An online friend has given me some topics to write about, and today I thought I’d try a NaNoWriMo style writing of this one; “How do you feel about what the future holds for you – the future in 1 year, in 2 years and in 5 years? How does it make you feel? What can you do about it? Can you change anything?”
After a diagnosis of dementia it is challenging to think about the future too much, as there is always the fear that you will decline one day, and you have no idea when that day might be. Thinking about today, tomorrow and next week is bearable, but the future in 1 year, 2 or 5 years is less palatable. Many of the people I know living with a diagnosis of dementia are living their lives as fully as possible, achieving their own goals, living in their own way. Yet many are not, almost as if the fear and grief has immobilised them in some way. Some believe the symptoms of their dementia mean they are not as capable as they once were, whilst some forge on with very busy lifestyles, finding strategies to work with these disAbilities. Many advocate to improve the lives of people with dementia, or to educate and raise awareness in others about dementia. Each person has the right to live their life the way they want to. No-one is doing anything more wrong, nor more right than another, simply doing their individual best.
Committing to anything too far into the future is sometimes fraught with a nervousness or fear of being able to ‘perform’ when the time comes around, but even without a diagnosis of dementia, life can change in a blink. We could be in a major car accident, or be diagnosed with some other terminal illness which would impede our ability in the future to fulfil a committment. This can happen to anyone. So for me, living life as if there is nothing wrong with me, and finding strategies to accommodate and manage the various disAbilities caused by the changing symptoms of dementia are imperative to my sense of longevity, and my motivation to keep fighting the symptoms of dementia.
Many people with dementia are comfortable relinquishing parts of their lives, allowing others to take things over for them. My husband tried to take over most things from me, but after a lot of struggling with me not wanting to give up the things I had always done, he eventually found ways to support me to find new ways to achieve my goals. Of course there are many things he has had to take over, or where I do require a lot of support (BUB), but this does not mean I should give up my goals and desires to be active in my community, or to want to make change, break down the barriers caused through stigma, ignorance and discrimination. Wanting to do this also does not mean I have deteriorated to the point of being distorted or irrational in my thinking. Well, not yet my dear husband tells me, and he says he will tell me when the time comes!!
As dementia is a terminal illness, of course this means ones life has a more finite ending, but none of us know how quickly we will deteriorate nor when that ending will come. Life is like that for everyone, with or without a diagnosis of dementia. We live until we die, and so I say, we should LIVE as fully as possible every single day. Accepting that dementia is a degenerative brain disease which does change us and will end our lives, is the easy bit; learning to rise above that cold hard fact is the hard bit. Like a person who has sight impairment, or cognitive decline from a stroke, or something like cerebral palsy. it may take me longer to achieve something, or I may need to attack it differently than I used to, but that does not mean I cannot stop achieving the things I still want to do. And if organisations won’t accommodate my disAbilities to allow me to participate, they are breaking the law. It is not me being obsessive or not being willing to accept my disease.
So can I change anything, or is there anything I can do about facing the future with dementia? Who really knows the answer to those questions? It is a different answer for each and every one of us. I can change my attitude about how I face up to the fear and loss and grief, I can work on strategies to overcome or accommodate the symptoms and use positive psychosocial and non pharmacological interventions. I can change my diet and improve my lifestyle. I can address the end of life questions and action all the necessary legal things like wills and medical directives. I recall doing the Living With Memory loss course a couple of years ago, and one persons way of coping was to deny he had dementia at all, even though one day he came in his pyjamas, and was getting lost most days. Denial worked quite well for him, although not quite so well for his loved ones!! I do know it will probably get me in the end, but that’s okay too, we all have to die of something… truly knowing that fact has given me a peace and freedom I had not felt before.