My sister told me once that I’m good at turning lemons into
lemonade. Maybe I am, but I don’t do it consciously. No, Oh, wow, lemons! Let’s
make lemonade! It’s more a survival thing. I think I do it because I don’t want
the bitterness of a situation to linger, or sour me.
Regular readers of this blog will already know that my
mother passed away about three years ago, and that the last two years of her
life she was in a dementia-care facility, where Mark and I visited her nearly
every day.
In the beginning, visits would take hours. There was no “slipping
out” until she was ready for a nap. In the moment, she knew exactly what was
going on, but half an hour after we left she wouldn’t remember we’d visited. Miles
above a person’s looks or wealth or social standing, Mom valued their mind. She
valued her mind. It was really heart-wrenching to see hers
slipping away.
Mom was never what one would call pliable. She was smart,
strong-willed, and opinionated, and that didn’t change after her memory started
failing. She could still throw zingers, tell you all the reasons you were wrong
about something, and if she was of the opinion that she didn’t want a shower,
it was no easy task to give her one. She was so stubborn about showers that I
would often help a caregiver with the task, and we’d both emerge sweating and
soaked.
I began bringing along Nick Bruel’s Bad Kitty Gets a Bath on shower
day and read it to her. She thought Bad Kitty was hilarious. “Don’t be a Bad
Kitty,” I’d tell her when she’d screech like one in the shower, and it would
give us a short reprieve from hearing how we were killing her “so unnecessarily!”
At first Mom could feed herself. She’d beg us to smuggle in
salt. Or a juicy hamburger. “Rare! With lots of onions!” After a time, we began
having to feed her, but there was still that feistiness inside. If there was a
lump in the food, she’d stick out her tongue to show us the offensive morsel. I
made the mistake of saying, “Mom, gross, just swallow it,” and she spit it at
me, finishing off with a wicked grin.
I’ve seen my mom in a walker war with another resident, yelling
and yanking from opposite ends. I’ve seen her flirt with a new roommate from
her hospice bed, mistakenly thinking the new resident was a man. I’ve seen
accidents of all manner, and listened to her whispers about her “arch-enemy” –
a resident who she couldn’t remember why she hated, but boy did she ever
hate her.
Mark was amazing with my mom. She gave him guff and he gave
it right back, always with a laugh. She liked that. In him, she found her match—someone
who was willing and able to spar, and wouldn’t get spun up by the things she
did or said. He’s always been like that with her, and I appreciated it extra
those last two years.
At some point during our visit with Mom—or if she happened to be
asleep when we arrived—Mark and I took turns “doing the rounds.” We knew all
the residents and they would light up when they saw us because we would hang
out with them—visit for a bit or play a hand of cards. We’d also fetch their
juice, console residents who were upset, or help out any way we could. Mark was
the hit with one woman in particular, who would grab for his backside whenever
he walked by. She was 92.
With all that time there, we got to know the caregivers, too.
What a job. Lifting residents, changing their diapers, bathing them, doing
their laundry, feeding them, mopping up their messes…all while trying to stay
upbeat and calm when food or teeth or tempers went flying.
I think the best stories are born from experiences or
witnessing things that have touched us on a deep emotional level. But being in the
midst of my mother’s deteriorating state, I didn’t see the story here. It was
just personal. Sad. Exhausting. Private.
It wasn’t until the week after she’d passed away and I was
delivering a thank you lunch to the staff that I realized how much I had
learned and felt during the
two years my mother was in dementia care. And I started to see that maybe I
could say thank you in a way more meaningful than a delivered lunch.
And so I cut the lemons open. Squeezed them. Added major
cups of sugar, and stirred.
What poured out was The
Secret Life of Lincoln Jones. The story of a sixth grade boy who has to
spend his afternoons at a dementia-care facility where his mother works as a
caregiver. Lincoln is who he is because his mother, Maribelle, is a composite
of the people—the angels, really—who cared for my mother during the last two
years of her life. There are other facets to the story, but what I hope shines through is that it's a tribute to caregivers--a way to encourage people to recognize the hard job they do.
6 comments:
You don't just make lemonade, dear sister, you make sparkling, multi-colored lemonade. You are simply amazing. Hard to believe it's been three years since those frequent visits ended. Can't wait to read about Lincoln!
Thank you for writing this, Wendelin. My aunt got dementia a few years ago, so I recognize a lot of the symptoms you mentioned here. She is currently still living with family, but she probably will reach a point where she will need to move to a specialized care facility. I hope that my extended family will be able to support the caregivers like you and Mark did.
I'm looking forward to the release of The Secret Life of Lincoln Jones. It comes out during my birthday month, so I may just treat myself. :)
About half the time I was in nursing, I cared for dementia patients. It was not my favorite aspect of that career, but I well remember the admiration I had for those co-workers who were obviously born for careers where compassion, empathy, patience, humor and charity were so important. I learned a lot from them as I worked along side them, and although I ultimately left nursing after several years, those memories continue to hold a special place in my heart. I can hardly wait to read about the lessons that Lincoln learns in his experiences!
What a nice comment, Nanine! Makes me feel...effervescent :-)
Jo -- I hope your aunt's family all support the efforts of each other. I don't know what I would have done without my sister and husband! October is a great month to have a birthday -- another reminder of my sis, who has hers then, too. I sincerely hope you enjoy the book!
Kathleen -- so you're one of those angels I'm talking about, huh? I'm sure Lincoln will bring back memories!
Caregivers are absolutely amazing people. When my grandfather's dementia first began he lived with us and caregivers would be at our house most of the day. They were all so amazing because they helped us to see that even though my grandfather couldn't remember a lot he was still there and he still loved us. When it came time to move him to a care facility the caregivers were there again to help us. They made us feel welcomed and would always talk to us about how my grandfather's day was and how he was doing. Each day that we went home I always knew that we was being taken care of well. Even though my grandfather pasted away more than 3 years ago we still see some of his caregivers from time to time around town and they always recognize us and take a moment to stop and chat with my family. Caregivers are truly amazing people and I am very glad that other people feel the same way about them.
Jo- It's my birthday in October too! I always like to treat myself with a book or two. Plus since it's fall it's the perfect time to wrap up and read a good book!
Wendelin thank you for the very thoughtful post this past week. It has definitely brought back nice memories from a hard time in my life.
I hope everyone has a glorious week!
Kylie
Hi, Kylie! Thanks for sharing that with us. Since we went through our experience with Mom I've become aware of how many people either work with a caregiver personally or are the caregiver to someone. Even though it's tough to go through, it creates a bond of immediate understanding, which is nice.
You have a good week, too! See you next time!
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