In this memoir piece I have a number of coincidences that give me comfort and awe.
Tim and I were stunned by this rainbow that appeared Nov 12, 2021 right where I do a little mom ritual every morning. You can see Tim got out his fancy camera for this one. A few hours later the nursing home called to say that my mom was unresponsive and I needed to make a decision.
What do these synchronicities mean? I have no idea. I can’t say, “This proves X!”
I’ve worked as a scientist long enough to be wary of data selection and cherry picking. But that cruel, fearful little what would the neighbors think voice in my head that warns me that others will see me being gullible and foolish has waned considerably over the decades. I’m just too tired to pay that voice much attention anymore. When I tell my understanding engineer husband Tim about what he calls my “spooky” dreams or coincidences, he gives me this serious look. He’s as skeptical as I am. “This is proof we are living in a computer simulation,” he intones gravely. Then we both crack up laughing.
I know he’s half-joking. He doesn't understand it either. I love that he supports me trying to figure it out. Tim understands the value of symbols.
I choose to let these synchronicities comfort me. I will choose to have hope even if I continue to insist that I have no idea what is going on around here at all. That’s the most honest thing I can say. My greatest hope is that my recollections will give others hope too. There is nothing wrong with having hope.
For most of my life rainbows held no special significance to me. Here is the story of how that changed.
My appreciation for rainbows changed with my mom’s death in November 2021. I later learned that my mom almost named me Iris. Iris is a messenger goddess of the rainbow. Why didn’t she name me Iris? Rolling her eyes, my sister Robin likes to explain to people that when we were born, it was the 60’s. You know, Robins born in the spring, Hollys born in the winter. So I became Holly instead of Iris.
My mom often gave pretty notebooks to write in. I toted around one with lovely Asian-themed prints through the halls of Moon Senior High in Coraopolis, Pennsylvania. To entertain myself, I wrote poems in it. Most of my poems were serious, but some some were my juvenile attempts at humor. I still have this journal. This where I wrote my first impressions about rainbows.
Like my teenage self, my first rainbow poem was quite snarky.
I’ll never forget being in some big school assembly. Bored, waiting for a forgettable presentation. On impulse I asked a friend sitting nearby what topic my next poem should be about. This provoked the following poem which, as you can see, set a low point for my rainbow interest. (It tickles me that I am writing this memoir on Nov 9th, 2022. And I see I dated my poem Nov 9th!)
EVERYONE writes about rainbows (Nov 9, early 1980's)
I questioned Dave what I should write about
In a moment of mental inaction
He cried, “Rainbows!—that’s what you should write about!”
Yes, ‘Rainbows’ was his first reaction.
But everyone writes about rainbows
It’s a subject that’s used overmuch
How they come about after the rainstorm
How they’re pretty (but trite!) and such.
Yes, everyone writes about rainbows
And thus they have lost their esteem;
I think only fools write about rainbows
For they just aren’t as deep
as they seem.
As I have with all my journals, I photographed all the pages so I can remind myself of what I once wrote. I love photographing pages of old journals, by the way, and recommend it. If you think about it, you probably take hundreds of photos of pets or children or trees. Why not 50 pages of a journal? It honors all your former thoughts.
It wasn’t until April 11, 2021 that rainbows began to have significance for me. That was when our dear tabby cat Fringes died. I started having many intense rainbow dreams after her death, all related to her grave and her dying.
Fringes was a highly affectionate, gentle tabby we had for 14 years. Like most of our cats, I found her living wild in our woods and I caught her with a humane trap. It was November and just getting snowy and awful outside.
I have for 30 years an unbroken record of taming all the feral cats I’ve rescued, but Fringes was not feral. She was lost and with her swollen teats, obviously recently pregnant. Failing to find her owner and failing to find all but one of her kittens, we first thought we would give her to a nice home, but she had such a sweet personality that I just could not let her go. Besides, we had already rescued one of her kittens, Neutron, and it seemed like mother and son belonged together in our house.
I’ll never forget promising that Fringes in November of 2007 that I would protect her and take care of her as long as I could. Her adorable son Neutron was one of those legendary loving and clever tabbies that stole the spotlight, but after twelve years his lungs filled up with tumors. After a few years of making him comfortable and preparing for his end, we tearfully euthanized him in October of 2019.
That left us with three cats. Besides Fringes, were two other feral rescues. Our solid grey Wilbur was generally morose in temperament, but he loved play fighting with Fringes. They joyously battled several times a day. I joked that Wilbur was Fringes’s personal trainer. She tended to be overweight and the daily play fighting helped her exercise.
Our white-socked tabby Cupcake was gentle and shy but craved cuddling with Fringes. Cupcake and Fringes held great cuddling marathons with Cupcake purring louder than any cat I have ever heard. Wilbur and Cupcake never got along. Both managed a wary detente, both depending on Fringes for play and cuddling. To lose the Fringes linchpin that maintained our cat harmony was unthinkable.
But in spring 2021, I became worried that Fringes’s eating was off. Normally quite the little pig, this was notable. Plus she had been vomiting a lot. I took her to our vet repeatedly to try to solve the problem.
I’ll never forget the night she crashed. April 11, Tim and I were watching some really terrible show on TV, and during a break I noticed that there were more little pools of vomit on a yellow throw rug. I followed the trail of these and to my horror saw Fringes’s tail poking out from under a cabinet. Only a cat in great distress would wedge herself under a cabinet like that.
I cried out and Tim came running. We could tell right away something was terribly wrong with Fringes. Sunday night, all the clinics closed. Of course.
“This is an emergency!” I cried out. My fingers trembled as I tried to call our vet’s emergency number.
Thank goodness our vet let us dash in to her clinic on a Sunday night. X rays. No clue. Fringes quickly grew cold on the metal examination table and was looking miserable.
It seemed her heart was failing.
After some horrible wailing on my part, I realized we had no choice but to euthanize her. “I promised I would protect you,” I sobbed as the vet patiently waited for me to give the OK. Fringes’s paws and tail grew cold as her blood pressure crashed. I gave the OK and howled with grief as Tim held me.
Only after Fringes relaxed in death could our vet palpate an obvious mass in the abdomen that had not shown up on X ray. Fringes likely had the GI version of lymphoma, the vet explained to us. With this tumor blocking her gut she had not been able to keep food down. There had been no choice. It had just been a shock that she went so quickly.
We buried Fringes under my grandmother Neva’s beloved St Francis with a rainbow array of sparkly balls. They came in different colors: pink, gold, green, silver, blue, red, white. Fringes loved to carry these multicolored balls and would present them us as gifts with a little fanfare of meowing. This habit she picked up after her son Neutron had died, who had been a champion at giving us cat toys himself. We were impressed she had acquired this new talent in her old age. She also went nuts for these Yeoww brand catnip toys that were shaped like rainbows and would spend ages licking them. So I buried some multicolored sparkly balls and catnip rainbows along with her and placed some on her grave.
Tim and I were in deep despair without Fringes some time after that.
Our remaining cats obviously grieved for her.
I wished and wished and wished every way I knew how for a Fringes Replacement in our house, to restore the balance.
Cat harmony is happily restored and here is a side story about that.
Tim, also a great lover of cats, was adamant that we keep the number of cats down to two to simplify our lives. I thought this was wise, but I felt bad that our two remaining cats didn’t get along. Both were lonely and grieving.
But we knew Cupcake likely wouldn’t live long. She had many health problems. Breast cancer, melanoma, a heart murmur, kidney failure, and high blood pressure. I even took her blood pressure with a tail cuff and used the readings to titrate her amlodipine.
We euthanized Cupcake in January of 2022. She joined Fringes under St Francis and just a few days later cat harmony was restored by our adoption of Booster Flare the kitten, a calico tabby blend.
Booster has many of the same unusual habits of Fringes. I’m certain that my mom, in her cogent years before her dementia would happily tell me that Booster was Fringes’ reincarnation. I can then picture telling my mom that I like that story but that I am skeptical and don’t know anything about how the universe works so I can not with any confidence agree with her. All I can say is that I like that story.
Like Fringes, Booster likes to hold her tail tip between her paws and lick it like an ice cream cone. Like Fringes, Booster likes to carefully peruse the cat toy box before selecting a toy to withdraw and beat up for awhile. Like Fringes, every time Booster is served chicken, she removes any chicken from the bowl and places it on the floor beside the bowl to eat. But only with the chicken, not with anything else. Best of all, like Fringes, Booster loves to play fight with Wilbur. A very energetic and enthusiastic play buddy has returned to Wilbur’s life and I feel that my prayers for a Fringes replacement have been answered.
But Booster has her own unique features that Fringes does not possess. Fringes was not much of a licker. Booster would lick the universe if she could. She licks us like a dog, and will lick the back of Wilbur’s neck until it is soaked. She mysteriously licks my pillow and when I go to bed everything is disturbingly damp.
Booster gives sparkly balls as gifts just as Fringes did, but she also loves to give us the more dramatic gift of cat wand toys. It’s dramatic because she drags these giant sticks up and down the stairs with a lot of clatter and then puts them on our bed with a look of expectation. We stop our reading to exclaim our delight and she looks pleased with herself. This is a trick I have never seen before in a cat, this wand toy presentation.
When I see Booster duplicating the unique moves of the cat she replaced, I’m bemused by the coincidences. I picture some nebulous pieces of Fringes’s spirit finding their way into this new cat, coming back to us. It’s a comforting thought. My mom would say of course it means something! That’s how my mom was. I loved my mom’s faith. I can only say is that honestly, I don’t understand. I choose to be bemused. A little awed, even. And all I can do is choose to hope.
After Fringes’s death, in my deep grief, I started dreaming comforting dreams of rainbow lights around Fringes’s grave. Something about her multicolored sparkly balls buried with her likely put that image in my mind. That’s when rainbows started to mean something to me.
Here are a few of my rainbow dreams which began after Fringes’s death. I love journaling my dreams and have been doing it for years. I recommend it. I just write down any little thing I can recall as soon as I wake.
April 23, 2021
Dreams. Early on there was a dream where I was lying on a wooden bridge which might have been over water, definitely near water, or a dock. Rainbow lights all over me. I felt peaceful. Again there was the sense of the entire world being rotated 180 degrees, but it was not a bad thing. I woke with one of my usual dream music themes, the root with the flatted seventh going back and forth in a syncopated rhythm.
April 26, 2021
I had this lovely dream this morning. I slept well and had many dreams but this is the only one I remember. Again, rainbow little things associated with Fringes grave. I realized after waking that her sparkly puffball cat toys were a rainbow of color and we put those with her when we buried her. Little multi colored balls with her body. So there is that association. It keeps popping up in my dreams as something positive.
I dreamed some sort of divine hand or authority offered me a kitten, and I said Oh yes please!! I was in beautiful garden with many many fountains, in the dream I thought of them as waterfalls but of course waking up I thought, no, those were fountains. With little streams everywhere. Robin too was offered a cat which she received, that was more vague. I saw my kitten playing outside, it might have been female, mildly fluffy, patchy colors. Vague. I had joy. There were multi colored little tiny balls or candies on the ground. Positive. I retrieved the kitten from its crossing over a patch of frozen water, ice, on the ground.
I felt happy waking up from that dream. I had nice dream music.
May 12, 2021
There was an image of a fall foliage forest, brown leaves, and the words like Core or something like that. Then the image of a young man, like a young teenage Tim with a full head of hair, a gentle smile and kind face, he had an old teacup (like one from Mom’s and Mike’s place) that had a rim that was chipped all around, the image of multicolored rainbow lights in conjunction with the rim. Vague. I had the usual dream music with the five notes going down orange red yellow blue black, the notes from G to C as usual.
May 15, 2021
Early in the night a neutral or pleasant dream where there were many small discs each different colors, like the rainbow, flat on a surface like coins, smaller than dimes, I have a hand held tiny vacuum device and am sucking them all up, maybe cleaning, with satisfaction.
The rainbow theme keeps going on in my dreams. I am sure it was initiated subconsciously by the image of the multicolored puffball cat toys we buried with Fringes. I will always associate her grave with rainbows. I woke with good dream music.
May 17, 2021 (I had just learned my mom would likely be moved from the lovely memory care unit to the more noisy busy nursing wing since she was losing leg strength and needed more handling on a two person lift)
I slept OK, though again I think it is the dread over mom’s move that fries the images out of my brain as soon as I wake. The only thing I can remember is once again rainbow colored buttons, they were threaded on several lengths of clear fishing line (like on Wilburs cat wand) about a dozen of the threads each about 3 inches long so it made a tassel, covered with multicolored buttons. I feel I dreamed more but the dread just fried it right out of my brain every time I woke.
I have to keep telling myself that if they move mom, WHEN they move her (it will happen eventually) I will make the best of it. For her. i will endeavor to make her life wonderful and not isolated in a little private room by herself all day lying in bed. That is what I fear.
May 18, 2021
I feel excellent waking. Wilbur is running in a frisky way around the house, I have not seen him do that since Fringes died, and it brightens my heart to see that.
I managed to get Cupcake to have a chemo pill yesterday. Again I mashed it the irresistibles treat. She ignored it for an hour and finally ate it.
I dreamed. Multicolored horizontally long triangles all sliding into each other, that’s it. A mild rainbow theme. Pleasant. I know there was more but I’m too stressed to let myself dig it out of there.
I just read a review article from JAMA on how sleep clears the brain of toxins. Feels like it.
June 4, 2021
I can never sleep with earworms. So I used my dream pillow, which plays music from my playlist softly without waking Tim. I finally felt like the music from my dream pillow, which is ambient smooth lined stuff with no real curly melody for my brain to latch onto, pushes the earworms away, that music became in my dream like a rainbow colored window. A portal. The rainbow coloring covered this feeling of a doorway.
I was being told to stop looking at the problem of mom’s death and dementia, because it wasn’t helping. To redirect my attention. And then I did feel better, relief, looking at the rainbow portal. The sense of someone on a second floor communicating to me, I was outside the house, on the ground level. The portal rainbow window as a relief, that music, wiping out the earworm music. The rainbow color became the color of one or two cards like tarot cards laid out for me, on a portable cooler like the one we took on our road trip. That’s all I remember but it was a dream of relief.
June 20 Solstice 2021
We found a cat toy inside the squirrel feeder today, a puff ball, blue. I believe that puff ball had been on Fringes’s grave. Tim thinks a squirrel, nesting or something, found it attractive and moved it. Yesterday I put Fringes catnip rainbow, which she loved to settled down and lick, I can picture that so well, on her grave. Today I added two sparkly balls, it looks nice with the pink geraniums. Very colorful, just like my dreams where I picture rainbow colors associated with her grave.
July 4, 2021
I thought once again that I would not remember my dreams, but thank god, could grasp a little snippet of something just waking up. I don’t know why that makes such a difference to me, but it does.
There was something about a spaceship, maybe mom was on a spaceship, I was being told that I had to wait for mom to evolve a new way to communicate, some natural evolution of some sort. I had to be patient.
Tim and I were outside with little yellow portable devices like headphones, I leave one in a bush, while I fiddle with something. Then retrieve them to go into a public building which has a steep flight of stairs with happy people going up to play, there is a room upstairs that I imagine is like a roller skating rink, but with a modern type of new shoe to roll in, and rainbow lights from the upstairs area are straying over the walls, like a disco, it is pleasant. Of course on waking I realize I associate the rainbow lights with Fringes grave.
Sept 1, 2021 (not a dream, but on searching for the word "rainbow" in my journals (otherwise known as cherrypicking data) I found a typical day with my mom I will share. I was doing this every other day with a sense of increasing panic that she'd get trapped inside the building once winter hit. Regulations preventing my taking her outside once the temp drops below some number.)
Tim and I had a business meeting cancel this afternoon so I chanced to see my mom again, wondering if she would be more lucid like yesterday. She wasn't bad, but not like yesterday. Alert, but not really following, less responsive. I spend an hour and a half feeding her a dinner, one tiny spoon at a time, when she opens her mouth. It is satisfying to feed her, but I am exhausted afterwards, and she is so stiff in her chair, I feel like I will break her if I try to get her to lean back and be at less of an awkward angle when I leave her with the resident crowd in front of their evening TV before bed.
So now I am curious about this weird melancholy I feel. I keep thinking I feel "tired". Not physically tired at all. Just tired. Tired of trying and trying.
It's impossible not to hope, which is stupid of course. But impossible not to. And I have this medical background, drug design and delivery, I put extras in her food like flax seeds and so on, it is impossible not to think, after a day like yesterday, oh, maybe I can reverse this a bit. There something about visiting her that reminds me of gambling. You keep going back to see if there is a win or something. Not that I have any experience with gambling.
I'm not terribly depressed, not like before. But just worn out emotionally I think.
It felt good to drop off our extra bananas at Scandia so the residents can have healthy food. I was processed by Nicole, but before me I had to wait for a large fat grumpy man with a mask to go through, and when she asked if he was vaccinated, he said no. Under my breath I whispered to Nicole, and I am sure it was too low for him to hear me, Why the fuck not?
He huffed off into meadows or woodview. It was creepy to be so close to an unvaccinated person. 6 feet. Then Nicole processed me, and she complained, saying that guy comes in every day and radiates anger at her. I’m sympathetic. “We’ve had more people die in one year than in all of World War II,” I exclaim. “I’m sorry you have to go through that,” I said to her. She seemed to appreciate that. She’s my buddy these days. I desperately need them at the nursing home. I often have the worrying sense probably unnecessarily that I am interfering, or causing trouble, when I am likely not. There’s just a lot of tension with regulations of course.
I found mom in front of the TV at 4, good to know they have her up at that time. I wheeled her to the tomato garden. That door is not as scary as I thought, the alarm is easier than others. And the area is sublime, with soft breezes and shade. Mom did seem to enjoy the area, was not very talkative, mostly I babbled at her as I usually do. I showed her the video of her talking yesterday, and when I said on the video, “Do you like being outside?” mom beside me answered “It’s nice”. Which was the right answer. So there was some appropriate responses. I need to be grateful for that.
Then wheeled her in, 4:30, dinner time, and the aides seem so happy to have me feed her. I am sure this gives someone a break. I see one aide sit at a table and they likely have to feed 4 at once, Vivian, mary, Mom, and maybe someone else. Vivian and Mary also need to be spoon fed. That’s gotta be hard!
Mom was served a plate of some sort of oriental looking stuff, wild rice, chunks of chicken maybe, mushrooms, plus a side of broccoli. Prune juice and milk. I can use the straw, but only if I pull it out after one little sip to prevent aspiration pneumonia which scares the crap out of me. She hates the prune juice, even if I put stevia in it. She had everything but the prune juice entirely. I sprinkled it all with a good tablespoon of flax seeds and even snuck in a tiny portion of sardines.
It’s work, but it is satisfying putting food into her. At the end of the meal she sighed and said, “Oh dear.” I think she was tired too. They often forget to give me one of their rainbow colored bibs, It’s like pastel pink and blue and yellow, and so I dirtied mom’s pretty blue sweater she was wearing. One fourth of every bite goes on her chest. Falls. It has to do with the timing of her opening and closing her mouth. I try to scoop it off her chest and get it back into her mouth.
I tried playing Colorado NPR classical radio but it was a bit frenetic. I keep thinking she would remember her old favorite station. I have to remember she said my name yesterday. Hoooo-leee. She said, staring at me. It made me gasp. How did she do that?
I tried playing Danse Macabre on the piano, from sheet music, it is tricky, when I came home. Now I have an earworm to give me insomnia, thank you.
I still have to give Cupcake chemo, she totally rejected the sardines last monday.
A short history of my mom's journey
Let’s back up in time to 2014. Fringes still alive and well, but my mom failing. I will never forget getting a phone call from her home in Glenwood Springs, Colorado, to my home in Door County, Wisconsin.
“The doctor’s say there is something wrong with my brain,” she said simply.
I remember gripping my kitchen’s marble countertop, reeling, trying to process what she was saying. Her word finding had been getting worse and worse.
No, no no, I thought silently, willing myself to be strong. Feeling my face contorting. Forcing myself to sound strong.
With my medical background, I spent the next couple years researching everything I could, all kinds of tests and treatments. We tested for everything, tried everything. Even a three-day lumbar drain in a hospital to make sure she didn’t have a treatable form of dementia caused by excess cerebrospinal fluid pressure (normal pressure hydrocephalus or NPH.) The neurosurgeon was hopeful this was the case. It was not.
It seemed more and more likely that she had frontotemporal dementia (FTD), which can start with word-finding problems, and then lead to an ALS-like loss of control over the body. No treatment for FTD.
Here is an entry from my journal in May 2014. My mom had just made her last cogent visit to my home in Wisconsin, from her home in Colorado. I was convinced after dropping her off at the Green Bay airport that it was my mom’s last visit to my home, ever, because she was clearly declining mentally. I was wrong that it was her last visit to Wisconsin.
dead tired after getting mom to airport we woke up at 4:30 AM
woke up 4:30 can't think straight
she's more sound sensitive than even me I noticed! She notices every sound. Too loud! Too loud! She often says, covering her ears.
I cried afterwards seeing her go up the elevator in her wheelchair in the airport
I miss her, even if it was a lot of work, like a child, I did not want to come home to see our house without her--as hard as it was taking care of her, she was a joy to have around.
She said she'd send me a sign if she had to die. Something only I would know that represented her. She'd be in touch.
She also said she was in me, and in all people around her, part of her anyway. At least she does not seem scared, or sad.
From trying to teach her how to do her cell phone, and seeing her try to do things over and over and having to remind her things, I see her short term memory is pretty bad. Not horrible, but definitely disabling. I had to cry for a while.
In 2015 I became her power of attorney long distance as she went into first a terrible assisted living, and then after she declined further terrible nursing home, in Glenwood Springs, CO.
As bad as these places were (I am talking about staff going to jail, medications getting mixed up, and violations costing these facilities hundreds of thousands of dollars of fines) she remained her perky optimistic self as her identity slowly melted away.
The clever, funny mother I loved became more and more like a radiant, happy infant as she lost her voice and her control over her body. I kept telling myself I was lucky she seemed happy, even as I grieved the loss of my cogent mom. Dementia causes you to grieve the loss of two people. The person before the dementia, and the person that they become.
She had often told me that according to the Dalai Lama, the purpose of life was “to be happy.” And how you couldn’t be happy while others are suffering, so this is not as easy a directive as it seems.
She and her husband of 30 years, my stepfather, deliberately divorced so that Medicaid could help pay the 10,000 plus per month bills for her dementia care. This cruel strategy worked. I remain beyond grateful to Medicaid for the six years they helped with her care costs, and sad this bizarre step remains necessary for so many people in similar fixes. My stepfather remained unwaveringly devoted to my mom, watching over her care with daily vigilance. He told me that they were still married to in spirit and he proved this. He called me every day, no exaggeration, sometimes several times a day, to discuss her care, long distance. Mike and I became the Judy Care Team.
This big-hearted man that my mom adored died after visiting her on Christmas Eve 2018, falling down concrete hospital steps and breaking his neck. They say it was instant. It shocked me more than I can say. But then there was no more reason for her to stay at this horrible nursing home where her partner lived. Strangely, his death almost felt like an ultimate sacrifice of love on his part. He agonized daily to get her into a better place. And his death enabled that.
We then moved my mom from Colorado to a wonderful 5-star (Medicare.gov gives very useful ratings online if you are curious) nursing home minutes away from my house.
So she did come back to Wisconsin after all. The nursing home even arranged her a few van visits to my home. In her new surroundings, she seemed dazed and happy and obviously unable to comprehend what was going on. The new nursing home staff adored my mom’s sunny personality and her tendency to break into song. Even through the pandemic, I was able to be as close to her as regulations allowed, visiting her regularly at her window in the snow with a battery heated vest, singing songs to her outside her window on the phone. There was no break in my caring for her thanks to the help of the nursing home staff.
The heartbreak of missing my stepfather and his care was mitigated by this blessing of being able to care for my mom so readily in such a loving place. I am pretty sure my mom had no idea where she was, but she knew me. Whenever I came into the nursing home, she would throw her hands up in the air and cry out joyously. I’d throw up my hands and cry out happily too. Wheee! We would say. It was her favorite word.
The staff came to anticipate this ritual. They loved it. They would crowd around to enjoy us saying our ritual:
WHEEEE! WHEEEEE! With our hands thrown up in the air whenever we caught sight of each other.
I had almost three joyous years with her. And then I had my rainbow day.
Here is my entry for Nov 12, 2021, which I will always think of as my Rainbow Day.First it will help for you to know, what I don’t write here is that for years now, I still have a ritual every morning where I put out compost in one spot in our woods. In that spot I always say a prayer for my mother and for the earth, my “greater mother.”
I always say these words to Nature as I put out the compost:
“Hello, my beautiful, ancient mother. This is for the greatest good of all. Which I can not picture.”
The most intense rainbow I have ever seen in my life appeared to arise from beyond that very spot that morning on November 12. You can see I am a bit scattered in my thoughts in my journal here.
Nov 12, 2:30 triggered Hospice for my mom today.
I feel oddly calm, maybe because she seems so comfortable and calm. I’m exhausted all of a sudden. We are in a private room at last. All this time I’ve been working up to pay to get her a private room because I wasn’t allowed in the “shared space” bedroom due to regulations. (eye roll) I guess dying can get you things.
I have no idea if this is the end or a blip. I’ve cried a bit, not a lot.
Tim and I both got the covid booster plus flu shot this morning, thanks to Walmart taking walk ins, no one else did, and right now I think I am getting the effects, hitting me, or maybe it is the mom thing, or both. Suddenly I want to collapse.
This morning I woke early, stretched, was amazed to see a rainbow, very bright, right over the lake in our back yard, seeming to be just a few meters off the shore, where I do my mom ritual every morning.
“Rainbow alert! Rainbow alert!” I cried, and I ran into Tim’s studio playfully. We took many photos and marveled. That rainbow now feels like a sign.
We saw a second big rainbow driving north from Sturgeon bay over the nursing home.
We were at first elated to be driving back, getting boosted, the shots (flu in the right arm, Moderna, half a dose as a booster, in the left) going, ready to go to see my dad in Pittsburgh. Ready to pack. Now I am not sure about this trip.
On the way home, Scandia called. I do the usual HOLD ON THIS WILL BE JUST NOTHING self-reassuring thought I do but it wasn’t.
It was Lori, saying mom was not eating today, and barely ate yesterday. That she does not hold water in her mouth and is unresponsive.
Oh shit oh shit, I kept saying after the call. Tim was driving, thank goodness. I had told Lori we were going to be right there. And on our way saw the rainbow over the nursing home.
I keep getting taken away. Robin called, we had a good talk. She seemed reassured I felt comfortable, mom felt comfortable. I told Robin about the two rainbows. First this morning, then one, did I say? AFter the Lori call, on our way to Scandia, driving north on 57, a rainbow over the area of Scandia north of us. A big one.
Mom was sitting in the TV area with soothing music going, it is still going, thank goodness, I am loving it, I can hear it through her door. I need it. New agey music. She had her mouth open and was mouth breathing loudly, her face relaxed, but blank.
If I were to guess, I wonder if she had a mini stroke. Her left eye, which has always been droopy, is almost all closed. Only her right eye occasionally brightens to look at me.
Patti came by, to say that mom might get dehydrated, not drinking, and I have a choice of taking her to the hospital and getting her IV fluids, maybe a feeding tube. Or I can do hospice. I had to choose.
I called Joe, (my brother who is an MD) who was good to talk to. Had him on speaker phone with me, Tim, Patti and nurse Lori. He helped me feel OK about not taking her to the hospital. I mean, she looks COMFORTABLE and that is what we want. There is part of me that thinks, People Frown on Last Measures. I don’t want to be Frowned on. But I don’t want regrets. I thanked him. What was sweet was mom definitely perked up hearing her son’s voice. Woke up a little.
I’ve been able to spoon a little water into her mouth with a straw, and she even sucked on the straw, and said a little agh, she always does, not liking plain water. It makes me laugh, that little agh she always makes with water. Patti gave me pink sponges for putting water in her mouth.
They swiftly moved her into a private room, room 100, it overlooks the tiny courtyard with a little glimpse of sky which is nice. Tim is here with me. I did let myself go home, give the cats food, had oatmeal, made myself pack to stay longer in her room, feeling in a daze. I brought my littlest harp and a suitcase.
Then I pulled a tarot card after we went home. I had the rainbow in my mind. I pulled a card with a big rainbow on it, the ten of cups, a happy card.
I have no idea if this is The End or what. I just feel tired and dazed. How do you prepare for the end?
It’s been years since I’ve worked in a lab but I still think of myself as a scientist. The only honest answer I have is I DON’T KNOW. Uncertainty. The trick is learning to be cozy with that.
Patti came in asking some bizarre question about whether mom should be sitting up because of the brain removal request. I have no idea what that is about. The Harvard Brain Bank. I don’t want mom to be cremated. But mom wanted that. I think it’s ghastly. Funny how I had that dream of a fire.
It’s possible this will prevent my traveling to Pittsburgh this week. Ironic. Mom always seems to interfere with my giving dad attention. That’s karma for you.
I think I am feeling the vaccines now. Just beat. Plus all this. I put on all the cat cameras to watch the cats at home at least. The only thing I think I want to do is journal. It felt good to do a little post on FB about mom hospice. People equate hospice to dying, but I realize that’s not necessarily true.
I had no idea today would be a Mom Dying day.
Now it is later, 4:30. I’m glad Tim is here with me. I did tell him it really helps for him not to ask me all these random questions unless they are really important. He seemed to get that. He typically babbles under stress which makes my head want to explode. I prefer withdrawing into deathly quiet when stressed. A pattern I am familiar with. I NEED quiet now.
He was asking me when mom’s mom died, did she have dementia (89, and no, other than sundowning at the end in the hospital which was normal given she was dying.) Blah blah blah. Then he shut up. Good man. Thank you. He is so supportive and loving. Mom adores Tim. Everyone does. After 20 years with this man, if he worst thing he does is babble under stress, I'm pretty damn lucky, I think to myself. Plus he's got the best metacognition of any man I've ever known. That's essential.
I got mom to swallow a tiny piece of mashed pear. I wish now I hadn’t eaten the whole rest of the pear but I was suddenly ravenous. I went out to the hall to ask if mom could try some soft foods, and Julie was dismissive, saying it was dangerous to feed her if she couldn’t swallow, they had to see if she can swallow, and she just seemed sort of short with me which wasn’t helpful. I can go home and bring back soft foods on my own. Patti said I could sleep here, though she sounded like it was not exactly regulations.
Now I just have a sour taste in my mouth from that interaction with head nurse Julie. It always feels like she wants to teach me a lesson. It’s tiresome. Sometimes I wonder if people just see how small I am and go, ah, good, someone to bully.
Now at home. The vaccines are kicking in bad. At least Julie acknowledged mom was chewing and swallowing when she came in again. But she seemed grim, saying the coughing reflex sometimes “goes away”. Oh god! I said. She got nicer after that. Julie has an edge and it does not help me right now. Mom ate all her plastic container of some sweet potato goo and half a mound of mashed potatoes and gravy. A quarter of her milk. It’s something. I decided I need to be home. Come back to feed mom breakfast fast as I can. Everyone is trying to communicate with me. I was deeply touched when Joe texted me:
You are a real healer, nurse, care giver and physician.
after I sent him a video of my feeding her. I was playing a CD that mom gave to me years ago. I love re-giving mom’s music back to her, thinking she would recognize it and like it. The refrain goes
I’m whole, healed, and healthy…something like that. Karen Drucker, Songs of the Spirit.
I had to take a hot bath coming home. I probably have a fever from the booster shot now. Just ate some food. We need to remember to pick up amlodipine tomorrow for Cupcake.
So I camped out in my mom’s room for a week.
Mom’s 84th birthday was Nov 15th, and I arranged two zoom meetings with family from her hospice room so they could at least see her.
Here is a dream from the night of Nov 15th from my journal:
I dreamed the message early in the night that my mom was 50 % gone already. Not negative, just kind of reassuring. (I told her this today, and said, maybe it means you are halfway out the door.) The image again of dirt with new sprouts just as I had the night before (that previous dream had trays of dirt and seedlings stacked that I was struggling to climb like a staircase). this dream last night had dirt where it belonged—in a field—and someone like a farmer who might have been me raking it all methodically + purposefully with a sense of INTENTION. Very early spring, a big field of just dirt, tiny little sprouted seeds, cold soil. Positive.
Two days after that, I was preparing to spend the night with her in her room, Nov 17th. I realized by then that her body really was shutting down. I felt like I had spent days just holding her hand and thanking her for being the most amazing mother I could imagine and telling her everything I could think of. Playing recordings of her late husband, her mother, speaking. Everything I could think of, I did, that I could. Video chats with family. Postponed my plane trip to see my dad.
Her passing was very peaceful. They came in every hour or so to move her, wipe her down, adjust her, and give her morphine.
We had hastily arranged some of her things from her former room in her hospice room around her but she didn’t seem very aware of what was around her.
As she died, I was holding her hand, and she was staring at a cartoon rainbow I had hastily placed on the wall, on which were the words
GOD BLESS YOU!
Under this rainbow was a photo of her younger self, with her beloved late mother Neva Daniel on one side and her beloved late husband Mike Wadyko on the other. Besides my own face, this would have been the last thing she saw as she took her last breaths late on November 17th:
More journal entries going forward:
March 27, 2022: I don't want a stupid ball
I keep thinking of how I wrote in my journal mom told me she would let me know when it was time for her to go, she would give me a sign. “Something only you and I will know,” she said. Was that the rainbow? That amazing rainbow on the day the nursing home called me? And how the hell does she get to control atmospheric phenomena? I am just so skeptical.
Yesterday I went out to get the mail. On my way back to the house I found one of Fringes catnip rainbows in the yard, in the mud, I had placed it over her grave as she loved it so. Some animal, maybe a cat (I hope they enjoyed it!), moved it from her grave and I put it back on her grave.
But mom never spoke of rainbows as being significant to her. Not a good enough sign, mom. How about a better one?
I’m like how I was at that picnic when I was a child, crying because I didn’t get any prizes because I didn’t win any races. A nice lady gave me a present to keep me from crying and my parents were so grateful to her. I declared after tearing it open, “I don’t want a stupid ball!” And I continued crying, inconsolable. My parents were so ashamed of me. In retrospect this story is funny of course.
I want a better sign. Keep trying, mom. I don’t want a stupid ball. I’m hard to please.
April 4, 2022
Today I saw I have one thing of moms that had been in her nursing home rooms over the years. She was so proud to have found it at a thrift shop, and I remember how she LOVED it, she put it in her assisted living room to decorate it at Open Gate in Colorado, what a horrible place, and how sweet she was to want to decorate her tiny horrid assisted living bedroom, oh, it makes my heart twist.
Anyway, it is an artwork promoting a book, When the Sun Rose, a children’s book it seems, by Barbara Berger, with a rainbow between two girls, one gold with roses and like the sun. Mom loved the image. I was buying her art therapy at that time in her life and she likened it to her doing art with her “teacher” as she called her, the counselor Kym Allison.
Now I think of mom and her rainbow initiating her hospice, all the symbols I associate with her, like roses and rainbows. I want it to mean something. The painting is sweet and makes me think of her. I love it. I have it over my desk now.
June 13, 2022
Spooky alert. Just looking through mom’s images! Whew. Well for one, I opened up one journal on my iPhotos of her’s, and the page was all blank except for a rainbow cast on the page where I photographed it, plus her words, just one sentence, “Holly, honor what you came into this life for.”
Just that. I sent it to Tim and joked I had no idea what I came into this life for. Maybe writing. That would be my first guess. And music. And science. Caring for cats, for Tim. For mom. All that.
Rainbows remind me of the amazing rainbow that appeared, almost like it was solid and not gaseous particles, in the spot I used to put out cat food and say a little prayer for her every morning. That one day when we learned she was not eating and needed a Decision. Nov 12 last year. When I saw that page, with that one sentence message, I broke down and cried, sitting at my computer.