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.