Dementia and Alzheimers: A Fate Worse Than Death?

 

Despite the prevalence of dementia and Alzheimer’s in the population and the increasing odds we will, at a minimum, come into contact, if not already in relationship, with someone who has this condition, many people are at a loss as to how to deal with, communicate or connect with someone who is losing their memories and, in the eyes of many, their very identity. It pains us to be in the same space when that person does not remember us. And this is exactly the problem – if you make it about your pain and not about the person who is still there, who still needs and yearns for friends, connection and companionship even if they no longer no how to express it, who still yearn for acceptance and love even if they do not have the words.

Why is it so difficult? How often do you hear, or even use, the phrase “I came face to face with my own mortality”? When someone close passes? When a certain age is reached? When you’ve had a close encounter with death – real or perceived? That’s hard enough, but what if you perceive dementia to be a fate worse than death? You see yourself in that person’s shoes and don’t like what you see or can imagine, don’t want to live that way, don’t think it is a life. And you become dumbfounded and wordless because you are no longer interacting with the person in front of you, you have closed in on yourself and are dealing with your own life journey and life fears.

My mother’s journey with dementia and in long-term care illuminated and tested some of my own fears and spiritual beliefs. Did I really believe the things I said I did? Did I really believe consciousness is not fixed but that it expands and travels? Did I really believe we are souls living a human existence? Did I really believe there is a fine line, just a veil really, between the physical and the non-physical? Or did I believe, as I often did, that the hallways I walked to visit my mother were the corridors of death and the dying? In Embracing the Stranger in Me: A Journey to Openheartedness I have included stories of the impact of my mother’s journey on me, as well as in many blog posts over the years.

My mother, in a time of her life when she could no longer string coherent sentences together – in fact, could no longer even find her words – showed me the way into depth of understanding. It is because of her that I began to think of two ways of experiencing stories – through the human tragedy lens or the soul journey lens. The human tragedy lens is one through which the physical journey here on earth does not make sense – because of things like dementia or other illnesses or any other range of possible things that pain us or cause us grief. The soul journey lens is the one through which peace can be found. It is expansive and offers a myriad of possibilities. It is the one that says I cannot measure my mother’s (or anyone else’s for that matter) experience by the lens of my own story.

What to do or say to the person who is living with dementia? It is simple really.

  1. Set aside your expectation. Do not expect them to be the spouse, parent, sibling, friend that you remember and maybe even romanticize. They are not that person now. But they are sill a person. Meet them in their humanity – the humanity you see when you look in their eyes (yes, look into their eyes!)and  see into the soul.
  2. Don’t let your own discomfort get in the way – or, in other words, get out of your own way..
  3. Set aside your own fear and your story of their situation.
  4. Greet them warmly – the way you used to – like the friend or loved one that they are. Because that is the essence of who they still are. They will be relieved.
  5. Don’t let it matter that they don’t remember who you are and don’t ask them if they do. In fact, don’t ask them any question they won’t be able to answer.
  6. Answer the same question 100 times in 10 minutes as if it was the first time it was asked, without exasperation, frustration or sadness.
  7. Tell them what’s up in your life without feeling guilty that you still have one when you perceive that either they don’t or you understand how much narrower their life is now than it used to be.
  8. Remember humour. We all like a good laugh. And it is okay to laugh with them.
  9. Stay tuned to where they are – it can change from day to day and it can change rapidly in the progression of the disease. Meet them where they are.
  10. Bring love. Lots and lots of love.

I am deeply touched by this video by Mary Beth Beamer of husband Alan and their appeal for friends to keep visiting. I appreciate the #Stillhere campaign by the Alzheimer’s Society. One of the things I deeply appreciated about the staff at Harbourview Haven where my mother stayed was that up to the very end they treated her with tenderness and care and like the whole person she still was even if her cognitive ability was pretty much gone because she was #StillHere.

Who do you know that has dementia or Alzheimer’s? When was the last time you visited with them? Go now. Or soon and remember the advice in this little gem too.

Alzheimers-Dementia-Communication Advice

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