Category Archives: Health

Tough

Ostara and Kate’s Moon

Saturday gratefuls: Kate’s clear head, her choices. Death with dignity as an option. The Ancient Friends. Rabbi Jamie. CBE. Sleep. Kep and Rigel.

Sparks of Joy: Sarah calling the Long Term Care folks. A Golden with his head out the window of a pickup truck.

I know about true love. And, about bad love. Kate and I lived and loved into each other, saying yes. Saying of course you can. Of course we can. In bad love you hear and say no, you can’t do that. I don’t want to. Not now.

We bring out the depth of each others soul. Kate’s needle gifts, her love of Mother Earth, Flowers, Vegetables, Dogs, Fruit. Grandchildren. Sons. My writing. My love for Mother Earth, Flowers, Vegetables, Dogs, Fruit. Grandchildren. Sons. Not hidden, not wished for, but acted upon.

Supporting each other, even when the world might not agree. Have 7 Wolfhounds and two Whippets? Sure. Put in an orchard? Of course. Go around Latin America. No question. Move to Colorado? Not only that, let’s go up in the mountains. End life on your own terms? Yes, if that’s what you need.

This ancientrail of human life may have come close to an end for Kate. She wants to consider death with dignity. I imagine she’ll choose it. Does it make me scream inside? Yes. Does it make me sad? Yes. Will I support her? Yes, as in all things.

This is stark. It means a time certain, not an ambiguous, drawn out process. But, the end is the same. And, it’s coming for Kate, as it is for us all. Just sooner for her.

I cried a lot last night. Sat up with friends talking. Then, slept well. No anxiety. This is sad. Not unexpected. No details yet. It’s not decided decided. But I know Kate. Once she broached this idea, her mind was close made up.

It makes sense to me. She was told she’d have to wear the bipap at least at night from now on. She hates it. It’s intrusive, invasive, and claustrophobic. There is no hope she’ll come off of it. Also, she’s exhausted from a two and a half year struggle with first this, then that.

She’s so frail, her breathing labored, her movement restricted to bed, mostly. No magic bullet. No procedure. No medications left.

What would you do?

Off to rehab

Ostara and the Ovid Moon of Metamorphoses

Friday gratefuls: Kate. Sarah. Nurses, techs, respiratory techs, Beth at case management, docs from New West. rehab. Sleep.

Sparks of Joy: A new class starting today with Rabbi Jamie. Kep and Rigel chasing the bunny all across the yard this morning. He got away.

 

 

Sarah has helped me get the Long Term Care application underway. I don’t do well on phone calls with people I can’t hear well, who expect precise quick answers to questions I didn’t understand.

Found myself saying, this isn’t my strength a lot this week. Phone calls. Putting in applications for much of anything. Assembling items like the new bedside table for Kate.

Sarah’s husband, Jerry, is the artist who painted the two large paintings that we have. He builds everything, from their house to a wine cave to a greenhouse and several interesting tables. Jon, too. Ruth, too. Me, not so much.

If you want an essay, a short story, a sermon, a novel, give me a call. If you wanna talk, have someone listen. Yeah. Provide nursing care or feed your dogs. That’s me. Organize to fight oppressive landlords, cool climate change, fund unemployment benefits. In my younger days, for sure.

Anyhow, nice to have help.

I’m dull right now. Too little sleep, even with Sarah’s aid. Too much concern about Kate. Too many trips in and out to the hospital. Too long in the saddle.

Kate probably goes to a new facility today, a rehab place that will work on her walking and on climbing stairs. I hope it helps her. After that, home with palliative care. Probably a week.

 

Kate. Me.

Ostara and the Ovid Moon of Metamorphoses

Monday gratefuls: Kate. Ruth, now 15. Gabe. Jon. Sarah. Anne. BJ. The Johnson/Olson clan. A survival knife.

Sparks of Joy: Ruth in her birthday tiara. The meal she cooked.

A stand for our honey extractor. 2011.

Gonna be a short one.

In today to see Kate and her docs. Sarah stayed the night. Beginning to discuss discharge for Kate. She wants to come home, so we’ll figure out what’s necessary for that to happen.

Even with two nights sleep at home I’m knackered, pushing the edges of emotional and physical exhaustion. Something has to give for me. I need a rest.

Contradictory movements, I know. Committed to figuring out a solution. I’m no good to her if I’m running on empty.

 

Easter Morning

Ostara and the Ovid Moon of Metamorphoses

Sunday gratefuls: Broad spectrum antibiotics. Kate’s will. Jamie Bernstein. Easter and Passover and Spring. Friends. Rabbi’s. Countryfolk. Mountains. Dogs.

Sparks of Joy: Kate’s blood cultures negative for infection. Exhaustion, but exhaustion held in the care and concern of so many others.

Kate at Mama’s Fish House

Been thinking, a lot, about the holidays: Ostara, Easter, Passover. How they hold the wonder and awe of Spring and apply it to our human lives. On Maundy Thursday (no, I never remember what that means) Kate was in severe crisis. She had a crowd of nurses, physician’s assistants, respiratory therapists, a pulmonologist. All working carefully, quickly, urgently.

I had a hushed conversation in the hallway with the physician’s assistant and Dr. Fenton, the pulmonologist, about resuscitation.  Asking hard questions. Trying to be true to the situation, to her wishes, to the possible.

She survived the crisis, her blood pressure down and her breathing more stable. She moved to the 10th floor where she could be treated with nurses who work with more complicated cases.

Her situation got better, but death still seemed as plausible as recovery. On Good Friday, her lucidity returned, she made it off the bipap (a small mask that is actually a treatment for the pneumonia, among other things), and her white cell count continued to come down.

Yesterday we found her blood borne infection was gone. Though it still needs a four to six week bout of IV antibiotics to make it sure it doesn’t resurface. She passed her swallow study so she can drink and eat. Prognosis still guarded, but less so now.

Her friend, Jamie, reported she looks good. Jamie stayed all night with her.

It’s Easter morning.

Kate: Friday

Ostara and the Ovid Moon of Metamorphoses

Saturday gratefuls: Kate. Family. Friends. All the staff at Swedish that care and have cared for Kate. The valets. Ruby, working well. Being able to retreat into the mountain vastness. Jamie Bernstein who will stay tonight with Kate.

Sparks of Joy: Ruth turning 15. Ruth’s caring and her actions-taking care of the dogs and the house so I could stay overnight with Kate two nights in a row.

retirement party for Kate

Far from over. But, trending in a better direction. Kate’s infection has responded to the antibiotics, broad spectrum, powerful. Her breathing is still an issue, but Dr. Nguyen thinks it will improve.

I’m knackered right now. Spent the last two nights on the visitor’s bench in Kate’s room. She sleeps better when I’m there and that’s pretty important to recovery. Plus, I can tell what’s going on.

Lot of driving in and out, but fortunately at least some of it is always in the mountains. So, not hard duty.

Gonna end with this. See you tomorrow.

Kate, Me

Ostara and the Ovid Moon of Metamorphoses

Thursday gratefuls:  Kate. Swedish. Infectious Disease docs. Dr. Nguyen. Jewish Family Services. Diagnostic tests. Nurses. The Mountains. Kep and Rigel. Friends and family reaching out. Sunny days.

Sparks of joy: Kate, even in her struggle. Second vaccine for me today.

Kate’s situation could take a turn, perhaps toward death, perhaps toward a somewhat better tomorrow. This infection, MSSA, could push her in either direction. If she goes to a rehab facility for the long duration IV antibiotics she requires, that might finish with her gaining some weight and having enough PT to walk on her own again. If instead she returns home with in-home health care in addition to me, I think she’s moving toward hospice care.

MSSA, in her weakened condition, and with her immune system hammered by both drugs and Sjogren’s, may prove too much for her. She is strong of will, though, and has pulled through worse in her post-bleed recovery in 2018.

Rigel

Rigel, our big girl, defeated MSSA, and has gone on to a full recovery. She was much stronger than Kate is now, however. Weird that we have it twice within the same year. Rigel’s illness was in August of last year.

How am I, you might ask? I told Marilyn Saltzman yesterday that I’m sad and joyful. I learned you can experience more than one emotion at a time, even contradictory ones. A deep and persisting sadness set in over two and a half years ago when I saw Kate begin losing weight, fighting against Sjogren’s disease. It got more profound after her bleed.

I’ve gone up and down with her health over that time, sadness a constant companion. A signal that I took her situation seriously.

Joy? Oh, yes. Often. When Rigel prances in from outside. When I write this blog. When Kate’s feeling better and we can talk, play cribbage. Each time my PSA is undetectable. When friends and family communicate. When the sun rises. When it snows. When I got my vaccine, when Kate got hers. When Trump lost the election.

Today. Sad. Waiting for news. At 6:10 pm I’ll be joyful as the second Pfizer vaccine hits my bloodstream.

 

 

 

 

 

 

 

 

 

 

 

 

 

Kate

Ostara and the Ovid Moon of Metamorphoses

Tuesday gratefuls: Diane and Mary. Margaret, nurse case manager. Kep. Rigel. Cremation. Death. Illness. Covid. Vaccines. April Fool’s.

Wednesday gratefuls: Kate. Swedish E.R. Hospitals and rehab centers. Friends and family. All of you, each of you. Sunrise. Pesach. Mountain Waste. The dogs. Also, always.

Sparks of joy: Margaret. Insurance. Vaccines. #2 tomorrow. Kate’s, April 17th.

Oh, geez. (imagine a Minnesota inflection here) Kate thought she’d stored everything she needed in the panels in our overhead fan. Nope. Just fan blades. She went in and out of hallucinations, delusions on the way, yet again, to the E.R. at Swedish.

Once there we waited a long time to be told, not sure what’s going on. They did admit her and she’s now in the hospital. What happens next? Not sure. Leigh Thompson, her doctor, Margaret, Kate, and I have all agreed to hospital, then rehab center. But. Get a call from Kate about 5 am. “I can come today.” Oh, geez.

This rhythmic pattern, hospital, home, decline, emergency room, hospital, home, decline wears on both of us. The idea behind the rehab is to get some weight and strength back so she can move for herself at home. Interrupt the pattern, or reset it on a longer amplitude.

Gotta workout now. Short one today. Catch you either later today or tomorrow.

My Sister, Rigel

Ostara and the Ovid Moon of the Metamorphoses

Monday gratefuls: Heart to heart with Kate. Sweet and sad. Rigel, her head on my pillow most of the night. Vaccines. Salivary glands. 45 Mar-a-logged out. 46 looking more FDR’y everyday. Grief in Boulder. Stimulus checks mailing on April 2nd.

Sparks of Joy: Truth spoken from deep within.

 

Rigel

 

Rigel. Dogged. After her multi-thousand dollar hospitalization last August for endocarditis, she developed a gimpy left back leg. She fell sometimes, tried to climb the stairs to the loft and got stuck. Once she made it up to my balcony on the second story over the garage, got part way down and tumbled the rest of the way. She is not a cat.

So. I have created a dog barrier at the bottom of my stairs. Two outdoor chairs placed together which I move going up and down. Sure, a gate would be better and I think Jon may have finished one. But. Covid. Someday soon perhaps.

This morning. I’m sitting here finishing my spark of joy. Woof. Woof. Woof. A deep bark came from out my chamber door. Quoth the Canine, here I am!

Yes, Rigel had moved a chair and climbed the stairs to come visit. Sweet, you might say. Really it was a treat run for her. I gave her one, went down the stairs with her, she navigated them with ease, and I altered my chairs to better guard the stairs.

She beat the endocarditis, prances and jumps, hunts for the critters that live under our deck and shed, and has made it into her thirteenth year. Worth every penny.

I’ve called the dogs family members for a long time, as do many. Only lately I’ve realized it’s not a paternal relationship; it’s a fraternal and sororal one. Kep is my brother. Rigel is my sister. We live in mutuality, Kate and me, Rigel and Kep with both of us. We take care of each other. Through good times and bad.

 

Same thing, said another way by Rilke:

Mother Earth, isn’t this what you want

To arise in us invisible?

Is it not your dream, to enter us so wholly

there’s nothing left outside us to see?

What, if not transformation,

is your deepest purpose? Earth, my love,

I want that too. Believe me,

no more of your springtimes are needed

to win me over — even one flower

is more than enough. Before I was named

I belonged to you. I seek no other law

but yours, and know I can trust

The death you will bring.

~Rainer Maria Rilke~

Considerations

Ostara and the Ovid Moon of Metamorphoses

Saturday gratefuls: Tough towels. Morning lucidity. Vaccines. Kate’s appointment today. Georgia GOP. No doubt now about their racist, oligarchic ideology. The Voting Law. Ditching the filibuster.

Sparks of Joy: Vaccine #2 on April Fool’s Day.

Gabe’s bris

Miracles in my world. The greening of the Lodgepoles. The leafing out of the Aspen. (both of these I’m anticipating) A Black Mountain decked in white. Iris rhizomes throwing up stalks for another year. (this, too, anticipated) Fawns. Calves. Colts. Life. Abundant and rich. Puppies. Dogs. Love. Mountains. Justice. Memories. So many, everywhere. Hallelujah.

Oh. Terrible night. Kate talking throughout the night, explaining her dreams to herself, she said. Lotsa lost sleep for both of us. Makes everything more difficult.

Contacted Jewish Family Service in Denver. They’re sending a social worker out who specializes in gerontology. With her we’ll develop a plan, perhaps, plans, that we can use to define our next year, few years. Housing options. In-home health care options. That sort of thing.

There are lots of services available but knowing which ones exist, which might come to the mountains, costs, is difficult. At best. Same with housing options including, but not limited to, buying another home.

Kate’s healthspan, lifespan are critical, but unknown. I imagine this will include some more time with Dr. Thompson, consulting. Mine are, too, but I’m the more functional at the moment. Dogs are a crucial element. Our stuff is less of an issue. We can sell or keep. My library can be sold in whole or in part. In that sense we’re portable. Except for the Dogs.

I suppose you could say, why didn’t they consider all this before they moved to the Mountains? Fair enough. We did give it cursory attention, but we both felt good, were planning for a healthier time than we got. Didn’t happen.

Shadow Mtn. Drive, down the hill a mile from home. Black Mtn ahead

Living in the Mountains is a big adventure for us, something we wanted long before we decided to move. I don’t regret it, not for a minute. Even if it seems foolish. Even if it was foolish. To lose a sense of adventure, of new possibilities, is to die before the grave.

We’ve had six years so far. A really long vacation in a place people come to from all over the world. Would I make the move knowing what I know now? Maybe not, so I’m glad we did it without knowing.

Rigel and a bull Elk in our back a day before my first radiation treatment.

My hope is that we will find a combination of home health care services that allow us to remain here. Moving the Dogs would be very difficult. They’re both older, Rigel beyond the expected life span of large breed Dogs at 12, and Kep turning 10 this year.

I’m still alive, healthy for 74. Love Kate, the dogs, our house, family, extended and birth, our CBE friends, my Ancient friends. I love reading, learning, writing, creating. Colorado and the West. The humid East. The Midwest. The Mountains and all of our wild Neighbors. Neither resigned to life, nor resigning from it.

Ready for this moment and the next. Here I come.

Gosh

Ostara and the Ovid Moon of Metamorphoses

Thursday gratefuls: Dr. Thompson. Salivary glands, even when swollen. Oxy. Yet more Snow. Ruby and her snowshoes (blizzaks). Snowplow drivers of Jefferson County. Sleep. Vaccines.

Sparks of joy: Kate’s #1 shot on Saturday. My #2 Wednesday.

 

Gosh. As the characters say often in Korean dramas. At least in translation. Yesterday. Physical. I’m in good shape, great shape for a 74 year old with cancer, kidney disease, and post-polio syndrome. Seriously.

Serious conversation with Dr. Thompson about our need to define a threshold for a move. What combination of things will lead us to say, yes, now? The idea of assisted living, for this mountain dwelling introvert with a several thousand book library. Yeeecccchhhh. Not to mention an introverted wife and two dogs. Not sure what the options are.

Buy a new house down the hill, a ranch style, no stairs. Co-housing with Jon. Independent living in a setting where there are phased alternatives. Gonna get together with a senior living specialist from Jewish Family Services, look at options. Maybe some live in help or regular home health care?

We’re going to investigate Kate’s long-term health care insurance, too. See what it might offer. Not ready for this, but then I imagine no one ever is.

Forgot to finish this.