Taking time out to give will lead to riches

Her eyes had been closed, her mouth had been open and her motionless head slumped on the pillow for days . There was no indication that there was any mind left. Just before I went to bed, and for the last time that day, I put some water-soaked gauze on her lips and her mouth closed tightly on it. Earlier a visiting nurse suggested that as the sucking reflex was a new-born's first purposeful act, it is the last to go as dementia claimed the adult. That sucking on the gauze was the last motion by the good-looking woman I had married 50 years ago - as I woke the next morning to find her dead.

I ensured that I was upstairs when the men from the funeral parlour removed her. Later I stepped into her now empty room and stood by the bed with the indentation of her body still in the bedding. The sadness of such a situation is surreal. As you weep for another, deep down in the unconscious is a sense of satisfaction that you are now at your best - a rare time when you are totally disconnected from your own needs - totally disconnected from the ego.

There is something beautiful in every one of us, but luck plays its part in setting up the right circumstances for one's better self to emerge from where it is buried. However, you only see those opportunities that you want to see.

An opportunity that was not missed

Once stress enters a marriage it can become ingrained into its structure. After 21 years of hanging in 'for the kids' sake', I finally accepted the fact that it was time to go. We divorced in 1984 under the Family Law Act due to 'irreconcilable differences'. Then, as 1984 faded into the past, I came to realise that the intense love her two children had for her could be the true measure of her value as a human being - and my problems with her became irrelevant.

It must have been about five years ago that the first clues that she was developing dementia appeared. Her house was becoming more untidy, the garden overgrown and the dogs not washed. Finally she could no longer live alone and we agreed that she live in my home under my care.

Life for me became restricted, but this was no great burden. She was able to feed herself and sit on the toilet. So, I was able to leave the house for a few hours at a time after I showered and dressed her. I took her with me when I shopped. This continued for 10 months before she requested to move into a low-care section of a nursing home (which like to be referred to as aged-care facilities and the inmates referred to as guests). She said that life with me was too lonely. As she deteriorated in that facility she became high-care and very unhappy. It was then that the children and I decided to bring her back to my home.

The situation now was very different to what it was before. Now she had to be spoon-fed and was incontinent . The brain was dying and those neural networks which controlled mobility were shutting down. On several occasions during the day frightening hallucinations would cause her to shake and cry. A long-standing arthritis complicated the problem. After five and one half months she was gone and I was free to resume my normal life.

Upon reflection, how do I now feel?

I have had one of the most enriching experiences of my life. Friends warned me against removing my ex-wife from the nursing home. They were right when they said that my lifestyle would be almost completely put on-hold. They were very wrong to see only the negatives. Death is part of life. One cannot have a complete life without sharing the time it takes for a fellow human being to finally succumb to the inevitable.

I now know that any person who has been a devoted parent deserves to be close to family as death draws closer. To move that person into a nursing home is to move in the opposite direction. The word "dump" is an accurate-enough description. The facility she resided in for 10 months had the décor of an up-market hotel. At first I felt good about this. It was later that I realised that this was simply to lesson the guilt the dumpers may have felt. The décor of 'God's waiting room' means little to a person deprived of what made them happy when well. As witness to those final frightful months of rapid deterioration at my place, her spending them with paid employees in a severely understaffed nursing home is too horrible to think about.

Most who have placed a parent or spouse in a nursing home have what appear to be good reasons for taking that action. But I am sure that there is a large minority who did not really try to avoid taking that path. Did they check if family members could be rostered to help with the caring? Could not long-service be taken from work? Intensive homecare need not to be ongoing for years. It is really only required in the last months of life when physical discomfort and fear become especially intense in the victim.

(However, there is one necessary ingredient in the mix. This is a dedicated GP who will drag overstretched government-provided homecare services into your problem. Homecare at the terminal stage involves catheters and morphine injections and bed sore monitoring. It would not be possible without that half-hour or more involvement by nurses each day. Making inquiries yourself without GP involvement will leave you on a waiting list which could be a year long.)

Nevertheless, each day when I looked into those sad and hopeless eyes as I struggled to move her immobile arthritic body to change her nappies, I would ask myself: "Why this? Why is there not a legal way for one to end one's own life with dignity?" Months earlier she said that she wanted to die. That would have been the time for her family to have been gathered around her to exchange farewells. She could have then pressed a key which initiated the plunger on a syringe to deliver Nembutal through a tube and into a vein.

It would have been a heart-breaking scene - but for those present who stepped outside of their comfort zone to look at life through a bigger window - a very satisfying and maturing one.