When I started this series, Just the Facts, I intended to suggest several answers for each of the questions journalists might use to get the facts for a news story on Alzheimer’s: Who, what, when, where, why. Yes, the subject is Alzheimer’s, such an unpredictable disease that each question has many possible answers. But, I thought, if we could gather lots of answers to each question, we’d have a wealth of information to share with each other.
I realize now: That won’t work.
The thing is, Alzheimer’s is such an unpredictable disease, not only does each question have multiple answers, but the questions themselves are everywhere. A plethora of questions each with a superabundance of answers.
- It’s not simply “Who gets Alzheimer’s?” but also
“Who should be the primary caregiver?” and
“Who makes the decisions about care, me or the doctor?”
- We wonder not only “When do I take away the car keys?” but also
“When is the right time to move my loved one to a care facility?” and
“When is it ok to let her skip a meal?”
So…let’s change our approach. Let’s look at only one answer to only one question at a time. I hope you’ll trust me to share the best answers I found to the questions that seemed most critical on my caregiving journey.
Let’s look at “What?” first. The question here is: “What do you want?”
In the beginning, before Mom gave up trying to keep her world in order, my father would ask her the same question many times a day. “What do you want?”
In the morning, she might answer, “My shoes.” In the afternoon, “That magazine I was reading.” At dinnertime, “My napkin.” And just before bed, “Toothpaste.” Dad always helped her find what she needed.
But as Alzheimer’s claimed more and more of her mind, Mom could no longer ask us for the specific help she needed. For example, she’d look at her feet but say nothing, apparently not remembering the word “shoes.”
During that period of the disease, Dad and I did a lot of guessing. Deciding she might want her shoes was pretty easy. But when she stood at the window and pointed outside, or sat in the car and rocked back and forth with a troubled look on her face, we could only speculate, and try to bring her what we thought she wanted. If we guessed correctly, we were rewarded by her look of relief or sometimes even a little smile.
Eventually, though, I think Mom stopped wanting, or stopped knowing what she wanted. Her face didn’t reveal much relief when we helped her with a napkin or held her arm and walked her outside to see the roses. And her expression when we showed her the toothpaste was usually downright angry. Mom wasn’t fond of us brushing her teeth.
But even as it seemed Mom stopped knowing what she wanted, the fact is…we could still please her. Not consistently or predictably, but surprisingly and sweetly. A long day spent trying to steer clear of Mom’s agitation and anger might end with her squeezing my hand, or even whispering “Thank you” as I helped her to bed. Or, of all the days we pointed out the bird on the bird-feeder, on one day she would look, and smile.
The last stages of Alzheimer’s carried Mom even further away from us, and we struggled to know what — if anything — we could do for her. While events and scenery and words and people still swirled around her, she was no longer a part of it all. She was with us, but often she appeared utterly unaware of her surroundings.
It became our question, too. What did we want? For us, though, the answer came with surprising ease: we wanted to help Mom.
Though it was the same desire we’d had since the very beginning, now our abilities seemed almost as limited as Mom’s. We could do little beyond being with her. But it was something. Even when Mom didn’t know who we were, we were there. Even if she wasn’t aware of us at all, we stayed.
And we recognized Mom was still with us. Hard for some to see, but we knew.
By being there, we gave her identity and dignity at a time when those essentials appeared to have been stripped away. We recognized her for who she still was, who she would always be for us: BELOVED. WIFE. MOTHER. MARIE, MAMA, GRAMMA. Not lost—ours.
Identity. Dignity. Isn’t that what we all want? For someone to know who we are?
A miracle of Alzheimer’s is that at the end of the journey, caregivers can give back to loved ones those precious things that Alzheimer’s tries so hard to steal: Identity. Recognition. Connection. We remember, and we remind others.
It’s what we do.
“Fear not, for I have redeemed you; I have called you by your name; You are Mine. When you pass through the waters, I will be with you; And through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, Nor shall the flame scorch you. For I am the Lord your God….” (Is. 43:1-3 NKJV)
Father, You have called each of us by name. We belong to You. Please keep us aware that even when we can’t reach those we love, You always see them. Thank you, Lord, for your tender care for them, and for us.