Does He Still Know Who You Are?
by Bevery Bigtree Murphy, MS., CRC., Caregiver
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"The art of living does not consist of preserving and
clinging to a particular mood of happiness, but in allowing happiness to change its form
without being disappointed by the change; for happiness, like a child, must be allowed to
Of all the issues facing me during the 10 years I cared for my husband, Tom, at home, that was the most asked question. It was asked by professionals, family, friends and uninvited strangers, sometimes in parking lots and supermarkets, often with Tom standing next to me. It was like being tormented by a flock of pecking birds at times. And when Tom died they still felt the uncontrollable need to ask, even in the circumstance of my mourning
"Did he know who you were when he died?"
Those words will be branded on my brain until the day I, die.
The problem is that there was always a hidden agenda behind that question. That question had more to do with whether Tom should be institutionalized than it ever had to do with where he was in this disease process. More than anything else it demonstrated the bias that surrounds this disease, a bias that equates the ability to communicate and produce with human worth and need. And unspoken was the ever present, innuendo
It was as if
Make no mistake about this: Alzheimers is not about memory loss! It is about progressive, permanent, brain damage that affects every function of the brain until it dies. And when the brain dies we die.
If this disease was presented to the public in its entire spectrum of horror there would be a hue and cry to have it eradicated, and people might stop asking that stupid question.
He responded to love, acceptance, respect and consideration. In spite of his increasing deficits, his dignity was never compromised because I refused to let it be compromised.
Non-Caregivers Often Misunderstand Dementia
Did I ever receive encouragement or empowerment, or endorsement for my efforts? No! Instead I frequently heard:
In other words, they offered an "Out of Sight, Out of Mind" approach to Toms care needs.
In defense of our people, Id like to make this point: "Forgetting who we are," is a misconception.
And last but not least
Understanding Alzheimers Disease as Brain Damage
Oliver Sacks, relates the following case study in his book, "The Man Who Mistook His Wife For A Hat."
Comparing this form of brain damage with Alzheimers Disease might raise some eyebrows. However, in my mind, brain damage is brain damage regardless of the cause and this case study helped me see my husbands problems in a different light.
The separation of our people from their present in the early stages of dementia is similar in that their clearer memories of people and places will be as they existed in their past. Their present is fading from memory, and like Jimmies affliction, it cannot be reconstructed.
How the husband approaches her at any given moment of the day or night has to influence her behavior. How can he exhibit any sensitivity to this situation if he has no understanding of what she is going through?
Better yet, how does a service provider help this man understand the ramifications of what is transpiring, when they dont understand the ramifications of what is happening themselves? They dont even understand why he still has her home. As many caregivers have found out, casual observers can easily misinterpret the whole scene as one that is abusive. And once that label has been levied many get to experience another sort of hell in their lives.
Wanting to Go Home
We hear our people obsessing about wanting to go home when weve taken the trouble to move them in with us, often at great personal family sacrifice. We need to look at their world through their eyes and learn to recognize the symbolic language being spoken. Something as simple as "I want to go home" takes on different meanings as time with this illness passes and maybe all of the following choices are valid.
A Different Reality
This disease alters their reality once the mid-stages occur and it cannot be fixed. The only option is to enter their world and accept their reality.
And so, instead of explaining to them that they are indeed home, or that you are their husband, or son, or wife, perhaps what you need to do is express love and acceptance to them and acknowledge that life is different now. Your expectations of someone with this disease have to change. To walk up to your person cold, drop your name and then feel rejected by their lack of response is really little more than arrogant. It is also a little cruel. It is a test that sets the Alzheimers Disease person up to fail and it inflicts a great deal of stress on them. So what if they cant rattle off your history in their lives at the drop of a hat!
We don't lug this sort of baggage around in our relationships with infants and toddlers and it isn't necessary to inflict it on those with Alzheimers Disease. This is indeed a sad thing to witness in a friend or relative, but it is a milestone in the deterioration that will happen if your person has this disease, and it doesnt have to portend the end of your relationship with that person.
Our family members, like our infants, will be dependent upon others providing cues, the use of familiar phrases, body language, tone of voice, facial expression, and a warm intent to trigger response. Even when language has failed them completely, they will find a way to be a part of their surroundings, if they are allowed that luxury by those around them. Take it from one who knows.
Forgetting who the caregiver is, is really a very small part of this greater picture.
As for how I learned to answer "The Question." I smiled and offered the only meaningful response I could think of "I still know who he is!"
Note 1: Dr. Barry Reisberg is the Director of the Zachary and Elizabeth M. Fisher Alzheimers Disease Education and Resources Program, New York University Medical Center; and professor of Psychiatry, New York University of Medicine, New York. I first came in contact with Dr. Reisbergs work in 1986 at a seminar at the International Center for the Disabled in N.Y. He was among the first to categorize Alzheimers Disease into stages of deterioration, and his "Functional Assessment Staging Tool (FAST)" provided me with a quick guide to Toms place in this disease throughout his illness. "The Functional Stages in Normal Human Development and Alzheimers Disease," was brought to my attention in 1997 at the annual education conference of the ADRDA. It compares ages 1 month through 12 years in childhood development with the last 5 stages of Alzheimers Disease, which is in essence the last 12 years of life for someone with Alzheimers Disease. The similarities are startling between these two groups, except they are happening in reverse. While one gains, the other loses in like order. I recommend these scales to all caregivers. Copies of Dr. Reisbergs scales are available through my web page: http://www.bigtreemurphy.com .Go to: "A Caregivers View of Alzheimers Disease" and click on "What is Alzheimers Disease?" Information about these scales and access to copies of the scales themselves are contained in that document.
Note 2: I first heard this reported by Dr. Paul Raia,
Director, Patient Care and Family Support, Eastern Massachusetts Chapter, Alzheimers
Association at the Sixth National Alzheimers Disease Education Conference in 1997.
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