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.)