One of my favorite Mark Twain quotes is “Eat a live frog first thing in the morning and nothing worse will happen to you the rest of the day.”
Well, I should have eaten that frog this morning. However, the disaster happened before breakfast, while I was fixing Gary’s oatmeal. Poking around in the pantry for something (I put lots of goodies on oatmeal, including brown sugar, raisins, blueberries and cream), I knocked a bottle of soy sauce onto the tile floor–and the mat for the dog’s dishes.
Junior, of course, wanted to lick that salty, umami splat, and I had to chase him away because it was full of tiny glass shards. Even my pink sneakers were splashed (they’re in the washer now).
I finished fixing the oatmeal, cleaned up, and finally had my breakfast (cereal).
One thing I know about Gary is that he hates it when I cry, and I suspect he dislikes my cursing. When that bottle flew out of the pantry onto the floor I did both.
Once after a fight in which I cried, he complained about my crying. I finally, after a lifetime of being told not to cry, lost it and told him I will cry whenever I need to, it’s one way I process stress, and he can deal with it.
I swear like Alex Trebek (who was famously foul-mouthed). I firmly believe that both crying and cussing are purgative and therapeutic and I have no intention of quitting either.
The other thing this disability/caregiving is teaching me is that I have to pace myself. There were three events yesterday I would like to have attended: a Celtic Festival (love those men in kilts, and their bagpipes too); an art opening at one of the local arts centers; and a concert by the chorale I used to sing in. Instead, the one outing I could summon the energy for was a necessary trip to the grocery store.
Crying, cussing, resting: resorative.
In my recent posts I’ve tried to chronicle this difficult passage with my husband’s Parkinson’s and a teenage grandchild. After “Hard” and “Harder,” I figure “Hardest” is yet to come, so rather than spell out in detail all the stresses and sorrows of the past week, I’m going to share the things that keep me from totally losing it.
First, a quick update on the health situation in our household: Gary has compression fractures in two discs, and we’re waiting for a procedure to fix it, while wrangling with insurance about requirements for coverage. (I will only add that I hate the health care financing system in this country.) The granddaughter is up and down, as usual. I need to see a spine surgeon next week about my back issues! But they’re nothing like Gary’s and I’m functioning pretty well with pain that’s mostly annoying. The dog is doing well, but since his neutering he doesn’t want the long, long walks we used to take, which is actually better for me, too. (But I miss the long walks.)
OK, that out of the way, how I get through. A friend recommended a book, “How to Want What You Have.” I got it and thought, OK, I’ve read Eckhart Tolle, Brené Brown, Byron Katie, Matt Kahn–I’m up on the self-help guides, right? This book is older, published in 1995. The friend who recommended it had a husband with Parkinson’s, which is one reason I trust her advice.
It is one of those books that’s life-changing, that gets highlighted, re-read, and it will sit on my nightstand to pick up and open when I need it. It distills the ideas I’ve gleaned from the aforementioned writers into a brief, cogent directive in three words: compassion, attention, gratitude.
I won’t do an exhaustive summary of the book, but briefly, “compassion” means understanding that everyone pretty much wants the same things, and I am not better or worse than other people. (I tend to be judgmental, so this isn’t always easy for me.)
“Attention” is that old, and difficult, trick, mindfulness. He quotes Thich Nhat Hanh’s instruction about washing dishes: notice everything about washing dishes rather than letting your mind wander to what’s next. This one is easier for me because I’ve been practicing it for some time. It’s not just stopping to smell the roses, but also about noticing where your feet step and being acutely aware of every sensation.
Finally, gratitude. You can see your life as a struggle or a challenge. You can acknowledge that it’s both, and then be grateful for being able to face the challenge, that you have resources to help do that. When I consider the state of the world today I am incredibly grateful to live in a nice home in a quiet, peaceful town.
I highly recommend buying, reading, highlighting and re-reading this book.
Other gifts that help keep me sane are my Thursday morning art group, where I am loved and supported by some of the most amazing women I’ve ever known (plus actually making art!); knitting; reading; and taking those ever-shorter walks with our sweet Junior.
Hardest is yet to come, I’m sure. How silly of me to think I could do a day-by-day chronicle. Even though his health generally continues to improve, Gary still has many challenges, as do I.
Most of the past week was spent with his visiting brother and sister-in-law. It was a little difficult adjusting schedules, but they were considerate and also provided delicious meals, and it was definitely good for Gary to spend time with family. They talked, reminisced and went through old photos.
During the week I was able to manage the following assistance: acquiring a wheelchair and a rollator (rolling walker); arranging weekly nursing care; getting twice-weekly physical therapy; and close to getting weekly non-medical support so that I can attend my weekly art group.
Our friends are so kind and have offered help in any way we can use it. For the most part I’m managing grocery shopping, errands and daily tasks. The tough part is not being able to call anyone to help with non-emergency but still urgent needs at 2 a.m. Fixing this is a work in progress.
The coming week will be our first real “new normal,” and I’m hopeful it will continue to improve. Gary asked me today if we had any jigsaw puzzles we hadn’t done, and it happens I bought one at a thrift store last year that was still sealed. I got it out and put a board on the table to work on it. We’ll see if we make any progress. I’d rather read, knit or do art, but if it keeps him company I’ll give it a shot.
I am still working through “How to Want What You Have,” and promise to provide my take on how it’s changing my life in a future post. For now it’s bedtime and a new week awaits.
There are three beings who depend on me: my husband with Parkinson’s, my granddaughter with multiple health issues, and the dog, who also had some health issues recently.
After many falls over the past few months, the one we knew would eventually put Gary in the hospital happened in mid-March. He spent five days in the hospital (including a blood transfusion for a huge hematoma from his butt all the way down his leg) and a compression fracture of the L1.
Then he spent two weeks in a skilled nursing/rehab facility. I was fortunate to have a choice, and this one checked all the boxes: they had a bed, took our insurance, came recommended by friends, and it happened to be the closest, 2 1/2 miles away. But even that was a tough slog, going a couple of times a day, spending an hour or so each time, along with taking the granddaughter to and from school, walking the dog, and all the other household chores that don’t go away. One nice thing was the facility allowed dogs once shot records were provided, so I took Junior a few times. He was a big hit with staff and patients!
The physical therapists and insurance having determined he could be discharged, Gary came home yesterday. So I thought I’d try to keep a chronicle of our new life.
Day 0, Going Home
They had discharge papers ready when I arrived; I signed a few documents, packed up the clothes and personal items I hadn’t taken home yet, and a staff member took him in a wheelchair to the car. (The physical therapist had given us a thorough lesson on car transfers a few days earlaier.)
He has a walker, and we are getting a wheelchair. My biggest terror, of course, is the danger of falling. I acquired a gait belt (something I had never even heard of before this), which will help me hang onto him when he gets up and down on the walker.
By good luck, this is Masters’ weekend, so he would be planted in front of the TV regardless of his health, which has given me a break.
I helped him brush his teeth and wash his face before getting him into bed. A shower will have to wait until tomorrow..
Day 1, Saturday
The dog and I got up early, took a long walk, and then I quietly checked on Gary to make sure he was still asleep, finally waking him at 9 to give him his morning meds.
It took nearly half and hour to dress him. It’s hard to put shoes on someone else! And he’s a big guy! He was able to get out onto the front porch and enjoy a little fresh air and spring sunshine.
Meals have gone well; he ate breakfast at the table and lunch in the living room while watching golf. This is a huge improvement; he could barely feed himself when he was in the hospital.
I needed to pick up the granddaughter and run an errand, and told him to stay put or, if he needed to get up, to do so very carefully–“nose over toes,” as the physical therapist taught him when he stands up. Most people normally try to stand straight up from a chair, but momentum is better if he leans forward, thus “nose over toes.’
I suppose things are going well, but I feel like I’m constantly in a hurry, and I’m also still living in fear of another fall.
Friends have offered help, and I intend to accept it when I figure out exactly what we need.
A friend whose late husband had Parkinson’s recommended a book called “How to Want What You Have,” by Timothy Miller. I’m reading it and highlighting passages. I think it will help me through this. More about it in another post.
In the midst of all this I had to go to Florida for my niece’s memorial service. It was a difficult trip, including canceled flights that delayed my return home (I had multple people covering for me), but I spent a few minutes on the beach. It was too cold to swim, but I did dip my feet into the Atlantic, a saltwater baptism I need every so often.
As the last year has brought many difficulties and crises into my little world, so it continues. My husband, who has Parkinson’s and has had several falls recently, had the bad one that put him in the hospital. He spent five days in our local medical center, even needing a blood transfusions because of a hematoma, and with a spinal compression fracture. Then he was transferred to a skilled nursing and rehab center, where he has been for the past few days. How long he’ll remain is unknown; he needs to get back his mobility and ability to care for himself.
I am blessed with several (overlapping) circles of people I care about and who care about me–my art group, our Unitarian Universalist congregation, and a dream circle I recently joined. (Our very conservative neighbors, who seem to have glommed on to our liberal views, not so much.)
In the dream circle yesterday I shared a dream about being on the edge of a canyon, with other people, short of water, needing to get to the other side. It was a very long way around. A man named “George,” (not my friend George), told me to just walk down the side and across and he would help me up the other side. So I did, and he did. The lesson I took was this: take the shortest and most direct path.
The dream group added to that, the lesson being: accept help when it’s offered. I mentioned that St. George is my patron saint (the patron saint of England), so maybe that’s who helped. When I told them he was said to have slain a dragon, our circle leader picked up a ceramic “dragon” (a lizard) and said, “Feed your fears to the dragon,” and thank St. George. I have brass rubbings of St. George, and I pulled out our own little ceramic lizard (not very dragon-like, but it will do).
One of my art friends gave me a Guatemalan worry doll. I named her “Pilar,” put her under my pillow, and had two of the best nights’ sleep I have in some time.
I read an article on Atlas Obscura about medieval pilgrims who wore badges (some of them quite bawdy) to ward off the plague and deter thieves. Thinking “how superstitious,” I found myself fingering the hematite heart that I bought in Inverness, Scotland, and have been wearing lately as a reminder of that much happier time, the day we went to Loch Ness and Urquardt castle.
I told our minister about these bits of “magic,” and he quoted Starhawk’s definition of magic: “The art of changing consciousness at will.”
I wrote the first draft of this before I went to spend a couple of hours with Gary. I managed to help him get the TV working again, took him out to the patio (but it’s so hot and dry–90F today–it was pleasant only because a family was visiting a loved one, and they were very friendly), then set him up with his dinner.
I am tired, hungry, need to do laundry, and right now I’d take magic in any form it presents itself.
As soon as my granddaughter gets out of the car at school I turn NPR on. And cry most of the way home. Crying for Ukraine, for the world, even crying for the deer I hit a few weeks ago. I know there are too many deer in the Hill Country; I know they’re destructive and dangerous. It did no damage to my car, but I still have this image in my head and keep thinking “I broke the deer.” It’s like the auto accident we had in September, which still replays in my mind. (And for which insurance is still not settled.)
The past weekend was one of the worst I’ve ever experienced, and the world situation was only part of the awfulness. Once again I will spare the details, but it began with about seven hours in the ER Friday, and went downhill from there. Saturday was utterly exhausting, and I spent Sunday and Monday trying to catch up with neglected tasks. Today I’m hoping for a little time for my own things, so I begin with writing this.
In the middle of these dreadful times, I try to find tiny ways of maintaining a bit of calm and sanity:
- Keeping at least a semblance of order. Dishes get washed, meals are prepared and eaten, floors are swept and laundry (mountains and mountains) gets done. A restocking trip to the grocery store yesterday was highest priority.
- Meditating, mostly when I walk the dog, while also getting needed exercise. I am trying to return to praying, an ability I lost when my granddaughter was in the hospital last fall. Funny, many people were praying for her then, and I concluded the Universe was going to do what it was going to do, whether she survived or not. She did, and for that I’m grateful. Sunday’s sermon (which I had to watch on Zoom) was about praying, and I asked the minister for the text, which I’ll print, read and re-read.
- Excellent health insurance and generally excellent medical care (although I have doubts about the ER doc who treated my husband Friday afternoon and evening). Thanks to good medical teamwork and better pharmacology, my granddaughter’s health is improving.
- A warm, safe and comfortable home in a pleasant neighborhood.
- Caring and kind friends and neighbors.
- Escaping to reading, art, knitting, and writing, when I can grab a little time. I have packed an “ER emergency kit,” with a book, a small knitting project, trail mix, water and a hoodie (for the always-freezing rooms). Must remember to throw in a phone charger on the way out. (It’s pretty certain there will be a next time.)
- Spring will arrive soon. It’s been a really strange winter, with below-freezing nights and often sunny, mild days. Not complaining, especially considering the awful winter the northeast is having, but I look forward to uncovering the porch plants and welcoming the hummingbirds’ return.
- Small bits of self-care. I managed to get a haircut and a pedicure last week by sheer dumb luck! Both were way overdue, and a little pampering goes a long way.
- Flowers. Nobody ever, and I mean ever, buys or sends me flowers. The last time was probably when I was working, and I’ve been retired for 12 years. So I decided I will just buy my own. The floral section of our local grocery store is the second-to-last department (before frozen food), so I pick up a bunch or two, worth the small cost.
Wishing everyone peace and calm in this troubled world, and for the strength and resilience of the Ukrainian people to somehow bring down the evil that is trying to prevail.
As hard as I try to keep up an upbeat, positive attitude, filled with gratitude and “handholds of joy,” the truth is some days are really, really hard. After being awakened yesterday at 3 a.m. and again at 4 a.m., I cried from six till about 10 a.m.
For their privacy, I don’t like to go into details about my family members’ health issues. Suffice it to say they are challenging, scary, exhausting and cause me so much stress that I sometimes wonder why I don’t get sick myself.
I had a wonderful long chat with my sister-in-law recently. She is my late brother’s widow, and she was his caretaker while he was dying of non-Hodgkin’s lymphoma, while also working as an English professor. She said people often asked her how she did it, and she answered “I don’t know. I just do it. Put one foot in front of the other.” That is exactly how I answer the same question.
But a wonderful thing came out of that conversation. I mentioned that I was thinking about writing a memoir, and she said she is too! I suggested we that be writing partners. We are going to share pieces as we write. Since she’s an English professor and I’m a writer and poet, I have no fear that we will find each other’s work unreadable.
My working title is something like “My Life in 27 Places.” I have had 27 addresses in my life so it’s fitting. Hers is related to food. She’s Italian after all! I used to comment that I was so glad my brother, of our dour, stiff-upper-lip English family, married into a big warm Italian one.
I started a few chapters some years ago, and I’m beginning the outline now, which is pretty straightforward since I know how many chapters there will be!
Don’t ask me how I’ll do it, or if I’ll have time. Writing, reading, walking the dog, knitting–these are solace for me and I’ll find time in odd moments.
The last prompt for Bloganuary: how do you feel when you look at the stars? Again a day late, but I want to respond to this one. The first response is one word: “awestruck.” But that’s not much of a post.
Many Texas myths are just that, myths, but the song is correct:
The stars at night
shine big and bright–
pum pum pum pum–
deep in the heart of Texas….
There are many clear night sky locations in Texas. Here are some of my favorites:
UbarU, a Unitarian Universalist Camp and Retreat Center in the Texas Hill Country, is the world’s smallest International Dark-sky Association-certified site. It has a small observatory, where volunteers hold star parties, but just stepping outside on a moonless night offers a breathtaking view of the bright band of the Milky Way.
Other great night sky sites abound in Texas. Big Bend, the Davis Mountains, and the McDonald Observatory, near Fort Davis, offer beautiful starry skies. The Observatory also offers star parties, as well as daytime tours of the observatory.
The very best starry night I have experienced was in Marathon, Texas. We stayed at the historic Gage Hotel as a base for a visit to Big Bend National Park. Upon arrival, we watched from our window as a huge full moon rose, but we were too tired to go out.
The next night we asked where in town was the best night sky view. We were told, “the cemetery,” which was quite nearby. So we went to the cemetery and sat for quite a while enjoying the beautiful night and brilliant starry sky. Just as we were ready to leave, that fat full moon rose, so we got the benefit of both a moonless starry night, and a unforgettable finale.
Once again a day late, but this is one I want to respond to, mainly because my most important contribution to the world, without doubt, is being mother to two amazing women. I don’t know how much they inherited from me, but what we have in common in toughness and perseverance.
My older daughter teaches seventh-grade English. And she teaches more than reading and writing: she teaches values and character, critical thinking, civil rights and current events. At this moment, while states and school districts are banning books, she is stockpiling banned books in her classroom and encouraging her students to check them out! (Which, of course, they do because there’s nothing more attractive than the forbidden.) She has been married to a terrific man for nearly 30 years (more than either of my marriages) and is the mother of an amazing young man who will also make his contributions to the world.
My younger daughter has gone through struggles and growth, and she is one strong, tough woman, both physically and mentally. Her passion is animal rescue, mostly dogs, but she hopes to take in more animals in the future. She has done her share of helping rescue a few people, too. She is educated in journalism and also certified as a personal trainer, and she sells vintage and designer goods found in thrift stores on eBay and Poshmark. And of course she is the mother of my teen granddaughter.
As for my personal contributions to making the world better, they are less spectacular than teaching seventh grade and rescuing animals, but taking care of husband, teen and dog take up much of my energy. I have written extensively about that situation, so no need to elaborate.
I hope that I help in small ways–being kind, holding doors, letting someone into traffic, those lubricants that make our society run more smoothly. I am active in our little UU congregation, in the local Democratic party and in both area arts centers, and we make charitable donations to environmental, social justice and other causes that share our values. I give away almost all my knitting and make original art postcards that I send to people.
Kindness and good citizenship are small ways everyone can make the world better, don’t you think?
Once again, despite the clunky wording of the prompt, I’m tackling this one, because it’s relevant today.
The grandchild is home from school (again) and my husband had four falls/near-falls this morning. My pulse rate is starting to come down, but it was up there for a while. We think he got up too late, took his meds too late, and got up too quickly from breakfast. He’s got his walker now and is doing ok.
Not sure if I can answer the prompt with one word, but it’s some combination of patience, tenacity, determination and optimism. I also value curiosity and enthusiasm, if that isn’t too much!
I had a dream the other night that stayed with me. I had gone back to school, university, not sure why–maybe to get a master’s, or another degree. But I was my current age and in my current circumstances: disabled husband, challenging teen, a household to manage and so on. I was behind on projects for two classes, classes that I enjoyed. I talked to the teachers, explained the situation, and hinted on maybe a deadline extension. At this point I started to wake up, and in that half-asleep state I projected the responses: “You need to figure out your priorities for yourself.” Ah, yes, of course. So what are my options?
First thought was to drop the classes or withdraw completely from school. Another was to keep going, pull all-nighters to get the work done, but realized I’m too old for losing that much sleep. Another was to prioritize school and give the household short shrift.
So yesterday, on a long dog walk, I thought through: “What are my priorities?” I wrote in today’s morning pages:
- Keeping my family–husband, child, dog and myself–healthy and well, insofar as possible; making sure our needs are met.
- Caring for the larger community, the rest of my family, my friends, neighbors, our precious UU congregation, and the world–being a good friend, neighbor and citizen.
- Feeding my own soul with the things I love:
- Being outside, walking; fresh air and exercise, especially in water
- Reading–fiction, non-fiction, memoir, poetry, magazines, newspapers, heck, cereal boxes
- Art–making, seeing, displaying in our home
- Writing–blog, morning pages, some day a memoir
- Handcrafts: knitting, stitchery, sewing
- Keeping a nice home
- Movies, music, shows, travel
It’s clear I won’t be going back to school.