Sibylle and I are benefiting from a bit of happenstance this afternoon. A wonderful bit of peace and quiet amidst an otherwise tumultuous week.

Our flight from Atlanta was smooth and unremarkable. The plane was no where near full and consequently people were spread out across two and three seats all over the cabin. By booking one of the two-seat sides of the aisle instead of the three-seat center I seem to have cost us the chance to stretch out and sleep a bit. Fortunately there were some two-seaters open and I moved back a few rows so that Sibylle and I could both spread out a bit and try to sleep. I don’t know how much sleep we managed to get, but I feel like I got more on this overnight flight than the one two weeks ago.

After clearing immigration and customs we bought tickets for the S3 S-Bahn to take us to Winnenden. Once there we meet with Herr Alexander at the funeral home. He was extremely helpful, taking his time to answer all of our many questions, and explaining the differences between what can and cannot be done in Germany as opposed to America. For example, in Germany a cremation requires a casket whereas in America it does not. Some of the information he provided us added to this week’s to-do list in a constructive way. We know what official documents to get or deliver now.

Herr Alexander also located a hotel room for us; one that met our requirement of having Internet access. We knew of two hotels in the center of Winnenden that had Internet access and had talked about staying at one of them. They were both booked, however, so we ended up at the Burghotel “Schöne Aussicht” in Bürg. Bürg has a medieval tower dating back to the 1100s and we have visited it twice in prior trips to Germany. Located on a hill top east of Winnenden, it has incredible views of the surrounding countryside. The hotel is very nice and is a place Sibylle has long desired to visit and stay at. Our room has a private balcony with a vast view to the southwest. It also has Internet access (free), a heated tile floor in the bathroom, and an excellent restaurant just up stairs.

Staying here in a place of peace and beauty seems appropriate and moreover takes excellent care of us in the middle of a difficult week.

Picture taken September 2007. The hotel is to the left, and down, from the tower, and our room is the balcony on the corner of the building, between the two white walls.

As mentioned in an earlier post, on Thursday I was able to speak with my mother but the phone conversation was difficult because she didn’t have enough breath to speak and her diaphragm was not strong enough to bring out some of the consonants, and at times her speech was so slurred, I didn’t know what she was trying to say.  It was frustrating, and I was very concerned.  I was worried that there were things my mother wanted to tell me but couldn’t.

Fortunately, the next day, Friday, she was in much better shape and we were able to speak on the phone, one last time.  Her speech was clear, and she happily told me that her sister had surprised her with a visit, coming up from Switzerland for a few hours.  They had lunch together and a wonderful talk about all kinds of stuff.  On the phone, my mother’s voice sounded strong, and while we didn’t speak for long (she said she didn’t have the strength to hold the phone any longer), we had a good talk.

That’s my last memory of her.

I am so glad, and eternally grateful, that we had one last chance to talk and that she was able to speak. 

I am eternally grateful that Mark and I made that trip to Germany, the last week in January.  The last day we were there, after having thought about it for a long time I asked her permission for Mark to take pictures of her, which he did – very discreetly, no flash, no pointing camera at her and me, just once in a while lifting the camera a bit out of his lap from where he was sitting on a chair by the wall.  I look at the pictures, with sadness and with gratitude.

I am grateful that my mother was still “there” until the end.  She was lucid, mentally alert, she was able to participate in discussions, she was able to express wishes and desires, she still had plans to look through her stack of newspapers which had accumulated on her nightstand.  Occasionally, we found reason to laugh.

Often, there was a sparkle in her eyes.  It was still her.

That’s what I remember.

And for those memories I will forever be grateful.

While I am not afraid of flying itself, I do experience some pre-flight jitters every time I fly. Being a first born and therefore having a strong dose of “wanting to please authority” in my personality, I am not comfortable until I’m in the gate area, boarding pass in hand. (I experience a related but much less pronounced anxiety going to see the movies – like to be in my seat 15 or 20 minutes early.)

Today’s jitters are enhanced (amplified?) by the slightly snowy weather outside. I don’t think our flight will be delayed, but we only have an hour and forty-five minutes for our connection in Atlanta. The Atlanta airport is huge and we’ll need to take a tram from Terminal A where our KC flight will land to Terminal E where international flights depart.

In 2008 when we flew to Germany we nearly missed our overseas flight as we only had a 50 minute layover and our domestic flight was slightly late. I guess I won’t fully relax until we are in the international departure lounge, boarding passes in hand, looking out the window at our plane to Stuttgart.

It’s going to be a longish day.

Sibylle and I started the trip to Germany today. Neither of us quite expected to be returning so soon after our last visit. It is hard to believe that a week ago we were in the air on the final leg of our return from Stuttgart.

This trip, and this week, will be difficult in many ways. We have much to try and accomplish at a time when even the simplest activities can be overwhelming. Having things to do, having a task at hand is wonderful as it gives a moments respite from the knowledge that Sibylle’s mother has died.

Preparing for this trip was made easier, I think, from having just done the same things two weeks ago. We used basically the same check list, contacted the same friends to help out by watching our cats and house, and are following the same steps to reach Germany. It is good that we could do this more or less on auto-pilot, keeping focus for long periods of time is difficult.

Arranging air travel just a day or two before you fly is difficult. All the direct routes are taken, and you are left with options that potentially include 20 or 25 hour layovers making what should be a 18 hour journey closer to 40 or 45 hours. After going back and forth trying to find the least objectionable set of layovers and airports on the Delta site, I decided to give kayak.com one more try. I wanted to make sure that some other airline didn’t have a better price than Delta’s. We like Delta since the trip is easy with them: Kansas City to Atlanta to Stuttgart. But since all we could find on Saturday were flights with 2 and 3 stops, all over the map, I thought I’d see if American or United had something better.

Imagine my surprise to find a direct flight on Delta – MCI – ATL – STR. Both ways. No additional changes. I thought it must be too good to be true, but clicked on the “select this flight” button. I fully expected the Delta site to load saying, “we’re sorry, the flight you’ve selected is no longer available.” Instead I got the purchase confirmation page. Wow. I guess Kayak had a few direct seats left in their pool. I’m very glad I checked.

We had considered a bereavement flight and I talked to a Delta representative about it. For domestic travel this flight “code” allows great flexibility in your travel plans without incurring additional costs or fees. However, international travel is restricted and most of the bereavement flight benefits would be lost to us so we opted for regular flights. In the end the regular flight was less expensive and I was able to have the Delta representative notate our trip record with the reason for the trip. She said that if we ended up needing to change our return flight this notation might cause the supervisor to waive any flight change fees.

With our flights arranged we started watching the weather. The east coast is having a major snow storm that fortunately doesn’t seem to be impacting Atlanta. Central and eastern Kansas was forecast to have any where from 1 to 6 inches of snow, depending on location. Not wanting to be trapped by snow with a flight two hours drive away we decided to leave for Kansas City today and spend the night in our favorite Holiday Inn Express. The drive over here was uneventful, and best of all, the forecast has been updated. The worst of the snow is going to pass east and south of us, only trace amounts are expected in the area of the airport.

It will be a long day tomorrow; I am grateful that so many pieces have fallen into place for us yesterday and today. Being able to return to Germany with relative ease on such short notice doesn’t begin to ease the weight in our hearts, but it does make this journey a tiny bit easier.

At approximately 10:30 a.m. this Saturday morning, my mother died, peacefully, in her sleep. 

She is now in a place where things like being able to walk, or sit, or eat, do not matter anymore.  I imagine her standing there, looking at her new life, a bit cautious but still with enthusiasm – she’s always loved to travel and explore new places. 

I wish you a good journey, Mama.

With all the stress and turmoil and upset from my mother’s recent diagnosis of ALS, an email from Mark’s father provided unexpected but oh so welcome relief today:

We have a light snow in Decatur at 1:00 PM with 1 inch forecast tonight. However, We plan to leave tomorrow morning and stay some place in Tennessee tomorrow night.

 

The places where we have reservations in Florida are listed on the attached.

 

The hearing aids continue to be a joy. A whole new world – You should hear a toilet flush!

 

Dad

Downhill, decline, deteriorate.

I was finally able to speak with my mother on the phone – two days after she was transferred from the Klinikum Esslingen to the Klinik Schmieder in Gerlingen where she is for rehab.

“Speak with” is not entirely correct.  “Try to listen to” would be more accurate.  She had trouble breathing which means she has to take a breath after every word, sometimes in the middle of a word.  Certain consonants give her trouble, they just don’t want to come out.  And sometimes her speech was slurred, so I couldn’t understand what she was trying to say. 

Until now, I had been able to gauge her mental and emotional state by speaking with her on the phone, or better of course, speaking with her in person in the hospital.  Now, it seems, the phone is not enough anymore to communicate effectively:  there were several things my mother tried to tell me, but I wasn’t able to understand what she was saying.

I was able to speak with the nurse who had taken care of my mother most of today.  She admitted that my mother is not doing well at all.  Sometimes, especially after having slept, my mother is able to speak with less effort and more clearly, but when she is exhausted, her speech suffers.  The nurse said she had to rely on trying to read my mother’s lips at times. 

I asked the nurse, as I had asked the physician in Esslingen, whether my mother’s breathing problems were a symptom of ALS or rather because she is so weak.  My thinking is that if it is ALS, then there’s nothing we can do, but if it is “only” weakness, from not having moved and exercised the muscles that are not yet affected by ALS, then there is room and hope for improvement.  Neither the physician nor the nurse were able to say for sure which it was.  A combination of both, probably. 

The nurse offered to help with communication between my mother and me through email:  if there is something my mother wants me to know, the nurse will email me, and I am welcome to send emails to the nurse which she then takes to my mother. 

My fear is that my mother feels (and is) isolated because she has such trouble speaking. 

Unless I am there most of 24 hours a day = enough time to sit and listen and give her time to get the words out, our communications will now have to focus on essentials, saving her breath for the most important. 

I would like to know what she thinks.

Even before we left Germany, we talked about my going back.  Mark has only so much vacation time, so the next Germany trip to take care of my mother and her affairs will most likely be undertaken just by me.  There are certain constraints due to the piano studio calendar, most importantly the upcoming Concerto Competition on February 13, and then Music Progressions on May 1.  These events on the calendar mean not only that I need to be here on those days, but also that I have to take into consideration that I am preparing students for them which means that I have to gauge a “best” time to be gone during preparation time. 

MTNA, the Music Teachers National Association, has an annual National Convention which usually happens sometime toward the end of March.  As president of our local association, I should go.  As a pianist and piano teacher who loves Chopin, I want to go because this year, 2010, is the 200-year anniversary of Chopin’s birth which means lots of presentations on Chopin.  There will be an extra focus on cello which would be of interest to Mark.   This year’s convention is March 20-24, in Albuquerque, NM.  Before my mother’s health deteriorated and we started thinking about going to Germany, we had planned to go to Albuquerque. 

The convention itself is relatively inexpensive, compared to other professions’ conventions and conferences.  However, there’s the flight, and the hotel, and then I usually take advantage of the exhibitions, stocking up on new releases, new editions, special offers, etc.  We have already spent a fortune on the trip this past week.  Being able to take care of family is priceless, of course.  I still want to make sure, though, that we don’t spend unnecessary money, waste money, by planning poorly.

So, in addition to the calendar considerations, there are questions as to when I can find the best = least expensive flight.   And then of course, what time would be best = most helpful for my mother.  Which in turn depends on how long they keep her in rehab in Gerlingen (Klinik Schmieder), it depends on the test result in Ulm (what type of ALS, prognosis, etc), and which nursing home she goes to.

Next on the to-do list is the closing of her apartment which involves going through her stuff – mentally, using the pictures Mark took the other day, and then physically when I am back in Germany.  There are decisions to be made: which of her things she wants to and can have in the nursing home.  And then, what to do with the rest. 

Most of the things she has no trouble letting go of.  But then there are some things – some furniture, a lot of books, so many pictures - which she isn’t really ready to part with but for which she will not have room in the nursing home.  She doesn’t say it, as a matter of fact, she said it might be better to just get it over with (the getting rid of stuff) than to drag it out, but I see in her eyes that the thought of giving up some special things does hurt.  Most of the time, she has been so incredibly calm, and reasonable, impressively un-emotional but not cold; it is humbling to see a woman who has always treasured beautiful things – not necessarily an excessive amount of things, but beautiful all of them – and who now has to give up most of them.

I even thought of renting a very small studio/apartment just so we can keep some of her things.

In our online search for more information about ALS, I found the following sites particularly helpful:

http://www.sandraschadek.de  This German site has tons of very useful information for patients, family,  physicians, and generally anyone who is interested in learning more.  Very encouraging to me is the list of ideas and gadgets which may be useful as the disease progresses.  The personal accounts of patients and family are of course heart-breaking. 

http://www.dgm.org/ Deutsche Gesellschaft für Muskelkranke. 

I haven’t looked much at English/American sites yet.

Hour 0: 6:00 am Sunday (11 pm Saturday): Wake up call.

Yesterday Sibylle and I made the long trip home. Germany is seven hours ahead of Kansas, which makes the math a bit weird, but here is a rough accounting of our day. Times give are the local time for us, times given in parenthesis are Central Standard Time (CST).

We stayed in the Mövenpick Airport hotel a mere 50 meters from the entrance to Echterdingen, the Stuttgart airport. Upon checking into our room (a whole story itself involving fire alarms) we discovered they offered a European-style breakfast buffet in the room. The buffet included rolls, fruit, meats, cheeses, muesli, orange juice, and a hot beverage.  We ordered one and shared it which was perfect for breakfast. Also perfect was time alone in our room, especially in light of a long day confined in an airplane seat surrounded by 300 other weary travelers.

Hour 2: 8:00 am Sunday (1 am Sunday): Check in

Check in and baggage drop off was smooth and quick. We were asked the usual raft of questions about who packed the luggage and was it every out of our sight. The one new question was how recently had any of our electronic gear been repaired. After a bit of last minute shopping we made our way through security, again will a minimum of fuss.

Hour 3.5: 9:30 am Sunday (2:30 am Sunday): Second Security Screen

The international departure lounge at Echterdingen is behind a second security screening. This one was far more elaborate than the domestic security we had already been through. Our larger electronics (laptops and camera) were checked for nitrate traces, and we were frisked from head to toe.

Hour 4.8: 10:50 am Sunday (3:50 am Sunday): Take off

Our Delta flight from Stuttgart to Atlanta took off a few minutes late as it had been snowing all morning.

We waited perhaps 20 minutes while the runways were “de-iced” and then while our plane was de-iced as well. Fortunately they were able to adjust our cruising altitude to minimize headwinds and we made up the 30 or 40 minutes before arriving in Georgia.

There were four movies and a series of situation comedies shown on the large screen several rows in front of us. Even if you don’t want to watch you are trapped and end up staring at whatever is on the screen. The only movie they ran for us that I was remotely interested in seeing was The Informant, but I found it hard to adjust the volume so I could hear it over the plane without deafening myself. Instead I read all of a 500 page book and watched a couple episodes of Battlestar Galactica on my laptop.

The in-flight food was decent and plentiful. The stranger sitting to my left consumed four beers and snored while sleeping. It was a long 10 hours in the air.

Hour 15: 3:30 pm Sunday (2:30 pm Sunday)

Reentering the United States is an ordeal. Partly due to the fact that your mind and body are numb from 10 hours in flight and partly due to indifferent personnel who are only doing their jobs.

First stop is immigration where your passport (and resident alien status) is verified. Next you retrieve your luggage and pass through customs. With nothing to declare neither of us was stopped. Since we had a connecting flight you re-check your luggage (i.e., drop it off again) and proceed to security. I guess since you’ve had contact with your checked luggage you need to be re-screened before boarding another flight. This screening was by far the most invasive and time consuming of our trip.

Shoes and belt off, all pockets empty, stand in a phone booth sized scanning machine with your hands up for a scan and then turned 90º with your hands down for a second scan. My hands were checked for nitrate residue. All of this occurred while I was suffering from the worst head decompression experience I have ever had. My eustachian tubes don’t work, which means I have to manually equalize the pressure behind my ear drums by pinching my nose and blowing gently every few hours. After a plane ride with a pressurized cabin it usually takes 30 minutes or so for my head to feel right again. Yesterday the inside of my head felt like it was 4 times larger than the outside and no amount of clearing my ears helped. I just wanted to lay down and cry.

After clearing the security screening we made our way to our departure gate and I took some Aleve which, combined with some time at a stead atmospheric pressure, allowed my head to feel better. I also managed to eat some tasteless fried rice and drink some water. Sibylle stretched out on a couple of chairs and slept for an hour or so.

Hour 21: 7:45 pm Sunday (6:45 pm Sunday)

Our 7:02 pm flight to Kansas City was delayed for about 45 minutes while we were waiting in the departure area. No reason was given other then the flight from Detroit was late. After boarding all of us they were unable to start the plane. The ground equipment that provides air pressure to start the turbines wasn’t working and it took about 45 minutes for the alternate to arrive.

Hour 22: 8:30 pm Sunday (7:30 pm Sunday)

Finally we were in the air again headed towards Kansas City. Both us were exhausted and starting to wonder about the two hour drive home from the KC airport to Manhattan. At times I felt very awake and I was willing to start the drive. Sibylle was nauseous and not feeling well at all. She was concerned about being able to stay awake in the car to talk to me to help me stay awake. We were both concerned about the weather forecast. Monday’s weather in the KC area didn’t sound like something we wanted to drive in. And we really wanted to be home and not in another strange bed in some motel for the night.

Hour 23.5: 9:00 pm Sunday (9:00 pm Sunday)

After landing in Kansas City we collected our luggage (always a long wait for some reason) and stood outside in the cold, fresh Kansas night air waiting for the long-term parking shuttle. It had occurred to both of us that one could get the bags while the other went to get the car. However in our sleep deprived state neither of us broached the idea. We had to wait for the second bus as the first filled before we could board. By 10:30 we were in the car ready to drive somewhere.

Hour 25: 10:30 pm Sunday (10:30 pm Sunday)

We decided to follow the I-435 bypass west around Kansas City to the I-70 interchange where there are a handful of motels. If I wasn’t able to stay awake we’d get a room there for the night and continue home on Monday morning. As it turned out I felt awake enough to continue on. At Lawrence and again at Topeka I assessed my reaction times and alertness and decided to keep going. After Topeka there isn’t anything – no towns on the highway, and, in the dark, no scenery to involve you. Just the head and taillights of other late night travelers. A quick stop at the Topeka service center on the Turnpike for a coke and a candy bar was the only time we stopped.

Hour 27: 1:00 am Monday (1:00 am Monday)

Shortly before 1 am we rolled into our garage and stumbled inside with our baggage. After quickly checking the house and the cats we fell into bed and passed out.

According to my Delta Skymiles account we covered 10,055 miles on our trip. Air travel is amazing if exhausting experience.