Alzheimer’s–I think the first time I heard that word was sometime in the early 80’s when a member of the shul where I was a member, was given the diagnosis. Until there was a term for it, we all had called “that” merely “senility.” We would hear someone repeat a question two or three times; or we would tell someone something, and they would forget it merely seconds later–and as far as we were concerned, the person was “going senile.”
And then came a NAME for this condition. It was a word that I would hear hundreds of times over the next thirty years, but really didn’t pay too much attention to it. It wasn’t a term I “needed” in my repertoire…or so I thought.
Fast forward to early 2012, and a series of events that led me and my family to discover that my mother-in-law was diagnosed with, with, with…DEMENTIA. Hmmmm….well, that sounds better than “the ‘A’ word.” We hesitated to use the term since, after all, the doctors never really uttered the dreaded diagnosis. And yet, over the next few months, as the decline became more pronounced, we finally needed to come to grips with it by indeed stating the obvious: “Ma has Alzheimer’s.”
(Just to be clear–because we certainly weren’t at first–the term dementia actually refers to a set of symptoms, not the disease itself. These symptoms might include language difficulty, loss of recent memory or poor judgment. In other words, when an individual is said to have dementia they are exhibiting certain symptoms. Alzheimer’s disease accounts for 60-70 percent of cases of dementia.)
The word Alzheimer’s began to conjure up all forms of ideas in my head, and I began to wonder aloud about so many issues relating to the illness. Researching the illness, the progression, the stages, and all of the associated information that went along with it, left me feeling breathless and full of more questions: How would the illness affect my IN-LAWS–not just my mother-in-law. How would the illness affect my wife and my family? At what rate would it progress or would it plateau for years as it is wont to do.
And while the answer to these questions are vast and filled with emotion, there is a different issue I would like to address here: how would we now begin to relate to my mother-in-law in this new reality.
I must admit that at first, I found it frustrating and maddening. “I don’t understand! I JUST told you twenty seconds ago that I live in Maale Adumim. How come you can’t remember?” Or–“If I just told you that you live in Israel for 16 years already, why do you think you are still living in Chicago?!” And it was these kinds of frustrating questions that ran through my mind early on.
Until I finally realized: Indeed she CAN’T remember. Indeed she does not have the capacity (for the most part) to “make new memories.” In a sense, she isn’t “forgetting” what I just told her–she never “knew” it in the first place. And my frustration turned to love. And it was out of that love that my visits to my mother-in-law (sadly not that frequent) became very different.
Where there had been frustration, greater love and compassion began to grow. Replacing the lack of understanding, I found a sense of peace. And I began to understand: Sadly, while the woman in front of me was the same woman physically I have known my entire life, she wasn’t able to relate to me any longer as she had done in the past.
And then the guilt washed over me. How could I have been so insensitive? How could I have been upset with her for not getting my name right so many times? How could I not understand, as she needed to defer to her husband to answer even the simplest of questions? I hope she will forgive me; I hope I will forgive myself.
And as the disease progresses, I wonder: will she remember me next week; next month? Will she continue to think that Andy, my wife (of 32 years) and I just got married recently? I pray to G-d that whatever her future holds, that for her children and family, she will heed the call : Forget Me Not.
We love you ma–no matter what; no matter what tomorrow may bring.
I believe that all I am saying here can be summed up by a beautiful and poignant poem, authored by Aliza Gable Lipkin, entitled: “Fading.”
The longest short visit I ever had
Watching you this way, feeling quite sad
Whilst once vibrant, independent, self-assured
Now frail, needy, with ailments never cured
As I study your face a story is told
In every wrinkle a tale waiting to unfold
As I try and share words with you
They seem to enter, but then they fall through
Wanting to scream, don’t you remember the day
We went to the park together to play
You held my hand through challenges I’d face
Never pushed too hard, kept to my pace
I love you I say, despondent I feel
Do you experience this moment or is it surreal
Will you remember tomorrow what happened today
Does it matter to you if I go or I stay
You ask a question, I answer in kind
A nod of recognition then lost from your mind
Parts of you fading away
that seemed to be here just yesterday
I’m losing so much of the person I knew
Still left undone all things meant to
I thought that we’d have so much more time
Opportunities wasted, that is my crime
I leave now concerned what tomorrow will find
How much less will be of your mind?
I hope and I pray that what will be there
is you feeling secure with my love and my care
Even if memories are lost in your head
They will beat in your heart for there it’s inbred