Sunday, August 23, 2015

Death of My Dad

I'm home again.  I've been back a week now.  I was away for almost three.  It feels much, much longer.  Despite everything I can't quite grasp that my dad is really gone.  That realization comes and goes at odd times.

I need to sort out the death of my dad in writing.  I'm already forgetting so much.  I don't want to forget anything, but I also need to get some distance in order to function.  To preserve these memories I have to revisit them, but I can't live in that place right now.  I believe by writing them down I can safely set them aside for another time when I'm ready.

I don't know if this post will be of interest to anyone but myself.  All I know is it is long. 

I got a call at work from my mom on a Tuesday afternoon.  She was crying.  I knew she had been in the hospital with my dad, but there have been so many trips to the hospital with my dad in the past several years it's hard to know which occasions required our presence.  This time there was no doubt.  My mom said I should come, so I dropped everything and came.  I left my husband with instructions about the few things that needed tending at the store, I stopped at home to throw a few things in a bag, and I was on the road within half an hour. 

I arrived at my parents' house in Michigan right around 9 p.m.  There was a note on the table from mom saying she would be back around then, so I took some time to unpack my few things, check email, get a drink of water....  By about 9:40 I decided to simply call mom's cell phone, found her still at the hospital, and she gave me directions so I could come by and say goodnight to dad.

Providence Hospital is only about 15 minutes away from my parents' home in Pleasant Ridge.  The parking lot has a mysterious attendant that simply lets everyone through, so I don't know what purpose that checkpoint serves.  I walked into the Emergency Entrance and told the man at the desk I was looking for Arnold Klein.  I got a visitor's pass for Room 256 and was instructed to take a long walk to the B Elevator.

My dad's room was next to the nurses' station.  Lots of activity and noise.  No roommate that night, at least.  Supposedly the other floors were more attractive, but this one was depressing.

My dad was glad to see me, but he was a weaker, disoriented version of himself.  He's had such a history in recent years of troubles and falls.  When cancer took most of his colon a few years ago he was left with what he referred to as a semi-colon, which always made me laugh.  He'd decided a while back that he didn't want to go to the hospital anymore, that whatever problems arose he wanted to deal with them at home.  However, he'd had horrific bouts of vomiting and my mom didn't know what else to do.  He went into the hospital, came back home, the vomiting returned immediately, and he went back.  It was not long into this second trip to the hospital that my mom called me.  There was talk of hospice, but doctors always seem to offer up yet one more procedure, so it's hard to know what to make of all the information.

The days in the hospital alongside my mom were long and confusing.  The nurses were all nice, but the doctors didn't talk to one another.  Everyone who came into the room would expect us to tell them what was happening, and often we had to redirect them.  At one point the person who was supposed to be my dad's main doctor came in and said dad should start having soft foods so we could prepare to take him home.  Mom and I said no, he was not supposed to eat anything because he was heading down for a procedure soon.  I don't understand what happens to people in the hospital who don't have someone to sit there with them all day, or who can't advocate for their own care.  It's frightening, honestly.

Most of the time in the hospital is boring.  It's a strange sensation to be anxious and bored at the same time.  It's draining.

My dad was like himself most of the time he was awake, but often he'd be convinced of things that weren't real.  It was hard to know when to go with it and when to try to clarify things for him.  There was one time when dad thought a man in the hall talking to a group of people was my brother Arno, and he looked so proud to see his son out there commanding the respect of doctors.  Since my brother was on his way it seemed better to let dad know the truth, but when I told him that, no, that man wasn't Arno but Arno would be visiting soon, my dad burst into tears.

The better moments were the ones dad spent sketching or chatting a little.  I'd help him drink apple juice.  I read him a bit of poetry by James Merrill.  We'd bring him the paper each day.  He surprised me and mom with a story we didn't know about his having tutored women in painting on the beach after college.

Among the worst parts was that dad was emotional.  He was sometimes frightened, and he cried at unexpected moments.  He had a tube in his nose which he hated, and we had to put him in restraints at night so he wouldn't pull it out.  It was horrible.

In past years during hospital visits I would play viola for him, which was something I could offer when he was awake or asleep.  That also had a way of differentiating him from other patients which I think made people treat him as someone special.  But I didn't have my viola.

We had a family conference with a doctor, a family friend who is a doctor at the same hospital, and both my brothers via phone.  Dad was asleep.  We decided the installation of a G-J-tube might bypass the blockage (which was preventing him from eating) so he could get nutrition, while also making it possible to drain irritating fluids from his stomach.  My mom mourned the idea that she would never get to cook a meal for my dad again (her "best audience," she always said), but at least we would have my dad.  Impossible to say for how long, but the doctors made it sound like it could be years.

The next day was like a cruel roller coaster.  Dad was put under general anesthesia so they could get an extra long scope down his throat to investigate what was really going on before they did the procedure.  The doctor was not available to talk with us afterward for some reason, so his fellow talked to us instead.  She was nice, and I'm sure she meant well, but she really messed up.  She told us that the scope had gone right through and there didn't seem to be a blockage, and that she didn't see anything that looked like cancer.   We started to wonder if there might be a solution to the problem after all, that maybe dad had beaten the odds yet again.  Never have I experienced hope that was more false.

We went home for a late lunch since dad would be unconscious for a while after that procedure anyway, and mom emailed a few people with what she thought was good news.  In her heart, she confessed to me later, she never believed there was good news.

When we came back to the hospital everything was in motion for dad to still have the procedure to install the tube, but we didn't know why, and we had our friend make some calls so we could get some answers.  We finally talked on the phone to the doctor who had actually done the procedure.  Everything came crashing down.  It turned out the scope had not gone through easily, it had to be forced, the blockage was severe, and there was cancer which was inoperable.  Why we were told anything different earlier was inexcusable.

When we expressed our frustration to the doctor who had coordinated everything, he became defensive and told us he was only really helping us through the goodness of his heart, anyway.  It was infuriating.  We didn't talk to him again.  I'm sure we were simply dismissed as being over-emotional because of the circumstances.  But I can be sad and still able to assess when something has been handled badly, and this was handled badly.

Friday morning we arrived early.  We got to talk to the doctor who had done the scope procedure in person this time.  He explained in frank terms what the installation of the tube really meant.  It was complicated.  The chance of success was only 50-50.  He reminded us we could call it off at any time.  I asked what he would do.  He said he would personally opt to avoid that additional pain and simply go home and try to be comfortable.  Dad was asleep during this whole discussion.  It was hard to know what to decide or what to think.  The procedure the day before had been traumatic for dad.  We didn't want him to go through another such event, but at least we had it in mind that no matter what it would be his last.  And if it worked....

But then they needed to prep dad for the procedure.  They had to draw more blood.  My poor dad at that point hadn't really eaten anything in so long, he was skin and bones, and his arms were just a mass of ugly bruises where they had tried and failed many times to insert needles.  It hurt my dad so much.  I told mom to go get some coffee so she didn't have to watch and I'd stay with dad.

I comforted him through the blood draw, but when they went to put the tube back in his nose he balked.  They'd removed it to do the scope the day before, but now they wanted it back in for the procedure.  It was the final straw.  Dad held my hand and looked at me with an expression somehow both pleading and calm, and told me he was done.  No more.  No more to all of it.  I think that may have been easier for him to say to me instead of mom, I don't know, but in that moment I understood this was the start of goodbye.

I had someone page mom as I staved off the nurses and held dad's hand.  I told him he was brave.

Mom walked into the room, coffee in hand, and I told her simply that dad was done.  Her face was pained as she set down her cup and went to my dad.  She crawled onto the bed with him and they cried together.

I left, shut the door behind me, and sat on the floor in the hall to cry alone.  The nurses knew just the right amount of distance to give me.  They'd seen it before.  I called both of my brothers who were arranging to come out to Michigan anyway and told them they had to come now.  I took a short walk through the hallways.  I went back to the room where mom's eyes were still red, but dad looked the most relaxed I'd seen him in the hospital.

Once we officially got the hospice procedures rolling, everything moved quickly, which was good because we couldn't get out of the hospital fast enough.  The hospice representatives we met with in the hospital were efficient and kind.  We even got to meet with them two hours earlier than scheduled because they had an unexpected break which they used to check on us.  They explained that all hospice costs are covered and they arranged for an ambulance to bring dad home and get him settled into a chair until they could arrange for a hospital bed to be delivered.  They told us not to worry anymore about the barrage of pills dad has been taking twice a day for years.  No more meds except for ones that could be absorbed through the inside of his cheek to help with pain. 

I went home ahead of my parents to move stuff around so the bed could be set up in the library.  It's a large room on the ground floor where dad could be surrounded by the books he loved, and near his desk and articles and colored pencils.  I kept thinking about how that morning dad had told us upon waking that he'd seen what happens to all of us in the future, and that he couldn't share it, but it was all good.

Things I've learned from the hospital:  If I have to do something like this again with a loved one I will have a notebook with me.  I will write down every single thing I'm told by anyone official along with a date and time--read it back to him or her until it's agreed I'm understanding correctly--and make people sign it.  If they won't sign I will at least get down the name.  It's impossible to keep track of the drugs and the drips and the instructions and the people.  I will document.  And I will insist, for instance, that any blood that needs to be drawn is done under anesthesia if possible.  Why would they have to poke my dad for more blood while he was awake if it hurt?  It wasn't necessary, and I should have said something at the time.  Also, if there is any way to avoid anything in a hospital on a weekend, wait for a weekday.  The difference in care is noticeable.  (Not that that can really be helped, but wow.)

Before dad was even home from the hospital there was already a friend filling our refrigerator with food.  How do people get by who don't have friends and family who step up when needed?  I can't imagine.

Here is a side note about food in general:  Lots of people were generous about bringing food, both during hospice and after dad passed.  My mom did not have to cook until the last day or two of my visit, which was amazing.  And the thing about help when you really need it, which I learned during my husband's deployments, is it's best when it just happens, not when it's offered and you can say no, because the polite instinct is to always say no for some reason.  So there were people who simply announced they were bringing dinner by that night and just wanted to know for how many people.  There was Middle Eastern food (Detroit is the best for that), lots of dessert, and one memorable evening when we were introduced to the glory that is (or what I think was) "thousand layer lasagna," which I'd never heard of before but will probably think of every day until I get to eat it again.

Which brings me to my current eating habits: Those had to go out the window.  I paid for that in headaches and barely being able to button my pants after the first week, but there was no way to be that stressed and sad and also deny myself cookies or the chance to eat with everyone else.  I ate whatever chocolate I could find.  I had cereal.  I had pizza and some amazing gnocchi and creme brulee and falafel and toast and pulled pork and french fries and my mom's bread pudding with dried cherries.  I had some of the best food I've ever eaten.  I also ate things I didn't particularly even like just to be eating because I needed something and I couldn't think of anything else and it was there.  But I'm back on track now.  It will be part of leaving that whole experience behind me, for both good and ill.

Dad arrived in the ambulance a bit after 2:00.  (The meeting with the hospice people had only taken place at 11:00.)  The attendants were wonderful about getting my dad situated comfortably in his chair in the library.  He looked immediately more like himself.  He'd been looking terrible in the hospital, but now unhooked from all the tubes he was like the dad from recent visits.  He joked and smiled and didn't appear to be in any pain.  He was glad to be home.  Mom gave him a haircut and he looked even better, but we were waiting for my brother to arrive with his electric razor in order to give him an overdue shave.

A lovely hospice nurse named Gail came out to walk my mom through certain paperwork and give her information on what to expect.  Gail admired the books in the library and told us a funny story about preparing to sell a bunch of text books by laying them out in a friend's apartment, but then losing them all in a fire.  It worked out in her favor because insurance paid for them all, but she was still saddened by the idea of all those burned books.  She, like all the other hospice people, showed us the number to use if we needed to "call any time."

The bed arrived.  The man who assembled it gave me many instructions about what to do if the power went out since the bed was inflatable.  There was a special release valve if CPR needed to be administered, an emergency hand crank stored under the mattress, two modes of inflation (static, and an alternating setting to help prevent bedsores), several levels of firmness, three kinds of adjustments on the remote, a choice of rails, and I was told not to tie the mattress to the frame in the middle because they were by different manufacturers and it wouldn't work.  More information than I would ever need.  All I could think of was how many other people had died on that bed.

The bed delivery man departed.  Mom was still in the dining room with the nurse.  Dad was content to hang out in his chair, and I think we were starting to discuss if he'd like to draw when he was done looking through the New York Times when in the back door came my brother, Barrett, with his wife Dosha behind him and his new baby in his arms.

It was a big trip all the way from LaCrosse to do with a three-month-old, but the only thing my dad had said repeatedly that he needed to do before he died was meet Rivyn.  I will never forget the look of love and delight dad had on his face when Barrett placed that baby in his arms.  It was beautiful and heartbreaking.

I've already written a little about my dad and Rivyn, but I have to add what an incredible experience it was to get to live in the same house as my new nephew for two straight weeks.  We got to see that baby grow and change the way babies do in a short span.  What a gift.

Not long after Barrett arrived with his family, our other brother, Arno, arrived from Seattle with his daughter, Ellora.  Not long after that my husband and our kids pulled into the driveway.  They all got to meet Rivyn for the first time, too.

This was a dozen people in the house, and Arno's wife due to fly in the next day.  We had offers from people for sleeping arrangements at other houses, but no one wanted to be that far away.  Thankfully Ian brought tents.

The odd, and rather fortuitous thing about the timing of everything was dad's hospice overlapped not only with some time Arno had off and a break in Barrett's schedule, but with the two weeks our family had blocked out for a camping vacation.  We had a trip mapped out to Glacier and Yellowstone and the Badlands...  Our original plan was to drive out to Seattle to pick up my niece and take her with us to some parks.  None of that happened, of course.  Instead all the tents and air mattresses, etc., that we'd carefully packed the car with came to Michigan.  The four kids had a big tent, and Ian and I shared our small one.  It was really pleasant sleeping in the yard, and I can't think of any other way we could have all comfortably stayed at the house together.

The only downside to the tents was that the larger one for the kids was relatively untested.  We won it in a raffle at an Army picnic a dozen years ago, and had only taken it out of the box to prepare for our summer trip.  It was a great tent until the storm hit.  The rain shield filled with water and the weight of that bent a pole causing the whole thing to collapse.  No one was in it at the time, but the kids had left many (what turned out to be expensive) library books in there, and all but one was destroyed.  The kids tried valiantly to dry them with a fan, but oh well.  We went tent shopping the next day and found a bigger, nicer one that will serve us better in the long run.  Preferable to have the original tent give out in my parents' backyard than at Yellowstone.

I can't begin to describe how much better everything was with dad home and all the people there.  The hospital was a lonely nightmare.  Home with everyone gathered was wonderful.

And that was the remarkable, but strangely disconcerting thing about this whole experience.  It was absolutely terrible, and it was also one of the best experiences of my life.  It was impossibly sad to know we'd be losing my dad.  It was gut-wrenching to watch him suffer.  But time with my brothers is rare.  We tried to remember the last time we'd had such a long stretch of time with all three of us together, and I think it was back in the summer of 1989.  Which is a shame, because I love them dearly, and admire them, and the more time I spend with my brothers the more I wish that were the norm.  And my husband and all the kids were there, and Dosha, and for a few days Deepanjana.  And the new baby.  It's rare to be in the company of that many people that you can gather in any combination and have it be equally welcome.  We couldn't help but be happy, and laugh, and enjoy each others' company.  And then we'd each have our moments to break down and cry.

Saturday Deepanjana arrived, along with their dog, Pepper.  We didn't have Pepper in the house very long because she went down with my Uncle John to stay in Ohio, but it was fun having a dog around for the little while we did.  (It made me miss our Chipper, off in a kennel in Wisconsin.)  The beautiful thing is at that point we had everyone.  Both my parents had all their children with their spouses, along with all of the grandchildren, under one roof for the first time ever.  We were all painfully aware that this was the only time that was going to happen.

I played some music for my dad.  I didn't have an instrument of my own, but Barrett had been kind enough to bring his mandolin, so I sat at the foot of dad's bed and played whatever Bach I could from memory.  My dad once told me years ago how much he loved "Sheep Shall Safely Graze" and asked if I would play it at his funeral one day.  I told him we should associate it with something more cheerful and I had friends play it at my wedding.  But now at the end with so few requests I knew of to try and fulfill, how could I not play it?  I had Arno print me up a version in a friendly key off the internet and I played it again and again as dad rested.  He sang along quietly in his sleep.  Aden even got to play a little violin for her grandpa and he loved it.  I wish there had been room in the van for all the kids' violins so they could have played him a trio.

Saturday was also the beginning of a lot of activity.  The letters had begun to arrive, a few of them FedExed overnight to make it in time to read to dad, and there were flowers, along with visitors including my Uncle John and his family.  My dad was in good spirits most of the time.  He was weak and he was sleeping a lot, but when he was awake he was himself.  He seemed pleased with the attention.  It was easy that day to forget that he would not be getting better.

On Saturday evening I was talking to someone and trying to recall when we'd brought dad home from the hospital and could not get my mind around that it had been the day before.  It felt much longer.  Days.  I took my mom aside and said, "Do you realize we were in the hospital yesterday?" and her eyes got wide and she said, "That can't be true.  Is it?"  She was the only one who understood how wide that chasm was.

The next day things took a turn because dad started feeling pain.  We didn't understand how dad had been doing as well as he had with no food or water, but when the pain kicked in I was frightened.  I wanted it to stop, and we hadn't tried administering any meds on our own.  I called the hospice number that we had been told to "call any time," only to get a machine.  I left a message, then in a panic called again a few minutes later.  The woman at the weekend answering service got annoyed.  (Remember, don't get sick on a weekend.)  I explained we could use help getting my dad cleaned up, and she told me that that doesn't happen on the weekends, and we needed an appointment.  I was shocked.  Everyone we'd talked to up to then said we could get help 24-7, no one had mentioned anything about scheduling.  This was new information and I was frustrated.  When I said to the woman that I was told I could call any time, she replied, "Well certainly, you can call any time!"  So what does that mean?  Why would you call just to call?

Thankfully every person we dealt with from hospice face to face (and even the weekday answering service woman) was kind and helpful.  Our main nurse, Pat, was excellent.  She ran over extra supplies as we needed them, sometimes before we knew we needed them.  She gave good advice and was never impatient.  She was somehow cheerful without it being cloying or inappropriate.  The nurse who came out to help dad into fresh clothes and new sheets (once we scheduled her) was amazing.  But I will never forget that woman being short with me on the phone while my dad was writhing in the next room and I needed some advice and more than a little compassion.

We learned from the nurses to cut my dad's shirts up the back so we could slip the sleeves more easily over his arms from the front and just tuck the shirt behind him.  We tried to follow their advice about using a sheet underneath him to help reposition his body as he slumped over time, but the sheets were in soon in disarray no matter what we did.

We read dad so many wonderful letters.  My mom had sent out word that dad was in hospice and that he didn't want a memorial service.  I think it was much better, really, that dad got to hear much of the encomia while he was still alive.  Some of it was surprising and all of it was touching.  Many people mentioned drawings he'd done for them that were treasured pieces in their homes.  There were stories from people remembering his kindness toward them as children or toward their own children.  People said dad helped them appreciate the world in new ways by teaching them about art or manners (more than one friend of my brothers' mentioned the gentle but forceful lectures they received upon phoning the house after 10 at night).  My dad inspired people, and gave them a different perspective on what was valuable.  At one point, just after we had been discussing that apparently there were times dad had regretted not being a bigger success in life, we received a perfectly timed note from a friend of one of my brother's quoting Ralph Waldo Emerson:

"To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to know even one life has breathed easier because you have lived.  This is to have succeeded."

By those measures my dad was certainly a success.

During home hospice there was nearly always someone at dad's bedside, and at times a few of us would be gathered there where we would talk.  We tried to remember that just because dad was asleep didn't mean he couldn't hear us.  There were moments the conversations turned to dark topics and our own worries, and usually Arno would redirect us and remind us to be a positive influence on dad's dreams.

Those first couple of days home dad was strong enough to say and do some surprising things.  He made strangely delicate motions with his hands, saying he was passing coins from one to the other.  He would gesture, then look hopeless, but sometimes he would smile.  He even asked us once "Why am I smiling so big?"  One morning he kept repeating that "six sevens were forty-two."  At one point with Arno dad tried to communicate through charades (a hopeless endeavor during the best of times) and Arno asked him to just talk and dad said, "But I can't speak!" and Arno replied, "But you just did!" so he started speaking again.  He would come in an out of dream states and try to tell me things, once about a mall in Ontario that was doing well.  As his stamina was failing and we dramatically scaled back the visitors we asked if it was still okay for his friend Julie to come, and dad said, "No royalty," but Julie was okay.  Dad hallucinated and saw people who weren't there.

Dad repeatedly saw himself in situations where he wanted to leave: bad parties, a place that was filling with water...  There were many versions of "trying to go."  We told him it was okay to go.  That we loved him and if he needed to go he should.  Once when I was sitting alone with him he put both hands on the side rail of the bed and tried to pull himself out.  I asked him what he was doing and he said he had to go.  I asked him where and he said, "Heaven."  I told him that was fine.  Then he winced and collapsed onto his back again, mired in troubled sleep.  He told Arno in the night, "I wish you could share my dreams," which at least gave us hope that whatever he was experiencing was pleasant, and not fretful as we feared.

Dad's body was too strong.  It wasn't fair.  I don't know how he kept going with no food or water.  When the nurses checked his vitals they were always good, but he was fading away before our eyes.  His wrist was so thin I could wrap my thumb and forefinger around it so they touched easily.  He kept requesting ice water, which we couldn't really give him much of without risking another vomiting attack.  Sometimes he would hallucinate he was drinking ice water and that seemed to satisfy, but often we just felt helpless to provide him with what he wanted.

I kept thinking about how cruel this was.  That in many ways this was as good a death as one could ask for, surrounded by family, able to say goodbye, to know you were appreciated and loved, to be in a comfortable place...  But we were watching him slowly die of thirst and it was horrific.  If I had stood there and watched my dog die that way everyone would say I was a terrible person for letting his suffering drag out so long.  But a human being, no, we have to let linger past the point of comfort or reason or dignity.  It's cruel.  If there had been a plug I would have pulled it.

Instead, we waited.  A full household engaged in waiting for my dad to die, and painfully aware every moment that's what we were doing.  And the thing is you can't just wait in one spot day after day after day.  You need to eat and bathe and attend to other things.  At one point early on I remember just my mom and brothers and I were all gathered by dad's bed, and he rallied briefly and opened his eyes and reached for my mom and said, "I have to go.  I love you, Karen.  Goodbye."  And he closed his eyes and lay back exhausted, and we hovered there for a while, silent, wondering (hoping?) if this was it.  But eventually we realized it wasn't.  And there were practical considerations to be worked out, so we went back to the conversation we'd been having before dad spoke up.  There were things to do, even as we waited.  It was surreal.

One of the more awful aspects of dad's condition was that even though he wasn't eating or drinking his body kept filling his stomach with fluids that had to come up since they couldn't go down.  Bile collected in his mouth and we had to convince him to spit it out for us.  This happened as often as every fifteen minutes and all through the night.  Anti-nausea meds didn't help.  The pain meds seemed to for occasional stretches.  It was a challenge to keep dad in clean bedding and shirts.  Dad would have been horrified if he could have been aware the situation.  I'm hopeful he wasn't.

Arno was heroic.  Night after night he stayed up with dad, each time promising mom he would get her up for a shift around 3:00, and each night letting her get much needed sleep instead.  He caught bile as dad spit up, and kept him clean, and talked to him, and looked up information during the longer stretches of quiet to try and make sense of what was happening, to see if there was something to make it better.

Poor Barrett was torn between spending time with dad and caring for his baby.  Rivyn's had a hard adjustment to the world after time in the NICU and he fusses a lot.  It doesn't detract from his impressive level of cuteness, but it does mean he needs a great deal of attention.  It was a beautiful thing watching both Dosha and Barrett with that baby.  They are natural parents, their love for that little boy inherent in every gesture of his care.  The last thing my dad may have seen is Rivyn.  Arno was concerned that maybe dad wanted to open his eyes in the last couple of days and just didn't have the energy anymore, so he held open one of his eyelids as Barrett held up the baby, and dad seemed to track him a bit, and react a little.  I hope he saw Rivyn.  There is sadly a better chance of that than Rivyn having really seen dad.

I need to make a note about Ian and the kids.  Ian was amazing.  He decided his role was to keep everything running so as to leave the rest of us to the work of tending to dad and each other.  He did a million dishes.  He ran countless loads of laundry.  He made sure the kids were fed and that they were sufficiently occupied.  He kept as much of the clutter downstairs at bay as he could.  He never once asked for my attention but was there for me anytime I needed him.  Dad asked specifically to see Ian when he realized my husband was off in the background somewhere, and I'm glad they had some time to sit together.  I married a great man.  I don't know how we could have managed without him. 

The kids.  I'm not even sure how to impress upon anyone how remarkable the kids were.  My kids are 13, 11, and 8.  My niece Ellora is 11.  When they are together they are a happy heap and never bored.  This was a rough experience for them on many levels, and we questioned how much they should be exposed to.  For the most part they accepted a general level of neglect that left them on their own in quieter corners of the house.  They were never underfoot.  They never complained.  When the food that kept arriving didn't appeal to them they found themselves bowls of cereal and crackers and fruit.  They drew pictures for their grandpa.  We stocked them up on craft supplies after a few days and they busied themselves with projects of their own invention.  When we requested they clear the table they were working on in preparation for a meal they did it rapidly and well.

But after a few days of tending to dad with no sense of how long it would go on or how bad it could get, we decided to offer the children the option of going to the cottage.  It's only a three-hour drive from Detroit.  They could get outside and play and make noise again and escape the pall of the hospice vigil.  They'd also be close enough that it wouldn't be hard to call them all back again.  It seemed like a good idea.  Arno and I sat across from the kids at the dining room table, their eyes down on their work as they busily manipulated pipe cleaners and puff balls while we explained the idea.  The second the suggestion was out that maybe they should go Aden quietly rejected it.  Arno told her to hold on and hear us out.  We made our case, that maybe it was best that they remember their grandpa while he was still responsive, and not have to see what comes at the end.

Then Aden said something that will stay with me the rest of my life.  She looked up, and said, "But we're not just here for grandpa.  We're here for you, too."  The other children tacitly agreed.  They were staying.  We weren't to worry about them, and they were there for us if we needed them.  And we did, more than they knew.

I think it was a profound experience for the kids.  They all found their own moments to sit with their grandpa and to tell him they loved him.  I know many might think children should be shielded from death, but I think it was important for them to see what was involved in it.  To understand that life really ends, and what it means to have people step up and help one another in a family during such a time.  Loss is hard, but we have to be able to accept it somehow in order to live.  My kids saw us hurting and they saw what loving support looks like.  They saw us laugh despite everything.  They saw how valuable siblings and cousins are past childhood and into other phases of life.  They saw and experienced grief.  They saw and experienced love.  I'm not sure what greater lessons there are to pass on to my children.  I'm glad the children were there.

Breaks:  Endless waiting just isn't sustainable without going mad.  We were told by the hospice people that someone in dad's condition could go as long as two weeks.  Time with dad was mostly spent either watching him rest, or cleaning him up.  The first couple of days were haphazard and we didn't take turns sufficiently because we all wanted to be there and we started to wear out fast.  When we realized how long it could go we got more organized into more deliberate shifts and gave each other chances to leave the house.  A few times we even took the kids to the neighborhood pool where the kids had great fun and I got in some laps.  Thanks to time in the pool with his uncles, Quinn built up enough confidence to finally jump off the diving board.  Aden made a new friend.  I even made a new friend with someone who turned out to live just down the street from my parents.  I tend to resent the time it takes to exercise, but time didn't have much meaning during my stay in Detroit.  I wasn't responsible for any of the things I normally am, and swimming was a welcome relief.  I asked the lifeguards the first time we went how many laps were in a mile there, and their estimates were all goofy.  I figured it out, though.  It was about 28 strokes across, which was the same as our old pool at the Y, so 36 laps should have been a mile.  (I may not know much, but I know what a mile in a pool feels like by now.)  It felt good to just repeatedly thrust my arms through the water.  And under the surface no one can hear you scream.

The hardest decision we had to make at home was to put the tube back into dad's nose on Wednesday.  Dad didn't want it, and it pained us to do it, but it was getting too hard to try and keep dad clean, and we figured if it turned out to made things worse we could take it back out.  His need to spit up was constant, the gagging was uncomfortable, and it was making everything harder to have to change and wash so much bedding and clothing.  The tube would stop the vomiting, and we hoped both he and everyone caring for him could get some rest.  But it meant he might need restraints again to prevent him from pulling the tube out.  We opted to hold his hands ourselves, and we scratched his nose around the tape where he kept reaching to relieve the itch.

Dad didn't really speak again after the insertion of the tube.  Somehow the next morning when Arno asked him if he'd like to hear more encomia, dad managed to whisper, "That would be wonderful," and those were is final words.  He didn't open his eyes.  Periodically he took fitful, barking sort of breaths that worried us.  We upped his pain meds to the higher range rather than the lower.  He soon stopped being able to raise his hands so we didn't have to guard the tube.  It was terrible to watch him linger.  There was nothing good in it. 

Unfortunately, in addition to all of this, I was having a medical issue myself.  In the same area where I'd had my recent biopsy, I developed an alarming case of something that looked like mastitis but without the fever or redness.  I'd lived with it for about a week before I got the call from mom, and I had just started taking antibiotics when I arrived in Michigan.  I was in pain, and the medication didn't solve it.  It got bad enough I had to arrange for my own trips to the hospital, including an exam where they painfully inserted needles into my breast, an ultrasound, and finally a followup where the doctor provided me with instructions to get an MRI when I go home.  There were lots of frustrating calls to my medical providers back in Milwaukee and lots of additional worry at a time where I didn't want to become a distraction.

A week after my dad went into hospice I got the ultrasound.  My mom wanted to go with me.  My brothers tended to dad.  We left early in the morning while most everyone else was still sleeping.

The internet connection at my parents' house doesn't tend to favor streaming video, but the hospital one did, so I set up my mom in the waiting room with my laptop and an episode of Game of Thrones which I was trying to help get her caught up on.  The appointment was confusing.  The technician and the doctor weren't sure what they were seeing.  They said they didn't think there was any treatment short of ibuprofen for the pain.  It was depressing.

I was so worn out and sad, and when I came out of the appointment I decided I didn't want to go back to the house right away.  I wanted to just sit with my mom and have her to myself and watch something distracting.  We finished the episode.  Then we went out to pick up bagels for everyone.

When we got home my brothers met us in the driveway.  I was standing on the grass near one of the tents when I heard Arno tell me dad was gone.

It's bizarre how you can be expecting something and still have it be a shock.  I think I dropped the bag I was holding.  I didn't want to be standing so I sat on the ground.  I could hear mom crying in Barrett's arms in the driveway.  Arno held me.  Ian was at my side.  I think Mona's arms found me next.  Eventually I was under a pile of children with Aden behind me, hugging hard, and Quinn and Ellora.

I was overwhelmed with a sense of guilt that I had been selfish and kept mom away at the moment dad died.  It was too much.  I thought I was at the limit of sadness and couldn't believe how much further it turned out I could go.

Eventually you have to just breathe.  We are lucky to be able to breathe.  I started telling the kids there on the ground in the backyard how I wish they had known my dad when he was younger, before he was the frail grandpa who mostly just sat and clipped articles and drew.  I told them how when you plunked him down in a big city he was like a windup toy and could go on for miles without a break.  How in his suit and tie he could go anywhere.  Ian and mom and I were once barred at the door of a private gallery opening in New York but dad got right in.  He used to say people were probably worried he was a critic and couldn't take the chance of not admitting him.  On more than one occasion he ended up at functions where everyone else was decked out in outrageous punk garb but he was the only one who turned heads because his suit made him the only one who stood out.

It took me a while to calm down enough to go into the house, but talking to the kids helped.

It's remarkable how when life leaves a body it changes.  It didn't look like my dad anymore.  The color was gone from his lips.  He looked gaunt and waxy.  It was eerie waiting for breathing that didn't happen and for familiar twitches that were finished.  It wasn't my dad.

We sat with dad's body.  We talked.  We realized after a time that dad was sinking.  Arno had unplugged the bed, so it was slowly deflating, and dad was going lower and lower into the mattress.  We all agreed it looked too weird and we laughed and we plugged the bed back in.

We called the hospice nurse who came right over.  They contacted the police department because in Oakland county an officer has to come by when someone dies at home thanks to the fact that Dr Kevorkian used to live in our area.  We called the Michigan Cremation Society, but then had to postpone their pickup because Barrett wanted to create a death mask.  Originally when he asked all of us if we minded if he did that when dad eventually passed we said that was fine, we just didn't want to watch.  But I did watch part of it.  It was sweet how tenderly Barrett made casts of one of dad's hands and then his face.  It was weird to see a face covered in plaster that didn't need straws for breathing.  Pat, the hospice nurse, was fascinated.  She'd seen many things but she'd never seen that, and she thought we were wise to wait until after the police officer had left to do it.

Ellora assisted Barrett with the casting.  Mona watched from a distance.  Quinn and Aden stayed in the living room with tears in their eyes.  Afterward Barrett gently cleaned dad up and re-buttoned his collar and smoothed out his hair.  I thought about different people's comfort levels with a dead body.  I remember seeing my grandfather in his open casket at his funeral, and being amazed that my cousin Tony didn't hesitate to hold and stroke his hand.  I didn't want to do that.  I did hold my dad's hand briefly after he died.  It shouldn't have surprised me that it was cold.

When the Michigan Cremation Society arrived they were friendly and respectful.  There was a very young man and an older gentleman, and they suggested we not be in the room as they transferred dad's body from the bed to the stretcher as that could be disturbing.  They called us back in after dad was settled and draped with a flag as was his due for being a veteran.  We said our last goodbyes.  We gathered in the driveway to watch them load dad into the vehicle.  We tried to ignore the fact that a clueless neighbor next door didn't have the sense to take her guests off the patio and give us some privacy.

We watched the car drive away with our dad.  We weren't sure what was supposed to happen next.  Laughing and crying at the same time by then was routine. 

I'm over the guilt about not being in the house when dad died.  Upon reflection I realized it was probably for the best that mom and I weren't there, because my brothers removed his tubes and straightened him up before we got home.  I don't think we needed to see that, and there is something fitting about that being a final act for his sons.

Dad died with Barrett lying next to him in the bed reading poetry out loud.  Barrett read dad a lot of poetry over the course of the week.  The last things he read to him were by Carl Sandburg.  Barrett said he noticed a change in dad's breathing, and then it stopped, and dad was gone.  There is nothing in that to have regrets about.

It took a little time to feel up to making phone calls.  We looked at the baby.  We hugged the kids.  We prepared a feast of all the leftovers.

I will admit, I questioned at first the idea of there not being a memorial service.  My dad didn't want one, but such services are for the living, and there are many who would want to pay their respects.  However, since my dad's passing was not completely sudden, there was enough time for people to react while he was still around.  We saw everyone we needed to see.  We got the support we required from one another.  It was a relief, frankly, to know when dad's body left the house and we watched it being driven away that it was over.  We didn't have to dredge the worst of the experience up again at a funeral, or face more people, or draw it out any longer.  We were tired.  It was done.

We decided with so many people in the house it would be hard on mom if too many people left at once.  Ian took the kids to the cottage where they enjoyed a week of swimming and playing and staying up late and being kids.  We went out for a fancy dinner that dad would have appreciated (where the baby was much admired and behaved beautifully).  We enjoyed the last of our time together as our original family with a piece missing.

Can I say enough that despite the loss of my dad I had a wonderful time?  That the highs equaled the lows?  That I love my family so much and hate that we're spread so far apart?  Because I feel we were all meant to somehow all live in the same enormous house where we could each have our own space but come together to share ideas and a meal and a hug every day.  But that's not how it worked out.

We got a start helping mom rethink the house and moved some things.  She has plans to remake the library into her studio which I think would be grand.  We picked through record albums and books.  Dad had asked anyone who wanted to to take a beautiful rock from his display shelves, so we removed the ones we'd selected.  I picked out some of his ties for my husband and son.  Arno started wearing dad's watch.  It will be a long time before final decisions are made on collections and prints and all the things dad saved.

I started going through the vast number article boxes.  I found the perplexing and touching note I mentioned in my eulogy, the one that reads: "Departed with love from everyone I've known."  I saved out a few things I knew were for me, or that might interest others including bird articles for mom and New Yorker cartoons for Arno.  Most of the clippings are too out of date to be useful and are more easily found online if anyone needs that information.  Amid the updates on various economies and pop culture and wars and architecture and film reviews were peculiar things such as "Is quinoa kosher enough for Passover?" (the article didn't actually answer the question), an obituary of Groucho's biographer, and more ads for vodka than made sense for a teetotaler to have.  I kept one tiny clipping that had been saved in the center of its own page protector that announced a change in the Thursday hours at the MOMA in 2007.  I put that one on the fridge because it seemed sweetly representative of my dad's filing obsession.

Barrett, Dosha, and Rivyn left on Friday, exactly a week after dad died.  It was hard to see them go.  Mom and Arno and I went out to the movies and saw Mr Holmes, an hour's worth of Mission Impossible, and Antman.  (Mr Holmes was excellent, but a little hard to watch at times since it portrayed a brilliant old man in his last years, plus a little boy gets hurt and I don't do well with that.  Antman was silly and we enjoyed it immensely.)

The next day Arno helped move a lot of books.  We tried to convince mom to let us hire people to paint the walls for her since her time is better spent creating art.  We took Arno to the airport Saturday afternoon.  My heart broke a little more waving goodbye to him.  Mom and I finished watching season five of Game of Thrones (since the internet was finally cooperating).  We braved the traffic complications caused by the Dream Cruise and went to see Best of Enemies (which was fascinating, and not something I would have thought to see on my own).  The popcorn counted as dinner.  We went home and crawled in bed.

Mom made me a breakfast of eggs and bacon in the morning.  We sat on the porch and enjoyed more of the beautiful weather for a bit before I finally had to go.  I love my mom.  I think she needs the time by herself for a while to sort things out, but it was hard to leave her.  I wish I were closer.  I think there are good things ahead.  But it will be different.

I don't know how to end this.  I need to dive back into my regular life and my work.  It's somehow both right and insulting that the world barrels on now that my dad has left.  But that's how life is.  And we adapt.  So I suppose I will close with my dad's own words.  We asked him for years to write an autobiography, but he never quite did things the way he was expected to.  Instead he wrote mom this poem (and no, there never were pictures to go with it, but we will select some from his sketch books at some point and put together our own version for the family to share):

The Story of my Life
In five poems and
five pictures

(by Arnold Klein)

1) The vaguest of displacement.
Was I too good for all this
Or not good enough?
Was it daring to defy pious pettiness?
Why the guilt when done?
“Think right, say right, look right”—
My invented mantra.  Would that I
Had lived up to it.

2) Here I am in high school.
Why am I so awkward?
Why so suddenly tall?
Why no friends? (Though one wanted
To show me his guppies.
But I didn’t know what they were.)
Thank goodness for Saturday movies
Though once I saw two double features
Searching for a nickel I dropped on the floor.

3) “Walking Encyclopedia” I was called in college
Where my humor was honored at last.
I should have studied more but
I was learning about music and was
Pursuing personalities.
But I was so lonely, longing for more.

4) Out in the world, the real jobs, the unreal
Army, the surreal Geneva where I never
Really studied, purportedly consorting
With the lingually unfamiliar.
Out of place, again, still.

5) Art is my life and Karen is my artist.
Unlikely fulfilled with three compatible
Children and their charming, promising
Children.  I have caught up with fate.
Not too late.


  1. I think that might be the most beautiful thing I have ever read. All of it. Love.

  2. This is heartbreaking and beautiful all at once. I think you did your kids a wonderful service by letting them stay and I'm glad they were there for you when you needed them. It sounds like your father left a wonderful legacy in his family.

    As a side note, if you ever find yourself alone in the hospital, or attempting to help a loved one who is, always ask to see the hospitalist or patient care advocate. Every hospital has one an their primary job is to help you sort out the maze of modern medicine.

  3. Thank you for writing and sharing this journey. It is good to write it down while it is still fresh; I did the same thing after my dad died. Every family's experience is different at the end -- but love truly does endure. I'm so thankful for you that you got to be with your WHOLE family. My condolences and prayers are with you and your family.

  4. Thank you for sharing all of it. Hugs to all of you.

    And God bless Aden for her words, her "We aren't just here for Grandpa." You always give me a glimpse of what is ahead in parenting, even at a time like this.

  5. I read last night. I cried throughout. I read again. I've had to pause to try and think of what I can say in response. First, thank you for sharing. You are a talented writer and your words never fail to move me. Second, I am so sorry you, your father and your entire family had to go through the hospital and his last dying days. On the other hand, though, I am thankful for you having those days together as a family. Being able to say what needed to be said. Just be with him and each other. Your kids were amazing btw. You are right, children do such a wonderful job keeping you in the present and a oftentimes knowing what you need more than the adults. Ian also sounds like such a great guy...steady, loving. Please take time to ease back into life. I oftentimes think the Victorians dealt with grief well having a designated mourning period in which your dress, etc...marked you as one mourning--for both yourself and others to know.

    Thank you again for your words. Sending love and healing from VA.

  6. I am so sorry for your loss, and so touched by your beautiful words. Thank you for sharing such an intimate experience so thoroughly. I could feel some of the love you must have experienced simply emanating from your recounting. May your family continue to find peace and healing in each other.

  7. I'm so sorry for your loss but I do think you as a family are blessed by the love and support you can give each other. Your father will have died knowing he was a man who was loved and who had helped to build and raise a loving family.

  8. Thanks for sharing two beautiful tributes to your dad and the family he and your mom created.

  9. Beautiful Kory. You all have been through so much. I'm not one for hiding children from death--in our case, it just wouldn't make sense--and I think it was a great life lesson for your children.

    I remember holding Hannah and holding her and holding her and I remember saying, "She's getting cold" and someone brought me a blanket to wrap around her. She was gone--the essence of her--but I still needed to be with her. It's all so odd, figuring out how to move on.

    You'll find it in your own way, that new normal.