To be sitting in a doctor’s office waiting for news of a diagnosis is frightful. To then hear the spoken phrase: “it appears that you have dementia of the Alzheimer’s type,” ramps up the fear and terror factor even more. That spoken phrase was a game changer. Life as you have lived it, enjoyed it and taken it for granted up to that point in time just changed: irrevocably changed.
The very fabric of your world comprising what you think, how you think, what you think about and the lifetime of memories that it is all foundationed upon will all start to unravel. The awful part about it is that the unraveling had already started some 10 to 15 years previously. No pain, no discomfort, no real obvious clues as to what was headed your way.
The degenerating changes underway and those to come conspire to remove you from a healthy cognitive world and transport you into a smoke filled, murky nether world. In time, you become completely adrift upon the dark waters of this realm. Your only contact with anyone really is via a proverbial life rope and buoy provided by a dedicated caregiver.
You cannot swim out of the world in which you are now floating within. Your caregiver has the potential to come and go between the world where they remain and the world you now inhabit.
The challenge for them is to learn the language and behaviors that comprise how you survive in Alzheimer’s World. By making this extra effort, this extra commitment, your caregiver gains the ability to step through the doorway dividing the normal world from the realm of Alzheimer’s.
Learning the language and behaviors of AD is no easy task. While it is one primary language, there are perhaps thousands of different dialects within it. Each dialect is the result of how one individual adapted to AD and attempted to create and put in play their own desperate survival measures.
The language course for AD has no end. Not in a quarter, a semester or in a couple of years. For the devoted and compassionate caregiver, it is a life course: governed solely by the remaining life span of the person under their care.
I couldn’t help but thinking today that perhaps it was an inability to make this transition between our world and AD world that lead to the blog news article entitled, “Man Kills Wife Suffering with Alzheimer’s and then Kills Himself,” that appeared on Bob DeMarco’s Alzheimer’s Reading Room web site. The gentleman featured in the article, now deceased by his own hand, may not have been able to ever reconcile and allow for the changes that befell his beloved wife. I do not judge this individual for the action he took. Neither do I condone the path that he chose. I do feel compassion and heartache for the both of them and their families. May this couple rest in peace and grace.
As a married caregiver that works in partnership with his wife with two AD family members for the past 8 years now, I can only say that it is absolutely crucial to learn the language of AD. It will enable you to then travel between the two worlds. It is the responsibility of someone to be able to do this, since your loved one cannot reenter our world again.
Learn the language: be the scout or pathfinder that stays connected to your family member.
You will not notice it at the time. You may not notice for awhile after they are gone. Eventually though you will notice that something worthy and honorable has changed the who you are on the inside.
Find the courage to be that person.
Jeff Dodson
March 30th 2012
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