Unpacking Packing

IMG_1474After a light post about provincial French street style, the pace changes. As fun as it is to watch views climb, I am not writing this  I cannot get another topic out of my head. It chases me in my dreams. It haunts my days. When, the other day, it jumped out at me from a podcast I was listening to, I decided I needed to face it head on. To unpack the thoughts.P1090767I am making a bed, with podcasts to keep my mind off the mundanity of the task at hand. Mindfulness is fine, but I would rather not be mindful of housework. Like exercise, it is not something I enjoy in the moment, but I do appreciate the benefits afterward. Perhaps I should lean in, and learn to appreciate the nuances of good hospital corners on a sheet, but I’d rather go through the motions while my mind is focused on current affairs or something like that. One of the good things about the Internet is that I can listen to anything anytime anywhere. IMG_1467While my podcast lineup leans heavily toward business, I also appreciate good wordsmiths, and The Moth has some of the best. I just had a good cry along with Anthony Griffith, who talked about how his mother was his hero. Now, I listen as Kate Tellers describes her mother’s decline from cancer. It’s clear how this story will end, and I brace myself. It will be a different cry from mom-as-hero. P1090844She talks about how the hospice has given them a booklet about the changes one’s body goes through as it closes up shop. And then she says she goes into the bedroom to find her mother up, saying she has to pack.

I fall to my knees. Kate Tellers gently tells her mom that she doesn’t need to pack for where she’s going. P1090805A couple of months before my dad died, he became loquacious. He never had any sign of dementia, but his stories became increasingly strange. He said he had bought a fishing resort (we checked–not true). He said he’d just talked to some relatives..who were dead. One day when I entered his room, and he informed me that the state patrol had been there to interview him about a murder. He didn’t know anything, he assured me, but as it happened down the road from his hunting cabin, they came to check. I thought he was nuts. Of course, the state patrol hadn’t been there. He mentioned a name, and I googled it. A guy with a similar name indeed had lived near the hunting cabin and was now living in prison–for murdering his wife.IMG_1471And then, he was all worked up about packing his bags. “Dad’s gotta get outta here, sweetie,” he told me. He always referred to himself in third person, as if “Dad” were a character he was playing, not quite the same as himself. Dad was stoic, tough, worked two jobs, shouldered the burdens for the family. He himself was shy and, I suspect, a little disappointed with his life, which turned out to be more full of setbacks than seemed fair for somebody who worked so hard and did everything everybody expected of him. IMG_5957I thought, at first, he was talking about getting out of the rehab facility, which was just a temporary measure until a hospice place opened up. He had been to that facility after surgery about a year earlier and hated it, though he clearly had come to change his mind and truly loved the staff. P1090765I mentioned it to one of them. Yes, he told me, your father keeps talking about packing his bags. It’s common among people who are about to die. The hallucinations were common as well. P1090845Kate Teller’s mother died soon after wanting to pack. My dad hung on for another two months. I was at his side when he died. My siblings had been taking turns spending the night in the armchair next to his bed. One day they called me: come now. I flew in immediately. On the second night, I took a turn in the armchair. I sometimes suspect my dad had been holding on not to disappoint my siblings. Always stoic.IMG_1469Listening to the end of the podcast, I sit on the floor and sob. It’s been several years since my parents died, my mom just three weeks after my dad, yet not a day goes by that I don’t miss them. I am glad I got to be at their sides and to tell them I loved them. They were generous in telling us they loved us, too. My dad would always say, “I love you more!” with a mischievous gleam in his eye.

I wipe my eyes and text my kid: I love you.

My kid texts back: I love you more!

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Photos of spring from around here. The circle of life.

Angels in Our Midst

P1080563Today’s post isn’t about France. It’s about angels. Down-to-earth, in-the-flesh angels.

The French novelist Proust famously had his madeleine, a cookie that, when dipped in tea, brought back memories for his protagonist. Taste and smell are such powerful triggers for memories. But music also can transport us to another place and time.P1080538The death of Glen Campbell last week, and the snippets of songs played along with the news and tributes, took me on a memory rollercoaster. Songs like “Wichita Lineman,” “Gentle on my Mind” and “Galveston” had me back in the house where I grew up, happily playing with my siblings and not having many cares beyond whether it really was my turn to do dishes.

But the songs also take me to the hospice where my father spent his last months.

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The photos in this post were taken at Cathédrale Saint-Michel de Carcassonne, which dates to the 13th century.

It actually was just a nursing home, and the hospice part related to the kind of care my dad received. But it was a very special place. It was staffed by angels, who, however well paid, were not paid well enough, considering the bodily fluids and solids that they cleaned up, over and over, gently and efficiently. Angels who never lost their patience with the many disoriented residents in the throes of age-related dementia. Angels who, I fear, receive less than a warm welcome outside the nursing home, because they come from a veritable United Nations of farflung homelands. When the wider public sees see them, do they realize they are encountering angels—heroes? Do they realize these angels are making America great? Or do they just see dark skin and hear an accent?

The home was the opposite of an institution. It looked like the other white-siding-and-round-stone supersized “farmhouses” in the suburbs, with a big porch overlooking an impeccable lawn on a cul-de-sac. You’d need a keen eye and experience pushing wheelchairs to notice that the front door was extra wide, that the sidewalks and curb cuts were extra smooth and that there were no steps anywhere. P1080560After entering the code in the vestibule, one arrived in a “great room” that looked a lot like a set for a morning talk show. A large stone fireplace dominated the center, with a clutch of armchairs (some with electric lift assist) facing a big-screen TV on one side, and a few dining tables on the other side. And open to it all was a big kitchen, where somebody was always cooking.

Two of the cooks were Dixie and Donna, both with white hair and irrepressible smiles. They greeted everybody who arrived, often with hugs, and seemed to truly enjoy cooking. They were clever about finding ways to turn familiar flavors into forms the residents could chew or swallow (often involving heavy cream; people in a nursing home don’t count calories any more). They told me that it was important for people to enjoy their food, even if it looked like mush. I tasted some purée, and it was delicious.P1080553They also baked. The entire building smelled like cake and cookies 24/7. It was on purpose—to make it feel like home and not like “a home,” as in “a nursing home.” The baked goods were out for anybody—residents or visitors. A little sugar therapy.

While Dixie and Donna bustled in the kitchen, like a pair of comedic cooking show hostesses exchanging witty repartee, the greatest easy listening hits of the ‘60s and ‘70s played on a tape recorder on the counter. Yes, cassette tapes.P1080550Glen Campbell was a staple, along with Neil Diamond and Andy Williams. (I always had a crush on Andy Williams. That Christmas special!)

Dixie and Donna weren’t unusual there—the entire staff was caring. Loving, even. When my dad first moved in there, the “elder aide,” Sylvester, came into his room to welcome him. Sylvester was built like a professional football player, with a million-watt smile and boundless cheer. His infectious laugh would ring through the cottage. He took my dad’s hand and told him that in his native Cameroon elders are revered and that he was honored to have a career taking care of elders. He called my dad Mr. John and my mom Mrs. John—a charming mix of honorifics and family-style familiarity.  My dad loved Sylvester. P1080543My dad also loved Koko, a nurse at the rehab facility where he was discharged after the hospital and while waiting for a place to open at the nursing home cottages. Koko’s family was from Togo, though he had grown up in the U.S.

He treated my dad with as much tenderness as one would give a newborn baby. I have never seen anyone as gentle. He was a big, strong guy, too, and could single-handedly move my dad without causing him too much discomfort, whereas the young nurses, while adorable and cheerful, had a hard time shifting my 200+-pound father, even when there were two of them.P1080552Koko also was an extraordinarily conscientious worker, or at least the best-organized. I would sit with my dad for 5-6 hours at a time, even all night, when I was in town (lest anybody think that was special, please know that my siblings were there all the time, all year, for years, whereas I would just fly in for a couple of weeks; they were real heroes). I knew his orders were to be moved every three hours, because he had a very large bedsore. Sometimes it took a long time for anybody to come. But Koko always came in right on time, as if he had set a timer.

When it was time for my dad to move to hospice, he held Koko’s hand and thanked him, and asked him to consider transferring to the hospice with him.P1080559He loved Kelly, the hospice nurse. I think my dad was something of a treat for the staff. So many of the nursing home residents—and even the residents at the assisted living residents where he and my mom had been for about a year—were losing or had completely lost their mental faculties. But my dad was sharp as a tack. He loved to joke. He paid attention to the news. As my dad’s condition worsened, Kelly would do her paperwork in his room, to keep him company.

I can’t name all the heroes who treated my parents with love, care and dignity. There were so many, from the specialist doctors (some from countries on travel ban lists) to the housekeepers who spoke little English but who managed to coddle my parents despite the language gap.P1080567Glen Campbell is just one of many triggers lately that bring back those months. I’m a podcast junkie and keep stumbling on podcasts about the elderly, dying and related cheerful subjects. On the Fresh Air podcast, Terry Gross (world’s best interviewer) talked to the author of a book about palliative care. I am not so sure about palliative care. When my dad was in the hospital, the palliative doctor pushed hard for all treatment to end. My dad didn’t want treatment to end. He had great confidence in modern medicine, and figured something would give him some more time. When people talk about quality of life, I am leery. Who is to say which life has quality and which doesn’t? Most of us don’t want extreme measures to prolong life in the end stages of a terminal illness, especially if we’re suffering every minute. But if the person isn’t suffering? My dad was told he needed a feeding tube, and he was OK with that. The palliative doctor strenuously argued against it. It gave him a few more months, during which I think he came to grips with the situation. I also think he truly enjoyed every minute of every visit by family, and every conversation and joke with staff. Isn’t that quality of life?

There was an interesting podcast (on Reply All) about the design of nursing homes, including some like the one where my dad was in hospice. There also was a concept called a “Minka,” which is like a little cottage you’d put in your yard, so your aging parent could be nearby and cared for by family. I think it’s a great idea, but at some point, people need 24-hour care and things like medical cranes. It’s an awful lot to put on family (who might not be so young themselves) both physically and emotionally.P1080558On Point had a report about the fight over the right to sue nursing homes. It seems that one of the main roles of government is to protect the weak. But that seems to be flipped on its head daily. Not everybody is lucky enough to be in a facility like the one my dad was in.

When my parents needed to move out of their house and into assisted living, one of the main worries was “how are they/we going to pay for this.” Different facilities required different minimums—24 to 36 months—for paying privately, before applying for Medicaid. Medicaid is available only if you’ve exhausted your own money (as it should be). I wonder what will become of nursing home residents if Medicaid is cut. Will families face a choice of taking care of grandma or paying for their kid’s college education? In some ancient cultures, the elderly were banished to the wilderness when they became a burden and would have to wait alone to be attacked and killed by animals. Are we going forward or back?

The moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the aged; and those in the shadows of life, the sick, the needy and the handicapped.

Hubert HumphreyP1080561