I made sure Noel was always neat and tidy. 

We still went for regular walks, out for coffee and to the cinema but now I was the one holding Noel’s hand. I was the one leading and directing, driving us around and ordering our food in restaurants. He was still very happy, not exactly outgoing anymore but certainly friendly and polite to anyone we might meet.

By 2011 Noel had no fear and was easily disorientated, during a charity walk from Long Jetty to The Entrance he set off alone for three hours before hailing a taxi and making his way back to the walking group. I had suggested he wear an ID bracelet for situations like this, but he could very easily unclip the ‘un-removable’ lock and slip off the bracelet.

Noel began attending Dementia Day Care while I attended a Dementia Carers Support Group. The information I received and the friendship I experienced at the support group was so valuable, something I will never forget.

During 2011 we took our last holiday together, to visit long-time friends while Noel was still able to recognise them. His long term memory was still terrific and he greatly enjoyed the company of his friends, reminiscing about hang gliding and snorkelling for giant lobsters as younger men.

Noel was still fairly mobile and when I received the Companion Card we went to our first Opera (Aida) and the Ballet (Anna Karenina) which Noel enjoyed, but not as much as Red Dog. I knew this was the movie he loved the most, we saw it three times.

By the end of 2011 I knew we had a tough road ahead of us, when Noel would become less mobile and the physical aspects of caring would be even more difficult, I lost 20kg in anticipation of these increased demands.

2012 brought many new challenges. Noel was now incontinent and I had to assist with all aspects of the daily routine. At day care he was no longer participating in the sing-alongs or painting and he was losing all sense of time. At home he was becoming resistive to overnight incontinence wear and was unable to rise out of his chair to come to bed. I was becoming very tired and emotional, I was also angry and frustrated as no one believed how difficult caring for Noel had become. In public he always looked so calm, he was polite and still had a smile for people we passed in the street, but now we were no longer holding hands. I was supporting him so he didn’t fall and steering him in the right direction.

I was exhausted and really needed some time out so I booked myself into a health resort and Noel into respite for one week. When Noel came home from respite he was painfully constipated and unable to urinate for three days, he was admitted into Hospital. Unfortunately the staff on duty were not trained to treat dementia patients and disregarded my training and knowledge. The whole experience was very traumatic for myself and Noel, as he had to be restrained, and was followed by five days of delirium. At this time Noel was thankfully reassessed as high care and I insisted he move to our local aged care facility, rather than coming home.

Noel settled into his aged care facility well and for the first time in several years, I was able to sleep in a completely dry bed, without flailing arms and legs or frightened hallucinations. I did sleep better, but now I always slept alone.

I decided to visit Noel every second day and we began having lunch together in the courtyard, taking a few trips to some of Noel’s favourite haunts, we even worked up to a trip home for lunch but at this stage he no longer remembered the house we had shared.

In July 2014 Noel contracted a chest infection and slipped into a coma. Ignoring his Advance Care Directive, staff at the aged care facility treated him with oxygen and antibiotics without my knowledge. The antibiotics helped but for the next 3 ½ months Noel remained in a vegetative state, staff tried to rouse him but he remained largely unresponsive. When the chest infection returned in September 2014, the hospital finally allowed palliative care. Noel died six days later surrounded by his three favourite women; myself and his two stepdaughters who adored him.

I believe Noel was aware of our presence as we sat by him and held his hand, reminiscing and playing our favourite music. Now that the pain of this horrible disease is over, I remember the happy times we shared and the life we created together.

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Carers NSW acknowledges the Traditional Custodians of the land, Elders past and present and all Aboriginal people.