(Cue the Brady Bunch theme song)
And a parent whose confusion grows each day.
With two sisters trying hard to keep her happy, one went on vacay.
While the other pitched right in to keep an eye out,
Mom began to wander and hallucinate.
Now two weeks on, two weeks off the sisters sleep there,
One comes from out of state.
Traveling sister – she’s a trooper! (To a level local sister never knew!)
Sleeping always on a black-hole of a mattress,
That was something local sister never knew!
Until one day local sister had to sleep there
And discovered travel-sister’s unsaid pain
A sleeping-surface update’s needed, pronto
Lest our local sister go insane.
Wait, so what’s going on?
According to the hospice assessment, dad probably has about six months, give or take. (Knowing dad, it’s “give.”) Meanwhile, mom’s dementia soldiers on, occasionally hopping on the Flexible Flyer and taking a little downhill slide. That’s what’s happened recently.
While I was on vacation and my ever-supportive sister was on watch, she observed mom in a couple of startling afternoon/evening/middle-of-the-night sundowning episodes that made her worry for both mom’s and dad’s safety.
When I returned, we did our usual debrief over morning coffee, and agreed that it was time for another transition. At this point, it really doesn’t make sense to introduce an overnight caregiver. Mom’s always been resistant to the idea of a live-in caregiver anyway, so if some “event” were to occur on their watch, it’s unlikely the presence of a relative stranger would be helpful, or even comforting.
A new year, a new plan
Thus we decided on a schedule: two weeks at a time for each of us to be there overnight. Less of an imposition for me, considering that I’m only a three-minute drive away. She, on the other hand, is a three-and-a-half to four-hour drive away. Thank goodness we are in lockstep on all of this. I can’t even imagine dealing with a situation in which siblings are in disagreement.
Night one. Thursday. I made the queen bed in the guest room, which my sister has slept in, every night of every visit for the past three-plus years. I made sure the vent for the heat was closed so I didn’t drown in my own sweat in my sleep. (Will I eventually get to the place where a thermostat set at 76 degrees – where mom likes it – seems comfortable?) Got my 10pm news station streaming on my phone, climbed into bed and SUNK. As in, my butt was measurable inches below my head.
I spent the next four to five hours trying to find a position in which I didn’t feel that I was about to be pulled through the mattress, in breech position, into another dimension. It didn’t work. It was like trying to sleep on a custard pie – a non-Newtonian fluid, defying the boundary between liquid and solid.
Probably sometime around 2:30 a.m, I bumbled by way over to the remote-controlled recliner we had bought to help my sister’s neck and back issues. Surely this mattress was the banana peel on the edge of the grave of her spinal health. The recliner was a marginally better choice for attempted shut-eye, and I limp-slept, fitfully and wakefully, for the rest of the night.
I texted her before 7:00 Friday morning to apologize for her past three years of sleep experiences here. Tim and I shopped that afternoon for a new mattress, which will arrive on Tuesday. In the meantime, I’m testing every possible sleep surface on the second floor in a desperate search for something that will afford better than 15 consecutive minutes of sleep.
The Zen of dementia caregiving?
By now I’ve become accustomed to applying the same “Zen” I’ve used to survive our ongoing home renovations to the experiences along the path of my parents’ decline.
I laughed the other day when I landed on the “non-Newtonian fluid” description of the mattress, but I’m realizing it really works as a metaphor for our caregiving landscape. Sometimes it seems that we’re on firm ground, but in the next moment, with one little change, everything shifts and nothing is solid at all.
I am so sorry you all are going through this. While I suffer the quiet and quick departure of my mom. I can’t say one is better than the other. I was so glad to see you and your sister. Sorry the circumstances had to be such. But I can’t say one way is better. I only wish I had the chance to care for mom and prepare myself for her departure. Just know I am here for you both, and if needed will come.
That means the world to us, Susan – thank you so much! I know exactly what you mean about one versus the other. It’s hardest on the survivors when it’s sudden and unexpected. As challenging as all of this is, as I try to be mindful through all of the ups and downs, I also try to appreciate that we have this runway and the constant reminder that nothing is forever.
Much as I’m distressed by what you say, I love the way you say it. Yes, unfortunately the trajectory of decline is neither coherent or predictable. You may find your Mom’s sleep cycle becomes reversed. “Zen” is undoubtedly the most precise and appropriate stance to take but vigilance during the night may become increasingly important. .
I’ve had back issues for years – old military injuries – and found the inflatable beds the most helpful. Indeed, since you are alternating with your sister these beds are ideal as two people may have significantly different preferences and these can be met with the adjustable air bed. Marco
As ever, Marco, thank you – for reading, for the compliment, and for your always-thoughtful replies!!
Having a helpful and immediate family to just be supportive is a huge blessing. The small bits of strength you glean from those little moments of acknowledgement and often ridiculously humourous circumstances will be enough to carry you thru.It’s a blessing in disguise that you will cherish but in the meantime very often as frustrating and exhausting as the hot place
We say it all the time – as long as we can keep laughing, we can hang on. So we do!!
Your experiences described here mirror my own with my parents, including needing a new mattress. The love and support of your sister and spouse is so valuable. We also did what was necessary with just love for our parents. One day this all ends and it leaves us sad. Love to you.
Thank you Nancy!
My heart ❤️ is open to both of you. I’m here and will be always available to listen, to help in whatever way possible. Love ❤️ 🫂 Diana
Sister of the Year award, I’d say. Although Daughters of the year might be more appropriate. I take in your stories with empathy and a sense of foreshadowing. It just plain sucks. Sending hugs and peace.
Sister of the year, indeed!! 😘
You have a saint for a sister and it is great that you are both in sync regarding your parents’ care. Loved reading this, Marcia.
Thank you Priya!!
Thanks Sis! This made me tear up. Always so grateful to you and our solid connection and humor and love reading your writing! And yay for new mattresses! Much better! xo
[…] to bed. I go upstairs. I read. I catch up on emails or social media; I fall asleep (on that new memory-foam mattress with cooling gel top!) with one ear tuned for the notification that will sound on my phone if mom opens one of the […]