Life is a Mystery

29 March 2011 . Comments Off

Remembering: Apart

I was apart from Oma for the two weeks at the end of March and beginning of April 2010. Dagmar was with her, arranging for the shifts of nursing care. On March 29 I wrote:

Veronica

I spoke with Dagmar this morning. Veronica, who will take Anna’s place over the next two weeks with Oma, is at the house and learning the ropes from Anna. The big news was that once Anna gets back in two weeks, she plans to stay on! In other words, no switches every two weeks. Every now and then she will have to take a break or deal with family matters (she has a nine-year-old son living with her mother in Slovakia), and at those times Curavita will supply someone else to be with Oma. But in general, Anna will be present with Oma.

Since Oma really likes Anna, this seems like a win to me.

Oma waved when Dagmar showed her the videophone with me on it. She is still in bed, but is doing well, according to those there.

Dagmar added:

I also told Anna that when I return she may bring along her boy some time, once he has summer vacation, so he wont miss her so much. I have tried to make anja feel welcome and part of the family and am glad that the effort bore fruit.

Well… “well” is relative. She will be in bed for awhile. Her blood pressure is too low and her heart beat irregular so… as I said well is relative. Tonight Dr. B made a house call and simply said… there is always hope… but her heart is weak.

Dr. B was the neighborhood doctor, who lived at the end of Oma’s block. He would stop by regularly. Oma was also being followed by Dr. D, her longtime friend and doctor who had also cared for Opa. Dr. D was more of a specialist, though, and Oma’s case did not really fit his specialty. But he was highly regarded, even by Dr. B. In addition Dagmar had arranged with the only hospice operation in Vienna, a mobile hospice, to have their doctors on call. The nurses of the mobile hospice checked in with the nurses of Curavita to make sure the home care staff, Veronica for the time being, were doing their job. It was quite an operation!

Oma and Dagmar

Meanwhile, at home, Alex was getting ready to celebrate his 18th birthday and return to Vienna with me.

28 March 2011 . Comments Off

Remembering: New Technology

Once I landed in the States again, my incentive grew for making sure that those of us over here could communicate with her in Austria. Stephen had helped Dagmar install a Skype phone, now I really needed to use it. Here was an early success, on 3/27:

I spoke with Dagmar this morning and she said Oma was having a very good day. Oma ate breakfast by herself today. As I was on the phone, Oma started lunch. Attached is a set of images from today’s lunch. Oma eating. That is a wonderful sight to me.

Omaeatingsm

It was really wonderful to be able to talk with Dagmar and Oma this way. We had also set up a frame in Oma’s room that rotated through pictures family could add to using a Flickr tag.

One of my sisters noted:

Mom’s been a little harder to catch since Natalie returned, but I have caught her once or twice on Skype to check in.

Apple was about to release the iPad as well. We had decided that Mary, Nate, Alex, and I would hold a “biggest loser” contest with the winner winning an iPad, but that would be a 3G iPad not even due out for another month. So I unilaterally decided to buy a wifi iPad and sell it in Austria at the tail end of my next visit. I really wanted something I could use to both communicate, share pictures, and read on while sitting with Oma. I’d put in my order just before leaving Vienna, now I was just hoping it would ship in time.

27 March 2011 . Comments Off

Tweets of the Week

26 March 2011 . Comments Off

Remembering: Leaving Oma Behind

The same week Oma returned to Huschkagasse I had to return to the US with Nathaniel. Before we left, though, we got to spend a couple days with Oma at home.

Anna1

Anna came home from Rudolfinerhaus with Oma, which turned out to be a huge blessing. Anna was amazing, able to pull Oma up in the bed all on her own, able to listen compassionately, but still insist on doing things Oma didn’t like, like cleaning or eating. Anna came to us from Curavita in Vienna, a firm that places nursing care in the home for extended times. They typically place a nurse in the home for two weeks, followed by another for the next two weeks. These two then trade off biweekly for as long as the care is needed. The care may be part time or full time. The nurses, like Anna, are not necessarily “licensed” as we know them in the states, but they are screened and trained, usually from neighboring countries like Slovakia or Hungary. Oma clearly liked Anna, and we quickly learned why. It is amazing how quickly this sort of stress brings someone into the family. Anna became one of us.

Nate+cello

One of the highlights for me during these first few days at home was that Nate, who had been faithfully practicing with his cello the whole two weeks, finally got to play where Oma could hear him. He’d been too shy to bring his cello to the hospital, but sharing this with Oma at home was easy, he just practiced in the living room while she lay in the next room. Oma clearly enjoyed this connection, and the chance to hear Nate play.

Kahlenbergerstr Ghosts

Having Oma at home was wonderful, but I also needed to get away from the stress and silence of the house. We went for walks, on missions to Ikea, and visiting easter markets and other haunts around Vienna. One very special visit was to the Jewish Museum, where one permanent exhibit shows ghostly holograms of artifacts from lives lost, from a past that can no longer be touched. There we also saw a temporary art exhibit of works created by Viennese artists who were killed by the Nazi regime. One painting struck me particularly, it portrayed Kahlenberg from the same street we often walked on. This is a walk that my Opa took me on before he died and it was a walk that often soothed me during Oma’s illness and at many other times of stress in Vienna. I was so moved to find this beautiful image of my special walk painted so lovingly by someone who was so unappreciated at the time that he was thrown away by his society. It was labeled “Alte Kahlenberger Straße, 1933″ by Fritz Schwarz-Waldegg. Would we all be so forgotten? Do our spirits linger in the places we love?

Standing+stephen Standing

Oma was getting stronger these days. She was sitting up in bed regularly. We were eager to see her improve and pushed her to do more. At one point, Stephen and I tried to help her stand with Anna hovering nervously nearby. Oma was super shaky. She certainly could not stand on her own. We held her for a minute and then let her down again. She was quite relieved when the ordeal was over. I was impressed by her frailty, being that close helped me understand how weak she really was.

Trude Sigrun

The thrum of the oxygen generator became the sound of the house, the curtains across the dining room, now Oma’s bedroom became our new normal. The visitors began to stop by to see Oma. Her dear Trude, faithful Sigrun, amazing neighbors Heinz and Helga, problem solver Gerd, along with the evolving medical team of Curavita, the local mobile hospice service, and the neighborhood doctor from the bottom of Huschkagasse. Dagmar planned to stay in the mix until I could return in April, but for now it was time to leave Oma in her new matrix and pray that she would recover with the help of this wonderful community around her.

The nights were rough. Oma continually cried out for help, pressed the buzzer for Anna, woke us looking for attention and solace. I was only got two hours sleep the night before Nate and I left. I can’t say I was terribly upset to get the relief of an ocean between me and the situation, but I was terribly afraid that I would not be there with Oma. We left on Tuesday 3/23.

I returned from Austria yesterday, so we are no longer with Oma. Natalie will be returning from Vienna tomorrow. Dagmar will be alone with Oma and her nurse (Anna) as of Thursday. She will stay in Vienna until April 6th. I plan to go back to Vienna on April 6th (possibly with Alex) and stay through May 4th. I think Dagmar plans to go back in mid-May.

Two days later, on 3/25, Dagmar wrote to me with increasing concern:

well…yesterday her blood pressure dropped so low the doctors did think we might loose her. the other problem may be her kidneys. has had problems with those for a while.

This would clearly not be a comfortable few weeks in America.

Nearby

21 March 2011 . Comments Off

Testimony to MN House Education Finance Committee on HF934

I believe school is an intensely social experience. Raising my kids in a respectful multicultural environment is what East Metro Integration District has been about. Kids can be friends with anyone, they talk with each other, they share and know one another. Their comfort with each other will make the world a better place as they take their place in it. EMID is also an environment where smaller scale makes it possible to develop practices that could transform education, if only we had the fortitude to listen to the lessons. Unfortunately, some of the most transformative practices, such as multiage looping classrooms, have already been sacrificed on the alter of state standards and testing. Even our year-round calendar, which teachers and parents know prevents the summer “backslide” and keeps kids engaged all year long in learning, is under stress because it actually puts our kids at a disadvantage when they participate in statewide standardized tests (administered during a calendar window rather than a student-contact-days window).

Focussing solely on the achievement gap misses much of what happens in a school. EMID serves not only the kids in our schools, but educates the educators in 10 districts. Integration funds carve out an important space for innovation, for testing new ideas while giving kids the confidence and space to know one another and each others cultures.

But while this bill renames integration to innovation, it will significantly harm EMIDs ability to do this vital work. I sit on our site council, I attend our board meeting, I know how dependent we are on the foresight and understanding of this committee. We need your support, I hope we get it.

20 March 2011 . Comments Off

Remembering: Oma Comes Home

Time dilates when the stresses pile on. Anyone who has tended a loved one in the ICU or lived through the aftermath of an accident experiences this rush of events that can hardly seem, in retrospect, to fit the time they were given on a calendar. This week with Oma and Stephen and Dagmar and Natalie and Nathaniel was dilated this way. How did we do everything we did?

We are pretty sure she will come home this week, but nothing is certain. She has been improving, more ready to smile or joke, more ready to try foods again, maybe even sleeping a bit. We have oxygen at home now, still waiting for the bed. Dagmar has worked hard to get care for Oma set up at home, the outfit doing this will be shadowing the nursing staff at the hospital for a couple days to get the routine down, then we hope on Friday to bring Oma back to H9.

It will be quite strange at home even if Oma does return. Right now it feels empty without her. But if she is lying and recovering/crying out in the diningroom/now/bedroom that will be very odd as well.

I have pictures of walksEastermarket Walking with Nathaniel and Stephen, somehow finding time to get out in the Vienna woods, or visit the easter markets around town in the spring. Finding ways to enjoy this wonderful second home our family shared.

Spring sprung in Vienna today. The sun came out after two weeks of snow, rain, and cloudy days. After Oma’s bed arrived this morning, Stephen, Nathaniel, and I took a walk from up on Kahlenberg to Nussdorf while Natalie and Dagmar visited Oma and took delivery of the mattress.

Gabriella asked me about how Nate was doing:

He says he is doing good. He is sad and worried for Oma, but he certainly helps me stay on an even keel. We do a few normal things together, going for walks, going to get ice cream, we’ll go to a movie this week.

I have pictures of us shoppingReady Sillybubbles for the things we would need to transform Oma’s dining room into a recovery room. The bubble wrap for the dishes. The boxes to pack up everything. The curtains to hang for privacy from the living room. We thought Oma would like the light of the room, the view of Cobenzl above. We knew we would appreciate the access to the kitchen and the proximity to the living room.

I have pictures of the visitorsVisit to Oma’s hospital room, where she began to smile a little and believe that she might actually make it home after all. She would not die today, instead she would talk with Günther. She would not die today, instead she would eat. She would not die today, instead she would argue with Dagmar. Anna, who would be so important and wonderful in the coming weeks, also appeared in our lives.

By this afternoon when I stopped by RH, Oma was so sound asleep she didn’t even flinch when she got a shot in the leg. Later she woke and told Dagmar she was worried about the move home. This seemed quite wise to me, as life has been pretty easy on Oma in the hospital, if you overlook all the outright suffering. Home will be substantially more demanding. Without IVs she will have to eat and drink more regularly. The noise around the house will be greater than what she deals with at RH. And Anna, the first caregiver from Curavita (the 24 hour care service), does not have quite the grasp of German we had hoped for. We expect Oma to be “delivered” home around 2pm tomorrow, it will be quite a challenge. At least Oma will get to hear Nathaniel practice his cello!

When the moment finally arrivedWaiting Return on May 19th, it was a bit of a shock.

Milestone: Oma is in the house.

She had a pretty stressful transfer, with a ride down from the top of Huschkagasse in a stretcher that was no fun at all (though Nate might have enjoyed it). She fell asleep soon after getting home.

Oma would still need oxygen. Oma would need 24 hour nursing care. Oma would be bedridden for likely weeks. But Oma would come home. She arrived in an ambulance at Huschkagasse 9 and was wheeled into the room we had prepared. She was home.

Eric+oma

20 March 2011 . Comments Off

Tweets of the Week

15 March 2011 . Comments Off

Remembering: Aiming for Home

This was a week of struggling to get Oma strong enough to go home, while also preparing the way for her to be there.

March 13th:

I think Noelle was essentially correct in saying that there was “no significant improvement” yesterday. However, Oma did hit some significant milestones yesterday. She stood up for the first time this week. Twice. She sat at a table. She sat up to try to eat. These were all exhausting for her, though. Her body is clearly improving, but her state of mind is not making the same progress. Her language was a bit less clear yesterday than the day before. And she shows little interest in moving toward health and away from the end, in my view anyway. Even though the doctor has said she could come home next week I would be very surprised if that was the case. However, I would be equally surprised to find she has died next week.

Still, each day has been a journey, for her and us. So I can’t really predict a thing. Oma is doing both well, and horribly poorly, depending on your perspective. We smile and weep in equal measure. I wonder what today will bring.

March 15th:

Conversations? You can hardly call them that. Tommy [a family friend and her lawyer] refuses to talk to her because she is not coherent enough to make binding decisions. Dagmar has tried, but not really gotten through. Oma has made decisions, we all more or less know them, but she failed to assign anyone the power to carry them out.

For a few days it seemed she just wanted to go, meaning to die. But today (and yesterday too, maybe) she began to accept that she was not dying and had to either eat and go home or not eat and end up in some kind of nursing facility. The latter is her nightmare, so she has started eating. Today she rifled through her purse with Dagmar and complained about various things, even ticking Dagmar off. For me, seeing the tension rise between mother and daughter was a sign that mother is on the mend.

This won’t be simple. She needs quite a lot of care still. Dagmar is arranging 24 hour in-house care for Oma. Those folks will do another eval on Wednesday to be sure they can pull it off.

This evening when we stopped by to see her she was sound asleep. Sleep has been very difficult for her, so this was another good sign. We let her rest peacefully in bed. We’ll see what tomorrow brings.

Natalie had even introduced Oma to an iPod. Ipod Oma told us she loved the Chopin Études, so we tried to make sure she could hear a bit of her favorite music.

Dagmar worked hard on logistics (finding a bed for the house, considering a renovation of the downstairs bathroom, finding nursing care) and legalities (getting a lawyer and notary to document Oma handing off legal authority to Dagmar, making sure Oma’s will was in place and up-to-date, seeing that Oma’s wishes for end-of-life care were clear). These were arduous and painful tasks made more challenging by the unfamiliar bureaucracy of Austria.

Meanwhile, we had moments of Vienna.Musikverein Nathaniel and I did get to see the Tonkünstler orchestra play at the Musikverein. We sat in the front row!

I also began to realize that two weeks was not going to be enough time in Vienna. While I had to return Nathaniel to school, I also started looking at a return to Vienna in April, possibly with Alex. I was pretty sure Oma would still need us.

13 March 2011 . Comments Off

Remembering: Rudolfinerhaus

Cat Nathaniel and I arrived at the Vienna airport on Thursday March 11th and met my brother Stephen there. I like taking public transit in Vienna, so we all took the City Airport Train together. The route home to Huschkagasse from the airport goes right past Rudolfinerhaus on Billrothstrasse. This time, we didn’t go home, Oma lay in Rudolfinerhaus and we wanted to see her first thing.

Back in February of 2010 Oma I got a call while I was traveling to Code4Lib. Dagmar was very concerned because she had just spoken with Oma and Oma seemed very disconnected, she wanted me to call Oma and see what I thought. So while I waited for my plane I gave Oma a ring and said hello. We’d talked at least once every few weeks for the past few years. She always was complaining of being dizzy and not feeling particularly well. Her life sounded unimaginably lonely to me, and Dagmar and I had been asking her to consider moving to a nursing home just to be around more people. On this Monday (2/22) in February she had lost consciousness for a bit, she was lying down on her couch not feeling well at all, she was mad that her cleaning lady had been gone and unable to help. She sounded a bit off, but her wits were gathering around her. She was going to head to the hospital and was waiting for the taxi.

I was very concerned, talked with Dagmar again, and decided to fly to Vienna to see Oma in March. We assumed Oma would be out of the hospital by then, but we wanted to have a difficult conversation with her about the future, about a nursing home, or at least about home care that went beyond unreasonable expectations of cleaning ladies. Mary and I decided that Nathaniel could miss two weeks of school and join me on this trip. We began to make arrangement that same day.

Oma did improve at the hospital after what was determined to likely have been a stroke. She was in Rudolfinerhaus, a very nice private clinic only a few blocks from home. Her doctor, Dr. Djavan, practiced Urology there and had cared from her husband, my grandfather. Her case was not particularly up his alley, but they were fast friends, she trusted him, he cared for her, and Rudolfinerhaus was always her her destination when a medical crisis called her away from home. I talked with her often during those weeks, and she always expected to head home in another week or two. She was very excited that I was visiting with Nathaniel, she looked forward to hearing him play cello. But something else always came up, another bad spell, another poor test result, another procedure to be done, so the date of her return home kept receding into the future.

The day Nathaniel and I left Minnesota was the same day that she experienced another, more severe, stroke. Dr. Djavan told us to hurry, Dagmar and my sister Natalie decided to get on the next plane to Vienna. There was no question for Stephen and Nathaniel and I that Rudolfinerhaus would be our first stop, all that awaited us at Huschkagasse, after all, was a spooky silence. We stepped of the streetcar and walked into the hospital in our scruffy travel clothes pulling our bags behind us. We found Oma in a quite single room on the second floor.

It was a shock. She was asleep, but looked incredibly worn. She had not been responding to the nursing care since her stroke the day before. We bent close, we held her hand, we let her know we were there. We didn’t really get words back, but we did get a response. That room in Rudolfinerhaus became the center of our universe.

I can hardly express how much it meant to me to share this experience with Nathaniel. I could not cry that morning, but Nathaniel wept in the hall. I needed his tears and I needed the future he represented. We had lived with Oma for six months in 2007, and I was so glad he knew her enough to feel the pain of this moment so keenly. She was not the person we had known so well, and yet, there she was, still with us and needing us. It was awful, but it was also an amazing gift. I had space in my life that let me be with Oma, be with Nathaniel, and be with my mother and sister who would gather together the next day.

Although Rudolfinerhaus became the center of the universe, Cellopickupit was not the whole universe. Having Nathaniel along helped ensure that. He had become a cellist in his school orchestra, and he needed to stay in practice. We found that Vienna is full of cellos for rent, and got one the next day from a little shop tucked into the block with the Musikverein. Excursions like this, or to get ice cream or go shopping balanced the intensity of Oma’s room. It was wonderful to be in Vienna!

Headingdown Thelook Dagmar and Natalie arrived, and we all started to take shifts with Oma, pulling her back to us with our care and presence. One year ago today was one of the victorious milestones of this journey: Oma sat up in her bed. Threeheadssitup Holdingon She had outlasted Dr. Djavan’s worst fears, but it was unclear what that meant. Could there be a fate worse than death? As Dagmar wrote a year ago on this day:

living in limbo may be worse? i wish oma could trust the universe enough to just give her power, whats left of it, to tommy her lawyer or her only child….but i am afraid thats asking for more than is possible. i honestly don’t believe she understands the full implications of her stubborn refusal to trust us.

meanwhile she was doing much worse last night.

she has difficulty breathing even with oxygen, is in pain from a back injury she suffered when she fell during her last stroke, won’t eat and drinks very little. all together not a great recipe for recovering?
then again….”with god all things are possible”.

We bought some supplies to pack up everything in her dining room. The mission for the next week and a half became clear: we were going to bring Oma home.

Rudolfineroom

13 March 2011 . Comments Off

Tweets of the Week

Eric Celeste / Saint Paul, Minnesota / 651.323.2009 / efc@clst.org