Three years ago, aged 62, my husband, Andrew, was eventually diagnosed with Alzheimer’s Disease. In fact, he had been having difficulties with his memory, depression and anxiety and planning abilities, for many years..at least ten. He had had to retire aged 52, unable to do his stressful and demanding job. The diagnosis was a relief, but also a shock and resulted in a classic grief reaction for both of us. Denial, hope for a cure, anger (why us?), depression then acceptance and getting on with it!
There was a little support organised, namely a home nurse (CPN) for 6 months, then an early support worker for a few months. I found Vocal, the Edinburgh Carers Association, offered some practical and emotional help for me. At first, Andrew was able to continue with many activities he enjoyed, like gardening, going for local walks. He had to stop driving, a big blow to him, but was able to go by bus.
Andrew has been very open about his difficulties, and he told the neighbours his diagnosis. We have lived in our present house for 20 years, and he knows and is known in the local area. This means he was able, until very recently, to find his way around by himself, and do simple errands locally. However, gradually his ability to do things on his own has eroded. He has lost initiative to do things, lost his ability to plan projects, even going places on his own, finding the right clothes (e.g. gardening gloves, of which he has many pairs!) This means he has become more and more dependent on me, and other people, to do the things he enjoys.
He had attended a local Yoga class for many years, but recently, he had to stop going. The teacher had been very kind and understanding and another member of the class kindly gave him a lift to it. However, Andrew is not really able to follow instructions at all now and I was worried about how he affected the rest of the class. The teacher asked them and discovered they were quite concerned about him although Andrew seemed oblivious to any difficulties. The class stopped because of hall renovations. This allowed a natural break and Andrew has not returned.
Similarly, Andrew used to play snooker one evening a week with a local friend and two other men he didn’t know so well. He always said that they were all much better then him, a novice! But they were very tolerant, until his abilities deteriorated. He sensed some exasperation from the other men, and on enquiry, our suspicions were confirmed that it was too much for him. We let that gently slip away too.
Andrew is a nice man, well liked, and we have a number of longstanding friends, from our student days. We still participate in social activities: going to friends’ houses, visiting friends and family, entertaining people here. We have many visitors to stay. In the past, Andrew would have helped look after visitors, collecting them, driving them around, helping with entertaining, but now I have to do everything, unless my daughter is able to help. Andrew still enjoys seeing friends and family, but I think he finds it an effort to follow rapid conversation, and he constantly asks me what we are talking about.
So, what does Andrew enjoy now? One friend has gone with him for local walks in the hills for many years, and continues to phone up to ask him to join her. Another friend has encouraged him to go for longer walks with a church walking group, all of whom have been very kind. She also gets him to help her with our daughter’s garden, which was very overgrown.
Andrew also enjoys going with me to Alzheimer Scotland meetings about policy and services. He feels this makes use of his professional knowledge and abilities. He has recently started attending the Alzheimer Scotland Early Onset Service day clubs twice weekly. He used to grumble about going to this, but now seems to enjoy the activities and outings. He also recognises some of the other clients. It also allows me wonderful time in the house to get on with things. Occasionally I even sit down and read a book!
Our family, especially our grown up children, have been very helpful. They encourage him to do things with them and have looked after him if I have gone away overnight. His wider family would help, but are not local.
Andrew’s social life is now quite restricted but he still enjoys it most of the time, and he likes to be helpful. He does enjoy the company of friends and family; it brightens him up, and he still appreciates their friendship and kindness!