‘Coming Out’ about the gift of Alzheimer’s
Have you heard anyone saying something positive about Alzheimer’s? Probably not, unless you have been following my lone voice. Why? Is it a bad experience for everyone? Is it bad all the time? The answer is no. So why does almost everyone talk only about the negative aspects? I am writing this to encourage people to ‘come out’ about their positive experiences and share these with others. By doing this we can start to change the perception of Alzheimer’s from being totally negative to being positive, even wonderful at times. Speaking out will help to reduce the widespread fear and dread surrounding this disease.
I acknowledge that Alzheimer’s is not positive for everyone, sufferer or carer, and that it can be extremely difficult for those involved. Nor is it positive all the time, particularly in the early stages. But I believe that there is a window of opportunity in late-stage Alzheimer’s to have very positive experiences.
A note about diagnosis: Alzheimer’s is the most common form of dementia but there are over a hundred forms of dementia and each presents in a different way. With this complexity I believe some people are misdiagnosed. This leads to a confusing picture of the behaviour of the people who are diagnosed with Alzheimer’s. In frontal lobe dementia for example, emotional behaviour is very differently from that exhibited by people with Alzheimer’s.
It was only when my mother had late-stage Alzheimer’s to my surprise, in the midst of confusion and mental and physical limitations, she became very loving and had moments of great clarity and lucidity. I have written about the scientific basis for this in my previous blog. So inspired I was by what she was saying I recorded our conversations and published these in my book, The Gift of Alzheimer’s.
The need to post this blog has arisen out of a number of conversations I have had recently with people who have had experience of being with someone with Alzheimer’s. When they ask me what I do I explain that I write and talk about the potential there is in people with late-stage Alzheimer’s and the positive experiences my mother and I had. On hearing this almost everyone, without exception, has come out of the woodwork and started telling me their stories and positive experiences.
I was talking to recently to a senior medical consultant and when I told him about the journey with my mother his face lit up and he told me that he had had a very similar one. He looked relieved at discovering this common ground between us and I got the impression he had not shared his experiences with anyone else. It was as if he had not fully acknowledged what was happening as it did not fit the standard model – the model of Alzheimer’s being totally negative. This was an ‘aha’ moment for him and a gift to him and his mother.
How many people are like this consultant? How many people have not dared to speak out in our culture of overwhelming negativity? When the opportunity arises, let’s talk to others about the potential, the unspoken possibilities that are just waiting to be enjoyed, cherished and shared.
Let’s ‘Come out’ about the gift of Alzheimer’s.
Looking forward to the next stage of our journey together.
Maggie La Tourelle