Caregivers make the decisions. Sometimes it’s a scary decision.
When we decided to call hospice to introduce palliative care into our journey and I wrote about it, my dad was a little upset with me at first. I think the reveal of this scary decision felt like airing dirty laundry, but it’s not, you know. It can feel that way because we are not as open about the scary decisions as we should be.
Part of my hope as I share posts about our feelings, decisions, and struggles along this Alzheimer’s journey with mom is to crack open those things that trap caregivers in boxes of shame, guilt, and fear.
Palliative care was the right decision to make for mom. The palliative team that came aboard with us eventually evolved into a hospice care team. We didn’t like needing it, but it was time. It was the right scary decision.
©Pennie Nichols. All Rights Reserved. 2023
A friend put the bug in my ear. Your dad needs to engage palliative care, a hospice service.
Hospice is a scary word. But like many other scary words —breakdown, burnout, crash, change, even death—, hospice is much more than our knee-jerk thoughts around it.
“We’ll come twice a week, check her vitals, talk to you (the caregivers) about any significant changes,” the palliative-care home-health hospice nurse explains. We’ll call her Alexa, a name that means helper (yes, I just learned the device’s name is another word for helper).
Mom qualifies for this hospice service by a thread.
“This is the best medicine regimen I’ve ever seen,” Alexa exclaims. Not because of the prescriptions on mom’s med menu, but due to the lack of them. She still mostly takes supplements. “I’ll be taking this over,” Alexa gestures towards the lists of meds, bag of bottles, and boxes pills.
I can tell dad didn’t ingest this information, so I ask, “You mean, you’ll take care of filling the pill planner?”
“Yes. We’ll take care of refilling prescriptions, fill the dispensers.” She has dad’s attention now. “All you need to do is supply the supplements.”
I see stress lines fall from dad’s face to the floor.
A blast of fresh air wafts across the table.
Alexa speaks to other things that have dad in knots, the morning and night routines, mom’s anxiety, the toilet issues. She suggests strategies and routines to shift some of the burden, then turns to look dad in the eyes, “… and this will help you keep your sanity.”
This validation is everything. Many caregivers, even when we remind them that we see them, feel unseen, bogged down in a lonely, difficult world, tangled in a never-ending darkness.
“Establish a routine and shift some of this burden so you don’t burn out.” Break down, crash…
Mom sits at the table as Alexa interviews us. I know mom is treading the surface of her Alzheimer’s listening with whatever shard of mind she can muster.
Alexa and dad avoid words like Alzheimer’s, hospice, and death. But mom, ever the athlete shuffling her feet on the court in anticipation (they won’t get the better of me!), hears enough.
“They’re taking my house.” The words don’t always travel in a way we can understand, but these are the words that haunt mom. She is solidly on the paranoia path, tripping over wild fears and falling into puddles of hallucinations. We honestly can’t understand what she’s saying when her paranoia winds up, but I know she’s speaking from these fears.
I follow mom from the table to the bathroom to help her. She pauses before coming out, “I have to wash my hands,” turns to the sink, flails her hands in the air, “I don’t know why I’m so nervous!”
Mom knows something important is happening today. Another scary change. Her fears rip through the shards in her head. They’re taking my house. They’re up to something. They’ll take me away.
The broken pieces of her mind don’t allow her to put the whole picture together. The absences when dad and I can’t be with her, the sitters who take our place, now palliative care.
I just want my people. She doesn’t want all these other people; all these changes are scary.
The sitters who keep an eye on mom and help with chores: mom is afraid they’re taking her home away. She doesn’t understand they’re here to help her stay in it.
The palliative care nurse who is here to tack down the details so dad keeps his sanity, so the sitters are empowered: mom sees another stranger plotting at the table with dad. She doesn’t understand this stranger is a teammate whose task is to keep mom safe at home.
Mom has seen Alzheimer’s play out before in three different ways:
- dad’s mom spent her last years alone in a nursing home.
- mom’s own strong mom declined, spending her last years following my grandfather like a feeble, lost puppy.
- mom’s aunt, another strong woman, toppled down the ladder of assisted living and senior care.
“I don’t want that!”
Terrified she’ll be taken away from home, mom can’t understand that she won’t, that all the scary changes in her home are steps dad is taking to keep her here.
Mom is an athlete, a hustler, go-getter. She’s adverse to the notion of decline. She doesn’t want to be lost or needy.
Yet here we are, at table discussing her path forward for her, because she can’t. She relies more and more on other hands to hold hers as she takes steps, other fingers to button and zip her clothing, other minds to make decisions. She doesn’t want this, all these helpers (I just want my people), and she doesn’t understand dad can’t do this alone.
Mom is strong and a long way from needing hospice for our knee-jerk mindset around this scary word. But we as a family/caregiver unit need hospice.
After a couple of hours at the table, Dad signs the hospice papers. Alexa takes mom’s vitals, talks to mom with charm and love.
Mom won’t understand, but maybe she’ll feel the goodness of this change, the fresh air of relief that lifts her people, the ease that replaces the lines on dad’s face, the new routine that keeps her at home.
©Pennie Nichols. All Rights Reserved. 2021
For more posts about mom’s Alzheimer’s journey, go to Alzheimer’s Bull.
To have accidental blogs delivered directly to you, click here.
To subscribe to my Newsletter 14, click here.