Ms. Bryden was diagnosed with Alzheimer’s at 46 in 1998. She wrote ‘Who Will I be When I Die’, and ‘Dancing with Dementia’, both of which carry so much wisdom for all of us, demented or not. A piece about her greatest insights — obviously from this man’s point of view — is mandatory. I consider her a hero because for me she began the process of self-determination and self-advocacy for those of us who have dementia, whatever it’s source.
‘Dancing With Dementia’
Each person with dementia is travelling a journey deep into the core of their spirit, away from the complex cognitive outer layer that once defined them, through their life experiences, into the center of their being, into what truly gives them meaning in life. P.11
But this is the experience of dementia, life in the present without a past or future. (I reject dementia’s interest in trapping me in the present so will continue to touch the future and past with the fingerprints that are irrevocably cemented in the dementia present.)
I am thought to lack insight, so it does not matter that I am excluded. P.40
A quote from her colleague, Morris Freiedall; “All that is given to persons with dementia is ‘hospice in slow motion’. We reject this. (the early stages of dementia cannot be defined as a waiting period, unless we all agree that each of us begins his or her waiting period at childbirth). Phooey. “We can discover ways of participating in life through giving and caring which restore our sense of value and meaning. Thus strengthened we find that again we can face and surmount challenges and affirm our courage and dignity. P.55
‘It’s as if we are bilingual or bicultural exiled from our past lifestyle, we have lots of time to deeply and creatively relate. Having been where you are, we can reach out across the divide to touch you in a new way. Having survived trauma, we know our strength….we can draw on our emotions and our spirituality. P.55
Take us at face value, as a person, first and foremost, not a disease. P.127
Just because we can’t express ourselves very well, does not mean we have nothing to say. Don’t interrupt our thread of thought, but let us interrupt you when an idea comes into our head, because if we wait, it will disappear. P.139
We need to move away from labeling ourselves as care giver and softened, toward becoming a care partnership in which we accept, collaborate and adapt to new roles within the journey of dementia. P.150
Is cognition the only measure of our presence? We are spiritual selves in relationship to the Devine. We are emotional beings with relationships. P.152
I believe people with dementia are making an important journey from cognition, through emotion, into spirit…What disappears is what is not important. If society could appreciate this, then people with dementia would be respected and treasured. P.159
I am who I am, not what I say or do. Who I am is defined by my spirit. In life, cognition and emotion may change, but our spirit is held in the grip of the Devine.
We cannot change our illness, but we can change our attitude to it. This is enough to transform our life.
‘Who Will I Be When I Die’
As I unfold before God, as this disease unwraps me, opens up the treasures of what lies within my multifold personality, I can feel safe as each layer is gently opened out. P62–63
The disease affects so much more of my daily functioning and yet I look so well because what’s wrong with me is inside my head. P.71
….after you have gone, I sink back exhausted, monosyllable, wrung out and empty of all showmanship. P.71
It is hard to understand what people are saying to me because I miss the first word or so…this is particularly difficult on the phone where there are no visual clues or a context. P. 79
I’d rather stay sick and get inevitably sicker then give away all this inner peace and happiness. P. 141
Surely remembering an experience doesn’t constitute the sole enjoyment of the moment. P. 144
Thank you, from me and all of us. Dallas Dixon