The Dilemma of Caring, by Terry Campbell

Neil Pomroy's story ('A long journey', Midland Express, April 28) so aptly illustrates the dilemma confronting the sole carer of a loved one suffering from dementia. It turned my Kathleen, a beautiful caring, highly intelligent wife and mother, into a stranger who was constantly distressed. I too thought I would care for her to the end. Like Neil, this turned out to be impossible.
Ours was a love-at-first-sight story. We met on board the Maersk Line cargo-passenger ship 'Meonia' on passage from Singapore to London in mid-May 1957. She worked for the British Foreign Office and I had just completed a two-year tour at the Embassy in Bangkok.

After a short separation spending time with our families, we arranged to meet in London. She had received news of her next posting and fancied me as a better option than two years behind the iron curtain in Sofia, Bulgaria! We married six weeks later. Thus began 59 years of love, discovery and adventure. Our first house together in Malaya was surrounded by a barbed wire perimeter fence. I carried a revolver and a semi-automatic carbine. I had an escort of six armed police constables and drove an armoured Land Rover when I went to work. With Independence at the end of 1958 things quietened down and by 1960 I was able to discard weapons, escort and armoured transport, much to Kathleen's relief as she hated weapons in the house. We enjoyed a happy 23 years together in Malaysia, produced two sons and a daughter, suffered temporary separation when boarding school holidays didn't coincide with overseas leave and enjoyed a reasonable social life with golf, tennis and swimming.

Retirement at the age of 55 years was mandatory throughout Malaysia and when that day came, we decided to move to Melbourne, where Kathleen's family had settled in the early 1960s. We left Malaysia with many happy memories, in particular the reception in Kuala Lumpur when Kathleen was presented to the Queen who chatted about Kathleen's service with the Foreign Office in Ethiopia.
We settled in Emerald in the Dandenong Ranges. Kathleen obtained employment with the Victorian Police Forensic Department in Spring Street as a secretary but pretty quickly her skills were recognised and she was offered a job managing the Police Legacy office in William Street. Her work there earned her a special citation at Government House on her retirement in 1986. Her decline started with an unsteady gait and a fall. Although this was worrying, Kathleen went on to serve as an unpaid teacher's aide, but it became obvious that her mental acuity was failing her. The children's chides were laughed off but soon I noticed she had labelled taps so that she would not burn her mouth drinking from the hot tap again.

A visit to our GP for her sudden loss of smell led to an appointment with the Memory Clinic and the inevitable diagnosis of Alzheimer’s. This news was shattering and Kathleen fell into a deep lethargy but pulled herself together to serve at the school for a further year. Her skills dropped away especially driving and cryptic crosswords. She reported being deaf but wearing hearing aids was already beyond her. She started hiding things and fretting that they were lost. Expensive jewellery, handbags full of valuables, glasses. This, I now know is common in dementia along with the associated paranoia that people were stealing from her. Then began a phase of verbal aggression. Yelling about ownership. Not wanting me to own anything. The natural thing is to point out the truth, but you soon learn that reason has gone and it is just better to avoid touchy subjects.

Along with this intellectual loss, she was also becoming physically weak. Losing her balance, having nasty falls. My need to ask for help from the ambulance must have sparked something and she suddenly suggested we should both go into care. I was one of the lucky ones in this part of our journey, as she went along with being placed into care. She was calm and lucid and appeared resigned to the fact that we would no longer live together. I visited her twice a day for the next 11 months. She lost interest in television but was happy to reminisce about the past. As the months passed, she became increasingly frail. She was sitting up in bed that last evening. Her face appeared youthful and clear of blemishes. Her eyes were clear and sparkling. I held her hand and she smiled. "You were always the only one for me," she said. I could not hold back the tears. She passed away in the early hours of that morning.

It is only just 100 years ago that sufferers from dementia were regarded as lunatics and locked up. Things have progressed but losing a loved one, even today, is not the end of the torment. I tortured myself about whether I had done enough for her? My suffering eased when I met Neil Pomroy, the president of the Woodend Lifestyle Carers Group. Here I found a group of people who understood the carer's lot! WLCG has provided me with a healing, gentle space where sharing is the only medicine and where we can put our energies into lobbying for respite so that the carers' road may be less stressful in the future.

The Woodend Lifestyle Carers can be contacted by calling 5420 7132. Although located in Woodend, the group is for the whole of the Macedon Ranges and its neighbours.

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