6 May 2025
I realized I haven't kept you up to date on the week's events as I walked back from Goodwill down the hill where I went hoping to find a belt to replace the two that are frittering away.
It's hard to find a belt that lasts longer than a year these days. Real leather seems to have disappeared. I may resort to suspenders, I kid myself. There's always a solution, right?*
Anyway, yesterday and today are worthy of cognitive updates for Joyce.
Mainly, I'm hoping to see some stability so she can regain some ability to care for herself. That's probably too much to hope but the idea is to hope and never mind the inevitable disappointments.
I recall a story about some doctor who received a fatal diagnosis with a life expectancy, he knew, of only a short time. He engaged some care on the condition they treat him as if he were recovering. They both knew better and he died when expected but the days he had left were delightful.
We are, as a species, always trying to improve.
MONDAY
The mail for Joyce had a Medi-Cal welcome from Health Plan of San Mateo and another from Kaiser saying her Medi-Cal coverage would start in June. She shouldn't be enrolled in San Mateo's Medi-Cal at all and Kaiser's should have started on May 1 not June 1.
It matters because she has not only the Kaiser SNF doctor but her surgeon and debridement nurse and Memory Clinic doctor along with her long-time primary I've been in touch with lately. They almost all have authorized various medications and treatments for her.
I'm worried she'll be prevented from contacting her doctors all month, including Dr. Khanna at the Memory Clinic. HPSM, which is completely separate from Kaiser, wants her to pick a primary and set up a whole new team of doctors.
If you have dementia to begin with, this is simply cruel.
So I take photos of the letters and text them to Lauren the Social Worker, reminding her that HPSM is not an option because Joyce has to keep her doctors to maintain her care.
She promises to follow up but I don't hear from her again.
℘
WHEN I GET to Golden Heights, Joyce doesn't want to get up but she puts her Skechers on with no problem and dresses. I put her wheelchair in the hall (but Kevin moves it further away so she has to walk more).
She walks with Cassie but hangs onto the hand rail, which actually destabilizes her. When she walks with me, I hold the back of the belt like Cassie but I hold her left hand while she uses her right to hold the pole.
She refuses to walk to the stairs, which is just a few steps further than the chair, but sits in the wheelchair. Actually she isn't relying on the pole much as she walks. She could probably walk without it.
Except that walking (even standing up) terrifies her.
She goes up and down the stairs twice, hauling herself up on the handrails. Down is easier. She has a hard time lifting her legs to go up.
I remind myself we only have one handrail on both of our staircases and the one inside is too narrow for two people to go up or down together. So she would be depending on me to go with her on the outside stairs.
℘
THEN CASSIE TAKES HER into the gym, which is a little distracting, to do the MOCA test with her.
Subtracting seven from 60 and down completely baffles her (she subtracts 10 at best) and remembering five words takes some hints. But generally she does better verbally than with math. And drawing a clock still mystifies her although she did better up to the 6.
She scores about the same as last time, showing moderate dementia at 13 out of 30. She did better yesterday, frankly, on some of the orientation questions.
But she knows something is wrong with her brain and complains about it to me. I tell her that's what the medications are for and she's improving a bit. Keep trying.
℘
I ROLL HER to the hallway for lunch, which she doesn't eat. Again, I have to ask at the desk for a Boost because the nurse's cart doesn't have one. She does drink that.
Then I help her brush her teeth.
It's such a nice warm day that I roll her outside where we get some sun for 15 minutes or so. We see her across-the-hall neighbor Frank come out with his entourage and walk around the building from one entrance to the other. The RNAs Wendy and Neil are wearing sombreros for Cinco de Mayo. And laughing.
Joyce does enjoy the sunshine.
I take her back in for a ride around and then give her a shave and moisturize her lower legs which has spots of dry skin on them. That hurts a bit, she says. The skin was very dry.
After my own dinner, I remember to send the image of the MOCA test to Dr. Khanna and make some notes for tomorrow's phone call with her.
TUESDAY
Dr. Khanna calls at nine. She already read the MOCA test I sent. And tells me behavior is more important. So we discuss my notes on Joyce's behavior, which shows some improvement since the last time we talked.
That includes walking with the trekking pole, stair climbing and toileting.
I do point out that she's still scared, especially when standing, but not screaming quite as much.
So she suggests increasing the Lexapro from a half dose to a three-quarters dose of 15mg for four weeks and, depending on side effects, going to a full dose after that of 20mg.
Side effects to watch out for include diarrhea and headaches. And to keep an eye on her anxiety to see if it improves.
When I tell her I've gotten Joyce out in the car to the dentist and debridement and just a ride, she decides to schedule an in-person appointment for June or July.
℘
CHRISTINA HAD CALLED the other day offering to cut Joyce's nails so I offered to pick her up this time. Daredevil that she is, she accepted.
I've only been driving over roads I've memorized and it's been a while since I gunned it up Templeton to Alexander and her house. I tried to study the route on the Maps app but it just confused me because the route obscures the street names. Brilliant user experience.
So I relied on my memory. And did just fine, arriving right on time.
Christina is at Golden Heights just in time, too. Joyce broke a nail and demanded I cut it before lunch. Fortunately Christina was there to take care of it. My double vision makes it unsafe for me to cut other people's fingernails. I can feel my own fingers so I don't hurt myself but I can't feel someone else's.
℘
BUT BEFORE THAT, when I enter Joyce's room, she's visibly upset. She hands me an envelope from the business office that was just dropped off. It's the cumulative bill since February for $15,000.
The business office called me at home the other day to get a check but I told them I haven't received a bill. They said they mailed it twice, the last time on April 28. We confirmed the address was correct. And the woman said she would drop it off when I'm there.
Which would have been fine but dropping that bill on a patient with dementia seems pretty tone deaf. Joyce was crying. She had no idea how to pay it. And she worried what would happen to her.
I reassured her that I would take care of it for her. And I encouraged her to get dressed. And she calmed down. A bit.
℘
CHRISTINA SEES HER WALK with the trekking pole and me on her side, then climb the stairs, then walk to the bathroom in the gym and do three sets of 125 steps (250 steps actually) on the SciFit.
When we leave, I ask her what she thinks and she says right away, "One hundred percent." She's notice an improvement again.