I have dementia: that’s true and indisputable. I have been diagnosed with Mild Cognitive Impairment (MCI). Fortunately, it’s only in the early stage. I am still cogent, rational and fluent. That’s going to change, but right now – at this stage of my life (almost 80 years) – I can rejoice past and future with my wife and friends. But that’s not all: there’s a new dimension. I have a strong commitment to help new friends – those with dementia and those who care.
Those who care and those very special, self-selected, dedicated people whom we generally designate as care-partners are very much the focus of my new life.
Let’s start with my care-partner – my wife Sandy. We’ve cared for each other since high-school and married sufficiently early to support each other’s independence in our maturation as a couple. Now, that’s changing. My independence is shrinking in direct proportion to my need for care. Sandy is it. She now stands with me – front, side and back – as my needs increase and my dependency grows. I am fortunate. She is willing and able. Not so with everyone.
Many are blessed with family members who step up to become a care-giver – often sacrificing self and other members of their personal family. Others find professional care-providers who are especially trained and dedicated to helping those who cannot stand alone. Care-partner, giver or provider – wonderful people without whom those of us with dementia would unnecessarily suffer so much pain and fear.
Others care – some directly and some more remotely. However it’s done, they create and maintain groups and associations dedicated to providing resources which support the afflicted and their care-partners. These caring people – with or without remuneration – offer a quality of life that’s beyond imagination.
I want to help all those who care.
And I want to help those like me – those afflicted with some form of dementia. I can do it directly with words spoken and written I can do it with workshops where we can share experiences and develop a “can do” attitude and betterment practices. “Can do” is the basis of better living. It focusses upon what one can as opposed to what s/he cannot.
“Can do” begins with an acceptance of the reality of dementia. Too many fear, deny or reject any assessment of dementia. Until they accept their reality, they will live – with increasing fear and terror. With acceptance, they can get ready – acquire needed information – and develop a plan. A plan will provide assurances for the future and enable them to live each day with the promise of all that is possible.
There is also one inescapable feature — the severe or terminal stage of dementia, which means end-of-life considerations. This is what everyone fears and dreads. It can be lived – there are resources available designed to make the end easy and comfortable. That should be part of your plan. But there is an alternate route to the end: Medical Assistance In Dying (MAID) – legislated by the Federal Government upon direction of the Supreme Court of Canada. The Court ruled in 2015 that all Canadians are entitled to assisted suicide to avoid prolonged suffering.
Conditions are strict and, at the present time, dementia patients are not permitted access to MAID. But that restriction is subject to change – and it may come in the near future. I am doing what I can to remove that restriction and to ensure that dementia patients may exercise all their rights as specified by the Supreme Court.
Under no circumstances do I recommend that all dementia patients should access MAID. The right to assisted suicide exists only as a matter of choice. No one, no agency, no physician, no nurse practitioner, nor I can tell anyone to avail him/herself of the provisions of MAID. But it must be available. The Canadian Association for Alzheimer’s – in its Bill of Rights – says the dementia patients are entitled to all their rights under the Act of Canadian Rights and Freedoms.