Presented at the Early Onset Dementia Alberta Conference, Red Deer Alberta
October 30, 2015
When we speak of person centered philosophy and care, we are speaking of our humanity. Humans are multi-faceted and each domain, from the physical to social, makes up the whole person.
Knowing this, how do we enjoy quality of life in this moment?
We do this by supporting individuals and each other. We value the inclusiveness of all community members as with the age friendly communities’ initiative (World Health Organization).
We look for ability not disability. Public policy and every day behaviors will reflect and support this.
My talk is not about specific caregiving techniques, rather it is on caring about people living with dementia.
10 years ago I was working from a grant that specified start up and facilitation of early stage and early onset support groups. While interacting with people who were both young and old, in the early stage of a progressive dementia such as Alzheimer’s disease, I was astounded by the depth of personality and ability the participants demonstrated.
I was also keenly aware of the loss of words and once highly developed skill sets related to cognitive function. This shock directly led me to take up an abandoned hobby- song writing and poetry.
I will use the song- Nothing Grows, written at this same time as the start-up of these groups, to attempt to bring awareness to some of what might be going on in the world of a person who is living with dementia.
Melody and harmony dominant and tonic
I am a 7th trying to find my roots help me with my motives
Once rooted in a life of patterns and behaviors that define us, dementia disrupts the music- the melody, and the most exquisite harmony. Dominant- means having a locus in control in your life. Making choices. impacting on your relationships and environment. But now as a 7th there is potential discord and imbalance. You can’t find the home or grounding note. You rely on the compassion of others to help you execute certain functions. You are at this time and throughout most of the progression of dementia, unconsciously asking three key questions…
Who am I?
Where am I?
Why am I?
In order to experience the melody and harmony you need the answers to these questions. You need someone who will reflect back parts of your life, and yet you need to make new choices to live as normally as possible.
Help me with my motives means satisfying the third question `why am I?’ which is all about purpose.
Never mind you don’t perform as you once did, you are using your abilities to take part in your life patterns and rhythms as you always have- working, walking, gardening, cooking, cleaning, socializing, and creating. You will continue to want to do this for the rest of your life. You want to feel capable whether you are able to contribute or seem to be, in the moment, more passive.
* When you’re not here nothing grows
the sun it won’t shine at all
My words dry up there’s nothing to say
When you’re not here nothing grows nothing grows nothing grows
The chorus speaks of the tremendous loss when there is a lack of caring and regard in your life. When your very humanity has been overlooked through attitudes about your disease, you will struggle to flourish.
Shadows and foreground I take pictures you are the one that develops them all
I hold my breath and remember to keep you in sharp focus
Shadows and foreground as with hearing loss, background and foreground noise become problematic. Perceptions may be confusing and even frightening. A noisy machine may be interpreted as something other than let’s say a jack hammer being used outside. The sound is abstract and the brain is trying to make sense of this.
I keep you in sharp focus is the reliance on others to validate your perceptions and to help you navigate your world. You stay as close as you can to those you perceive as helpmates. You need a translator or a guide to survive, such as Dementia Friends. You need this in every environment and in every situation. You may have memories that will go in and out of focus. Sometimes you will forget the relationship and names of relatives and friends; however you will never forget kindness.
Words fall to paper memories are long jumbled and fumbled
But you take them all in and you weave them into a song life’s simple song
In the group with people who were living with early onset dementia we played a game of drawing a random word from a box. We literally let the words fall to paper. Each person did word association and we strung these words and ideas together and created poetry and song. We laughed, we cried!
Often long term memory is intact and so it is powerful when we access this ability. These long term memories help to answer the first two questions of personhood.
When you’re not here- when there is no kindness, no love, no hope, no answers to the three questions-
Who am I? Where am I? Why am I? Nothing grows. What is “Life’s simple song”?… our humanity of course!
You are not a problem to be solved. You are you. You are here. You are good.