These are real excerpts from my journals that surrounded taking care of my mom who had frontotemporal dementia. Journaling soothes me and, in some mysterious way, instructs me. I am hooked on journaling and have written out my impressions for the larger chunk of my 56 years.
I include my synesthetic perceptions, of course, because they are part of my every day experience.
Oct 3, Friday 2014
October is almost white. All O words are, but October gets tinged with my orange thought of Halloween (though Halloween is red because H is red). Combining creamy orange with the yellow 3. Pretty, an orange lemon cream pie. Friday is pale green. The thought that other people can’t see this feels lonely.
How can they remember anything?
Need earplugs because Tim makes long brown waves which match the color of his name, shouting on the phone downstairs. Vivid dreams sleeping late, till 9. 9 is golden, showy, embarrassing.
Whenever I have insomnia I have earworms. Every time. The solution for insomnia is to undo the earworms. I look in my brain and switch one color for another, with effort.
I went from irritated to serene. It helped to meditate with my shyest cat. She likes it. I did 20 minutes. Biofeedback told me I was scattered but it felt good anyway. I thanked Cupcake, who taught me to meditate in 2013.
Then, I had started with just 5 minutes. Focusing on her purr. I could have chosen other foci, more traditional things, like breath, a positive concept, a mantra. I’m a rebel. Cupcake’s purr saved my life.
Today I rushed to Scandia nursing home. I agonized over the waiting list form—what if they rejected her? Mike wants me to do this. Do I tell mom her husband wants this? Mike and I are co-conspirators. She, who refuses to call nursing home occupants residents. She calls them inmates.
I first had to head out the door to make the post office in time, but couldn’t find Tim. I guessed he was outside because Alby was staring longingly outside, she is so bonded to him, painting the window with her paws.
Walked around the house, calling, impatient. Finally I round the corner. Tim is right where I started, highly amused that he also circled the house. I was brimming with impatience by then. I tell him I’m rushing, late.
“Come see what I did!” he says, like my words have zero meaning whatsoever.
I’m used to this. You can’t run into my husband without him asking you to appreciate something he has done. You then must spend what to him must be a satisfactory period of time complementing him before he releases you.
“Can I look later?” I ask with the usual guilt. “Can I go?”
He says, looking benignly noble, that I may.
“Thank you!” I say. Realizing as I say that, I’ve put myself in the role of a child that needs permission for release. But when you tell him you are in a hurry, it has no meaning. But he has no malice. It’s his blind spot. It must be nice not to be aware of other’s distress.
Today I had, going to Scandia, all sorts of intense feelings. I had forged my mom’s signature on the form, probably OK. I have complete power of attorney. We won’t use Scandia unless there’s an emergency.
Something weird happened when I pulled into Scandia's parking lot.
An intense thought: I will be coming here daily. She will be here. This is what life will feel like, visiting her. Like a memory of the future. Spooky. Intense. It was almost like a swooning feeling.
The joy of sharing my Wisconsin locale. But ripping her from Colorado, her home, her friends and the guilt of that. And would Mike come? Mike can’t move. He must teach. He said he’d visit often. He adores mom. Thirty years together. But he asked me to get her on this waiting list, just in case. What am I doing?
As I sat in my car in the nursing home parking lot, I reflected on how the nature of life is to put you in so many damned if you do, damned if you don't situations. Even when you try hard to be good you don't know how. You can't be happy unless you know you are doing good, but how do you do that? Mom says the Dalai Lama said the purpose of life is to be happy.
But how to be happy with others suffering?
At that point of my bittersweet angst a bald eagle swooped down from the sky and circled my car in the parking lot of Scandia! Yes, a bald eagle, clearly. Jolted out of my worry, I felt reassured.
I went in, handed in the form. Shyly informed them that a bald eagle startled me over their parking lot. They looked surprised. They had not seen it before.
I felt so reassured by the eagle sighting. I phoned Tim from the parking lot, expecting him to be distracted. But he listened attentively. He must have sensed my distress. I told him later how grateful I was for his listening. He’s a great listener when I get his attention first.
By the time I got to the vet I felt serene. I’ll pay for checkpoint inhibitors for cat cancer, I grouse. She smiles sadly. She knows my background in drug design. Another client volunteered she has seven cats. "I have five,” I said. "You win!" I laughed. We had a moment of Namaste, smiling at each other, getting into our respective cars.
Serenity followed me into the Piggly Wiggly. Put the earplugs in for the background store music. I feel alien among a majority who appear to need mainly hamburger, danishes, vodka. I quell embarrassment carting my ten avocados and giant bags of kale.
I checked Bookworld again for that Nature issue. I can’t find that article on how GLP-1 agonists stimulate neurogenesis through fiber metabolites like butyrate. Then Shopko for kitty litter and a cat toy that no one likes.
Can I give mom butyrate to stimulate neurogenesis? It’s benign but stinks like rancid milk. Colon cells normally feast on it, isn’t that interesting? I would take it myself.
Tried writing yesterday, but Mike called, asking me to call mom. He worries, leaving her alone in the house when he teaches.
She spoke well, enjoying some Elizabeth Gilbert book from my sister. Reading fiction is good for her brain, I tell her. She finished Life of Pi along with me. Wow, we say at the ending. All my life mom has loved me through her books and so much more.
During yesterday’s meditation something happened. These funny images sometimes arise. They’re reassuring, I confess. After, I experiment, turning this about in my head. I hope something asymptotically approaches truth.
You’re confabulating, my inner scientist scolds. What would the neighbors think? I’m keeping my eyes wide open while I close them. Hah!
My impression presented this huge initial consciousness, a giant gem, sparkling. Then—big bang!—splintering. A purposeful shattering into zillions of glittering shards, each containing an element of the original consciousness. Every entity containing a fragment, longing to reunite, but separateness serving a function. Separateness brings diversity, creativity, adventure, stories, individuality, enriching the original jewel, feeding its beauty.
I’m not sure if I’m expressing this well.
I loved picturing this shard of consciousness inside me. It must know all about me, care about me, record all my memories, because it’s part of me. We’re all part of the same stuff.
Going to sleep last night, I felt blissful remembering this presence. I felt love for it.
Nov 10, 2014
I’m supposed to be on the phone long distance for mom’s appointment. She has been saying all summer this doctor told her she “doesn't have...the A-thing…” Alzheimer's. How many times have I told her, you can’t diagnose Alzheimer’s? Even a PET scan showing brain amyloid isn’t conclusive. Some people function fine with amyloidy brains. She always responds, “Really?”
I don’t trust this doctor. He put her on anticholinergics. Stupid! I got her off. Has he never heard of the Beers List? He got defensive when I questioned him. Mike agrees we should switch docs.
Last night I read New Scientist. About how typing vs. writing changes how we process information. Hand writing helps you retain information better. I kind of knew that.
Writing gives you license to make imperfect symbols. Like, many versions of A, but you don't see that with type. Of course A’s are all red to me.
Forty percent of synesthetes agree that A is red, in one study. I find that amazing.
I had a nightmare. Capturing my double fear of losing mom and Alby. Alby’s sarcoma is growing horribly. There were two bombs in our house. I knew the explosions would be enormous. I tried to put the bombs where they would not hurt anyone.
The bombs looked like white wands with large round amber and red crystals spaced on the ends. Tim had brought them home, carelessly. I asked him, what were you thinking? I went outside with them. Found a lake to throw them into surrounded by green grassy hills.
The other day mom was saying a river, which I dreamed about recently, symbolizes death. Really cheerfully, on the phone. She seems happy to talk about death. I’m not.
Yesterday I made myself go to the UU service, pleased that Tim joined me. Two times in a row! I joked I was pushing the envelope. It was warm and welcoming.
We had a moment of reflection, I was sitting there, one minute in my head and thinking about superficial things. The next moment I’m staring out the window at this lovely cherry tree with its red fruits in the cold, realizing:
BAM! Next Sunday I will KNOW.
Whether or not my mom could be helped with surgery.
And tears flowed down my face. Good thing we sat in the back. Anne handed me a tissue. Somehow I was not embarrassed. I was just grateful to be there.
I just emailed a woman I met who wants me to join this writer’s group at the UU explaining why I’m distracted these days:
I’m waiting for a conference call from my mom's doc in Colorado--her husband is a workaholic, busy, good guy, I am the long distance medical POA. She’s getting CSF fluid drained slowly over three days. If she improves, then brain shunt surgery might improve her symptoms.
Nov 11, 2014 BIG TEST DAY
Hard to focus. My synesthesia paints lumbar drain dark blue and brown, the colors of those words.
How can my brother write me that he didn’t know about mom’s chronic diarrhea? I’m sure I told him. Joe’s busy.
Anyway, Joe the “real” doctor will see mom soon. The only one of us with clinical knowledge to offer suggestions. Joe needs to know everything. Mom is grateful for Joe's arrival to her hospital, flying in from Spokane, and she is as usual telling me to be gentle with him because, she insists, he had a bad past life as an inquisitor in the Spanish Inquisition. Well, that would explain a lot, I say, laughing at the image. Privately, I think he's on some mysterious spectrum, like me, and given that, handling things pretty well, in his own way, with his very strict religion and very strict politics that helps keep everything more orderly and manageable. I understand that better than he can imagine, even if I don't understand his politics and his religion.
My thoughts swirl. Can she be checked for parasites? Are her well-meaning friend’s cookies full of sugar alcohols? I’m frustrated her diarrhea remains undiagnosed.
Her lumbar drain’s installed. Her doctor called. Tim shouted to me, startling me at minute 29 on my treadmill run— there’s no actual way he can interrupt me when I’m mid-treadmill without scaring the crap out of me—I request he flicker the lights signaling intermission. Don’t shout, “SOMEONE’S ON THE PHONE!” My lizard brain equates this to killer-breaking-into-house and I scream bloody murder.
The neurologist sounded kind on the phone, asking permission to insert the lumbar drain. I’m surprised they must, but I’m power of attorney. I asked the nurse to thank everyone there.
Tried recording mom using my phone, wanting objective measures of her speech. She paused before harder words, sounding happy, enjoying a nice window to look at golden aspens.
It’s howling snow in all directions here in Wisconsin. Not nice.
I told her I’m proud of her for being so brave. Call me anytime, I say.
Mike called. His thick, jet-black voice matches his M-name. He’s frustrated he can't get her to save prescription bottles so we can tell what she’s on. So grateful I weaned her off anticholinergics for insomnia and incontinence. Those increase dementia risk according to that German NEJM publication.
One year ago, I feared her husband was harming her somehow. Now, I know that was crazy.
Mike’s devoted to her. Their divorce got her onto Medicaid…it took a while to grasp. A heartbreaking sacrifice for Mike the devoted Catholic.
Still, that tiny voice that asks me, how do you know Mike isn’t doing something that makes her worse by accident? Giving her his sleeping meds? The tiny, unhelpful voice. The voice that remembers men can be scary and hurt you in ways that make no sense. I understand this voice. I thank it. It goes quiet. It’s only trying to protect, even though it’s wrong.
Last night I undertook printing out all of mom's email communications. The printer almost ran out of toner. I got all of 2012 at least. It felt urgent.
If it isn’t normal pressure hydrocephalus, I suspect frontotemporal dementia. Not Alzheimer’s. Her symptoms are more in line with FTD. I read a study that FTD might impair the default brain network, the DMN. If so, FTD puts you in the constant now.
Meditation sensitizes me to detect my DMN running. When I am planning, ruminating. A mode essential for survival. Without DMN you can’t function. Most people DMN too much. I feel joy switching it off, tuning into my senses. DMN is not bad. We need to balance DMN with being present. That’s the trick.
I try tapping into satisfaction after eating, relaxation after meditating or a good run. The taste of good coffee, a thin sharp line tickling my vagus nerve long after the drink is all gone. It’s like a second cup. If you don't work to dig into these feelings of satisfaction it won't stick.
Nov 12, 2014
Bad news. Can't stop crying. Don't know if I can write.
My synesthesia paints November an alien color, pearly-blue-grey, cold-lake-water reflecting metallic sky, my mother’s birth month. Grief color.
I emailed my sister.
Dear Robin,
I’m crying as I write. Mom wasn’t improved by CSF draining. A brain shunt won’t help.
I like your words. We might look back on this and laugh. Past obstacles seemed unsurmountable, yet we still laugh.
I knew she might fail this test. The path’s clear—progressive dementia. Nursing home, spoon feeding, all that.
I don't regret this test. I tried.
Now we watch her go downhill. Maybe there’s some relief in that. To stop trying.
This introvert made herself attend a Unitarian church. They rotate ministers. You met one. She married Tim and I.
Last Sunday I cried throughout the whole service. It was fine.
I joined a writer’s group. Community heals.
One meditation I try is imagining my future, wiser self, and talk to her.
Place your hand on your heart. Say, "It's OK, darling,” when grief surges.
Feel vicarious joy seeing happy children, animals. Flex that brain pathway like a muscle, often. That’s called Mudita.
Love!
The sun’s shining. I’ll go for a run. My digestion’s terrible. I can't think. It’s normal. Cortisol stuns hippocampal neurons. Movement helps.
Mike called with the bad news. Mom’s walking and talking hasn’t improved. The nurse confirmed this.
Grandma’s friend Donna visited mom in the hospital. I spoke to her, too. She’s bubbly. How? Is it Donna’s New Age convictions? How do I get them too? I’m jealous.
My inner scientist fears self-deception. It’s for a good reason. I idealistically think the perhaps unknowable Truth is more beautiful than any stories we create. That’s why objective measurements of what’s detectable are vital. To weave an accurate and often surprising model of what exactly might be going on around here.
Perhaps I’m foolish to think reality is a better story than anything we make up. My ignorance is my hope.
Mom spoke haltingly, sounding jolly. (Jolly is one of mom’s favorite words. So is whee!) Donna’s there, spinning tales of miraculous coincidences concerning my mom’s mom. “She’s here!" Donna proclaims.
I’m quiet. I’d never question another’s spiritual beliefs. Donna’s lucky to have them. What do I know? How is Donna happy? How can she not grieve? I bet she does. Her beliefs help her. I don't know how to do that.
Besides running, I set a timer to focus on anything positive. Call it prayer, meditation, contemplation, or high intensity interval training for the prefrontal cortex. Labeling contaminates it with cultural and religious associations that fit me poorly, a weird set of clothing.
Why don’t I call it casting a spell? I like that one best! The neighbors wouldn’t approve.
Whatever I call it, it helps. I see myself in a third party, constructive way.
I slept fitfully. Tim hugged me all night. I thanked him. What would I would do without my sweetheart?
Woke repeatedly with the big surge; when you wake and remember something’s horrible.
Dreamed of an eye in the center of my forehead, seeing red, the color of my name. Dreamed Tim spread out a blanket for me, I curled up cozy beneath it.
Mike called. No improvement. My last hope, crushed.
She sundowned last night, scaring the staff. Mike says she does that at home. I didn’t know.
Working up courage, I called her. I didn’t cry.
During our conversation I looked out the window and saw a bald eagle flying back and forth.
Donna says bald eagles represent Spirit.
Mom sounds happy. Didn’t remember sundowning. She complains, “Couldn't find...things to put in ears..."
“Ear plugs?”
“Yes.”
“My pockets are full of earplugs.” We laugh at my condition. Non-neurotypical. Sensory processing disorder. I’m not normal. I come in peace.
Mom thinks my lifelong synesthesia is magic. She doesn’t like my saying it’s likely insufficient pruning of neurons during embryonic development. I couldn’t live without it. I automatically involuntarily color code everything. It aids my memory. It’s not magic.
If it were magic I would heal her.
She got the headache I warned about. Her nurse confirmed no improvement, says sundowning’s associated with Alzheimer's. The A-thing. I thought she had FTD, primary progressive aphasia.
Maybe both. Common things are common.
I need to work up the courage to play harp for Scandia. Need to make connections. Find other mothers. Feel needed, useful.
Mom once consoled me, pointing to flowers. “I’ll be all around you!” she declared, after I asked how I would cope, losing her.
I don’t want flowers. It’s the old bait and switch. I want this mother, who shares New York Times book reviews and horoscope clippings with me even though she knows I don’t believe in astrology. You don’t believe because you have Virgo rising, she explains. That unique wry humor.
But motherly energy is everywhere. I must seek it out to rescue myself. Tim has motherly energy. So do my cats. I must seek the universal mother to heal. Mom is forcing me to do this. I want to stick with the one I grew up with, please.
Our hated autumn Door County mistral persists, winds howling continuously for days. A red, curly sound.
Our color battery is diffusing. In fall the colors are vivid and distinct. Every possible flower and leaf color, high contrast. A steep concentration gradient, which you find in all batteries that are fully charged, like ions on one side of a membrane. Then all diffuses to winter white, slowly. Then recharges. Over and over. Solar powered. I find this amazing.
Nov 13, Thursday, 2014
Grief surges off and on. Can’t do anything complicated.
Mom called this morning, sounding lucid. I heard the grief in her voice. She knew.
We cried together.
I don’t regret this test. Mom said she really thought she had hope, the surgery, and thought I had been overly pessimistic (halting over remembering that word she once taught me). She says I was right to be cautious.
Writing helps. I do simple things. Shopping.
The Shopko checker says, smiling, have a blessed day!
My reaction is mixed. Is blessed a secret handshake? Her sweet intent charms me. But I feel sprayed with her personal brand of Christian Perfume. I want to shower and scrub it off.
My head is recovering from the buzzing writer’s group woman on the phone. She is a Talking Person. That is fine.
In my slim history of close friends, including mates, I tend to pair up with people that do all the talking. How lazy of me.
Her extrovert energy rattles me. But she wants to read over my writing and have coffee. I said gosh, I should pay you, and she said no, that’s what we do for each other in the writing group.
One of Tim’s old friends said, casually, “Don’t worry, there’s drugs for dementia.” I wanted to smack her. Being a coward, I say nothing. She’s just ignorant.
But I seethe, long after.
Fourteen years in college and three advanced degrees tell me that the biggest failure in the history of drug development, which is my specialty, is for treating dementia. We got nothing, other than for Parkinson’s. France is delisting Aricept, they say it isn’t effective. It’s not very. Hundreds of trials, billions of dollars, monoclonal antibodies, most targeting amyloid, some tau, all failures. At first I thought, oh, we should target soluble amyloid, that’s the key. But no. I think we have been barking up the wrong tree for a long time.
Nov 14, 2014
Mom's birthday tomorrow. Happy birthday! You have dementia!
I’m wearing earplugs, blocking Tim’s dark-brown phone drone downstairs.
He wants to pin me in a lot of discussions about Alby's euthanasia. It should be soon. We talked it to death this morning.
Safe to remove earplugs now. One problem with wearing them is he sneaks up on me. Scares the hell out of me.
I need Tim to unleash his energy onto people other than me today. I’ll take on some. It wears me out. Then I feel guilty. I need time and space for my own thoughts.
I’m in deep pain.
Again I dreamed of two explosives. Very funny, unconscious. Mom and Alby. Both will explode. Who knows what the repercussions will be.
I sigh involuntarily, constantly. The depressor anguli oris pulling my mouth corners down ache. I tell these muscles: relax.
December 25, 2018
Mike’s dead. Age 70. A coroner called my cell last night. Apparently my stepfather, estranged from his own family, listed me as next of kin. I called my family in tears on Christmas eve. They first thought it was mom. I hear the of course in their voice.
NO! I say. MIKE!
I’m utterly gutted. Tim held me as I sobbed all night. Mike fell down cement steps after visiting mom, found in a pool of blood. No pulse.
He likely snapped the third cervical vertebra. Instantaneous, they say. It had better be.
I’ll miss those endless nagging texts, that black-grating voice, calling almost daily for four years discussing improving mom’s care in her struggling, bargain-basement Colorado nursing home where staff go to jail for negligence.
Medical staff advises: don’t tell mom. My first thought, too. Seems outrageous. But given her dementia, why repeatedly grieve a beloved thirty-year partner she can forget? Dementia could be a gift. Strange.
April, 2019
Strange, every time I pull into the Scandia lot. Remembering that feeling.
I will be coming here all the time.
It seemed crazy.
Mom’s in memory care at Scandia, happy. She lives in the constant now. A big, happy baby. Staff adore her.
She’s stopped asking “where’s my man?” Wrenching my heart.
She’s no idea where she lives. She doesn’t care. Colorado and Wisconsin mean nothing.
I manage everything. It’s a privilege.
Reading, writing and drawing are long gone. Her speech is terrible. Her expressions speak volumes.
I spoon food into her mouth. Eating’s a problem. She’s lost thirty pounds. She can’t walk. They use this human forklift, on and off toilets, beds, chairs.
She’s a five minute drive from my house. When I arrive, her face lights up!
She loves singing. We sing and sing and sing! I bring my harp. The residents are an easy audience.
This woman who can’t talk, walk, or feed herself is so constantly joyous. A lesson. Practice daily happiness. If we can just figure out how.
July 2020
I told mom that Mike died. Maybe it’s selfish. I didn’t want any regrets. I couldn’t keep her wondering. I waited long enough. With Covid, we orchestrate masked distanced outdoor visits thanks to the diligence of the wonderful Scandia staff. Meeting in the gorgeous light-filled garden. Separation enforced by two picnic tables.
“Do you know who this is?” I hold up a big photo of mom and Mike embracing.
Warm wind caresses us. Wind chimes sing.
“Of course I do,” mom says softly, her face clouding. Unusual for her to speak so many words so clearly all at once.
“Mike’s an angel now,” I say, firmly.
She nods. “I know,” she smiles.
And then my harp, which I brought, starts playing in the wind. It does that, but not very often.
Goosebump city.
Mom serene, smiling. Relief.
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