Wednesday, May 28, 2008

Flash back

Susan in a real "Poodle Dress" with father, Jack B. and mother, Emma, 1953.

I wrote the following poem for my beloved father Jack as he lay dying in a hospital across from a lovely lake in Sanford, Florida. Dad died a courageous and graceful death from prostrate cancer. Like Martijn he kept his wits and humor about him until the very end. I think my love for Martijn stems in many respects from my love for my father who wanted to protect me from anything harmful. I hope you like my poem:


One Light

slowly slipping from me
your spark
that seminal flame
that lit me into being
and lights me still
is flickering
fading
slowly
your silver sheen pales

yet
I shine for you
in crystal tears
of parting
in golden comfort
of knowing
you’ll glow hereafter
you’ll glimmer
here
in me
father

©1982 Susan Schaefer, Ride the New Morning: Collected Poems

Sunday, May 25, 2008

Care Giving: Perspectives

Martijn rests on Thursday in his study on his day bed 
reading "Night Train to Lisbon".
Nurse Ans wraps to contain the thrombosis

His
It was a horrific week for Martijn. It began on Saturday, May 17th when his right leg swelled painfully to twice its size. This swelling was different than that associated with the lymph symptoms, so we called Dr. Bom that evening. He responded quickly assessing the situation as thrombosis and calling a specialist with the symptoms and medical history to confirm his suspicions. Normally a patient would go to hospital for tests, but given Martijn’s condition everyone agreed to proceed. Dr. Bom ordered injections of blood thinner, which he administered that evening, and wrapping material used to treat thrombosis. The next day our old home care team from ‘Green Cross’ began their work with us as they had post operatively last fall. Nurse Ans arrived Sunday to wrap carefully Martijn’s affected leg and continue with the injections. Monday one nurse bathed him while another team checked the wrapping and yet another came for the now nightly injections. But other complications surfaced: constipation and urination problems. Dr. Bom ordered stool softeners for the former and what is called a condom catheter for the latter. But by Thursday Martijn’s abdomen was painfully distended in spite of the fact that the thrombosis swelling in his leg was decreasing. Thursday evening I asked Dr. Bom to come to check his abdomen – his renewed assessment was bladder blockage. Again the night pharmacy delivered and after a ‘real’ catheterization Martijn began to flow again. What a difference – by Friday his bladder was functioning as well as his bowels. Appetite returned. His color and energy returned. And for the time being we feel that he has stabilized. During this time of distress Martijn kept his constant centered disposition, but the episode has taken a great toll on his energy.

Mine
And on mine. During this latest period the cumulative care giving has taken a toll on my energy. I have managed, up until now, to regroup after previous roller coaster effects, but not this time. Even with my brother-in-law, Janus, agreeing to come to administer to Martijn all day this past Wednesday so that I could attend a mixed business and pleasure team-building outing with my Knowledge Management colleagues from ECDPM, I have slipped a notch. Thursday I met with Alied van der Aa, my therapist, and we agreed that I would begin a more formal and rigorous attempt to schedule extra help for me. While Green Cross takes good medical care of Martijn, I still must be here to change his wound bandages twice a day (the tumor in his groin that is external), empty his catheter bag regularly, make and serve breakfast, lunch and dinner every day, put on and take off his clothing twice a day, and direct the various nurses on where to find what. On top of this, since we have no Dutch benefits, I have tried to continue to work, although mostly from home. Nevertheless, you can imagine the stress and strain to focus. Hopefully, this week I will work with Alied to turn the tide. Brother-in-law, Janus and my sister-in-law, Elly, will rotate taking one full day a week to be here with their brother. My mother-in-law already comes on Sundays brining home cooking. Maurice Schoffelen has been coming on Wednesday evenings regularly. Now I will try to find others to cook at least five days a week, taking at least that pressure off of me.

Physical pressure is only a part of it, though. It feels as if I’ve been a social outcast for a very long time now. I, who typically am so socially inclined, have been incredibly isolated for almost 16 months. It may seem we’ve had many guests but please don’t confuse this with leading a happy, balanced social life. I hardly visit outside the house and when I do I mostly want to return to be with Martijn. It is impossible to feel good about outside events when my heart is breaking. Which is the other part of this ordeal – how very sad it is to see your beloved in pain and literally breaking down on a daily basis. This sense of loss is palpable. The good news is that I’m very aware of my grief and mourning – not stuffing feelings or hiding from the pain. Nor am I wallowing in it. I know and recognize the loss I’m suffering for just what it is – a monumental loss. My life as we lived it is gone, and has been so for over a year.

Ours
And, the life we anticipated is gone as well. No retirement together living in this soft green landscape and traveling the world. No leisure time with family and friends, watching each other grow old. No more quiet evenings just hanging out, ribbiting and croaking for joy. No more back scratches or walks along the River Meuse.

What is here now, though, is an existence that is as sweet as it is bitter, maybe sweeter than that.

I have been given a rare gift, to spend Martijn’s final days together, hopefully providing him what he wants and needs. I have the fortunate circumstances where I can be with my sweet philosopher frog in our own home, in his own hometown, surrounded by his loving family with his longest-term friends nearby. We have loving and caring friends, my angels, who fly in from here and there, in person and virtually, to care for both of us as best they can. Thanks to the Toon Hermans Huis, we have learned of many resources available to us including finding Dr. Bom, Alied and others. And, although I am scraping the bottom of my savings, at least my years of work have allowed me to put away for a rainy day. So, in spite of the fact that we have absolutely no benefits from the Dutch government, we still have lovely home and can afford the medical insurance that provides for us in this time of dire need. And, as long as I can continue, I have work.

It still remains impossible to conceive that Martijn will not walk among us. His strength of spirit and his ongoing physical prowess in the face of so much deterioration speaks volumes about the care he took of his body, mind and spirit before this cancer felled him. Nothing will replace the love, gentleness, the spark that our relationship brings me – but I will always know we walked completely together in sickness and health, in joy and sadness, ‘til death do us part.

Sunday, May 18, 2008

Complications

Standing strong together, Mother's Day, May 11, 2008 in our home.
Martijn reads in our outer courtyard on Monday, May 5th.

Yesterday, May 17th,  Martijn suffered a ‘setback’ in his well being. He has developed a painful thrombosis – an anticipated side effect of his increasing immobility. We had an emergency visit by our lovely doctor, Dr. Bom, last night. Martijn will now be receiving injections to thin his blood and have his leg wrapped. This will decrease his mobility but hopefully this will only be a temporary setback with the proper treatment and rest.

Thursday, May 15, 2008

Philadelphia Brigade Brightens My Grief

Sisters Kate & Alex Tasch arrive in Maastricht on Friday, May 9, 2008, bringing their special brand of comfort, care and fun!
Busted? No. Great friend Maurice Schoffelen isn't locking the girls up, but merely offering his back of the van transport as Alex and Kate head to our friend Jacqueline Braun's bed & breakfast located a tad too far for walking from our home in Centre Ceramique. We've decided it is best for our guests not to stay with us at this time to preserve the most peace and quiet for Martijn and me.
On Saturday, May 10th, Martijn accepted an invitation to spend a few hours at his mother's cabin located 20 minutes away in Lanaken, Belgium by car. Maurice thought it would be nice to show K&A nearby Valkenburg, Limberg's equivalent of New Jersey's Wildwood. Very touristy. We walked the town, viewed the ruins, rode the ski lift to the tower on the hill and ate fattening 'biter balen" the local answer to Philly cheesesteaks. Heavy on calories and taste!
Alex, Maurice and Kate pick up sticks on a short hike through Valkenburg's woods. Total twiggies.

When Kate and Alex wrote that they would like to visit Martijn and me I felt overwhelmed with gratitude. You see, the Tasch family was my first 'official' adopted family. Their father, Peter, became my first 'real' employer in 1969, when, as a work-study student at Temple University I became the Office Administrator for the scholarly journal, The Scriblerian, which Peter edited and managed with two other colleagues. I worked for Peter for three years, during which time his wife, Alison, who also taught in Temple's English department where I was a student, and their three children, Jeremy, Kate and Alex, became my first 'family' of choice. It is a relationship I've maintained and cherished over the past 40 years. In fact, when I ran my Philadelphia Public Relations Firm, Ingram & Picker, Alex became one of our first intern's, making the cycle full.

Their visit opened a window of my soul letting some light into the darkness that currently dwells there. My grief of late has lodged deep and wide. Even as Martijn proves his mettle by his heroic ability to tough out his pain and keep up his overwhelming good humour, even as he labors to do the small things for himself he is able to do, I mourn my upcoming loss. Just this determination, just this magic display of character, though also intended to help me in my daily routines by keeping independent as long as he can, seems to intensify my impending sense of loss. I WILL MISS MARTIJN ENTIRELY BECAUSE OF HIS SPIRIT. While I know the 'ruling' zen wisdom is to accept each day we still have and to cherish it, I admit to you that I mostly dwell in deep despair at my own sense of loss. And, I am not ashamed nor remorseful about this. It is what I feel. I am neither wallowing in sadness nor looking for sympathy - only marking my own reality to share with you.

Mostly when I'm with Martijn, I do not feel this despair. It is only when I'm alone - when he's sleeping or resting upstairs or I'm in the shower or washing up dishes. Also, when I'm out and about Maastricht. Maastricht is Martijn for me. 

So, it was with supreme gratitude that I found being out and about with Kate and Alex, along with our dear steady 'tour guide' Maurice, that I felt lighter for the first time in a long while. Sharing our long and mutual Philadelphia-based history was a panacea for my ills. Identifying landmarks like the Wissahickon Trail in the Germantown section of Philly where we were neighbors for many years, or sharing snatches of history like the big English Department parties hosted by their parents in my carefree student days, filled me with a sweet succor of long term friendship. We didn't run out of stories or reminiscences during the entire weekend of their visit. And the icing on the cake was spending Mother's Day with two young women who feel like my own daughters.

There is much more to tell about Kate and Alex and the wonderful Tasch family. Like Kate's own role as caretaker for her partner, Michele during her frightening bouts with leukemia, or Alex's recent scare with a burst appendix, or the time Martijn and I stayed in a funny, funky Manhattan apartment of Alex's former boss, or the huge party hosted by Peter and Alison for me when Temple University honored me with a distinguish humanities award, or Peter an Alison's current struggle with the Parkinson's disease that is ravaging their lives. So much history and so much love.

So, I have found a lasting 'afterburn' from their visit that is helping me back on track to enjoy Martijn's enduring love and company now. What a great gift. 

Tuesday, May 06, 2008

Poignant Plans

My American 'brothers', David Fey & Michael Putman traveled to Maastricht in late April to offer support and love. They stayed with us for a few days before heading to Amsterdam and back home to Minneapolis. It was a most meaningful visit. David stayed with me for a week when Martijn underwent surgery in October; Michael actually got his very passport and made his very first visit outside North American for this occasion. 
Father Carel van Tulder, a retired Jesuit priest, will facilitate the memorial service for Martijn. We've been meeting regularly. Carel is comforting and grounding for us. He is open to our ideas for the service and says he is amazed at how centered we seem to be. We are grateful that he is in our circle. 
Werner, Martijn's dear friend from university days, and his partner Henk, spend some time with us a few weeks back.
Therese and Rob Frank enjoy a spot of sun in our courtyard. They go back to Martijn's university days, the same time he knew Werner.

It has been an emotionally draining time for me. Martijn, thankfully, continues to be comfortable, but in the past weeks we've begun to finalize the plans for the memorial service, funeral, and cemetery. In each case there has been a  bittersweet poignancy in the activities.

Martijn and I treat each subject with love and respect, even making jokes and being lighthearted. And the various individuals, like Father van Tulder, who are involved fill my heart with gratitude. 

Yesterday we chose the location for the memorial service, which will be the stunning St. Jan's Kerk in the literal middle of Maastricht - its center square, the Vrijthof. Both Martijn and I were pleased to learn it is available and has all the features we wanted - central location, beautiful interior, ample seating and excellent musical facilities. Our beloved friend, Herman Rouw, has agreed to play and organize the music. Herman is world class conductor, composer and pianist, but most important, he is our dear friend. He has also agreed to accompany one of my newer friends, Pia Brand, who works with me at ECDPM. Pia has kindly offered to sing the moving song, "Beloved Wife", by Natalie Merchant, a tribute of one spouse to the other. Martijn and I love this song and have agreed it will end the service. 

We also selected the location where the Dutch coffee table will take place - the fortress that sits atop Maastricht. This is the typical gathering here that follows the funeral. The church and this fort are places Martijn and I love and so have a lot of meaning. Yesterday we also selected the coffin and today, our dear friend Maurice Schoffelen accompanied me as I drove in my new car share to the cemetery that Martijn asked me to check. It is where his grandfather Martijn Mullens rests. By coincidence the caretaker was available and I was able to secure the spot to the right of his grandfather and grandmother's gravesite. Our good friend, Frank Koekenbaker, "Cookie", visited with Martijn while we made these arrangements.

As you may imagine these are details that must be attended to. And while we are both grateful that Martijn can make the arrangements as he prefers, it has taken all of my equilibrium to do these things with grace. 

Tonight, Ursula stopped by with Martijn's favorite newspapers and some special treats from her native Blackforest in Germany, and the wonderful owners of our favorite Maastricht restaurant, Le Courage, prepared and delivered a lovely dinner requested by Martijn - sweetbreads with grilled potatoes and veggies. We feasted as we often do, watching the Australian television series, "McLeod's Daughters". Our poignant plans now underway, hopefully we can enjoy each day that we have left.