Last year, my family dealt with the unbearable task of saying goodbye to my grandma, Lois.
She passed away from complications related to Alzheimer’s disease.
There are many wonderful things to remember my grandma by; the list of her accomplishments and accolades is endless.
She was a talented writer, a volunteer in her community, a dog lover, a mother, a grandmother, a wife, a daughter and sister; in all of these things, she succeeded.
Losing someone to Alzheimer’s is something no one wants to experience.
Watching the unraveling of an intricate web of life experiences that molded a brilliant, complicated and multi-faceted person is one of the most difficult things to bear witness to.
The horrible curse of Alzheimer’s disease is you don’t lose the person afflicted by it mercifully or all at once; you lose the person slowly and painfully over time.
You lose these people the first time they forget who you are.
You lose them every time they lose another memory, another piece of themselves.
It is this perpetual loss of them that makes it so difficult to bear.
It was hard for me and my cousins to experience this slow loss of my grandmother over time, and I can’t even begin to fathom how hard it was for my mother, her siblings and, most especially, my grandpa.
My grandma and grandpa were married for 58 years. They created a beautiful family and life together, and they loved each other fiercely.
Like every other married couple, they had their disagreements, but it was their undying loyalty to one another that always carried them through.
My grandma wrote a column, “Lines by Lois,” for the Oxford Press for many years, detailing the life of a mother of five and reacting to the happenings in her community.
One column, entitled, “Who’s That on Yonder Throne Reclining?” published in 1968, tells the story of my grandpa’s favorite orange reclining chair.
My grandpa Charles wanted to get a reclining chair, so Lois sighed and only requested it be tasteful and either red or black to match the rest of her furniture.
Of course, what Charles ended up buying was what Lois described as a “tangerine” chair.
It was bright orange, and it was a monstrosity. Lois was furious, but she compromised and allowed him to keep it.
“I was eventually able to console myself with two thoughts: we’d save money on firewood, because we could just spend the cold winter nights basking in the warm glow of our blazing orange chair; and I was sure the thing was too cheap to last very long.”
Much to her dismay, the chair did last a very long time because Charles refused to get rid of it, even when it was in shreds.
At the end of the article, she says,
“I just hope that when I become crooked and stringy, my stuffings are coming out and I lose my glow that he is half as loyal to me.”
At the time, she had no idea any loyalty he may have had to that old chair would never come close to the loyalty he would later show to her when she was in the grips of Alzheimer’s.
Alzheimer’s does to the brain what time did to that tangerine chair.
But, when she forgot who she was, he was there to remind her.
When her stuffings began to fall out, he was there to love her.
When she lost the precious memories they made together, he was there to tell her their stories all over again.
He still looked at her the same way; he had the strength to look past the shell Alzheimer’s made her, to see the incredible woman she was.
How can we even fathom a love like that?
Watching the beautiful and brilliant woman that was my grandmother lose herself to Alzheimer’s has made it painfully clear to me how little we know about this disease.
What’s worse is witnessing how devastatingly powerless we are to stop it.
But, there is hope. Scientists are making new discoveries about Alzheimer’s all the time.
They have learned that continual mental stimulation, physical exercise and social engagement may delay the onset of Alzheimer’s or at least mitigate its effects.
As we wait for the cure, the question is, what do we do in the meantime?
For all of those for whom the cure will come too late, how do we deal with the crushing effects of Alzheimer’s striking someone we love? How do we say goodbye to someone who no longer remembers who we are?
How do we cherish the beauty and meaning of a person’s life who can barely remember it?
And how do we ensure that the person suffering from the disease feels valued, loved and respected right until the very end?
The answers to these questions are difficult, and they are probably ones families must grapple with themselves.
But, for my family, the answer was simply to love her, both for who she was before the disease, but also for who she became after it.
We reminded my grandmother of the beautiful moments in her life, without overwhelming her with all the memories she had lost.
We calmly explained who we were every time she asked, without patronizing her or making her feel bad for forgetting.
We attempted to help her in every way we could, while still trying to allow her to feel a sense of independence and strength.
It was very difficult to hold these two notions of her in our heads at once.
To recognize the image of her before the disease, a woman clothed in strength, intelligence and dignity, was easy. It was the woman who we had always known and loved.
But, to simultaneously acknowledge the image of her after the disease — confused, temperamental and lost — was not an easy task.
F. Scott Fitzgerald said, “The test of a first-rate intelligence is the ability to hold two opposing ideas in mind at the same time and still retain the ability to function.”
Perhaps, in dealing with a person with Alzheimer’s, the test of first-rate compassion is the ability to hold two opposing images of a person in your head at once and still retain the ability to love both versions fully and without condition.
Until we find the cure, we wait. And we love those suffering from Alzheimer’s through it.
No, our love won’t move mountains or reverse this irreversible disease, but, if it gives dignity to a person’s last years on this Earth, if it lets a little light into a place of darkness and fear, isn’t that a cure in and of itself?