Another loss

Jan

Just a few weeks after my mom died, my aunt, Jan Knutson, died suddenly of a heart attack Dec. 1. She was at my mom's funeral in Milwaukee, and it is hard to believe that she is gone. She was in her mid-70s, but, look at her, she could pass for 50. She was always that way -- youthful and sharp.

We're going to Olympia, Washington, for the funeral, which will be Sunday. My Uncle Mark, who has had health challenges, including a heart attack years ago that he survived, lives near his kids, which is a blessing.

It's been a tough year all around.

I've been working on my mom's estate for many weeks. Crazy how much time it takes. Almost done now. When it's over, I've made a firm plan to sit at my desk and stare out the window.

Who knew?

My mother at age 3 in her grandmother's garden.
Red Wing, Minnesota, 1936.

It's 3:30 in the morning. I wake every night and stare at the ceiling for hours. If you asked me if it's because my mother died, I would say no. But I think it somehow is. And while the nights are long, the days are hurtling by. The paperwork to be taken care of is staggering. As Donald Trump says of health care, nobody knew death could be so complicated.

It's a bad sign when you're quoting Donald Trump.

I've closed or redirected 14 accounts, ranging from health insurance to cable TV to drug companies and doctors. I'm in regular touch with my mom's lawyer, her financial guy, bankers, and people in suits who have some claim or owe something. I want my old life back, but it'll be a while, a month and a half or so, I think.

It starts getting dark here about 4:30 in the afternoon. Milwaukee is unspeakably gloomy, but I try to get out every day and walk along the lakefront and past the shops on Brady. I do it to clear my head and reattach myself to my physical being, but sometimes my mind races and I pull my ear buds out and write a note on my hand.

My sisters have begun to go through Mom's recipes. Many of them are neatly typed or written on cards, with additional scribbled notes and food stains. She kept track of the source of the recipes, and if you knew her very well, your name is probably there. Sister L calls it Recipe Archaeology, and it tells a whole story of its own that I never would have thought of.

We're holding a memorial service at 2 p.m. Saturday, Jan. 13, at Zion Lutheran Church, 1501 W. Liberty St., Ann Arbor. Free coffee and treats in the basement to follow. We hope to see you there!

Recipe Archaeology

The state of things.

Life story

Sister L, Daughter A, Son E, me
the night before the funeral

I found one of my many scribbled notes just now. It's dated February 7, 2014, maybe the very day Mom moved into St. John's. We were about to go to a meeting with the big head nurse for an evaluation, to see if Mom qualified to live independently or should be in the assisted living section. She was crying, she said a quiet prayer, said she was afraid, said, "I wish Daddy was here. This is so hard to do alone."

She knew no one. Her AA home was empty and on the market. Her stuff was all over.

She did qualify for independent living and they were having her stay in a guest room for a few days while a better, bigger apartment was fixed up for her. She wandered the halls, trying to strike up conversations. A man who lived down the hall from her was often in the corridor escorting his blind wife to meals. She tried them several times, but they were cool to her, too preoccupied with their own problems to say more than hello. She visited the one person she knew, Samantha, the nurse in the little clinic upstairs, several times a day, until the nurse said she was busy, Mom really couldn't just hang out there.

I was blind to the depth of her need. I thought we could just plug her in there and she would be fine. She called me again and again and I came when I could, but sometimes I had to say no and fight down my guilt. So most of the time she was alone, out in the halls, bravely trying to connect, never giving up. Even now I don't know what I should have done, short of bringing her to my home, but JV and I would have been gone all day, and she would have been even more alone.

She declined quickly. Her walking became more unsteady. She had quit cooking back in Ann Arbor, and so she ate cereal or heated soup or noodles in the microwave. She called and called and called. Within a few weeks, even before the nicer apartment was ready, they moved her to Canterbury -- she called it "Cranberry" -- assisted living. The residents ate together around big tables there, and she thrived and made friends with Dar and Carol. But over the months Mom declined and couldn't keep up. Dar and Carol were good on their computers and did things like send their DNA for testing. They  enthused about their heritages. They included Mom less often. She was hurt and, really, I don't think she had ever suffered a social failure that stung like that.

Then she fell and broke her hip and moved to the full care wing.

Before the end, everybody we passed in the hall knew her and greeted her, everybody said how sweet she was. One woman said she must have been "a great beauty." They would take her hand and she would smile and make a whispered, half-articulate response. And at the end, the chapel was full, and if she could have seen it, she would have been pleased. But she would have tried to hide her pleasure, because it was better to be modest.

Life goes on

My current life

Paperwork surely was created to keep your mind off weightier matters. Still, it is maddening.

I called AT&T, one of the world's most screwed-up companies, to tell them Mom had died and consequently didn't need cell service any more (hadn't used it anyway for years), and the guy said he would text a code to her phone to prove that I was who I was.

"I don't have her phone. She hasn't used a phone in a long time."

He had to find a supervisor. Finally they worked out that I had to go to an AT&T outlet with Mom's death certificate and show it to an employee, who would then call them to say that it was true, she was dead.

Have you ever been to an AT&T outlet?

People stand around in a sickeningly orange room waiting for service while the three ill-kempt tech-heads who work there all congregate around one particularly thorny problem that none of them knows how to solve, and you slowly die as the minutes tick away.

I waited and waited. I used a bathroom marked with the universal bathroom sign, and was told when I came out, "That bathroom isn't for public use."

"Well I used it," I said.

It took about an hour, two-thirds of the three-man staff and three phone calls to the "Customer Loyalty Department," but I finally got it done. They make it purposely hard to end an account, even in the case of a death, but they sure are excited to sign you up for new one.

So that's one account ended, about six to go. At the same time I'm dealing with her lawyer and other professionals in this strange realm to figure out what goes where.

Mom is out there somewhere. In her last few years, none of this meant anything to her and, in that way, at least, she was at peace.

Aftermath

Here at Funeral Central the emails have been rocketing back and forth at the speed of thought. The Sisters have gone home for a few days to preserve their jobs, silly girls, and I've been distracting them all day with all we have to do -- plan a funeral, write an obit, figure out the catering, sort the pictures.

It's the pictures that get to me. In almost every one, Mom seems more beautiful and happier than I ever saw her as a child. It's quite something. It's like the joke told by David Foster Wallace in a commencement speech: The big fish says to the little fish, "The water sure is nice today," and the little fish says, "What's water?" I was in perfect water and didn't even know it.

For three days now I have felt like an amputee with phantom limb syndrome. The obligation, or habit, or even, let's say, urge to visit her, to carry out my duties of care, arises several times a day, completely unconnected to the fact that she is gone.

In the months, weeks, days and even just hours before her death, I thought I would feel nothing when it was over. Much of her was gone already, it seemed. But sitting beside her bed after she died, I sobbed. At the loss of my mother, of course, but also at the improbable miracle of life -- that it happens at all, and that it ends.

What's next?

1955

They looked like they would live forever. 

*

INVITATION:

Dear friends and family,

Our mother died peacefully on October 23 at Saint John’s on the Lake. We were at her bedside and are so grateful for her full, rich, friend- and family-filled life.

Please join us on Saturday, November 4, at 1:30 PM for a memorial service in the chapel at Saint John’s, 1840 North Prospect Avenue, Milwaukee.

The service will be followed by a sweet and savory reception.

All are welcome and please feel free to pass the word among those who knew her.

A second memorial will take place in Ann Arbor, Michigan, in January. More information to follow.

Much love,

Jon, Lydie, Siri, Kari

Gone

Mom took her last breath at 12:55 a.m Monday. 

Culling

Sister K, sorting

We are in a holding pattern. Mom's breathing has slowed, sometimes to as little as one breath a minute. Still, she persists. The body wants to live. The nurses say she could die at any moment or this could go on for days. The Sisters have been taking turns sleeping in the room overnight while the rest of us sleep elsewhere and wait for a call.

Meanwhile, we are sorting cards and letters, following Sister L's "system." In addition to the cards and letters, we have a full storage locker to look forward to.

Fun. 

Vigil

Knocking on heaven's door

Mom has been sleeping just like this for two days. She doesn't eat and takes only a little water through a sponge on a stick. We have sung, prayed and talked to her through the hours, and she responds sometimes by raising a hand or moving her lips but not quite speaking. Her eyes never open.

We had a conference this morning with Jess the hospice nurse and Paul the social worker. They answered the few questions we had. I called a funeral home and it will be ready when we need it. We've had visits from the hospice chaplain, another social worker, Pastor Rob, Pastor Susi, and Mary the singer. Mom responds to the singing and The Lord's Prayer, and we have kept doing the things she seems to like.

Saint John's on the Lake has treated us well, providing food and drink, and in ones and twos we have taken breaks. It has been nice to be together, jabbering like macaws -- and it is funny how you can talk and laugh in the face of death.

When this is over we'll have a service here at Saint John's, and a memorial service in Ann Arbor at a date to be determined. She'll be buried at Forest Hill Cemetery next to my dad.

Advocate for your mother

Mom's three-day stay in the hospital ended about 5 p.m. last night when an ambulance delivered her back to her place. It has never looked so good.

I got to the hospital about 9 a.m., and the day didn't end for me until 8 that night. Mom had slept most of Sunday and Monday, and was sleeping when I got there Tuesday. They woke her to turn her, and then breakfast came -- scrambled eggs, oatmeal with brown sugar, a blueberry muffin, fruit. I started to spoon-feed her, then an aide came in and said she'd take over. She distractedly gave Mom about five bites, then hurried off without explanation and never returned. A perfect example of care at St. Mary's.

I finished the feeding and spent the rest of the day pushing and pulling, pushing and pulling. The hospital is really a warehouse for people in need, who might get seen, or not, whatever the system willed. We had a nurse, Judy, who came and went almost randomly, and whenever we actually needed help, she was nowhere to be seen. Dr. Hirpara was the one sympathetic presence.

Mom, as she slept, kept raising her arms and waving them like a choir conductor. The nurses said this is the influence of the drugs -- maybe she's hallucinating. She seemed to grab at things.

At one point she woke and said, "Philip." Her brother. I said, do you remember Philip? "Yes."

Do you remember Melford? "Yes."

Orla? "Yes."

Paul? "Yes."

Mark? "Yes."

Ann Arbor? "Yes."

Leech Lake? No answer.

Then she said, "Where is Ahna?"

"She's coming at Christmas."

"I wanna go home now," she said.

Judy the nurse was my conduit to the case manager, Jennifer, who would set up hospice. When I'd specifically asked for Allay to provide hospice -- which Mom's place requested -- Jennifer went ahead and appointed Horizon, the hospital's system. I insisted on Allay, through Judy, and that took about two hours to turn around. Then I got a call from Allay, asking me -- me -- to tell Jennifer to fax over Mom's records. I had no way to reach Jennifer, so I tried and failed to find Judy. I asked another nurse, Julianne, if she could locate Judy, which she couldn't. Finally -- quite a while later -- Julianne came to the room and said, "... and then I thought I could call Jennifer myself!" Brilliant!

Finally, Jennifer was reached, faxed the documents, and came down to meet us --  like God appearing. Hirpara and Allay, after seeing Mom's documents, certified she qualified for hospice, and then we were kind of stalled. Finally I asked Hirpara if we could move her today (Tuesday), and he said yes, she would be moved today. Some unseen powers made arrangements for an ambulance.

I left before the ambulance came to meet with Julie M -- yet another "J" name -- from Allay at Mom's place. I signed a stack of papers saying this was our choice, and that Mom's care would be in the service of comfort, not, basically, improvement of her condition -- that there is no cure. That felt, um, heavy, and I had to think about it for a minute.

Mom arrived and the EMTs got her into her bed, and she looked relieved to be there. It is a place we know, where we have some say. I fed her baked fish and spinach in her room, and she ate well, followed by a big dish of ice cream. She looked better, her color returned. She was a little chatty, and quite choosy about what food she would accept. Then she fell off to sleep.

I was glad I was there with her at the hospital. You really have to push for what you want, or your mother will get lost.

Julie came and introduced choral music. 

End stages

Singing in the penalty box.
Mom in blue, second from left.

Mom had a couple great days last week. She ate two servings of fish on Thursday, two desserts, and made cupcakes and did a storytelling session.

I was gone to Michigan from Friday to early Sunday morning, and had calls and messages when I got back that Mom was at the hospital. I found her in the ER, and spent the day with her as they moved her up to a regular room. She had a broken femur --  a displacement of the femur from the hip, with fractures in the bone going down toward the knee.

Nobody at her place was able to tell me how this happened, but they are doing an "investigation" and we'll see what they come up with. She has significant osteoporosis, and Dr. Riordan said her injury was consistent with a fall or a hard bump, but that it might not take a lot of force to cause it.

The doctors gave us the options of repairing the fracture with surgery, which, if she survives it, would necessitate a long, painful rehabilitation process just to get her back to her wheelchair, where she doesn't even use her legs, or not repairing it and just managing the pain. Dr. Hirpara said if it was his mother, he wouldn't choose surgery. Good enough for us.

Hirpara said a fracture like this, after her earlier broken hip, is often a turning point toward the "end stage." I asked "A year?" He said two months, and that was generous.

A case worker will meet with me today to discuss hospice, which will start here and move with her back to her place.

Yesterday mom lay in the ER in bed, asleep, but reaching up and moving her arms like she was directing a choir. Music is where she started, and maybe that was it.

She's sleeping this morning, and I think slept all night, the pain medication keeping her at ease.

She weighs 108 pounds.

Innovations in Momcare

Dove bar dissection

My most recent innovation in Momcare was yesterday's Dove bar. I pulled the hard exterior chocolate off, chopped it up, and gave bits of it to her with spoonfuls of ice cream. She ate almost the whole thing, closing her eyes in quiet ecstasy with little each bite.

Today, after church, I went for two in a row. I got her a brownie with custard swirls in it, cut it up in small pieces and soaked it all in coffee. She liked that, too. You take your satisfaction where you find it.

When I arrived for church today she was unusually -- peppy is too strong a word -- alert, I guess. Jackie the aide said, "She's having a great day."

Of course that's a good thing, but it is accompanied by an unusual amount of energy poured into her difficult habits -- working her feet free, trying to stand, grabbing passing pews and handrails, and, except in church, talking out one anxiety after another: "Did you get the tickets?"; we have to greet the pastor (we had just done that); we should return to the Bistro "where the people were standing" (we'd just been there), "we don't have a spoon" (we did have a spoon), and so on.

But one moment made me feel of use. Pushing her in the chair she called back, "Jon, come with me, come with me!" not able to see me, not knowing I was pushing.

We had to return to her room at one point to get her attachable coffee-cup holder.

"Well, where is it?" she asks.

"It's in your room."

"Well, we're spending the whole while on one part of our problem."

It was a way to be with her.

*

She has a new wheelchair, as maybe the pictures show. It's got a high back with a pillow, so she can rest without folding in half, and a board between the foot rests, to keep her feet off the floor. She was determined today, and still reached the floor.

The new wheelchair.

One foot on the floor. 

Flowers and farms

Mom's birthday, Aug. 20, with Ms. V.

Well, thanks to all those who sent cards and letters and flowers to Mom for her birthday. I read her every word, and she was pleased. It was her 84th, her fourth since she moved.

I went to get her for church this morning and found her doubled over in her chair. I wasn't sure if she was asleep or just didn't have the wherewithal to sit up straight. I sat her up and said, "Do you want to go to church, or should we just skip it?"

"Let's skip it," she said.

For her, a radical decision. For myself, I'm hoping we can just stop going to church, since very often we are on the drowsy side.

Mom lately has been saying things like this:

"It's hard to figure out."

"Did you get the tickets?"

"Make sure you get a big one so we can all fit."

I agree, or reassure, or say I will, and I have no idea what she's talking about. But they are the kinds of issues a lot of her life was made up of -- managing four kids, planning trips and outings. So, though the substance of the events are long gone, she's still tending to the logistics.

Today, in the Bistro, she said, "See those red flowers down there? They're so beautiful."

They were beautiful, and I felt moved that she got that out. And later, a man passed us and said, "Hi Mary."

"He recognized me," Mom said.

"Everybody here knows you, Mom," I said.

"That's right, you can't hide," she said.

A joke, and I did laugh.

*

I rode my bike 300 miles over five days a week ago -- with all kinds of gear. I'm not sure how long I can go on doing this, but I had fun.

Highway 45.
As high as an elephant's eye.

Here's looking at ewe.

Wisconsin gothic.

Back home, at a wedding last night, with V and young Ahna.
(I have a congenital inability to smile.) 

Make it do

Recent Mom art

I went Saturday. Mom had already been to art, and I attended the baking session with her. There were about eight of us there. Mostly we all watched while Hildur, the new activity woman, from Iceland, made a kind of quesadilla, with two big tortillas sandwiched together with a filling of Brie cheese, apple slices, walnuts, brown sugar and cinnamon, with a little squiggle of caramel syrup on top. It was all heated up in a kind of toaster she had brought. Pretty darn good.

Mary -- a different Mary -- told us about her husband's saying:

Eat it up

Wear it out

Make it do

Do without

Katherine said she had heard the last line, "Throw it out." So we debated that. I see online that the first line could be, maybe better, "Use it up." But we were eating the enchiladas, so we were eating it up. 

Mom does art pretty well, I think. This one, above, is her own work. Sometimes they do art by everybody starting with a blank page, doing something on it, then rotating the pages around the table, creating a set of community pages.

She has her obdurate moments. Sunday, at church, I was pushing her forward (in wheelchair) for communion, and she kept grabbing the pews as we passed and holding on. I couldn't figure out what she wanted. Did she not want communion? Hard to imagine. So I would lift her arm off the pew and put it in her lap. Finally, about after about five of these, I hissed, "What are you doing?"  

She grew quiet. Sullen, I think. And of course I felt bad. We got a brownie after church, which I cut up and saturated in coffee, and fed to her little by little. "That is so good," she said. Nothing like a brownie to bind the wounds.

*

Going on a big bike ride next week, and I'm so excited.

Mom and Betty at Singalong

Ain't it pretty

Forth and back

Sister S, descending

Long time, no write. It's hard to say, "No change" in a way that's interesting. On the other hand, there have been small events.

Mom has fallen twice in recent weeks. Both of them out of bed -- she wakes, thinks she can get to the bathroom, and goes down. She's wearing bandages on her hand now and has a scrape on her knee from her most recent fall, about a week ago.

Also, she was moved temporarily to a different room while her own room was fumigated for bedbugs. Her clothes were hither and yon, her shoes lost for a time, and it was pretty disorienting. Finally they brought in a sniffer dog, a bedbug specialist, who declared the coast was clear. It was a beagle, like our old dog Herman on Newport Road, who pretty much lived through his nose.

Mom is lucid at moments, is better for special company, but mostly when I see her she is hard to understand. She speaks very quietly, and is constantly starting thoughts that she is unable to finish. Some seem very urgent, and I say "What? What?" but it never comes through.

She eats well, but is losing weight.

Meanwhile, the rest of us have played some. I went to Frankfort with Sisters S and K and their husbands, and had a real nice week. We hiked in the dunes (above), ate and drank, and I biked. I met up with a friend there and we rode M-22, surely the Midwest's best biking road. Two days later I went to pick him up for another ride, and he'd been hospitalized with a stroke. That's how old we are. He has, thankfully, made a full recovery.

Sophisticated Ladies
(S and K)

Genealogy sidetrip to Alpena

The Olson church in Spruce

Snippets by Sister S

Pinwheels

We've got a near-summit of Sisters and brothers-in-law in town. Here's Sister S's take: 


Had a good first day with mom. I arrived shortly before lunch. We ate, then the gang had hand massages in the penalty box (Bev, Joanne, Gloria, etc). Then we went to arts and crafts with Jesse and made a pinwheel and went outside to see them spin. Then we went to Stratford for tea and brownies and discussion of the news. She did not speak, but seemed to be listening intently, and did not ask to leave even though it lasted a long time.

*

Today Wendy from Bright Star is there instead of Ivette. She's great. We went down to the lobby after breakfast to watch the comings and goings. There was a bus going to Trader Joe's, which is right next to Bay Shore mall, so I left mom with Wendy and went along to buy mom socks. She only had 5 socks in her drawer and none of them matched. Beautiful sunny day. Does mom need anything wear?

Birthday boy

*

Went to Kohls - 2 nice t-shirts, 6 pair of socks, 2 stretch bras. Then stopped in Trader Joe's for a $5 bottle of chardonnay. 30 minutes and back on the SJ bus! Success.

*

Beautiful day in Milwaukee. Just had breakfast with mom, and Wendy from Bright Star came as we were finishing. Mom ate scrambled eggs, a whole English muffin with butter and jam, fruit bowl, and the forbidden bacon, cut up real fine.

*

The art today was alcohol and paint applied with a dropper onto clear plastic, so each drop exploded into a bright color. Mom was beaming and said, "This is WONderful!" Now they're off to yoga before lunch.

*

Jon came for lunch and we gave him our cards and a pinwheel for his birthday. Mom had trouble swallowing and packed her food in her mouth - first time since I've been here. Maybe she didn't like it. She ate the rice pudding dessert. Then she asked to go to bed and had a good nap.

*

Move and groove didn't happen, but it was okay. She had a new young aide, McKenzie. She was very good with her and patient. Then she left and we did devotions and sang a little - Jesus Loves Me and Be Near Me Lord Jesus as she fell asleep. Felt a little choked up; it reminded me of us singing as dad was dying.

When an anti-depressant depresses

20 miles of gravel on the Eichenbaum State Trail

Mom has slightly improved. The nurses reduced her anti-depressant dose, and in the topsy-turvy world of pharmaceuticals, it has perked her up a little bit. She looks better, seems to feel better, and is able to get through a full thought occasionally without forgetting what she started to say.

"We think it was starting to snow her," said one of the nurses, on the dosage she was taking. Snow, as on a fuzzy TV.

The drama Sunday was all about Gloria. She's blind, maybe from birth, and 80-plus. For as long as she's been there, you could find her in her wheelchair out in the penalty box, reading in Braille, running her fingers over the thick pages of an untitled book. Sometimes she would gasp or say "No!" at a critical point in the narrative, and you would think,  "What is she reading? Must be a good book!"

But she is losing it. She doesn't read much any more, and if she doesn't sense the presence of somebody nearby, she'll call out "Help me! Help me!" and even shriek for some kind of reassurance. So we all say, "It's OK, Gloria. We're here." But often it's not enough. The other day they gave her a bath or shower and you could hear her throughout the entire floor crying out. "Help me please! Help me please! Ah, ah, ah! I'm dying! I'm dying!" It went on and on.

The other day Julie brought Ollie, the dog we babysit, and had Gloria touch his plush white fur. "Oh, this is nice," she said.

*

Rode my bike 110 miles yesterday, Milwaukee to Appleton. It was fun, felt good till I hit the Eichenbaum trail. If I were rich, I'd have it paved.

Eden, Wisconsin, where they grow the trucks big.

Recent Mom art