books, caregiving, Commentary, Family history, Family story, justice, kindness, lifestyle, opinion, personal history, Social Justice, Society, Uncategorized

The ‘Gray Rhino’ moves into a nursing home; great experiences ensue

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Me and a friend, both wearing our rhino-chasing faces….and, me, of course, the T-shirt.

When The New York Times recently ran a front page story about China’s effort to combat “gray rhinos” –large and obvious problems that are often ignored until they become crisis– I was beyond excited to see one of my dearest friends getting some well-deserved props.

Then I looked for the citation – because, after all, “The Gray Rhino: How to Recognize and Act on the Obvious Dangers We Ignore” is where the term comes from, and its author, Michele Wucker, is (full disclosure) my closest girlfriend.

The closest the reporter got was this phrase, “an eponymous business book that has become somewhat popular this year in China,” 11 words of a 22-word sentence.

Subsequent stories further twisted the meaning into something that restricted the term to a specific kind of Chinese company.  Every time I read one, I wanted to hurl herds of foam rhinos at my monitor, which was problematic because I don’t own any foam rhinos. (On the upside, CNN MoneyBloombergSouth China Morning Post mentioned the book and even spelled her first name – one “l,” not two – right.)

I remember when Michele first started talking about the book, and I remember when she was writing it. I forget a lot of stuff, but I’m pretty sure would have remembered Chinese banking crises if they’d been in mix for inclusion.  Greek defaults and the Argentinian financial debacle were. China, not so much. (It would have qualified, but it hadn’t happened yet.)

So, a brief review:

So what’s a gray rhino? In disaster avoidance parlance, to paraphrase the book’s subtitle, a gray rhino is an impending and avoidable threat to which you can respond. They do not have to be big international banking crises. A gray rhino can as simple as walking through your kitchen and noticing that the sugar canister is down to less than a tablespoon.

I was dealing with one when Michele was working on her book.

‘Woman with with weird resume seeking soft landing’

Ten years ago, something happened at my grant-funded job that made it pretty clear its days were numbered. Ironically, a large component of my job involved helping other people address the fallout from their up-ended lives. I helped them figure out what their best next moves were, then did what I could to see them through those moves. Given that, it would have been pretty hypocritical to pretend I didn’t need to start casting about for my own best chance at a soft landing, which turned out to be enrolling in a library and information science graduate program.

I got laid off the year after I walked across a stage to pick up my master’s degree, spent the following 11 months of non-day-job work applying for day jobs, editing dissertations, writing freelance newspaper and web-based stories and indexing a book. Then, one of those applications panned out and, to my great delight, I landed a job as a public librarian.

Michele loves that story. She keeps asking me to blog about it. But I want to blog about a different gray rhino.

My mom.

Mom has been in a nursing home for almost four years. Before she actually ended up in one, ending up in one was her biggest fear.

Rhino avoided….for awhile

I have vivid memories of nursing home visits to elderly relatives with 50-something Mom. That woman was vibrant. She ran from morning ‘til night. She worked, volunteered, played bridge, was active in her synagogue, a regular at book group and still found time to travel the world with her sisters and host friends at her house on Cape Cod.

We’d walk into a facility and the smell – a melange of stale, damp and vague decay – would hit us. Then, there’d be the sights en route to our destination, usually someone’s room. Near-comatose old people with wispy hair and rheumy eyes sitting in wheelchairs in the halls, or arranged in rows in common rooms in front of a TV. Some would stare at nothing, some were aware of us. Some babbled weird things that were unintelligible or if intelligible, more closely resembled random word strings than coherent thoughts.

We’d find our person and have our visit. On our walk back to the car, Mom would utter a variation of the same declaration.

“If I’m ever like that, shoot me or give me pills.”

I’m pretty sure that 50-year-old Mom would shoot 89-year-old Mom.

Eighty-nine-year-old Mom, however, is not nearly as upset about her current situation.

There are, I think, several reasons for this, many of which involve a veritable herd of Michele-style Gray Rhinos. If Parkinson’s disease had not derailed her well-laid out plans, she’d be living quite contentedly on Cape Cod, using her yearly required withdrawal from her 401K to travel. She’d still be living off her pension and social security checks for daily expenses. Parkinson’s disease was the gray rhino that led us, ultimately, to what Mom – and the rest of us – didn’t think existed.

A good nursing home experience.

After nearly four years, it dawned on me recently that my family is having one. In a very real sense, we were damned lucky to bumble into it. But we also did – and have continued to do – things to maximize the “good” ness of our situation.

How to have a ‘good’ nursing home experience

I could write for days about this, but no one wants to read that much for that long. So I’ll do my best to keep it simple. Here are four tips, two of which I have never seen in any book about nursing homes.

  1. PR Rollout
  2. Show up!
  3. Their casa is your casa
  4. Plan ahead

Before I elaborate, though, a disclaimer.  A lot of what went down in the decade or so preceding Mom’s decision (and it was her decision) to move to a nursing home had reassured her that as far as my sister and I were concerned, she was still in charge. Losing mobility and stamina did not mean losing the right to have her wishes honored while she was still intact enough to make those decisions herself. That still stands now that I am in charge of making decisions on her behalf.

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Words to live by. And so benign-seeming when surrounded by painted gingerbread people.

So, without further ado, this, based on our experience, is how to have a great nursing home experience.

Create buzz

If possible, try to build some buzz around your person’s arrival. Think “PR rollout.”  We didn’t plan or intend that, but it turned out to be a lucky and very happy accident.

Mom, having made the decision that the nursing home was where she needed to be, opted to blow town and visit her sisters, leaving me to divest of what wouldn’t fit in her new room and choose what would and should. She flew off to California to spend three weeks with her older sisters.  (My daughter was headed out there for a conference, so she stopped and picked up Granny on the way; my sister flew from Canada to California, then brought Mom home to her new room.)

I spent the next three weeks cleaning out her apartment, the latter two of them moving things over to her new place, which was in an adjoining building. In the process I got to know the people on her unit. I found out that many of the CNAs had been there for years, a very good sign. They exclaimed over her artwork and listened to my stories about Mom. There was something exotic about her being in California, and the idea that she’d be arriving on a night in the future, like some movie star on tour.

I hadn’t intended the three weeks she was gone to be a buzz-building campaign, but that’s how it worked out. By the time she arrived, everyone was really excited to meet her. Note: I also decorated her room somewhat strategically, placing her United Way ‘Self Above Service’ award and other recognitions she’d received over the course of her life for teaching and synagogue involvement in view of the entrance to her room.

Be present!

I had the luxury of working a mile-and-a-half from Mom for the first two years she was at the Home. But if you can’t be the person who pops in between four and five times weekly (more often even), try to get someone else to do it for you. These don’t have to be extended visits. Sometimes the trip there and back took more time than the quick hello, hug and kiss for Mom and a ‘Hi!’ to other residents and staff people.

Now that I work on the other side of town at a much less flexible job, I’m only there a couple of times a week. But everyone knows why. My sister arranged for her to have a companion two nights a week, so even though I’m not there as often, Mom still gets outside attention.

One of my proudest moments some two years into Mom’s being there occurred when she, more lucid then, reported that on a bathroom run in the middle of the night, the attendants were talking past her (which happens, sadly). One said to the other, “We have to take care of her right away, otherwise she’ll call her daughter.” If you can’t win ‘em over with kindness, making them afraid of you is the next best thing.

By the way, about the staff people: Learn their names. And if you are that kind of person, learn their stories. My sister and I have both worked as reporters. Reporters are curious people who are genuinely interested in other people and their stories. If you’re not built that way, find other ways to be kind to the CNAs and caregivers. Figure out what’s in your comfort zone and show them you appreciate what they’re doing for your person.

Debby and I have ended up making some lovely friends. We also have gotten unofficial calls from staff who’ve let us know when Mom has needed something specific and/or something has happened of which they think we should be aware. To say that we’re grateful doesn’t begin to express our feelings of appreciation and respect for these amazing people.

Don’t treat it like an institution.

You may have to sign in and out and your house probably didn’t have elevators, CNAs and nurses (unless the latter two were your parents and/or siblings) but don’t be shy about treating the place like home. There was the time a new nurse-practitioner was looking for ice and asked a busy staffer. I knew where it was and got it for him.  My attitude? Yeah, it’s a nursing home. But my mother lives here. So it’s my mom’s house. That goes whether I’m rummaging in the kitchen for cups, straws and tops during an ice water run, fetching a towel or a wheelchair from the storage closets or helping out when dinner’s being served.

Look ahead.

Even though I thought I knew this, I didn’t. I do now because of something I said earlier: “Get to know the staff people.”

I have promised Mom a beautiful, easy death. Which is why, last month, I signed papers with hospice care. Mom gets to stay where she is, and a bunch of new people now come in to see her (social worker, nurse, personal care workers, music therapist).

She’s not at the point where anyone needs to swoop in as what my dear friend Julie (who spent a month in hospice before heading off to the Great Mysterious Beyond Place) referred to as “the pharmaceutical death factory.” But when it does, the hospice people are going to be right there to catch her.

What I didn’t know was that if those papers and that plan isn’t in place and your loved one in a nursing home takes a sudden turn for the worse, the lag time between contacting doctors and pharmacies might well mean that your loved one suffers and dies in pain.

That’s what happened recently to someone on Mom’s unit. The family hadn’t made any arrangements; their loved one did not have the easy death that would otherwise have happened. It tore at the hearts of the staff to watch someone they had come to love and care for suffer when that didn’t have to be the case.

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caregiving, Family history, Family story, kindness, lifestyle, love, opinion, personal history, pets, Uncategorized

New Business, Writer’s Block and Preventing Newborn Ignorance, One Baby at a Time

 

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My grandson and his aunt, who was so amazing as a caregiver to her sister that for a second I kicked myself for not hiring her when I had kids. Then I remembered why I hadn’t….

I will confess to not being terribly distressed to slam the door on 2015. Between the job layoff, sending my best non-human  friend Tuki to the Rabbit Field in the Sky and my mother on a slow cruise to Dementia Island, it’s been – and continues to be – interesting times.

Still, there have been bright spots. I’ve got a fledgling dissertation and thesis-writing business, and recently signed an agreement I can’t talk about to do some writing-related work that looks to be fascinating and fulfilling. And I’m pushing myself to write chapters 6 through 13 of my book, which means dredging up things I’d rather leave in the personal history sewer. The good part is that I’ll be able to throw a good number of them back there. The bad part is I won’t know which ones until I look.

Also, three weeks ago I became a grandmother. It’s not something I’d ever imagined. Which wasn’t about vanity or thinking my offspring wouldn’t be fit parents. It was about watching my friends who couldn’t have or didn’t want kids being made miserable by parents and others who were pressuring them about where the babies were.

I had kids because I wanted them. Not everybody wants them, and I had no clue about where my offspring – or their prospective partners – would fall on that spectrum. So I never really thought much about being someone’s Bubby.

But here I am, with a  wee grandson. We’ve spent a little time together, and I’m getting to know him. He’s not doing much other than the usual top four newborn things (sleeping, eating, pooping and crying), but he’s starting to add a fifth thing, staring, to his repertoire. That means he’s getting more interested in things, and that makes him more interesting.

My chief duty so far has been making sure his mother and other caregivers are fed. (My first instinct in any crisis or celebration is to start catering.) But now that he’s starting to get curious, I’m trying to answer the questions he’s not yet able to ask.

So I’m giving him tours around his house, explaining what things are (“This is a stove where food gets cooked. The top gets very hot and you don’t want to touch it then.” “These things in frames are artwork. Art is very important and good for your soul.”) and telling him about different things (“President Obama is trying to make it so assault rifles aren’t so available, which is good news.”) going on in the world.

There’s nothing sadder than a newborn who isn’t up on current events, after all.

 

 

 

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caregiving, cleaning, clutter, decluttering, Family story, housekeeping

Repo Week – Day 5: I Can Dream, Can’t I?

Yesterday Sweetheart’s brother Tommy came over to help him do some excavating. I’m not sure what they got done, because I was busy fighting with myself over letting go of useless things I wanted to keep. Also, realizing that I was doing my own excavating while listening to Garbage made me feel a bit more cheerful.

Cheerful, but not any more less angst-ridden about throwing things away.

I turned to Tom for rational advice, and he was perfect.

“Kill your darlings,” he said. Then he explained that when he cleaned up his family basement and had to make tough decisions, that’s what he told himself. I plan on remembering that one.

I was starting on a metaphorical infanticide festival when the phone rang.

Mom wasn’t having a good day and wanted us to have lunch together. So I brought take-out over to the nursing home. Mom ate three pieces of an oreo roll (tuna/mushroom). Debby had a tempura roll and something called a Boston roll, which had – I don’t know – baked beans? I had fresh rolls and a small helping of green curry. The portions are huge, so Sweetheart and I split the rest for dinner later.

After lunch, Debby came back for a couple of hours, theoretically to help me with the room. But she is working on a problematic book review. (The writer lives in the same city as she does, and they have friends in common.) The story is interesting and the writing sparkles in spots, but the book was poorly edited, so there are too many characters, too much going on and a sub-head device that’s the equivalent of a seventh-grade girl who insists on dotting every “i” with a little heart. At first it’s cute, but you want to break every writing implement the kid owns after the 20th occurrence.

So her definition of help was to sit in her room writing while I occasionally showed her things. Which, while not what I was hoping for, was better than someone who’d rather be doing something else in there, tipping me ever closer to complete meltdown.

Anyway, here’s what I got done yesterday.

A picture of a room.

It’s looking a bit better. Today it ends, wherever it ends. Hopefully in a usable, functional place that I can maintain some order.

Today, I’m inviting Sweetheart in to help with one thing – taking apart the Halle Berry chair (once upon a time it was hers) and stowing it in the attic for my oldest offspring, who wants it – and installing a light fixture.

Then, at the end of today, I’m gonna call it quits for the time being. It’ll be functional and I can relax and work in there. I don’t know if I can ever get it and the rest of the house to where I’m fully satisfied. But I can dream, can’t I?

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caregiving, Family story, journalism, music, opinion, religion

Newsmakers make news, religious fanatics make trouble and Mom’s community hosts a Debbie Friedman event with a millennial twist

It’s been a terrible week for the news business. Brian Williams has been handed a suspension without pay for six months, or as I’m calling it, “book leave.” Jon Stewart is leaving The Daily Show to have dinner with his kids. And Bob Simon, whose latest stop in a distinguished career was 60 Minutes, was killed in a car accident.

Which is senseless, but not as senseless as those three Muslim kids in North Carolina who got shot by their neighbor. Over a supposed parking dispute? And somehow, we’re searching for an explanation. The alleged shooter – who has confessed, btw, was an….atheist. Which explains it about as well as a Christian or Jew killing them would. Which is to say, not at all.

Then there’s Kayla Mueller, the young woman from Arizona who died in Syria after more than a year in captivity at the hands of those people who are doing terrible things in the name of Islam. Other than returning the world to the time when we lived in caves and threw rocks at each other, it’s hard to figure out exactly what they’re after.

I am starting to think none of this religion stuff matters very much except as a veil for mean people to hide behind and decent ones to wear in order to try and make the world and their lives better. Based on news reports about them, Deah Shaddy Barakat, Yusor and Razan Mohammad Abu-Salha, and Kayla Mueller fell into the latter category.

Moving on – as best we can after change happens – a few weeks ago was Debbie Friedman’s yahrzeit – the fourth anniversary of her death. Her birthday is coming up in a couple of weeks. She would have been 64. Not a day goes by when my mother and aunts – who considered most of their kid pile one amorphous group of offspring – aren’t thinking of her.

Debbie might not have lived as long as her family and friends and the millions (I am not exaggerating here) of people who loved her music wanted her to. My sister and I were sure we would hang out being old ladies together with Debbie and her sisters. But she lived long enough to be remembered by people she never met. Some of those people work at the nursing home where Mom lives. One, the music therapist and activities person, Amy, approached me about six months ago with an idea.

“What would you think about having a concert of Debbie’s music around her yahrzeit? I was thinking it would be really great for your mother to help plan and be part of it.”

What did I think? I thought it would be great. The next thing I knew, Amy had Trish involved. Trish is the activities director on the assisted living side of the house, where Mom lived before she moved to the nursing home. Trish’s daughter Lauren and my Alex were playmates from the time they were about four. Now they’re both married – to Canadians – and living above the 48th parallel. Anyway, Trish is an activities genius.

So I told Trish about The Box. Mom has saved every scrap of paper from Debbie’s career that she ever acquired. I had it in a box to send to Aunt Freda for what will surely be some Debbie Friedman Archive somewhere someday that scholars will seek out. People will have to wear gloves to handle stuff that was jammed into various bags and between pages in books until I was tossing and sorting things in advance of her moves to where she is now. Trish was very excited about The Box, and started making noises about a display table.

She also made noises elsewhere. By the time Concert Day arrived, there’d been a squib in the local Jewish paper and a slew of local rabbis and cantors had signed on to take part.

Mom and I each got to pick a song to sing. She picked L’chi Lach, because she loves it.

I picked “Set me for a Seal,” because Debbie wrote it for my sister and brother-in-law’s wedding and we sang it together under the chuppah. She taught it to me, and then, intermittently for the entire weekend up to the wedding itself, my cell phone would ring and I’d pick it up and say hello.

“How does it go again?”

So I’d sing it for her.

Anyway, what with the Parkinson’s and all, Mom’s voice sometimes gives out. Also, I didn’t want her to have to stress about finding a key in which to sing. So we decided to do it with cello backup. That way, I could follow her around. Also, I played the melody through once, bowing, and then plucked so she could hear but the cello wouldn’t overpower her voice. It worked well.

Mom sings L'chi Lach. I pluck.

Mother/daughter bonding: Stillish life with cello. That’s Debbie on the movie screen. Mom was singing L’chi Lach. When she had her bat mitzvah in 2004, Mom led MiSheberach, Debbie’s setting of the healing prayer. Debbie stood behind her and played while Mom sang. At this concert, Rabbi Steve Adams did that prayer and he asked me to play guitar. I stood behind him the same way Debbie had for Mom. It was my quiet shoutout to both of them.

We were first, but before that was the best millennial part. Thanks to technology, I was able to get Aunt Freda up on FaceTime and she got to see the 200 people who’d showed up. I introduced her to the rabbis and cantors, showed her the display table and then shoved the microphone up to my i-pad. She thanked everyone for coming, and heard the audible gasp of disbelief when she said that Debbie was so afraid that no one would remember her music.

We lost the connection somewhere between the first and second song, but it was a truly lovely and meaningful afternoon, and I felt connected to Debbie, my family and the community in a way I hadn’t before.

Everyone was backing everyone else up – we had a bunch of guitars, a mandolin, a drum and the cello. Mom got invited up to play timbrel when Amy sang “Miriam’s Song.”

That's Mom on timbrel for "Miriam's Song." Amy the activities goddess is playing guitar. Behind her are Cantors Lauren Phillips, Karen Berman and David Barash (with his tabla).

That’s Mom on timbrel for “Miriam’s Song.” Amy the activities goddess is playing guitar. Behind her are Cantors Lauren Phillips, Karen Berman and David Barash (with his tabla).

We were in front of a theater-sized screen with an image of Debbie on it. As the last song, we sang “T’filat Haderech (The Traveler’s Prayer).” But it was Debbie singing on the screen, and we all picked her key and played our instruments and sang with her. I was very involved in making sure I was in tune, in time and listening to the other musicians (this was our first and dress rehearsal as well as the performance) so it wasn’t until the song was over that I looked over to find Mom, crying her eyes out and pretty much a mess.

For a second, I felt like the worst and most selfish person in the world. Here I was, sawing away on my cello while my mother was falling apart five feet away and I hadn’t noticed.

Then, I realized that it didn’t matter. Trish, Amy and other people she knew and loved were there, comforting her and lifting her up. If Debbie could have seen it, she would have hugged those women and invited them to dinner.

Years ago, Debbie had given me one of her “This is how it is” talks about how Mom shouldn’t be living on Cape Cod anymore because the climate was bad for her Parkinson’s and she should be in California with her mother and Aunt Ann and she was trying to get her to move. All I could think was “Do you want to kill her? Because if you take her away from her community, that’s what will happen.”

I said something like “Good luck getting her to leave the Cape,” adding a silent “Let me know how that works out for you.”

By the time Mom was at a point where she had to move, Debbie was dead. Mom chose Milwaukee. We all loved the idea of Mom & her sisters together, but California wasn’t practical.

Debbie would have hated it too, and agreed. She would have been a regular presence in Mom’s life, calling, visiting, singing and comforting. What I realized in the moment after catching sight of my weeping mother, surrounded by so many loving women, is that even death hasn’t stopped Debbie from that.

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caregiving, Family story, lifestyle

Travels with Mom: a trip to the Neurologist

So, yesterday I took Mom to the neurologist.

She’s been having more of these spells where one minute she’s fine, and the next she’s crumpling up like a boneless doll. They’re not pretty. The nurse practitioner at the nursing home where she lives thought it might be the Parkinson’s disease progressing, so we moved her April neurology appointment to yesterday.

When I showed up – after a stop at our current favorite Thai restaurant for the fresh rolls and sushi she’d requested – she was waiting for me with her coat on, but instead of using her walker, she was sitting in a wheelchair.

“Where’s your walker?” I said.

She looked at me the way she does when she doesn’t want to say the wrong thing. It’s not a fun thing to see. The mother I used to have would have said what was on her mind without hesitation.

Photograph of blogger and her mom

A picture of Mom and me during our 2011 “From Massachusetts to Flyover Country” road trip.

“We always use the wheelchair when we take her off the unit now,” Jennifer said. She’s one of the nurses at the Home. She’s tiny, efficient and delightful. “We always use it for any distances, if she’s going to Temple or an activity off the floor.”

For the past month or so, we’ve mostly been hanging out in Mom’s room, so this was news, although it made sense. I was just trying to figure out where to leave the wheelchair when we got to the car, the logistics of getting one at the hospital where her appointment was, and then doing the whole thing on the trip back.

When Jennifer explained that it was a travel wheelchair that would fold and I could take it along, I felt better. So, off we set. I had to get her to a standing position when we got outside and help her fall, more or less, into the front seat. She has a disc that rotates – kind of like a lazy Susan for your butt – on the seat, so I was able to lift her legs and swing them into the car once she sat down. But she ends up sprawled into the passenger space, legs on the floor, her back not touching the backrest and her head kind of aimed at the ceiling. It looks as uncomfortable as Mom has assured me it feels. So then there’s the part where I direct her, (“Put your weight on your feet and push yourself back in the seat. You can do it, Mom. You can! …Good….good….you’ve got it…you’ve got it….yes!”)

Then I buckle her seat belt and get the walker (or in this case, wheelchair) into the car, and off we go. It used to be that I’d pick her up early and we’d go out for lunch. Picking up “to go” and eating at the hospital seemed like a smarter idea this time. But I was reconsidering even that. She seemed half asleep. Then she said something.

“What?” I asked.

“You know Lou,” she said. Lou is one of the women at the nursing home. Her granddaughter and Alex were playmates when they were small.

“What about her?” I said.

“Her parents were coming to pick her up and take her out today.”

Lou is 94. This was not good.

“Her kids, you mean,” I said.

“No,” Mom said. “Her parents.”

This went on for a couple of rounds. Mom is not usually this kind of dotty, so it took awhile to sink in that my mother didn’t think there was anything out of the ordinary about a 94-year-old woman’s parents driving to the nursing home to pick up their daughter who has dementia in order to drive her back to their house for a visit.

I did a bit more checking, and sure enough, Mom was totally cool with the whole 112-year-old parents thing. (That’s assuming they were 18 when Lou was born, of course, which they probably were not. They were probably older, probably closer to 118.) So I dropped the subject and thanked whatever deity there is out there that we were on our way to see the neurologist.

We got on the highway. I kept my eyes on the road, except when I was checking on Mom. Who did not look like she should be going anywhere, unless it was bed.

“Help me.”

The words came out in barely a whisper.

“What?”

“Help me.”

“What do you need me to do?”

“I don’t know.”

I didn’t know either. I was just glad we were on our way to a doctor. It took us about 15 minutes to go 10 miles. It took another 20 to go 1,000 feet from the hospital driveway turn-in to the drop-off point where we could ditch the car and enter the building.

Mom spent that time probably regretting having been such a good role model for road rage. Worry and hunger do not bring out my best self.  We had left a comfortable time cushion for getting to the appointment. But it was supposed to have been for lunch-eating purposes, not being cast in “Hospital Apron Traffic Jam, the Reality Show from Hell.”

Cut to: the exam room. I tried to get Mom to eat. She wouldn’t. I tried to get her to drink. She wouldn’t. I was hungry. I ate. I was thirsty. I drank. Dr. B came in. She asked Mom about her trip to Canada in June. I showed her photos and a video of Mom walking down the aisle at Alex & Tevie’s wedding.

She asked about what was going on. We told her. She read the contents of the envelope the nursing home had sent. She tested Mom’s strength. It was good. Then she took Mom’s blood pressure. It was low. She said that it was a simple fix, and would account for the weakness and the weirdness.

“If there’s no blood going to your brain,” she said, “You’re gonna be dopey.”

Dr. B said she would call the nurse practitioner at the Home and have a conversation about the blood pressure issues. She also told Mom that she needs to eat and drink, and asked us to come back in three months.

Mom looked a lot more alive than she had when we’d come in.

“That was good news,” she said. I agreed. I handed her the fresh roll she wouldn’t eat before.

I wheeled her to a place near the door but not outside, and went to get the car. When the valet parking guy said it would take about ½ hour to get the car, I told him I was going to take Mom for a coffee while we waited.

We chatted on our way down to the café, and when we got into the dining room, a work colleague was sitting at a table by herself. Melanie teaches nursing at the tech school where I work. She was visiting a friend at the hospital. We sat together. I introduced her to Mom, and we talked about the appointment, what had happened, about nursing homes, about getting older and exchanged a little work gossip. Mom was more animated than I’d seen her in ages. She even ate all of her sushi, which hardly ever happens.

Mom and Melanie

Mom, eating her last piece of California roll, because Melanie told her how happy she was seeing Mom enjoy it so much.

On the way back, I told her how upsetting it was to have someone ask for help and be in such visible distress and not know what to do to make it better. I asked her what she was experiencing in those moments, and what I could do.

“I don’t know,” she said.

We’ve talked previously about quality of life issues, and I asked her if she was getting to a point where that was starting to matter. She told me that mostly, it isn’t. We agreed that the best thing in the world would be to die peacefully in your sleep, either during a nap or during the night. We talked about what would happen if that didn’t happen, who would be with her, and how we would do things.

Then, we made plans to go see an exhibit at the Jewish Museum this weekend. When we got back to the her room, I showed her – with no small amount of trepidation – the post I wrote last week about my dad and breasts.

I watched her read it. It felt like it took as long as the hospital apron traffic jam had (it didn’t).

She liked it.

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caregiving, Christmas, Family story, Holidays, lifestyle

‘I’m not big on long goodbyes’ or Death at Christmas

Like most working people in the US, where Christian culture is majority culture, I’d been looking forward to a couple of days off at Christmas.

It’s not my holiday. But I get to partake of its best parts because Sweetheart’s family is a mashup of Lutherans, atheists who grew up as Lutherans & Catholics-by-choice. Sweetheart was nine when his parents split. From that point on, it was Christmas Eve with Mom and Christmas Day with Dad. That’s carried into adulthood, except now Dad is at the Mom celebration and Mom comes to Dad’s brunch. They’re what it looks like when you decide to stop letting the past get in the way of the present and learn new ways to be kind.

It makes those big life transitions so much easier. When First Husband died, Better Wife than I’d Been called me right away. (Unexpected, as BW adored FH and loved my children, but not so much me. I was fine with that – she didn’t have to be nice to me as long as she was good to them.) Together, we got the six combined kids (three apiece, ranging from 19-29) through that terrible time. At that point, I hadn’t spoken with First Husband’s father Sidney for about five years. But BW’s father was dying, and she’d just been widowed for the second time. She had her hands full. So I started calling Sidney every week to check up on him and let him know how his granddaughters were faring.

I was particularly worried because of Mrs. Sidney – I’ll call her Barbara. He’d married Barbara within a year of FH’s mother’s death when FH was 15. She had never warmed to Sidney’s children, and didn’t share his level of anguish. She wasn’t crazy for me either, but time passed. Things changed.

We’ve had lots of breakfasts and dinners together, a couple of Passover Seders (one that included BW & her family) and those weekly calls.

Mrs. Sidney and Sidney. This photo was taken in April.

Mrs. Sidney and Sidney (z”l). This photo was taken in April. The (z”l) is a Hebrew abbreviation for a phrase that translates in English to “of blessed memory.”

I’ve seen Sidney go downhill steadily since First Husband’s death.

This past June, he pulled Barbara down as she was trying to help him up after another of his increasingly frequent falls. Doctors diagnosed a brain tumor. They gave him two to six months. Barbara, who doesn’t drive anymore, found a nursing home nearby. She visited a couple of times a week and wondered aloud more than once what, if anything, either of them was getting out of those visits. My mother is in a nursing home here, and I see lonely people with no or infrequent visitors. It’s not pretty. I had a hard time understanding the way she was dealing with things until the day she told me she’d never seen anyone die before.

She’d never seen anyone die before?

She’s in her mid-80s. I feel very lucky to have seen people die. It’s made me much less anxious about the whole process.

Now, Sidney has given two of his granddaughters that gift.

The youngest, Talia, is a 27-year-old undergrad who works as a nanny. She lives about two hours from the nursing home. Since June, she’s been there every week when she’s not in school and every other week when she is.

On Tuesday, the evening before my first day of Christmas break, she called me at 9 p.m.

“Has anyone told you what’s going on with Grandpa?”

“Ummm…..no. What’s going on with Grandpa?”

“I’m in his room. He’s dying. Barbara called to tell me they said she needs to have a CNA in his room 24/7, so I told her to tell them I was coming down,” she said. Then she said something I knew she hadn’t told Barbara.

“There’s no way I’m going to let Grandpa die alone with a stranger in his room.”

I live a scant hour and a half from Sidney’s nursing home.

“Do you want me to come down?”

She burst into tears.

“Oh, Mommy! Would you?”

I would.

When I got there, he was actively dying (unconscious and in a state of possible semi-awareness). He was also agitated. I rousted the nursing staff when I found out that his last dose of morphine had been about two hours before.

I had Talia call Former Sister-In-Law, who was in from Texas and had taken off from her job to be there. (All I could think was – Lord, please don’t let him die with me in the room and NOT her). SIL and her lifelong best friend arrived at about 11:30. By 5 a.m., when they left to nap and shower before returning later in the day, Talia’s sisters had flights. Alex was coming in at 1 p.m. and Liza, who’d just seen him a week before, would arrive the next night.

Barbara showed up at about 8:45. The Hospice Nurse was there and told her she might want to tell him that it was okay for him to go.

She sat by him. She took his hand and said, “You’ll be in a better place, and we will all be okay.”

Then we went out for breakfast. She offered to split the bill. I didn’t let her.

I dropped her back at her place for a hair appointment (she lives in one of those all-inclusive assisted living complexes), hit up the grocery store for some provisions (a box of clementines, some grapefruit soda, a green plant) and headed back with food. Talia ate the to-go breakfast I’d gotten her and took off to fetch Alex from the airport.

We were alone for a bit.

I told Sidney that we’d all be okay and I’d keep up the weekly calls to Barbara. I played my guitalele and sang a bit for him, and then Vicky the Hospice Nurse, who turned out to have a great voice, showed up. We harmonized on songs we couldn’t remember the words to and told Sidney we were worth every penny he was paying us.

I also told him that for a man whose stock lines included “I’m not big on long goodbyes,” he sure seemed to be stretching this one out.

Then, I remembered that I had Mandy Patinkin singing Yiddish songs on my iPad (Sidney was a big fan of Yiddish songs). So I put that on for him. Alex & Talia arrived, then Cathy. When my daughter-in-law Abbi showed up a little after 3, it was okay – better in fact – for me to head out. The room wasn’t that big and at that point I was just extra baggage.

I sat beside him. I gave him a kiss.

“I’m not big on long goodbyes,” I told him.

Then, I made my way back to Milwaukee, exhausted but just in time for Christmas Eve with the in-laws.

Talia called at 8 to tell me Sidney had died, with Alex and Talia each holding one of his hands, Cathy with her hands on his head and Abbi sitting nearby.

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caregiving, lifestyle

Old mothers, bad daughters, & therapeutic books

I have an old mother and an old dog. My dog lives with me. My mother lives in a nursing home four miles away, and I am her Primary Person.

In the abstract, being Mom’s main person is a huge honor and I know full well how lucky I am to still have her. In reality, I’ve turned into a short-tempered bitch who alternates between hating myself for being the worst daughter on the planet and being angry at my mother for being so unreasonable.

The truth is that there simply are not enough hours in a day – or a week – to give my best at work, home, to my writing, my dog, my Sweetheart, my music, my exercise routine, my friends and Mom. Who, since moving to live near me, has become a combination of the best parts of the mother I have always known and someone I’ve never met before.

Parkinson’s disease was not part of her life plan. The Cape Cod condo she bought in 1984 was supposed to be her last stop before joining Dad in the cemetery.

“I want to be carried out of here feet first,” she’d say when mortality was the topic of conversation.

She had no interest in being cared for by offspring. (“I don’t need anything from you and I don’t want to live with you. Go live your own lives. I have long-term care insurance.”)

I have vivid memories of nursing home visits to elderly relatives with 50-something Mom (“Just give me pills if I’m ever like that”).

When my grandmother became too old to live by herself, Mom and her sisters were militant about keeping her out of a nursing home. They took turns having her live with them. Bubby spent four months a year on Cape Cod, four months in California and four in Florida. Mom only had one rule.

“You are not allowed to die on my watch.”

I have not made rules for Mom. It seems irrelevant (although Bubby did die in California with my Aunt Freda, so I could be wrong). It also seems kind of cruel, given how her plans to grow old worked out.

In a lot of ways, we’re lucky. As nursing homes go, she’s in one of the best. Her unit is single rooms around a communal living area. There’s been virtually no staff turnover in the time she’s been there, and I’m on a first-name basis with most of her caregivers. They are wonderful people who do a difficult job well. I talk to Mom daily and see her several times a week. Sweetheart and I bring in take-out and we also take her out when she’s up for it.

My sister, who lives 1, 400 miles (2250 km) away, comes about three times a year. Debby takes Mom to lunch. They go shopping and play word games. Debby has infinite patience with Mom. She has also learned to be patient with me, her ranting sister.

It’s been a growth experience.

Neurosis and guilt are baked into our DNA, so it’s been a challenge for Debby to wrap her mind around the notion that when I call ranting, I’m not beating her up for not being here. I just need to vent to someone who has as much of a stake in this as I do. Someone who understands how hard and terrifying and overwhelming it is. Someone who gets just how infuriating it is to try and be patient with the mother who regularly engages in behavior for which she would – and sometimes did – slap you into next week as you were growing up.

Thanksgiving was Thursday. Mom was here. Wednesday, I was there. Friday I was there. Saturday I was there. Today I really wanted to just stay home. So when Mom called this morning to tell me she had a hangnail and that she really needed prunes (which, trust me, they buy in pallets over there), I was sweet and kind. Then I hung up the phone and called my sister, screaming.

“Unwrap the Hanukkah present I got you,” she said. “You need it now.”

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The Hanukkah present Debby got me. (Now someone needs to send me something else to unwrap.)

She wasn’t kidding. It might not make everything about our Mom situation easier, but Roz Chast’s graphic memoir “Can’t We Talk about Something More Pleasant” is making me laugh at the same time it’s making me feel a lot less alone.

You don’t have to be in our situation to fall in love with this book. I’m sharing a link that will let you locate the library copy closest to where you are. No need to thank me.

But if you insist, just make yourself available for the occasional rant.

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