Caring for a parent, conversations, Dementia, Health care, memory loss

“Don’t Give Up, Don’t Ever Give Up”

It was Jimmy Valvano’s (beloved NC State basketball coach) signature quote. It has become my mother’s.

Mama’s brain is getting thinner and more full of holes, like pizza dough stretched too far to the rim of the pan. She reaches out to the edges searching for something to make sense of her changing world, while she makes less and less sense in my world.

She’s had her private aide on a search for Senekot, because the “generic Senna” hospice pays for—which as often as not she refuses to take—”doesn’t work.” (She refuses to take generic anything. People like her are why drug companies live large.) When Michelle finally locates some, Rebecca asks Mama if she realizes it’s extra strength. “Extra strength is less than two tablets of regular,” she throws back. “Nothing works if you don’t take it,” Rebecca tells her.

When she brings up the Senekot with me days later—the box still unopened on her table—I comment again on it being extra strength.

“That is what worked for me before,” she says, “and extra strength is less than two regular.”

“But you aren’t getting two,” I tell her, confirming that with the med tech when we pass her in the hall on one of our countless marches around the loop. “You get one every other day.”

“Well they gave me two today,” she says, “they don’t know what they are doing.”

“I just looked at the chart,” I counter; “you took one today and one two days ago that you refused. And are you going to the bathroom too much or not enough?” thinking it’s been the former for some time. She doesn’t respond.

When the hospice nurse comes Mama tells her the generic doesn’t work.

“There is no generic, Stella,” the hospice nurse tells her. “It’s made from a plant, and it’s all the same thing. And are you sure you need extra strength?”

“One extra strength is less than two regular strength,” Mama says.

Reading the bottle for credibility, not that credibility plays a role in the thin brain game, Laurel tells her two regular equals one extra strength. “And besides you aren’t getting two, you just have one every other day.” Mama just sighs and shakes her head, done with having reason thrown at her, exasperated that no one understands.

This week I notice the Senekot is still unopened on her table. Perhaps she lost that round, or forgot, or thinks she is getting it. But a note from Laurel the day before says Mama asked her to change the Miralax order from the half a dose she is getting every other day to a full dose. Laurel tells her it will take a couple days to get the doctor to change the order. I’m flabbergasted that Mama is making the decisions about bowel med changes, but Laurel doesn’t return my questioning email.

“What did you do this morning?” I ask when I arrive Tuesday. She tells me she spent too much time in the bathroom and having to call for an aide to clean her up. She doesn’t seem confused by the counter indications to her med change requests, but I sure am.

“I don’t know if it’s too much of a good thing or if I have ‘flu,’” she says. She said the same thing last week. That she has no other symptoms of a stomach virus isn’t worth a mention on my part.

“It must be hard to accept that you can’t make your body work like it used to,” I say.

She is silent. To suggest that some things cannot be controlled is unacceptable.

I follow a blog written by a hospice nurse. In a recent post she writes: “Tweaking definitions as you go through life are just a part of life. What is old, feeling good, or looking good, are all subject to life’s interpretations.” My mother has not bought into that; she wants everything to work like it used to, and she strives to stay in control of her body. She gets angry when a doctor tells her she is “doing great, considering her age.”

I’m reading “Life Reimagined: The Science, Art, & Opportunity of Mid-Life” by Barbara Bradley Hagerty, and find something intriguing. The author, a former NPR correspondent, writes about research that shows living a long and brain-healthy life, seems to be a result of one surprising trait. More than physical activity, happiness, relationships, healthy eating, education, financial status, doing crosswords and Sudoku,* it is having purpose in life that most consistency staves off dementia. The findings even extend to those whose brain scans indicate evidence of Alzheimer’s, but who show no symptoms.

I’m fascinated. My mother’s dementia is increasing, but she is 101. Although I have always thought the extent to which she has long gone to control all things was a little nutty—and exasperating—she has staved off dementia for a long, long time. Could it be that this has been her purpose? And as she has lost control of nearly everything else, and as other purposes—raising children, caring for my father, activism, keeping up with current events—have become unnecessary or inaccessible, has she has ramped up trying to control her health because that is left to her?

Far from trusting others to care for her and make decisions on her behalf, far from accepting that her bowels are not really controllable, she is not giving up her purpose. When she turns decision-making of this last holdout over to someone else, she is finished.

*I am not quoting this list, I’m on an airplane and the book is at home. I’m relying on my own thinning memory. C’est la vie.

5 thoughts on ““Don’t Give Up, Don’t Ever Give Up””

  1. I’m fascinated by that notion of ‘purpose’ being the thing that staves off dementia. In remembering several of your recent posts here, I can totally see why that would intrigue you about your mother. It really does make sense. ( And maybe that’s why my Dad is so devoted to his ancestry work. )I’m pretty sure purpose (something to do) is one of the grand essentials of happiness. Thanks again for ‘writing it out’.

    Liked by 1 person

    1. Everyone thought my father would die when he retired. His career was his life. He had interests, but he didn’t have time to develop any of them while he was working. Poor health began soon after retirement.


  2. As my mother lived her last year, we adapted to her changing body. I brought home my sewing machine to remake her pajamas as the waist was always too tight. She finely decided she could no longer tie the rail car to the second story on Thanksgiving week. If two medical supply companies, one was open on that Friday and delivered a bed. And came back with a potty chair before they closed for Thanksgiving. She always said moving downstairs would be the end. And a month after Thanksgiving on New Years Day she had her last lucid words. After asking for she was in pain, she said “No. I’m just mad”.

    Liked by 2 people

    1. All of my mother’s clothes are “too tight,” including incontinence pants. We cut the entire front out for her. I think an intolerance to the barest hint of discomfort–tight clothes, cold, pain–comes with dementia. Thank you for writing.


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