Co-caregiving

Winter and the Future Moon

Sunday gratefuls: Sleep. Again. Still. Kate. Always. The sun. Also, always. A true divinity who gives life and warmth. God or goddess. My heart. Beating faithfully. My feet, meeting the ground, providing a stable base. My fingers, so familiar with this keyboard. My eyes. So much to see. My ears, even my left one who quit on me years ago. My tongue. My lungs. To whom I am sorry for having abused them in my youth. Even my now long gone prostate. You provided years of faithful service. All of it, working together, my body, my soul, my link to all.

Co-caregiving. Kate’s kind gesture on Friday night, taking me out for sushi, got the leetle gray matter going. Caregiving, as a word, has a one way dimension to it. I give Kate care. She receives it. And, that was the way I was looking at it up until Friday night. Of course, our love remains mutual and our partnership in our marriage, too. But the whole caregiving notion. Not so mutual. Not much of a partnership.

I buy, pick up and shelve the groceries. If there’s cooking, I do it. I fix breakfast often in the morning. I feed the dogs, take them to the groomers. I drive Kate to her doctor’s appointments. I call the insurance company, negotiate with the business office at Anova Cancer Care, see to the cars’ repair and maintenance. I do the laundry, pick up. Open boxes, move stuff from one place to another. And on and on.

And, I see none of it as a burden. None. Part of loving someone. Doing what’s needed. Always. That does not mean I don’t get taxed by it. I do, especially when I’m tired as I have been this week. I feel like I’m doing it alone.

I’m not. Kate is a co-caregiver. She supports me as I do these things with kind words, dinners out, understanding me when the stress boils over like it did last Tuesday. And, no, this is not a pretty papering over of a difficult situation. Her role is every bit as important. Mine has a large physical component to it which hers does not, but our mutual need for love and acceptance is key. Mutual.

This is, for me anyway, a paradigm shift. Caregiving is not one way; it’s mutual. If it’s not, the psychic load on both parties can get overwhelming. Being a passive recipient of care is difficult. Agency is one of the defining marks of our life. Until it isn’t. Not easy to bear its diminution, its outright loss. Shifting into new roles and maintaining them over a long period of time is also hard. There’s a learning curve. No bleach with the colored loads. Don’t forget toilet paper and napkins. About four minutes a side for thick ribeyes, but pay close attention.

Love picks up the burden and makes it a joy, a gift. We’re doing what we need to do for each other, just with a different mix of roles and responsibilities. The more physical caregiving cannot be shared, that’s the whole point; but the stress and the constancy of it can. A hug here. A kiss. A thank you. Helping the other to see when matters get too hard, when the stress nears its worst. How important? Critical. Necessary.

Co-caregiving. Of course there will be caregiving situations where this is not a realistic expectation: dementia, a chronic illness with constant pain, mental illness; but, in the majority of the ones I’ve known, co-caregiving is not only possible, it’s necessary.

Someone less thick than me might have come to this insight a year ago, two years ago even. There is, though, an element of shock, displacement, dislocation that goes with a partner’s sudden serious decline. That shock, if the illness or need continues, can turn to grief over what was, fear for what might be. I’ve experienced all of this over the last couple of years.

The shock and the grief have their own needs, often, at least in my case, obscuring insight. And, of course, the shock and grief applies to the ill partner, too. They’re having to adjust to a life much, much different than their normal one. The mutuality of the shock and grief, different, yes, but strong and demanding for both, can also obscure insight into what’s needed, what’s going on.

We’re two years plus into Kate’s Sjogren’s problems which saw her lose weight down to 77 pounds. She couldn’t eat enough to sustain herself. We’re sixteen months away from her bleed which saw a cascade of procedures, treatments, diagnoses, doctor’s visits. Lung disease and a blocked artery to her mesentery slowed her recovery. She’s better now, but far from well.

My radiation is long past. The Lupron continues. My COPD has proved manageable. I’m calm about my situation, believing I’m cured, but still uncertain. Summertime.

Things have quieted down enough, the shock and the grief mostly in the past, that we can see our situation more clearly. Co-caregiving is the result of that clarity.

Fumes

Winter and the Future Moon

Wednesday gratefuls: Debra Cope, who came by for dinner. Safeway for deli salad and the baguette. The E-collar that solved the Murdoch no come in problem. Kate’s advice in that matter, and in so many others. Gertie, who will not let up on being a rascal. Mike who put in a wall socket for our new microwave.

Exhaustion. Creeps up, miss a nap here. Have Gertie chewing on a box in the sewing room after leaping out of the bedroom window there. Murdoch not wanting to come inside. The constant Game of Rooms necessary to keep Kep and Murdoch apart. Also, of course, the long term stress of first Kate’s Sjogren’s and loss of weight, then her bleed, then all that came after. Toss in a dash of cancer recurrence and a soupcon of COPD.

Plain weary. Short tempered. Thoughts not as crisp. Ashamed of myself for not being able to reign in my anger. Not new. Anger is hard for me. It comes, rising red and proud, sudden. Pushing. Demanding release. I do not have the mussar attitude here, lengthening the pause between striking the match and lighting the candle.

Right now. Up. Tired.

Downsize?

Winter and the Future Moon

Monday gratefuls: Ruth and Jon skiing. Gabe peeling potatoes. Kate getting Murdoch upstairs. The picker at King Sooper. Having Sunday free of workout. Cleaning off my table. Organizing and preserving my paintings. Kate paying the bills. Ruth. Murdoch.

My paintings. Whoa. Like my novels and my blog. I’ve done, I don’t know, twenty/thirty paintings since I began. A few end up in the trash because I can’t bear to look at them. A few are standing out so I can look at them, review what I like about them, don’t like. The rest I put between buffered paper and/or cardboard sheets yesterday. Not sure what I’ll do with them. My novels exist in printed form in file boxes and in their revisions on my computer.

Two million words of Ancientrails rest on Kate’s old medical school desk, two thousand plus pages printed out with the wrong margins for binding. Sigh. Going to a bookbinder for an estimate and to be told how or if, if I decide to, I should layout the page for printing myself. Might give them a memory stick with all on it. Or, that might be too expensive. We’ll see.

Gabe stayed here yesterday while Ruth and Jon went to A-basin. I asked Gabe to tell me one interesting thing he’d done last week. I haven’t done much. I did see movies. Oh? Which ones? Lots of them on the Disney Channel.

Clever folks, Disney. They priced their channel, at $6.99 a month, so a kid with an allowance might choose to purchase their own subscription. Both Ruth and Gabe have a subscription.

Stirring inside. Declutter, simplify. Downsize. Example. When we moved, I kept every file I made for my docent work at the MIA. Why? Wanted to keep art as central to my life as it was when I was there. Tried several different things, none worked. And, having the files hasn’t helped either. Out they go. I also want to clean up the filing system (?) in the horizontal file which will mean throwing out yet more files.

The bigger, harder question? What about the books? Is it time to downsize my library? I’m considering it.

Doubt it will stop my book buying. That’s a lifelong habit started, I think, with those book lists from the Scholastic Reader (something like that). Sheets with books, descriptions, and modest prices. We could pay for them at school, then they would come at some other point. Sorta like e-commerce. Oh, how I looked forward to the arrival of those books. I read them quickly, too. I graduated to buying comics and paperbacks at the Newsstand downtown.

My first serious kick was all the James Bond books. I bought them one or two at a time with my paper route money. Lots of others, too. I was also reading books from the Carnegie library, too.

Got into the habit of buying books that interested me, books that followed other books I’d read. Buying books. College was hard in that I passed by the bookstore every day in the Student Union. If I went in, I’d always come out with a book or two.

Later, bookstores. Joseph had been in most of the good book stores in the Twin Cities before he hit first grade. And, finally, Amazon. Oh, right here in my own loft. On my computer. What a great deal.

Over 60+ years I’ve bought a lot of books. My interests have waxed and waned, but the books purchased during my enthusiasms remain. A few: Celtic mythology, fairy tales, Ovid’s Metamorphosis, magic, Jungian thought. An ur religion focused on the natural world, not scripture. Literature of all sorts. Plays. Theology. Poetry. U.S. history. the Civil War. Art. Lake Superior. Latin and the classics. Religion.

Getting rid of them feels like betraying my curiosity. I might finish that book on the Tarot. That commentary on the Inferno? Maybe next year? What about that ecological history of Lake Superior? The work on reconstructing, reimagining faith?

Still, it feels like time to begin paring down. Will take a while. And be hard.

For each of the tags listed here, I have a small or large collection of books.

Stick to it

Winter and the Full Future Moon shining through the lodgepole pines in the west

Friday gratefuls: for the Mussar group. for the Daf Yomi, now day seven. for the chance to do the Murdoch mitzvah. for the fresh new snow. for the 12 degree weather, what they call here, Stock Show weather. for Black Mountain who watches over me from above. for Shadow Mountain who supports me from below. for the crazy people who go out on Evergreen Lake for ice-fishing. May there always be crazy people.

Kepler to the vet yesterday. No, not bites and rips from Murdoch’s teeth. Rashes and hot spots. Antibiotics and an increased prednisone load for a week or so. Dr. Palmini has lost weight and buffed up. When I asked him if he would go to the Iditarod this year. The jury’s still out, he said. It’s a long time to be gone. But, it’s fun, isn’t it? Well, some of it, but when you get up at 3 am…? He goes as a volunteer vet for the sled dogs in the race. Lots of Iditarod memorabilia on the walls of his practice.

Back to HIIT workouts for cardio. Hi intensity interval training. A new one. Slow, 90 seconds. Fast as possible, 6mph for me, 30 seconds. Repeat four times then 3 minute cool down. I increased the number of intervals and the incline, from 1% to 2%, this week. Intervals are the best workout for cardio and they take a shorter time period that most cardio workouts.

Mussar. Got caught out nodding like I understood something that was said. Had to admit it, because the conversation expected me to say something about I’d already said. Everybody laughed when I told them. First time I can recall being caught in this oh, so usual gambit of not only me, but all folks hard of hearing. Gotta work on the ear wax thing. Seems to bother my hearing aid a lot.

The quality of the day, see Ruth Gendler’s The Book of Qualities, was perseverance. A lot of discussion, an amusing number of examples about math, not unusual in a group with literary inclinations. Perseverance is in my toolkit.

Mostly. I can write novels. Start and finish them. Not easy, often taking over a year. I did not persevere so well with marketing them, though. I enjoy, as I said a few posts back, long books, long movies, long tv series. I can start all of these and finish them. Think War and Peace, Dante’s Inferno, Spenser’s Fairie Queen, Faust, Romance of the Three Kingdoms. 10 Commandments, the Irishman, Gone with the Wind. And, Resurrection: Ertugrul. I’m finally in the fifth and last season. It only has 88 episodes.

I can make a commitment and stick to it for years, a lifetime. One of my youthful commitments was to keep reading difficult material. Stay political. College. Keep asking the fundamental questions and don’t shy away from difficult answers. Never work in a setting that compromises your values. Kate, now for over 30 years. The Woollies, about the same. Joseph, now going 39 years. Exercise, since my forties.

When I didn’t persevere, marketing and college German being the ones that come to mind, it was out of fear, I think. Fear is not a guide, it’s a caution, but I let myself get stuck in its glue at least those two times and I regret it. Anxiety grows along with fear and fear increases the anxiety. As I’m learning to be easier with myself, I’ll give myself an “I’m sorry to hear that, but you’re ok now.” bit of self-talk.

Rocking my inner boat

Winter and the Full Future Moon (98%)

Thursday gratefuls: for the Geek Squad guy who came to install our microwave. for his calling out an electrical problem. for Altitude Electric for coming next Monday. for the Geek Squad coming back next Saturday. for the first session in the Human Narrative, the Kabbalah class using Art Green’s book, Radical Judaism. for Zoom which allowed me to both here and there. Bi-location!

Kate and I have been doing sixty second hugs. As Paul Strickland mentioned in his review of a conference he and Sarah attended. What a great idea! We hug anyway, but often short ones. Sixty seconds encourages intimacy. More intimacy is welcome.

Also, we’re dancing with zero negativity. Same conference’s idea. For us, a real challenge. Not so much because we’re negative toward each other, but because both of us have minds that veer easily toward the critical, the analytical. And, we both know a lot so challenging each other’s conclusions comes with breathing. Still. I know where this concept heads and I would like to get there. So…

I describe myself as a neo-pagan by which I mean that my faith is located in this reality, not in some other, supernatural place. And that my faith reads revelation first from the ur sacred text, the book of Nature. This does not exclude other sacred texts as sources of wisdom, inspiration, even revelation, it places them second to seeing what you’re looking at. (Casey Reams) Or, being mindful. Or, deep listening. Or, respectful touching.

It also means that I’ve backed myself into an interesting corner, or, maybe, an interesting geodesic dome. If the cosmos itself reveals the sacred to those who see, the sacred underlies the whole cosmos. If the sacred underlies, is within, permeates the cosmos, then the Kabbalistic notion of divine light, ohr, waiting for us in everything begins to make sense to me.

If that makes sense to me, then the notion of an underlying unity also can come into focus. Is that unity the shekinah? That is, the feminine aspect of the divine said by the Kabbalists to constitute this material world? Not ready to go there yet, not sure I want to put a label on it. But, the idea of the shekinah does work for me at the level of analogy, metaphor.

Challenging. Rocking my inner boat. Yes.

Cook, Do Laundry, Shop

Winter and the Future Moon

Sunday gratefuls: Kate’s better breathing last night. Our money. That stuffed green pepper recipe. Being able to communicate with Joe, Mary, and Mark so easily in spite of the thousands of miles. The guy who brought out my King Sooper Order. The dark of night. The light of day.

Having Murdoch here. Has made things more complex. Kep and Murdoch cannot be in the same space. Kep and Gertie can’t be together outdoors. Rigel and Murdoch sleep together now in the dog room, aka the guest room. I believe it’s better for Murdoch to have a warm body near him since he slept with Joe and Seoah. Can’t prove it, but it seems to help.

Means I have to have dog management on my mind all day. Like having toddlers. And, like having toddlers, it’s both fun and exhausting.

Speaking of sexism. Oh, I wasn’t? Well, let’s start right now. Realized that my tension between the domestic work I’m doing and the work that expresses me was due to unexamined sexism. Domestic work is work done by women. Perhaps not quite as much any more, but studies show women still do the bulk of home related work.

The man came home from the office, tired from a day at real work. He expected a meal on the table, a clean house, well disciplined kids, a full pantry, clean laundry. He expected it. That it involved real labor, of the back straining, calf tightening sort either didn’t occur to him or he didn’t care. After all…

I transported that same attitude to my own home work. It was something to get done with so I could back to the real work. No.

Chop wood. Carry water. The sacred is found in ordinary things, ordinary activities. Especially those done out of love. When we look at home work this way, it might be that the valences reverse themselves. Home work, done from love, is the real work and the work done for money, or for ambition, or for self-expression is a lesser work.

Yes, some men work out of their love for their family, true especially in blue collar homes where the work itself is often onerous, repetitive, and unrewarding. But white collar men often work more for their own ambition, for the money, for the status as they do for love.

Meanwhile the work of cleaning dirty clothes, shopping for groceries, paying attention to meals for all the residents of the home, cleaning the house itself, raising children, staying up to date on what needs doing in the home was seen as routine. Necessary, yes, but ordinary, not noteworthy.

I harbored these attitudes. After all these years. And turned them on myself when I got into the position of home worker. Shame on me.

It’s still difficult to settle into cooking, to doing the laundry, shopping, straightening things up, taking care of the dogs as more than chores. To learn, in the Zen way, how to chop wood and carry water. I’m grateful to have this chance to learn in a whole body sense what my mind concluded years ago, but didn’t communicate all the way down to my preset assumptions.

Samain and the Gratitude Moon

Friday gratefuls. Deb and Dave at On the Move Fitness. Seoah’s life joy. The inventor of kettlebells. Treadmills. dumbbells. Television. The transformer. The circuit board. The CPU. Software. Sputnik. Laika. Koko. Any random elephant, giraffe, lion, hyena, rhino, cheetah, zebra, hippo. All of them.

Back to the future. New workout from On the Move. Stepup. TRX pushup. TRX row. Kettlebell one arm shoulder press. Quadraped with a three second hold. Reverse crunch circles. Bridge hold. Step and hold, balance. Deb recommended high intensity cardio for the COPD. Did them up until the radiation started in June. I’ll get back to them, slowly.

She pointed out that the COPD will make me feel fatigued. Oh, yeah. Sarcopenia from aging and sarcopenia from lupron, too. No wonder I’m feeling like that guy on the back of the comic book. You know, the one getting sand kicked in his face? Not much to do but keep exercising, wait for the lupron to drop away. Maybe June of next year.

The Mayans considered the last 5 days of the year as useless days. I used to take that week and do a research project on something of interest to me. Now I’m going to expand that time to December and this year I choose painting. I will poke around in color theory, mixing paints, continuing to paint using shades of intense blue as background. Composition, too. I’ll take Ruth to Meiningers art supply store. Might pick up some new Princeton brushes, some new Williamsburg paints.

Then, there’s the issue of the next decade. The 20’s. Whoa. I’ve lived well into the future. But. Where’s my time traveling Delorian? My transport portal? My brain implants? Why haven’t I met a cyborg yet? You know, like from this year’s Blade Runner.

For the first time I’ve considered whether I’ll live out the decade. Hardly impossible. I’d just have to reach 83 and I know two guys that have already made that or very close to it. Frank’s already there. Bill will be on April 8th. But, who knows? Of course, dying is always possible, but with cancer and copd, my clock may have sped up.

If I knew I would die in the next decade, what would I do differently? Anything? Not sure. I’d like to travel more. See more of Colorado. Make it to Taipei and see the National Museum. Paint more. Write more books. But I already do those things. Love more. Laugh more. Again, not new. Maybe it will be the proportion of those things. Or, maybe something new will appear. Whatever happens, it will be the 2020’s! Buck Rogers time.

Tears

Samain and the Full Gratitude Moon

Tuesday gratefuls: The Geminid Meteor Showers, peaking on Dec. 13th. Kate. Always Kate. The cooling as we move deeper into December. Chickens and their eggs. Seeing, really seeing. Colors. Especially dark blues. Princeton paint brushes. Glass. A wonder on its own. [after finishing this. Lupron.]

As I wrote before, lupron clouds the source of my feelings. Here are three things this week that have moved me to tears.

  1. Most recent. Reading about the North Dakota capital’s county commission voting to continue admitting immigrants. Compassion trumps Trump.
  2. The videos of women singing the rapist is you (see video below) in protests across the world. Claiming your own power makes you powerful.
  3. A dream I had the other night in which my mother hugged me.

People coming down on the side of compassion instead of cruelty. My heart stands with them, wherever and for whatever reason. Right now the North Dakota vote says no to humans in cages, to separated families, to the cold hearts and small minds resident in the White House. When humans act like humans, I’m shaken in a good way.

Empowerment, especially taking back power stolen by the patriarchy or whiteness or greed, reaches deep into me, makes me feel glad. Over againstness in the name of women, of people of color, of the poor is a sacred duty, a holy duty. When an oppressed group faces off against their oppressor, my heart sings, overwhelms me. Bless them all.

My mother died 45 years ago, her yahrzeit is in October. Since then, I can recall no dreams of her. I must have had some, but they disappear on waking. For the first time I remember in those 45 years, I dreamed of her. She was mute, curled in an almost fetal position, but awake and aware. She hugged me, smiled. I felt her warmth and her love. Her physicality.

She lay in a position very like the one in which I last saw her. We rode up together in an elevator for a surgery that failed to save her life. She was on a gurney. Her eyes looked away from me, but I could tell the stroke had made that the way she could see me best. Her lips moved and she said, “Son.” The last word I ever heard from her.

Tears come as I write this. The power of feeling her close to me, of her hug, so long gone. A dream long suppressed or repressed.

It felt to me as if the grief of her death had finally come to resolution, as if she were forgiving me and blessing me. Forgiving me for living on. Blessing me for living on. Breathtaking.

Maybe the lupron does not cloud the source of my feelings. Maybe it opens me, flushes out excuses I give myself for not being moved.

A confusing time for me. But. Not without its merits.

Impeach

Samain and the Gratitude Moon

Monday gratefuls: Facebook. Yes, I know how evil it is, but I love it anyhow. Keeps me up with friends from faraway-in distance and time. Internet. Wow. Keeps on enthralling me (literally [sigh] and figuratively). This desktop computer that works. Always. My handheld computer which I rarely use as a phone. Electricity, whether from IREA, our solar panels, or our generator. And, by free association, Nicholas Tesla.

I’d like to apologize to all of you who read this about my near constant airing of my existential crisis. Must get old, but it’s on my mind. This is an online journal, meant to be an airing of what’s up, what’s current in my life and thinking. Not trying to be commercially friendly. Still, I like readers, so I hope I don’t lose you to the scattered thoughts about this guy’s attempt to grab hold of life. Again. And, again.

So. Whaddya think of this impeachment thing? I don’t know how to read it. Impeachment will happen, I’m sure. Removal from office will not. I’m pretty sure. In that case will we have accomplished anything as a body politic or will we have (or, have we already) baked the Trump bloc into our lives?

The separation of powers is, to me at least, sufficient reason to have proceeded. Congress needs to reassert its fiscal, policy, and military roles against an increasingly imperial presidency. Which, if we’re to be honest, Obama did a lot to nurture, too.

The shifting stances of the propagandists who want to keep Trump in office are not as friendly to democracy as we need them to be. The Trump faithful, an unreasoned but strong cult, is strengthened, not weakened by impeachment; they are driven more into each others arms. DJT right or wrong. Political differences, yes. Political battles, yes. But a devotional attitude toward this guy, no.

Where does all this lead us? I come from the rust belt. I know its politics, its people. I’m one of them. Those of my hometown who follow the Trump are many, but not varied. They have lost well-paying factory jobs, now in the long ago 1970’s, and nothing comparable has replaced them. Their community, Alexandria, which thrived while General Motors had Delco Remy and Guide Lamp in Anderson (25,000 jobs), has become a wasteland of dollar stores, boarded up businesses, and many homes with deferred maintenance. Where do they find hope?

The children of my classmates, who’ve known only this depressed economy, have a right to their disenchantment. We’ve earned it as a country by ignoring their needs. Their parents voted Democrat, understood strong unions, but the day the factories died, so did their political will. Trump has stepped into their hearts and into their children’s hearts. He and his kind will not be easily dislodged from them.

Not hopeful about this at the moment.

Live Long, and Prosper

Samain and the Gratitude Moon

Sunday gratefuls: for the poetry and philosophy contained in the world’s religions. for not having to believe in them. for the intimacy and wonder of holidays. for deep thinkers and their ability to change our minds, to see what we cannot. for the pain and struggles that teach us what’s important and what’s not.

Seoah made a bulgogi soup last night. Delicious. Each time she comes I think, “I’ll cook like that, too.” Then, she leaves. And my cooking returns to its Western, American ways. I’ve added few Korean dishes to my repertoire. Maybe, over time…

Murdoch bounces around, happy and energetic. His teeth still have the pointy sharpness of a young puppy. He discovered the loft the other day, came running in, wagging his tail, rushing around, smelling this, then that. And left. He’s come back. He may join Gertie for longer time periods if he can contain himself.

Stanford University has a recent initiative, A New Map of Life. I like it because it recognizes the three blocks of life I call first, second, third phase: education, family and work, and the third phase. Not retirement, at least not the finish line model, but a new phase of life previously unavailable due to shorter life spans. And, as a result, one without cultural guard rails or guidelines.

Their approach makes so much sense. They want to to redefine, reshape the cultural paradigms for all the phases, not just old age. “Longer lives present us with an opportunity to redesign the way we live. The greatest risk of failure is setting the bar too low.” WP article: We need a major redesign of life. Dec. 8, 2019

Will investigate in greater depth and report back. I’m going through what seems to be an annoyingly long rethink of my own life. This is the fifth year (in 12 days) of our Colorado mountain life. It has peaks and valleys (hah) and they keep on coming.

Old age doesn’t seem to be the real issue for me though it plays a role. What’s more salient is the unpredictable nature of our daily life and the difficulty of getting into a rhythm for creative work. Health span is a key issue. Kate, though much better now than six months ago, still has occasional nausea, occasional fevers and fatigue, occasional heartburn, constant weakness. I have bouts of fatigue, muscle weakness, and general uncertainty added with prostate cancer and COPD.

Not complaining, observing what’s real for us. How do we build a mutual life that reflects and respects these difficult elements without capitulating to them? There is a disparity between us, too. I am younger than Kate by three years and though I have my own serious illnesses I don’t get derailed by them as often as she does from hers.

There’s a question of mutual life and its outlines and our individual lives. I’m admitting here that our answers so far have not been satisfying. It’s a project for both of us and it continues.