We are conceived, we are born and as we grow we learn to make choices.
As a toddler, we choose to get up to walk and fall over.
We misbehave, throwing our toys around when we can’t get our own way.
Hormones start raging through our bodies.
As we continue to develop, we develop our own identities,
Our own likes and dislike.
We make choices, good and bad,
We take risks and we may do things out of character.
The environment we live in and our life experiences, affects our development.
From the conceived we become the conceiver,
The parent of a toddler,
Who chooses to…
This natural progression of human beings has continued since the Garden of Eden.
Through Genesis and beyond, through the books of the Old Testament we learn who begot and begat.
Onwards and through the New Testament, tales of love, unselfishness, purity of thought and equality of vision.
Fear, denial, isolation, anger, bargaining, depression, acceptance, hell,
Both sides of humanity
We learn, as it is written, in many holy books, about the path to an enlightened future.
You may have read Dante’s Inferno and the trials of the 9 Circles of Hell
Depicted as nine concentric circles of torment located within the Earth
Imagine if you will a sequel, Dementia’s Inferno with its own 9 circles of hell.
Nine concentric circles of torment located on the Earth
The Diagnosis process – From Department to Department, Test to Test, little information, feeling like you are waiting for Madame Guillotine.
You sit there and receive the diagnosis, maybe some leaflets and you are told to put your affairs in order.
You leave the room, there is no one there, where do you turn, what can you do.
Fear – It can cause people to worry about, dread, feel upset by, and avoid the things or situations they fear because the physical sensations of fear can be so intense.
You fear the future for yourself and your family, you’ve seen the images, without information, you fear the worst.
Denial – You deny the reality of the situation.
Disenfranchised grief goes unnoticed and unacknowledged by others, making it an even more isolating experience.
If no one sees you like this, it cannot be real so you stay away from your life before to protect yourself from the life to come.
We block out the words and hide from the facts, we start to believe that life is meaningless, and nothing is of any value any longer.
Isolation – Visitors stop coming, the phone calls stop
Becoming a fading memory in the lives of others
Removed from your family and community to a place of someone else’s choosing.
Living among strangers with little in common
Anger – As the masking effects of denial and isolation begin to wear, reality and its pain re-emerge.
Why me ?
What have I done to deserve this ?
I should have done this
I should have done that
Bargaining – If only we had tried to be a better person toward then…
There may an attempt to bargain. Secretly, we may make a deal with God or our higher power in an attempt to postpone the inevitable, and the accompanying pain, to protect us from the painful reality.
Guilt often accompanies bargaining.
We start to believe there was something we could have done differently to have helped avoid the diagnosis.
Depression – Sadness and regret. We worry that, in our grief, we have spent less time with others that depend on us.
You shut off from the world
Acceptance – Coping with loss is ultimately a deeply personal and singular experience.
Maybe I can live with this disease for a while, maybe I can still do some of the things I used to, maybe I can learn a new way of living my life, adjusting to new challenges for as long as possible, making new memories along the way.
Time goes by and then you are deemed unable to make your own decisions. Through the loss of capacity you lose the ability to choose the death of your choosing.
Hell – Through the loss of capacity you may be sent to your own personal Purgatory.
Spoke about, not to,
Decided for, not with.
The choices you have made ignored in your own “Best Interests”
Stripped of your humanity and the person you once were.
Medical Interventions to prolong the torture.
Kept alive beyond your own personal endurance.
We can make our wishes known, verbally or in writing through a Lasting Power of Attorney or an advanced directive but all may be to avail as two Consultants can make a different decision in our “best interests”
There should be a section of our care plan, where we can state our future choices for when we lose Mental Capacity, so that rather than having decisions made in our “best interests” by persons who do not know us well enough, we can direct decision making whilst we still have capacity, to underpin our rights under International Law via the The United Nations Convention on the Rights of Persons with Disabilities (CRPD)