Mom in Decline, with Kindness

This entry is part of a deeply personal series, called Wish You Were There, that’s unrelated to travel.

There’s so much I don’t want to remember about the last years of my mom’s life when she had dementia. How, at first, she hated it at the assisted living place. How her memory and functioning declined so quickly. How I had to take her dog away. How I had to move her yet again to the locked-down memory unit. How I had to lie to her that Kim was still alive.

My notes about those days show a funny pattern though: as mom declined, I became more positive. And only through writing this do I see why.

May 10, 2015

I had a frustrating Mother’s Day.

I just got home from a 4-hour drive up I95 from Richmond (1.5 extra due to traffic), which I’m so sick of. Since Katherine started her last downhill health slide two years ago, I’ve made that trip more than once a month, often every other weekend, and tonight I don’t know what good has come from any of it.

Katherine had a horrible last two years and died miserable, and I’m not under the illusion that the time I spent with her at any of the hospitals or Kim’s house helped at all. My sister doesn’t speak to me anymore and I know exactly that I did not help her. Now it’s my mom I’m driving back and forth for and she won’t remember I was there and will complain about being lonely tomorrow, when I’m starting a new week at work more exhausted than when I’d ended the last one.

I know you don’t do kind things for the compliments or to be appreciated but because they help. I don’t think I’m helping; meanwhile I feel like my worst hours reveal themselves on that one stretch of interstate. I give I95 the middle finger.  

June 22, 2017

Please send good vibes my way. Today I’m telling my beloved momma she needs to leave her lovely home and move to a facility due to her dementia. She’ll be safe there but she won’t understand at first. Man, I love my momma. I’ll be glad when this weekend is over.

April 23, 2018

My days lately have veered almost exclusively from, “Thanks for the sympathy and compliments on how I’m dealing with everything. But really I have all this under control,” to, “GUYS, my SISTER just DIED.”  

My updates are that I have finally gotten the letters from the court giving me the authority/responsibility of executor (funny how that is so close to “executer”), and I’m still trying to sell her sailboat and will visit her storage units this weekend, this time with a UHaul. I gave Paul all her Buddhism books plus seashell collection and the ashes of all her pets for him to bury next to Jackie Boy.  I am continuing to find homes for other possessions that do good. 

Last night after a long (good) day, I visited Mom, although she was already in bed. So I took off my coat and just got in bed with her, and we looked up at her ceiling and said funny things to each other and giggled.  I’m sure she thought I was Kim. But that was okay.

June 20

Most days with Mom, when I take her outside and we sit eating ice cream or listening to the birds, I can make conversation by bringing up specific memories she’s told me in stories, and she’ll know what I’m talking about and chuckle about them with me.  Or, we’ll sing songs together randomly, or talk about bird calls, or, I’ll mention a character in a book she and I both loved years ago.  

These are touchstones I use to help her feel connected to the outside world and competent, plus simply they help me pass the time with her because there’s not much to talk about: her life doesn’t change and she doesn’t remember enough about mine to ask.  

I’ve learned that if she’s not connecting, like I’m not sure she knows who I am so I’m having a hard time situating family members in memories (and don’t want to risk bringing up Kim), then I will have my own conversation with her about my day or what I did recently, assuming she’s following when I know she’s not.  What she will do during these mystery conversations is catch me in errors of vocabulary. She’s listening.

A few weeks ago, I’d used “surfeit” in the context of money, but Mom interrupted to tell me that that applies only to items, not numbers.  Yesterday she and I didn’t walk on the sidewalk so I called us “scofflaws.” She commented that it’s mostly used jokingly, in contrast to actual criminals.  

July 28

We’re in the hospital because Mom can’t seem to remember how to use her legs well enough to stand on them. She’s being evaluated for hospice care, and I’m told she doesn’t meet the dementia criteria because her language skills are too strong.

She just used “blithly” to me here beside her in the hospital bed.

Earlier, the nurse asked what was in Mom’s cup, orange juice? She replied, “Or wallpaper paste, take your pick.”

August 10

My mom passed away tonight in her bed with me beside her. She was loving, inquisitive, and an ace at identifying birds, to say the least. Thank you everyone who helped her through this last season of her life, as she called it.

Sept 17

Since I cleaned out Mom’s place at the facility and sent thank-you pastries to the staff, I’ve been relieved not to think of the place.  I don’t like to remember Mom with dementia, and no matter what else was going on I felt dread there.

So this card from strangers—two relatives of another lady still there—is a surprisingly cherished  bereavement note.  

One lady writes about my mom:

“I knew I could always depend on her for a friendly, thoughtful smile and a kind word. … I can’t tell you how important that was for me each time I visited.”

Another:

“This past year I grew to love your mom. … I could count on her to help with getting the conversation in a more upbeat direction. I really miss her.”

I see now that it was kindness that flowed throughout my relationship with my mom. She taught it to me; I tried to care for her with it; and in the end she was kind to the core when all else had left her. Maybe kindness is also why my narrative moved throughout those years from desperate to grateful. See, people continue to teach you, even when they’re not here anymore.