If you’re on an Alzheimer’s journey with someone, you’ll have lots of questions and you won’t always like the answers. They might make you angry. You might say, “Nope. No way.” The answers might depress you. This journey takes you through emotions. Getting to acceptance isn’t always peaceful, but one you embrace it, you’ll find peace, even as others ask difficult, annoying, or infuriating questions.
—Where does the journey begin?
—Depends. Which one?
—The Alzheimer’s journey.
—Whose? Mom’s or mine?
In the middle of the storm, no one in it frets over where the first cloud collected, where the pocket of air was warm and moist enough to rise into storm. In it, we focus on staying safe.
Maybe we debated the beginning in the beginning, but after the waters irrefutably carried us downstream, “Where did it start?” became irrelevant. We didn’t care.
Swim, dammit, swim!
In case your question isn’t rhetorical or polite, for mom the journey began decades ago, when she watched her mother-in-law and then her own mom be pulled under by the dark waters of the Alzheimer’s river. She kept her eye on the river and the skies, she talked about it, and for several years, she told us, “I think it’s beginning.”
We didn’t listen. The skies were blue, the river calm. We didn’t join her on the journey until 2017 when she received her medical diagnosis.
Once we were nostril deep in it, the importance of the medical diagnosis faded, and newsflashes about new miracle cures in development were heartbreaking. It was too late. No one could do anything for mom.
Navigate!
We didn’t have the power to turn the ship around and go back to Minnesota, we couldn’t even kick our way back to 2010 (or was it 2008), when mom said, “It’s coming.” None of it mattered anymore. We just looked for breaks along the bank, moments that weren’t drenched in river and despair.
Same Ocean, Different Journeys
My journey was not the same as mom’s, not the same as dad’s, not the same as those experienced by other family and friends who became part, or at least spectators, of the journey. We stepped in at different places, but we all went through the stages of grief.
- Denial: No, mom, it’s not coming yet, stop talking like that.
- Anger: Mostly bottled up in our family because we don’t have healthy anger skills.
- Bargaining: Take these pills, keep doing puzzles, stimulate, stimulate. We even hooked mom’s head up to a little electrical impulse machine.
- Depression: So much of this.
- Acceptance: Arguably the hardest because it feels like giving up.
The Peace of Acceptance
Acceptance is not giving up. Acceptance brings peace, gives you mental, emotional, and physical space to be present, to help, to sit and keep company, to share the journey. With acceptance, you stop trying to slay the dragon you can’t slay, you stop trying to outrun the bull and turn the ship. You save your energy for the things you can do.
We’re all headed to the ocean. We start and end our own journeys at different times. As I approach the delta of my journey, I hope that someone who has embraced my inevitabilities will step in to share the last lonely part with me, give me love and space as I face it. I couldn’t save mom, but I hope I did this much for her.
If you’re on an Alzheimer’s journey with someone, like it or not, the journey is shared and hard on everyone. The waters wick into all of our lives.
Find ways to be calm and kind. Show up for each other as the river carries someone’s world to the ocean.
©Pennie Nichols. All Rights Reserved. 2023.
Last Sunday, a friend asked me if I was going blog about that morning’s service. The service, billed as “the service with too many river metaphors,” was rich with takeaway possibilities, so why not? I’m sure I can find an Alzheimer’s River in there somewhere.
Two thoughts from the sermon pushed themselves up for me, demanding attention like islands in the middle of a river. Both were spatial: beginning versus end and opposing banks.
Beginning versus end (north versus south)
At the beginning of a river (north for us), the water is fresh, mostly unpolluted. Standing in it, swimming in it, immersing yourself in its currents might be delightful. You would feel the strength of its current even though the river is still simple, young, and unmuddied.
During the southward journey, the river swells with complexities at each bend and through each community along its path, taking on more life, more volume, more pollution, and more mud.
Opposing banks (east versus west)
The waters on one side of a river can be very different from the waters on the opposing side. One side might be turbulent and fast-flowing, the other calm and easy. Your experience in a river depends greatly on where you are in it, not only the clean, calm north versus the muddied, fierce south, but also the turbulent east bank of the river (in our example) versus the calm west.
The sermon was written around social justice analogies and anecdotes, and they were perfectly delivered. I took in all of it, but that wasn’t what I took away.
Alzheimer’s River
I chewed on these two ideas a bit this week: the experience at the beginning versus the end of the river, and how you position yourself along the banks of the river as your journey down it.
Lately, most of my takeaways and metaphoric exploration relate to my mom’s journey, or at least the part of her journey that she shares with me. This sermon was no different.
I can’t take mom back to Minnesota, back to the beginning. We’re deep in the south, entering the mouth of the delta now, where we’re slowly splaying, losing bits and pieces in the dead zone as we work our way to the ocean.
I can’t stop the flow of the river, but I can help her find the less turbulent bank of it.
Last week, mom started cooking and left her pots on the stove unattended three times. At least three because we know of three burned or scorched food incidences. Mom is an energetic, multi-tasker. Even when she was in her thirties, she would get distracted and walk away from a pot on the burner. I reminded dad of the time when I was in high school, and the burned cabinets around the stove had to be repaired. It’s not all about the Alzheimer’s, but the Alzheimer’s makes the situation muddier, mightier, and not in a good way.
Calm waters
I can’t take mom to the beginning of the river, but I can help her drift towards the calmer bank. She loves to cook and we love her cooking. I believe working through tasks, like cooking a meal, helps her do vital brainwork and stay engaged in the present. I want her to keep doing as many things as she comfortably can. Although I can’t be here every day to help her cook, I can help her cook while I’m here. We can cook double and triple meals so that she can label and freeze them for later. When she wants to pull a meal together, she’ll pull out the labeled freezer packs and will feel good about serving food she cooked.
It’s not perfect, and she may pull together mismatched bags, but who cares? Mom and dad can float calmly on the west bank, enjoy a meal she prepared, and chew a little longer on the gifts that she has always given our family.
Into the ocean
I’m not ready for the ocean.
Not much was said about the very last part of the river’s journey, after it passes its most profound point in New Orleans and splays into the delta, spilling all its complex richness and all of its mighty might into the slow, vast, heaving of the ocean. I can’t control the speed of the journey of the Alzheimer’s River towards that ocean, but maybe I can help mom get a purchase in the overgrowth of the banks, pull into the calm waters, slow the journey a bit, share more memories, make more memories, and find more of the joy that this river allows.
©Copyright Pennie Nichols. All Rights Reserved. 2018.
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