Living with dementia: an honest account
Jan Gollop writes about her experiences of caring for her late husband Terry, during his battle with dementia.
Jan will be part of the University’s Health and Healthcare lecture on Tackling the effects of ageing
In 2005 my husband Terry was diagnosed with Alzheimer's and I can remember being relieved. It was good to have a reason to explain why his behaviour had been getting progressively odder during the previous two years.
The first next 18 months were very difficult due to his care pathway in the NHS. We were cast adrift with no professional support. Terry was in denial and my life got complicated trying to juggle work with his increasing bizarre behaviour.
I contacted our doctor’s surgery for advice and they suggested we attend a six week course that covered all aspects of living and caring with dementia. It was a huge turning point for us and Terry became more accepting of the situation and I met other carers in similar circumstances.
We were able to form an alliance with several other couples and eventually there was about 24 of us. We actually had had huge fun, arranging picnics and days out; it was so much easier when we could all assist each other. That camaraderie gets you through the darkest days.
One of the hardest things to deal with was trying to cope with inappropriate or challenging behaviour in everyday life but meeting up with other people with dementia and their carers in a social setting gave us brief respite.
Despite his condition worsening as the years progressed we still did a lot of travelling, which was Terry's passion. Nut it got terribly difficult. Simple things like using public toilets – Terry was adamant that he could manage so no disabled loo for him - became a nightmare, especially ones with separate exits. Barricading doors in hotels also became the norm, but we retained our senses of humour so we managed to muddle though.
During the first few years one of our biggest challenges was his disorientation. Terry would go out to buy a paper and forget his way home. By now he had lost his ability to deal with money (he would revert to old money) and language became difficult. Before he had Alzheimer's he could speak seven languages but now he was struggling with English.
Gradually over time even the simplest task became difficult and our lives became narrower, he found noise unsettling and as we had lots of lovely but noisy little grandchildren that part of our lives became untenable, and I desperately missed being a proper Nan.
Terry started to attend a day centre two days a week, which gave me a window of normality. I could visit friends and go to the shops but it was only 12 hours of respite a week and the remaining hours were together constantly. I loved him dearly but I can remember one evening phoning my sister just so that I could hold a normal conversation because in the world of dementia it rarely happens.
Terry was offered a weeks respite in a nursing home which gave me chance to recharge my batteries, but unfortunately respite he went missing. At that point he hadn't been out alone for nearly three years because he was too frightened. Thankfully he was found 17 hours later having been in a ditch. It was February and he had no coat. The experience was appalling and I lost all my confidence in the level of care that was available to us.
It also had the knock on the effect of social workers and carers becoming involved into our home life. That intrusion was the final straw for me. The professionals and carers were lovely but the fact that our home was no longer our own just became too much for me so I, like many other carers, became ill. After all 10 years is a very long time to have the responsibility for someone.
It was decided that Terry should go into a secure dementia friendly home while I recovered, but after much soul searching and with an extremely heavy heart I agreed that it should become a permanent arrangement. It was an extremely hard decision and one that anyone would struggle to make.
He was there for eight months before he died. Terry enjoyed exceptional care there and we had some real quality time together before the cancer returned. He was a unique person who had a great personality and he never lost his sense of fun. I miss him dearly.
In the last few years I have become more interested in dementia research and the work that goes on to improve the care that patients and their families receive. I am involved with a project, which is looking into ways to make compassionate care in hospitals more viable. I feel any research, whether it is about finding a cure (please God make it soon) or new ways to make living life with dementia more bearable is of upmost importance.
It is without doubt one of the hardest illnesses to cope with and with so many more cases every year, it is imperative that we find some answers.