Building a Room To Die In

Spring Fundraiser 2015, Day Five

Day Five?? How did we get here so quickly? Again. I seem to lose track of a sense of continuity as I float through the octave of each quarter’s effort to tell and re-tell again what this project is about and how it changes us. The content of each effort is different, but the process doesn’t change. We’ve become better at keeping to the themes of each quarter, and I don’t know why. Maybe it’s similar to the way the Baron claims he learned to have artistic talent: do something over and over and by the end, when you have a better sense of what you’re doing on stage — why, the play is over.

Tip jarThis is/has been a good fundraiser. As they say around here, a right good one. Y’all have admonished me before not to call this begging or blegging — an intriguing portmanteau word — but instead to be true to what we’re doing here: asking for your help in remaining up and running without ads. That was the original contract, after all. I’ve been supposed to be “looking into” unobtrusive ads, but my heart’s not in it. If I had better computer skills, we’d no doubt have something or other. But it seems to me the ads I see other places are getting worse and more intrusive, even when one uses those ad blockers. On older machines, there’s not a good defense, and some of our readers are using older computers… so, for the moment, I’m going to let the ad project go. There’s simply too much else going on.

Besides, our readers are providing genuine and stable support. Sure, we’ll have to dig into savings to pay for part of the plumbing disaster but that’s what savings are for: pipes, and roofs, and — ugh — car replacements. But my plan is to keep repairing this one until they quit making the parts. It’s only fifteen years old and has many thousands of miles to go.

As we come around the turn and can see the home stretch, I’m going to call this a generous WIN. Not only new donors but many of our old faithfuls as well. And your gifts have arrived in all sizes from small to the large economy size. The latter amount means a bigger-than-usual donation, which is very good for Schloss Bodissey’s economy.

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It was only when my mother aged into Parkinson’s that it was obvious the time was coming when she would need our care. She had “outgrown” the old folks’ home where she had moved a few years previously after selling her home. That “home” didn’t provide assisted living (what euphemisms we employ!), nor could any of us afford that solution even had we wanted it.

The Baron and I had long since promised ourselves that with both our mothers we’d keep them out of institutions if we possibly could. So we used the proceeds from the sale of Mother’s small house (the house of my dreams in the orphanage at Saint Mary’s and her personal proof of victory over difficult odds), and armed with that somehow finagled an equal amount from the bank despite our low income. I kid you not, Bank of America once had a heart — and not that long ago, either. They did refuse us the first time but with nothing left to lose, I wrote the head office a begging letter — and the local manager called me in shock to say they’d agreed to it. She was as awed as we were. But then, we owned our home sans mortgage so they knew they were safe. This couldn’t happen today (and that debt was the first thing we got rid of when the Baron came to the time in his life when he was offered a “real” job, the kind where you put on a coat and tie and sit at a desk. Amazing what they would pay then if you could compute things.

The daughter of one of Mother’s life-long friends was married to a neurosurgeon, and it was he who pronounced the diagnosis and its likely progression. Her friends in Florida began to get Mother prepared to move here and we began to find a builder. After a number of false starts, we ended choosing a contractor from an ashram in a nearby county. Bless her Catholic heart, when we invited this builder in to bless the finished addition (he was also a swami), she tottered off behind him, sprinkling holy water to ward off whatever he was bringing in — which was no more than candles and rose petals and Hindu prayers.

Ah well. We’d gotten her here and that was the most important part. I felt sympathy for her situation: living, as she said, “in the Middle of Beyond” and far from all her friends. Would she have lived longer if we all had been wealthy and able to keep her in her own home? Probably. But you go with what you have, or what you can devise, and all of you smile and leave the sadness mostly unsaid.

Building the addition to the house was one of our great adventures, good and bad. It was a very wet, frozen late winter and early spring that year; the laying of the foundation kept being delayed. There was a period — a fortnight or less — of strange freeze-and-thaw weather that uprooted whole swaths of pine forest. They just fell into and onto one another like drunken sailors, their bare roots whole and obscenely exposed to the air and their topmost branches partly buried in goopy, soupy clay mud. In one of the first of those episodes, we’d been in town, and the drive home in the freezing rain was slow going. I’d wrapped myself and the future Baron in our coats and we dozed a bit as the B drove carefully home. Finally, the turn into our driveway! We’d gone in a short distance only to find our way hopelessly blocked with fallen trees. The headlights bounced off a scene from hell: trees uprooted, lying like giant pick-up sticks. There was nothing for it but to button our coats, cover the boy as best we could and pick our way through the pelting snow/ice toward the house. After a very few minutes I was lost. All sense of direction and even time hung suspended as the cold pierced every fiber. Nothing looked familiar in that frozen wet darkness. I clutched my weeping son’s hand as he stumbled behind me and on the other side, I felt the Baron’s firm grip on my arm as he carefully picked his way through obstacles I couldn’t see in the totality of darkness and cold. Fortunately my husband has an unerring sense of direction and it was he who led us finally through the Valley of Desolation and into the clearing where stood our warm house, solid and untouched.

The weather finally warmed enough for them to begin on the house. The Baron had drawn the plans out for the contractor and they discussed how to come in at or under budget. Me? I still don’t know what an “elevation” is, but I’m glad he was able to envision and design what we needed, including an octagonal window in the wall where the stairs ascended to the second floor.

I had to leave aside things I’d hoped for as extras — like kitchen cabinets — and replace them with items like a handicapped shower so Mother could enjoy the warm water flowing down her back.

The back door on her room let to a small porch where she could sit in the good weather. Poor mother: sitting in the warm weather, not with a drink in a lounge chair, but with a small cup of tea on the table next to her and a view facing the woods. Sometimes she got a look at the “creatures” who came out of the woods to chew on the azaleas. Like mother, like daughter: I’m no fan of Bambi either, unless it’s called venison and is marinating in red wine and herbs.

Beyond food, shelter, warmth (or coolth, depending on the season) and the presence of people who love you — in other words, beyond the basics, “rich” or “poor” is a point of view. Some of us need very little, some of us can never be filled. My mother fell somewhere in the middle of that spectrum. She’d had so many years of being scared about her child’s and her own security — about the roof over our heads — that it was hard for her to let go. In her own childhood she’d grown up being questioned about “the address” of her schoolmates, or queries into what their fathers did — exams to be passed before girls could be invited home after school. In America, when she fell on hard times all that had to be hidden from “home”. What would people say? Oh God and His Blessed Mother, the shame of it would freeze her in place.

Back in Virginia, once the house was finished — or almost so — we flew down to bring my Mother “home”. The pain of leaving behind the place she’d lived so long — since she was twenty-eight! — was gut-wrenching but she put a good face on it. There had been days of mourning before we arrived and her friends were adamant that she wear her game face out the door, carefully coiffed and make-up in place. And she did it!

She and I flew back together while the Baron drove a rented truck from Florida to Virginia packed with her belongings so she could have some of “her things” around her. The fB was staying with one of my other sons who delighted in feeding him every junk food I never let in the house. Sometimes being bad has its own special delight. They had a Calvin and Hobbes time of it, those two.

I’d recently begun a great job, traveling around Virginia to teach the basics of working with “at-risk” families to community groups who wanted to cut down the instances of shocking abuse they were finding in their own towns. I’ll save the particulars for another time, but for now, with Mother coming to live with us, and with the Baron being the house husband, we decided I’d better switch gears: expand my house-cleaning business locally and give up travel. Having tried now for some years to find “help”, I realize what a jewel I was back then. At the time, I had various feelings about the work. For one, I thought of it as a lived-out example of James Whitcomb Riley’s poem “Little Orphant Annie”, which had always made me laugh:

Little Orphant Annie’s come to our house to stay,
An’ wash the cups an’ saucers up, an’ brush the crumbs away,
An’ shoo the chickens off the porch, an’ dust the hearth, an’ sweep,
An’ make the fire, an’ bake the bread, an’ earn her board-an’-keep;

The whole thing has a nice cadence; so did cleaning and organizing and bestowing order on other people’s belongings. I could make my own hours and be home when needed.

Cleaning up behind others is low on the totem pole of jobs, but those of us who’ve done it know its charms: autonomy, mindfulness, and no government paperwork. No crises, no dramas, few demands, and delighted faces when the house cleaner shows up at the door. Much happier faces than I’d known as the social worker showing up. All those years I thought I wanted to save the world and come to find out I just wanted to organize their closets.

David Sedaris wrote about the joys and sorrows of this work much better than I. Let’s just say it takes a certain desire to impose order on the world, to go toe-to-toe with entropy and actually win a few rounds.

I even had one job where I did “shoo the chickens off the porch”. It was the same place where I contemplated the thick wisteria vine growing up through the library floor, its tendrils beginning to wrap around the moldering leather of the books on the dusty walnut shelves. Like others before me, I found the faded glory of that house too oppressive to stay for very long. It was akin to dusting the Parthenon.

You can imagine the character of the man who lived there, his closet full of bespoke suits and monogrammed shirts, his head full of tennis dates from fifty years before. Despite the high pay and my good intentions, his world was too creepy to stay in for very long, much less to gather one’s wits enough to be able to “ clean” amid the ruins. Now there was a man who, despite his money, had neither kith or kin to gather him in. The experience made me grateful for what awaited me at home with Mother and my family.

For the first few days after Mother’s arrival in Virginia we stayed at a nearby country motel while the carpenters hurried through the finish work. It had become a race by then, one I blessedly missed.

The rooms in the motel were adjacent to and behind the restaurant which was the main business of the place. Everyone in town ate there but few were permitted entrance to the motel — you had to pass Miz L’s scrutiny to get in. In her eyes, we were obviously a family who’d been “raised right”, so on applying for a reservation before flying out, we received the precious key and her blessing. After we got there, Miz L hovered, even bringing our meals to the room at first, when Mother was too fatigued from the trip.

When we did finally arrive, the wife of one of the carpenters had put together and made mother’s bed with her own familiar sheets from home. The curtains were ones that had hung in her room in Florida. Her doctor and his family had even contributed a television so Mother would have some entertainment. It was quite a concession for us — letting the monster into our previously TV-free home. Of the four of us, two were thrilled: Mother and her grandson, the fB. On Sunday evenings they would lie on her bed and watch her favorite programs — which became his favorites, too.

As the Baron was then the fB’s teacher (we homeschooled) and our chief cook and bottle-washer, so he was also my Mother’s caretaker. Sometimes that was excruciating for both of them. Having been raised by a stern, Edwardian-molded father, my mother found men intimidating. Despite her five brothers, it was her forbidding father who was the template in her heart and mind. Even though she understood intellectually that this mild-mannered artist, the husband of her daughter, was essentially “safe”, she was still afraid.

As the Parkinson’s progressed, people and time seemed to meld for her. One day, when she found a ladybug on her coverlet, she called out in fear for me to remove IT. At first I couldn’t find what was scaring her, though I knew it must be an insect of some kind. Finally, I got the bug out the door only to be asked if I’d managed to catch “God’s cow”. “You mean the ladybug that was on your blanket?” She stared at me. “Ladybug??” Silence. Then a question: “You know what this means, don’t you?” I admitted I didn’t. “It means I’m daft,” she told me, her voice very sad.

I wanted to tell her I’d been daft for years, just ask the Baron. But by then I knew our jokes had to be careful. The old wonderfully dry wit that had been a hallmark of her character was fading fast. The time was coming when she’d tell the EMTs who put her in the ambulance for the ride to the hospital that “the man” had taken the thousand dollars she’d hidden in her nightstand.

The fun woman would/could emerge in glimpses — say when her old friends called her to check in. Then she would come to life for a bit, the normalcy pulled from some synapses somewhere. This gregarious extrovert who’d always had a hundred close friends withered on the vine.

I realized afterwards that even had I been able to people her life with dozens of visitors, they wouldn’t be those deeply familiar people of her vital years, the ones who’d shared so much of her time on Earth. Even when some of them made the trip up from Florida to see her, the ties had been broken and they couldn’t be revived except as remnants, as what I termed “Remember Whens”. At the time it made me sad for her, but I’ve learned many times since then to experience these moments for what they are: tattered remnants.

The saving grace in all of this was her beloved grandson. He was bright, full of energy and questions. He was thrilled to have a permanent guest who was both an elderly grandmother and a sibling of sorts. With him, she could make jokes and laugh. And he uncomplainingly accompanied her and his dad to the doctor visits and errands. Mother could never remember her doctor’s name, or even that she was a doctor. To Mother Doctor H. was simply “the tall girl in the good clothes”. [Back in her time, Mother had trained to be a buyer at Neiman-Marcus only to balk at the last moment: she was too concerned about the effects of a major move on my well-being, so she turned down the job. But she never lost her eye for “good clothes”.]

That whole experience of the more-or-less year of Mother’s dying was an improvisation by all of us. We played it by ear, making up the lyrics and the tune as we went along. Mother would ask the Baron, “Now tell me again why, if you could have been an architect or a lawyer you didn’t do that?” Mother’s ingrained Catholicism was a help here: the Baron would remind her of his vocation, that he was called to paint God’s creation. That would sink in deeply and she’d go on to something else before circling back to her puzzled preoccupation with voluntary poverty. [It wasn’t exactly “voluntary” — he enjoyed selling his paintings — but just because one is a good painter, that doesn’t mean they’re any good at selling what they create. Ask Van Gogh’s sister-in-law.]

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The last lap of Mother’s life lasted a bit more than a year. We had the opportunity to celebrate all the major holidays and family feasts. By the time I drove her to the hospital when we thought she had pneumonia, it was my own birthday. Yes, I was acutely aware of the irony of our changed positions. To lessen the load I sang lullabies and her favorite hymns. When breath would allow, she’d join in. I could sense the end coming. The Baron was exhausted and so was she. The physical work of caring for someone who was afraid of him despite her best intentions took its toll on his body and soul.

The work of staying alive was wearing Mother out too. As we made the long trip in she recalled her feelings when I was born. The magic weight of a baby held for the first time. When I mentioned her own birthday, due in about two months, she sighed wheezily and after a moment of thought said, “I don’t think I want to work this hard anymore.” I had no answer for that except to pat her hand.

The annoying paperwork of admission became too much. I went up to the clerk’s desk and told them my mother was dying and if they couldn’t find a bed for her to do this in some kind of dignity then I’d take her up to the medical floor myself. Amazingly, they responded swiftly and kindly. One aide called the floor and the other took over the wheelchair where she was slumped and strode with us to the elevator. Squeaky wheels and all that.

By coincidence, the admitting doctor that weekend was the same doc who’d founded the local Free Clinic where I was both a patient and a volunteer: once a month I fixed a meal for the twenty or so personnel who staffed the clinic in the evenings. My meals were famous in that small group because I believe in presentation — i.e., tablecloth, napkins and flowers. A printed menu…there really is an art to getting people to smile when they see you: feed them. One doctor still likes to recall the chicken crepes.

And, to add to the synchronicity, Dr. M’s father was two doors down the hall, probably dying. When the doctor came in to see Mother he was unshaven and oh-so-tired. I had every good reason to like this man: a few years before, when I was let go from the famous ulcer study underway at this same teaching hospital (where his father and my mother were now residing) I was in a great deal of pain from the helicobacter bacterium eating my stomach lining. I had gone to Dr M in tears to explain I was let go because I hadn’t written down the correct directions for the protocol so I took the meds wrong and the treatment failed. He’d patted my arm, reassured me it was a fixable problem and gave me an alternative protocol. And he wrote down the directions fully and completely, explaining where I’d probably misunderstood.

After Dr M examined Mother he told her they’d start some medication for her pneumonia and if all went well, she’d be able to go home in a few days. Mother actually looked much better. I think she felt safer in the hospital, and all the activity seemed to perk her up. The B had called a few of her friends and most of her strong intervals in the next day or so were taken up with talking to her friends. Her grandchildren gathered ’round, remembering with her, for her, those annual visits she’d made to see them every year. She’d been a real presence in their lives, some of them even going to stay with her in Florida on occasion. As the Baron would tell her, once you have grandchildren, your job is done.

Like mother, like daughter: she yearned for ice cream and we took turns feeding her. She didn’t have as much as she thought — by then her appetite was disappearing. I really thought she was getting better: her color was good, she seemed to have more energy, more life force. Dr M was right when he said “two more days”.

In reality, my daughter was right when she told me, “Mom, Grandma’s not coming home. She’s dying”. I didn’t believe her. But when the call came at three a.m. on May 30th, I wasn’t surprised. My mother had decided to go home and when the doctor told her she could, she took him at his word.

As the years go by without her, I miss her more than I did in that first year or two. I recognize her abiding strength under the fear, sometimes I can hear her voice calling my name. I accept that she had to die alone, and that it was a choice she made at some level. I believe our deaths are logical extensions of the lives we’ve led and that no matter how many people are there or not, death is not something we undergo, it is an experience in which we participate.

I believe my mother left me with a blueprint to follow. I’ll make some changes, of course, but essentially it’s an admirable plan.

Thanks to her, I’m not afraid of dying.

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The Story Behind the Picture: For many years at Christmastime, Santa Claus and Mrs. Claus would make an appearance at our local general store. A real general store, and a real-ish Santa, since you could sometimes spot him at other times of the year. He might be wearing his civvies, but that beard was unmistakable.

Once the very young future Baron got past his natural fear of an old bearded man dressed in bright red velvet (Mrs. Claus was a bit pruney, so she wasn’t much help. It was the fB’s considered opinion that she didn’t like kids much), the trip to see Santa was an occasion for free candy and a short chat.

The picture at the top of this post dates from a year when my mother came to visit at Christmas, and was in time to accompany the fB and his dad on the big adventure. As was her inclination, Mother impulsively popped onto Santa’s lap to have her picture taken for her friends back home. You can tell it was impulsive because she loathed those post-cataract glasses and usually whipped them off if a camera hove into view. She much preferred a Mr.Magoo owlishness to what she referred to as “those ugly coke bottle bottoms”. When Mother plopped down on Santa, Mrs. Claus went into immediate prune mode, telling Mother she was too old to be sitting on a strange man’s lap. Mother replied that a girl was never too old to talk to Santa, and she whispered in his ear. He laughed.

Later in the store, the fB asked his grandmother what she’d told Santa she wanted for Christmas. Mother pretended to hesitate and then stage-whispered so all could hear: “Why, I told him I wanted a Rolls Royce and some stock market certificates to feather my nest.” The fB pondered this. Being an avid bird watcher, he could by then identify particular birds’ nests. He looked at his grandmother in consternation: “Grandmaaa,” he said with great patience, “you can’t use a car to make a nest. That’s silly”. But you know grandmothers always win those discussions. She laughed in reply, and told him, “But you could USE a Rolls Royce FOR your nest, dear boy. They make wonderful nests.”

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Yesterday was a fine day. People came from all over — even blue states!

Stateside: California, Illinois, Maine, Massachusetts, New York, Texas, Virginia, and Utah

Near Abroad: Canada

Far Abroad: Australia, Germany, and the UK

Thanks to everyone from Day Four. The next post in this series, Day Six, will come from the Baron.

The tip jar in the text above is just for decoration. To donate, click the tin cup on our sidebar, or the donate button, on the main page. If you prefer a monthly subscription, click the “subscribe” button.

4 thoughts on “Building a Room To Die In

  1. I wouldn’t mind ads on GoV; in fact, I would welcome it as a sign of mainstream acceptance. I wonder though who would dare to place an ad with you, given the universal cowardice of business. Over in Sweden, the alternative newssite avpixlat, routinely described by the useful idiots that run that sorry land as a ‘hate site,’ has only managed to lure a casino; otherwise it uses its ad space to flog samizdat books and its own offerings.
    (On the bright side, SD are up to nearly 20% in the polls.)

    • SD are up to nearly 20% in the polls–and that’s GOOD news?

      OMG, Gamla land, what does that say for the other 80%!!

      • Ah, Peter. 20% in a country that has made it their national mission to bring ruin and desolation to the Sweden Democrats? Where they have to crawl through the briars for each percentage point?

        Sweden Democrats are like helicopters: they shouldn’t function by they do.

  2. Excellent post, Dymphna and so close to home for me with much with me mum. She took herself home after the docs told her she could NOT return to her beloved home without 24/7 care in the house with her.

    Go rattle the tin cup later. I sent in a few pesos and as always I am a bit late to the party.

    Death does not scare me anymore. There is a phoenix in all of us and we just eventually run out of renewals on this plane.

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