With Alzheimer’s, there is nothing to fight. There is only a fatal truth you might at first deny and wish away, then curse and mourn, then ultimately surrender to. Trying to hold on to your loved one—as they were before or as they are now, whatever that may be today—is like holding a handful of sand. You can clench your fist tightly for as long as possible, but every last grain will inevitably slip through your fingers. At some point you realize it’s a mercy, for yourself and for them, to let go.
Perhaps that’s why I felt a wave of peace last week after we enrolled my mom in hospice care. Our Sisyphean task had ended; it was time to surrender. It felt like a seismic shift to go from doing everything we could to improve and prolong her life, to simply clearing the path and steeling ourselves to accompany her on this final leg of her journey. The only goal now is to ensure her a peaceful and painless death. It’s a hard thing, but it’s the right thing.
The worst part is that we will lose her twice. We lost her once, in mind, years ago; we’ll lose her in body next. As upsetting as it is to see her in her current state, at least I can still hug her. At least she still responds in kind when I tell her I love her. Soon, even those last few bits of my mom will be gone forever.
But there is comfort in knowing I will find her again after her death. In her magnificent book The Last Ocean, Nicci Gerrard writes:
“Death is never a slight thing, however peaceful a passing is, however minute the distance crossed. Just a breath away, then like a feather being blown with a single puff and a whole world has disappeared.
“And yet death can also restore a person, especially when that person had been un-made by dementia. Once they die, they are no longer only old and frail and ill, they are no longer only confused and forgetful, no longer a wrecked body and a failing mind, no longer not themselves. Because they have gone from us, they can come back to us and be all the selves they have ever been. Young, old, everything in between. Robust, vulnerable, everything in between. And often we fall head over heels in love with all these selves and we understand how they contained multitudes.”
I shelved the practice of missing my Real Mom long ago. It felt like a betrayal to who she is now to long for a previous version of her. Why push aside the person in front of me in a favor of memories of someone who no longer exists in this world? She is still my mom, after all. Not in the way she once was, but through no fault of her own. I know my Real Mom wanted desperately to stay with us. The least I can do is stay with her, holding her hand through every heartbreaking devolution.
I know I’ll eventually miss even the hardest days with her. But I also look forward to reclaiming my Real Mom. I hope to shuffle these most recent years to the back of my mind and make space for the warm glow of happy memories to come flooding back. I’d like to trade the awkward, one-sided conversations for our long discussions over fish tacos at the mall. Can I archive the many times I wiped her nose and changed her briefs and hear her laugh again instead?
All of it will always exist, but I hope my first thoughts of my mom each day will not be of this painful ending, but of the very best of her. I suppose it’s on me to choose to play the highlight reel. That’s the gift in this tragedy: Because they have gone from us, they can come back to us.
She has already popped up a few times. When we received the hospice referral from her doctor, I lay awake that night with this image from her 2015 wedding day in my mind. She was smiling, in love, happy and hopeful for the future.
I cried to this version of my mom: “I’m so, so sorry I couldn’t save you.” My heart broke for her, knowing now what was ahead. I felt ill, like I wanted to peel off my skin, as if sacrificing myself would make any difference. I wanted to go back to that day and somehow change it all for her.
The sick thing—the thing that makes me grateful for biweekly therapy sessions over the past two-and-a-half years and counting—is that I’m not sorry for my current mom. Rather, I’m relieved there is an end in sight to her suffering. Different feelings for different moms. My therapist earns her paycheck a thousand times over for helping me sort through everything.
The other time my mom popped up was when I drove her back to memory care after a recent weekend visit at her old home. She was sitting shotgun next to me, silent, staring out the windshield with her mouth gently hanging open as if she didn’t have the energy or muscle memory to close it. In a flash, I saw my Real Mom sitting there instead. Her gaunt cheeks were plump again, her hair was styled, her clothes were carefully chosen and free from the stains of spilled food or worse. We were heading to lunch, or to her favorite Eddie Bauer Outlet, or to try on wedding dresses for the millionth time. She was there. And she still is, somewhere.
I’m not sure how to navigate this hospice period. (I bet the simple and correct answer is: one day at a time.) There is inevitability and uncertainty. How long? I hope not too long, for her sake—but also not too short. I need time to say all the things, to let her know she was the best mom and grandma, to assure her that we’ll all be okay and that she shouldn’t be scared to leave whenever she needs to. But I also don’t want to freak her out; she doesn’t know she’s dying. That’s a blessing, and also terribly sad.
My mission is to make her feel loved, like it’s her birthday or Mother’s Day every day. She has lost her appetite and taste for most food, but she’ll still make short work of a brownie or ice cream bar with her tiny bites. And while she is nonreactive to many stimuli, the right music still gets her smiling and dancing with her hands.
Let’s make this thing a party. Let’s indulge in chocolate and dancing and joy until the very end. Let’s give this life a beautiful send-off, for what is it if not to be savored with the people we love?
Dev on Running 