The Big Issue : Edition 442
THE BIG ISSUE 27 SEP -- 10 OCT 2013 23 excursions were usually elderly, some living alone, unable to or past driving a car, some with physical disabilities as well as a few, like Don, with dementia. The outings were to flms, concerts, picnics and, sometimes, op shops. I have no idea how Don reacted to an op shop, as any shopping outside food and wine was hardly a priority. I watched as Don, so used to organising other people, was helped onto the bus like a bewildered child. Often I was glad that, by this stage, he couldn't analyse what had happened to his mind. There were also carers who came to be with Don for a few hours, so I would not have to hurry home if I had been out with friends. Don, who had always been charming and hospitable, was not at ease with these 'minders'. It was becoming evident that, from this point on, Don's personality was changing. There were amusing incidents along the way, which I carefully treated as normal. Staying at the beach, Don went out to the front of the house and returned with a wrapped parcel. When I asked where he found it, he said, "In the letterbox". There was no letterbox; he had retrieved a wrapped fsh carcass from the rubbish bin. On another occasion, Don handed me the phone, which was dead. I replaced it, and as he seemed to be looking for something, I asked if he would like a drink. I handed him a glass, which he held to his ear. He said, "Hello? Hello?" then passed it to me. I repeated his action, wandering around the kitchen with a glass pressed to my ear, saying hello to no one, then turned to Don and said, "I think they've hung up." Play- acting became common to maintain Don's dignity. The diffcult decision of respite soon came up. Don was entitled to government-subsidised respite in an aged-care facility for so many days a year. I presume this was an initiative to enable carers to have a break and encourage them to persevere, thus keeping sufferers out of nursing homes. Taking Don to his frst respite stay was emotionally draining. He was confused about where we had brought him, but as soon as he saw the parking bay for walkers outside the dining room, I knew he felt he didn't belong in this place. When I phoned the next day to check on him, I was told he kept repeating that he couldn't live without me. Don had never been effusive, and this indicated how frightened and insecure he felt. A lack of inhibition started creeping into Don's behaviour. At a restaurant, he spat prawn shells into his soup, and placed empty mussel shells on the shared bread. He started to regularly lick his knife -- although I told him, as I'd told the grandchildren, that this could lead to a cut tongue. Once, when a close friend was visiting, Don emerged from the bedroom dressed in a shirt and nothing else! Our social life became limited to people we had known for years, and with whom we were entirely comfortable -- and family. Soon it was only family. Most people fnd Alzheimer’s sufferers hard to cope with. They are confronted with someone who looks quite normal, but acts inappropriately and can't communicate rationally. I have seen the same discomfort in people when they meet those with an intellectual disability. It's too hard; it's embarrassing. Better to avoid the situation. As the disease progressed, I was helping Don dress and undress. He could still shower and shave, and was quite happy for me to shave the spots he missed. I am not physically very large, and eventually I found it almost impossible to organise Don with the toilet. He knew he needed to use it, but had forgotten how. The toilet on occasions became an object to investigate, to manually check the water was clean. It was like dealing with a small child. Each situation was something entirely new to Don, although experienced many times over. But, unlike a child, he was not absorbing anything I told or showed him. He was not accumulating knowledge; nothing would be retained. Eventually I was contacted by an aged-care facility (a euphemism for a nursing home), where the manager had come to know Don during a respite stay. A room was available, but we had to decide within 24 hours. It was a horrible decision. Our adult children had been urging for this move for some time. They felt things would get worse at home, and when I was desperate for help there might not be a vacancy. As I struggled with the situation, I rationalised that the manager must think Don needed extra care, as she had seen him on two occasions. She had previously told me to look after myself, as sometimes the carer died while looking after their partner! She would have a waiting list, and she was giving us preferential treatment. Perhaps she liked Don. I couldn't take Don myself. I was getting rid of my husband – a man who had once been so confdent, capable, kind and independent. Sending him away to somewhere unfamiliar to be cared for by strangers. My elder son took him while I stayed home and wept, burdened by guilt. This was when I experienced the grief of losing Don. We had lived together for 50 years. And now he was gone. He didn't want to leave me. I sent him away. Lesley Grant is a mother of four and has nine grandchildren. A former teacher, she is interested in social history and social issues. See also fghtdementia.org.au. LESLEY'S POSTSCRIPT: Don died in April 2011. He was in the nursing home for 14 months. I feel we were fortunate he didn't live on in a half-life; he would have hated what he had become.