I began documenting this uncertain journey four years ago next month. My words are often reminders, a big fat note to self, because I mostly write for myself. I also write to honor my parents, to lift them on the journey. My hope is to connect with other caregivers and empathetic readers through my words. To lift them.
Note to self: This is damn difficult.
A few days ago, a friend who was also an Alzheimer’s caregiver for her mom, wrote to me:
Been reading your blogs —tough times. Brings back memories, it can be so damn difficult & exhausting. Your mom is so lucky to have you, makes me wish I would have done more for my mom. Can’t dwell on that.
The makes me wish… sentence made me sad. I never want my journey notes to inspire regrets. It’s the opposite of why I write about anything. Down the road, I may have a similar struggle with regrets, so this is me writing to my friend and a note to myself: We do our best.
Another friend who is a facilitator for the Caregivers of Alzheimer’s and Dementia Patients Support Group offered this to one of the group members who was struggling with the I-wish-I-could’ve/would’ve thought pattern:
You did the best you could with the tools you had at the moment.
Note to self: Do your best with what you have.
My friend’s words have stayed with me as I move through this journey with my parents. I offer them back to my dad when he struggles with mom, to myself when I’m not happy with my choices. I offer them here, now, to any other caregiver, past or present.
This journey plays out differently for every family because the range in behavior and condition of Alzheimer’s patients is dramatic. I have two friends whose moms became violent. Of course their families needed memory care. One of my grandmothers ran all of the sitters off and nearly burned her house down more than once. Of course my uncle thought she’d be safer in a nursing home. My other grandmother, the one with a switch bush just outside her back door for spanking her grandchildren, became docile, a lost puppy following and calling after the only shred of her life that hadn’t faded: Norman, my grandfather.
My grandfather patiently cared for her until “she passed out.” He kept her home because he could. Patience may have been his nature, but I imagine he never thought of it as a choice. He was just doing the best he could.
Note to self: I see you.
My dad once told me that he told mom, “I’m no Norman.” I’m not sure the exact context, but it involved Alzheimer’s. Mom’s been watching this bull snort at her for at least six years. Dad knew my grandfather’s model wouldn’t work for him.
You don’t have to be a Norman, Dad!
Dad isn’t Norman and he’s doing his best. I know because I see him.
And my friend who wrote to me last week? I know she did her best. She kept a sense of humor I envy, and she did some beautiful things for her mom and dad that I wish I could do.
I see you!
The things I do for my mom won’t work for other caregivers. The choices other caregivers make won’t work for my family. Our journeys are different and caregivers can’t all respond in the same way. We don’t need to be the same. What we need is to be seen. This is a damn difficult journey.
Note to self: Pity parties and guilting don’t work.
I mostly write about the best moments, that moment we managed to crawl out of a hole that swallowed us or that moment we found a joyful activity. The simple moments that offer a little hope and light.
I don’t always walk in the light.
Restless my mom kept asking where dad was. I had sent him to Sunday evening church without her so I could spend a little time with mom before I left for two weeks.
“He was supposed to take me!”
“I asked dad to let you stay with me because I’m leaving tonight. You said you wanted to stay with me. Don’t you?”
She was agitated. “If people would just do what they say!”
I’m not sure if I was truly sad or if I thought I could guilt her into relaxing. “I’m sad. I thought you’d want to spend the evening with me.”
When I didn’t get far the first time, I used the same tactic a second. Maybe a third. Devolving the conversation.
“I guess I’m the bad one now,” she said, staring hard into the other room, away from me.
Note to self: The ALZ bubble is always on the verge of bursting.
The words that follow might sound like in-my-defense statements (and it’s not untrue), but I write them as notes to self for caregivers.
Outside of the ALZ bubble it can be easy to ideate the perfect things you’ll do and the exemplary demeanor you’ll exhibit (or would have done and would have exhibited) through the difficult moments.
I have the luxury of removing myself two weeks at a time when I go home. Dad doesn’t. Many caregivers don’t. They’re in the ALZ bubble 24-7.
The ALZ bubble is pressurized, about to pop with hard moments. Sure you have tools —an excellent box of tools— but under pressure you struggle to locate them. Not to mention that you’re stuck in that pressurized bubble with your own baggage and, let’s face it, your own garbage.
It makes me sad that you don’t want to be with me.
What a load of garbage! What was I thinking? I clearly wasn’t.
Note to self: There is no pause button.
Life doesn’t pause for the miracle of patience. You have to find patience in spite of the life tasks that pull and weigh on you, and some days the patience is not there.
I needed to pack, take out the garbage, the compost, close the blinds, pack the computer, prepare the house for a 2-week absence. Patience wasn’t in my tool box.
Your scramble for tools is exacerbated by the prickly gasses of emotions that fill the ALZ bubble: sadness, disappointment, fear, impatience, anger —oh the anger!—, frustration, and grief. Pressurized, tangled, hot, urgent. It’s a miracle you can breathe in there, let alone rise to a task.
Dad recently reported a new development. He didn’t say so, but I’m sure the new development injected the gas of embarrassment into his ALZ bubble. Sitting in their pew at church, he saw something on mom’s neck.
“Oh my, is that toothpaste on your neck? Here, let me wipe it off. Why did you put… ? Never mind.”
We can’t side-step or mitigate all the developments. We can’t shake off the emotional toll and we have precious little recovery time because it’s all we can do to manage this wagon, barreling down the mountain with no brakes. There is no pause button, so we strategize, make promises to ourselves, face the next day.
To help mom with where to put what, we’ll simplify and organize toiletries, outfits in the closet, and underwear in the drawers. That’s the best we can do.
Note to self: Make the best of the journey, it ends in disaster.
This journey is hard. You care for someone you love knowing all the while you’ll both lose. Embrace the grace you’re given in any moment.
If you said something that made her smile, congratulate yourself. If you were able to sit still with him in the afternoon even though the house needed tending, give yourself credit. By the same token, give yourself a break for those moments when you left his side impatiently and for that thing you said that made her agitation escalate.
The balance is hard, the journey unkind.
For me, the journey is all I have left with mom. She’s going to lose this battle. I’m losing her bit by bit. Dad’s losing his love. I know where we’re headed and I don’t like it. The best I can do is make the best I can of the journey.
Note to self: This is so damn difficult. I’ll do the best I can today. And that’s enough.
If you’re on an Alzheimer’s journey, remember to take care of yourself along the way, give yourself a break, accept the help of others. If you’re not but you know someone who is, see them and let them know you see them.
©Pennie Nichols. All Rights Reserved. 2021.