Henk’s Choice
by Hanne Jensen
January 15th, 2019
6 p.m.
It is dark but has stopped raining when Tom and I head back across the street. The living room is lit with candles, and Henk is sitting in his favorite orange sofa, a half-filled cognac glass in his hand. He is ready. His husband, Martin, is packing a suitcase in the bedroom. He tears up when he hugs us, then smiles weakly. He plans to go to San Francisco with their good friend Lynn when it is over. The mood is quiet and somber when Tom gives Henk the antinausea medicine that needs to be taken an hour before the rest of the medication. Open photo albums are scattered around the room. Henk walks us through some of the photos from Amsterdam, pointing out their best friends, their beloved sailboat, the before and after photos of remodeled old houses. Martin pours us a cognac while Henk tells us how he was the doula for his sister during the birth of his nephew. She died years ago, back in Holland. He wonders aloud if he will meet her again soon. He is nervous and eager, like someone who is getting ready to board a train for an unknown destination.
We first met Henk and Martin shortly after they moved into the house across the street, four years earlier. We had seen a short, hunched-over elderly man in a fedora pushing his walker up the ramp to the front door, followed by a tall, smooth shaven, younger man in a tight T-shirt carrying bags of shopping. We guessed that they were Europeans even before we heard Henk’s heavy Dutch accent. When they invited us to their home for a gin and tonic one late afternoon, we eagerly accepted, curious to get to know our new neighbors.
Henk’s smile was mischievous as he opened the door to their home. Risqué paintings and art pieces lined the walls, and they had brought leather chairs and unique crystal glasses and dishes from Holland. It was clearly the home of a couple from a cosmopolitan city, an oasis of style and sophistication among the cabins and trailers of Monte Rio. We learned that they had lived in Amsterdam for the last 30 years, where Martin had been a successful bank manager. They decided to retire to California because Martin had grown up in the Central Valley and Henk loved the sun. They chose to be close to Guerneville, the gay mecca of Northern California, where they had visited in their youth. Henk had been a homemaker and a man of leisure, forced upon him by the lingering effects of a crippling car accident in his youth and a more recent diagnosis of Parkinson’s disease. He believed that sunbathing was the best medicine for his chronic pain, and could often be seen on his lounge chair working on his tan.
Henk and Martin soon became an integral part of our small neighborhood. They were invited everywhere, usually carrying Martin’s famous tiramisu. At the summer concerts and the monthly supper club, Henk always stepped out on the dance floor, dancing with the ladies, walker in hand. Our drink dates expanded to dinners, which often involved baked snails, intricate sauces, decadent desserts, wonderful wines, and always, a glass of cognac to end the evening. Martin and Tom were both born and raised in California and could talk about football and baseball, whereas Henk and I shared a European view and a sense of humor that created a special bond between us.
Because of my background as a hospice nurse and Tom’s as a pharmacist, the dinner conversation often focused on the differences in the US and European health care systems. One night, the talk turned to the euthanasia laws in Holland. Henk told us that you can ask your doctor to give you a lethal injection once you reach the age of seventy, if you have good reasons and are of sane mind. He confided in us that he had always wanted to be in control of the end of his life. He planned to take matters into his own hands when he felt that his desired quality of life was no longer possible. He told us that during the AIDS epidemic, many of their friends in San Francisco had helped each other end their suffering, only to be arrested as accomplices to suicide. He added casually that he would not involve Martin in his plan and put him at risk.
Martin remained quiet while Henk spoke, clearly uncomfortable with this conversation. When Henk went to the bathroom, he shared that he was always afraid he would come home one day and find that Henk had killed himself. It had not occurred to Henk that Martin needed to be as much part of his death as he was of his life. We sat for hours discussing Henk’s choices and the importance of support during the process of dying, whatever it would look like. I knew several people who had chosen to stop eating and drinking and could share that they had died comfortably a few weeks later. In the end, Henk promised that he would not go ahead with any suicide plan without involving Martin and us. This was the first serious conversation we had together, exploring Henk’s options.
January 15th, 2019
11 a.m.
It is cold and drizzly. Tom and I wake up heavy hearted, anticipating a difficult day. We have prepared for this moment for the last four years, but it still seems unreal that we are finally here. We walk across the street and find Henk and Martin having coffee in the kitchen. Henk is dressed in black shorts and a black jacket and wears his usual spicy cologne. He seems excited and impatient, ready for the journey to begin. He brings out gifts for us. A small embroidered purse with two old Dutch coins for me, given to him by his grandmother. A leather bracelet with a gold filling for Tom that Henk will keep on his wrist until after his death “to pay the ferry man to cross the river Styx.” He gives me his red felt slippers. They fit me perfectly and the color lights up the room. Martin is tearful and a little shaky. He has not slept much.
Henk, on the other hand, is eager to begin the day. He cannot have anything to eat for six hours before taking the medications and is determined to enjoy his last meal.
The four of us drive to Henk’s favorite Italian restaurant half an hour away in Santa Rosa. Beethoven’s Seventh Symphony is playing on the radio, and we are not talking much. The rain is pouring down and the forecast calls for flooding in the next few days. Henk comments that he is relieved he doesn’t ever have to deal with another flood. We laugh. Martin and I agree that we will bring some of Henk’s ashes to Amsterdam, and we joke that Martin will become my other husband once Henk is gone. The laughter is sweet and unbearable.
We are shown to a table in the corner of the restaurant and order a good bottle of cabernet sauvignon with our braised short ribs. The food looks delicious, and Henk makes an effort to eat. He has not eaten solid foods for the last two weeks, and after a few bites he starts choking, staring at me with panic in his eyes. I tell him calmly not to talk and to focus on his breathing.
He is able to get air in with difficulty, but a lot of fluid is coming up as he coughs. I can feel his mortification when the other guests turn and stare. I help him out of the dining room, and we sit in the hallway while he continues to cough up fluids. He is terribly embarrassed. When the attack is over, the waiter removes the discarded napkins strewn on the floor, and I lead him back to the dining room. I can feel him shaking as he holds on to my arm. He takes a sip of his wine but leaves the rest of his dinner while we finish eating. He looks at me across the table, and I
know he is worried about having to swallow the cocktail of medications later tonight. Is it too late already?
In the summer of 2016, Medical Aid in Dying became available in California by law.
Simply stated, the law allows a terminally ill adult who lives in California to request a prescription of drugs from their physician that will end their life. The person needs to make two written requests, followed by a two-week waiting period to make sure they don’t change their mind. They also need to be able to take the medications without any assistance.
When we brought up the subject with Henk’s doctor at Kaiser Permanente, we learned that Kaiser had their own palliative care department which included medical aid in dying. We were all relieved that there was a legal path for Henk. He would not have to hide, and both he and Martin could get the support they needed from their community when the time was right. Once we established that the option of medical aid in dying was indeed available, this conversation was put on hold. We did not revisit it until a few years later.
January 15th, 2019
3 p.m.
On our way home from the restaurant, Henk wants to stop at the Moshin Vinyards. It is their special place where they have enjoyed many wonderful afternoon wine tastings with friends and family. We are greeted by a familiar face in the otherwise empty tasting room. Hector is a young man who often served Henk and Martin at the winery. When he asks us what we are doing for the rest of this rainy day, we tell him the truth: We are celebrating Henk’s last day alive. We ask him to join us and he brings us chocolate to eat with the wine. Henk dictates a goodbye letter to the Moshin owners, thanking them for their delicious wine and friendship. He gets a big hug from Hector. We are all in tears as we leave, but when we get into the car, the radio starts playing Lou Reed’s “Perfect Day,” and we cannot help laughing.
We drop Henk and Martin off at their house and go home to tend to our dog and take a little nap. Someone from the mortuary calls to have me approve the latest changes to the memorial cards that Henk has ordered. Always the designer, he has changed the layout several times, and now wants a photo from our latest trip to Armstrong Woods Mountain on the front page. On the back of the card is a photo from Julia Pfeiffer State Park beach. Henk and Martin are holding onto each other in the waves, laughing with the sun in their eyes. This is the place where Henk has decided his ashes will be spread.
In the summer of 2017, Henk brought up medical aid in dying again, when his back pain worsened and his speech became slurred from the Parkinson’s disease. He had fallen in the bathroom a few times and was now having episodes of incontinence, which he found intolerable.
He was getting increasingly impatient with Martin, who shared with us in private that Henk’s forgetfulness and temper were also getting worse. To the outside world, Henk continued to be the charming, rakish, engaged listener who remembered everyone’s birthdays and anniversaries, always with a smile on his face. Only Martin was there to watch him when he fell apart. Henk made it clear to us that he could not tolerate another cold winter and started to make plans for his departure.
But that October, all their plans were scattered to the wind. Martin had a massive stroke while visiting the Moshin winery and was flown to San Francisco for care. He was transferred to the Kaiser rehab unit in Vallejo, and when he was discharged two months later, his speech was garbled, his right-sided vision gone, and his left side paralyzed. Henk’s caregiver was suddenly a patient himself.
For the next year, we realized that Henk was more capable than he or anyone else had imagined. He managed to put all their affairs in order, since he understood Martin would likely never regain full capacity. While he was unable to drive Martin to speech or physical therapy himself, he was still able to arrange transportation, food deliveries, and social outings for the two of them.
Henk drew on his community to help, and everyone in our neighborhood pitched in. Martin never regained his speech, but his brain returned to full function and memory. As Henk struggled with the nearly impossible task of taking care of the two of them, he grew increasingly frustrated with Martin’s inability to express himself. He had no patience for Martin’s attempts to talk, which in turn made Martin shut down, and their relationship grew strained and volatile. Their friends could only watch helplessly and try to support each one of them individually.
It eventually became difficult for Henk to maintain an illusion of well-being. His pain was increasing and it was exhausting for him to dress and clean himself. Martin was burdened by the knowledge that his stroke prevented Henk from moving forward with his plans. One night over dinner, Martin made a concerted effort to tell Henk something important. He wanted all of us to know that he did not want Henk to worry about him. He would be fine. Henk must do what he needed to do. It was a long and painfully slow speech, with everyone chiming in to translate every stammered word. When it was over, we were clear that he was releasing Henk from any obligation. We promised Henk that we would look after Martin. Henk sat deep in thought for a moment and then decided it was time to talk to his doctor.
We had discussed Henk’s wishes many times with his Kaiser doctor, who had assured Henk that when the time came, he would be in the best of hands. Now was the time. Henk was referred to the Kaiser Palliative Care program and was enrolled in home hospice in October 2018. For the next few months, a hospice nurse visited Henk every other week. The hospice arranged for meal deliveries, a hospice aide assisted Henk with showering and shaving, and a social worker helped them navigate the stress on their relationship. Henk set a date, then another, then another. The final date was an ever-moving destination; Martin’s birthday, their anniversary, a last visit from friends in Holland. He just needed to get past those events, then he would be ready.
As a hospice nurse, I have often seen the psychological benefits of having a choice to end one’s life. Pain becomes easier to tolerate and obstacles become easier to navigate when a person feels that they can choose to end the suffering. That is the reason many people who register for medical aid in dying never follow through with the plan of taking the medications, and end up dying naturally. But Martin was experiencing severe anticipatory grief that became more evident each time the date was postponed. The hospice social worker reassured him that it was normal, but I could see how it was taxing him. He wanted to have every possible moment together with Henk, who had become a more kind and patient man with the support from hospice. But he was also worried and confused about a future of living alone. I knew he was wracked with guilt for wishing that the whole thing would be over soon.
In December, when Henk set the date for January 15th, we knew he was certain of his decision from the way he instantly seemed relieved and lighthearted. He started to treat Martin with more sweetness and tolerance. He seemed more relaxed and at ease. He completed his final funeral arrangements. During his last month, their relationship was full of love, laughter and tenderness, like it had been when we first met them. We once again saw Henk’s mischievousness as he and Martin bantered, using few words but lots of gesturing and eye-rolling that made us all laugh.
Henk followed the protocol of having two doctors certify that he was “appropriately” terminal, and then had his follow-up interview two weeks later to make sure he remained certain of his decision. The medicine was delivered to their home by the Kaiser pharmacy. We looked over the instructions on how to mix and drink the cocktail. Now it was becoming real.
Henk’s brother and sister-in-law needed to be told. They had expressed confusion and doubt when Henk started on hospice. They had no idea of the extent of his illness, since Henk always had presented well when they talked or visited. His sister-in-law wrote me an email expressing her concern that people who commit suicide are stuck in purgatory forever. When I called her to invite them to Henk’s neighborhood goodbye party, she promised they would come. Even if she had a different belief system than Henk, they loved him and would support his wishes.
Henk arrived to the celebration of his life in our house dressed for the occasion. He wore a black beret with a red cardinal feather, his red felt slippers, and his trademark yellow wool jacket. The neighbors brought food and wine, and in spite of the gravity of the occasion, the mood was celebratory. Henk was not eating any of the treats and barely touched his wine, but he was fully engaged in the conversations he had with each person. Martin hung on his every word and didn’t stray from his side.
We had arranged our chairs in a circle in the living room, and we offered each guest a glass of aquavit when they arrived, as is the European custom for special occasions. Each person took a turn offering a gift or a poem and saying a few words of gratitude and love. Someone gave Henk a small wooden box with a redwood twig and a tiny rainbow flag that he promised to keep with him to be cremated. Our neighborhood jazz singer sang a spirited version of “Hit the Road Jack” while we all cheered. When it was his brother and sister-in-law’s turn to speak, they expressed their gratitude for the community encircling Henk and let him know that they completely supported his decision. I could tell that their speech left both Henk and Martin with a great sense of relief. The party felt deeply intimate, and when it was over, each person received a hug from Henk, making even the tough Monte Rio crowd cry.
January 15th, 2019
7 p.m.
Martin opens a bottle of champagne and we make one last toast before Henk gets into the hospital bed in his bedroom. He wants to be naked, and as he climbs into bed, we finally get to see his infamous snake tattoo coiling from his waist downward, which makes us laugh. I tuck pillows behind his head so he can sit up comfortably. Tom goes into the kitchen to blend the prefilled medication bottle with water. The cocktail must be drunk within a few minutes or it turns into a sludge too thick to swallow. We all hold our breath when Henk brings the cocktail to his lips. The choking episode in the restaurant has made it clear that his window of being able to swallow the medications is closing. We have been warned that the cocktail tastes horrible, but he is able to drink the whole concoction without a break and without choking. We let out an audible sigh of relief, and Henk gives us his last impish smile. “That was easy!” he says, downing one last mouthful of cognac, before leaning back in the bed. Tom and I take turns kissing him and whispering our goodbyes. We leave Martin sitting at the bedside. I am deeply moved, but calm and happy for Henk. It is perfect.
Tom and I sit in the living room, waiting. We can hear Martin humming “Silent Night” over and over, broken only with an intermittent sob. After half an hour, I slip into the bedroom to check on them. Henk does not appear to be breathing, and looks like he is sleeping peacefully. Martin doesn’t notice me, and I quietly retreat. I sit with Tom holding hands in the dark while Martin continues to sing. After an hour, there is silence. We steal into the room, finding him sitting quietly next to Henk’s cold body. He is caressing his hand, tears running down his face. He gestures to us that there had been no struggle, that Henk had taken a few deep breaths then stopped breathing. We all hug, hold each other tightly and let the tears flow.
When I call hospice, I let them know that I am a nurse and can pronounce his time of death at 8:30 p.m. We call their friend Lynn, who has been waiting in her home. She comes over right away, carrying a large bouquet of yellow roses. Martin pours cognac shots. We laugh and cry while sharing the events of Henk’s last day with Lynn. Martin asks me to call the mortuary, and they let us know they can be there in a few hours. We sit by candlelight and share stories until they arrive. We tell the two young men that it was Henk’s wish to go naked from this world when they ask what he will be wearing. They are respectful and polite as they gently lift his body onto the gurney. We tuck the little redwood box under his arm. Lynn and I prepare bowls of rose petals so we can sprinkle him with flowers as they wheel him from the house. We watch the petals swirl in the wind long after they are gone. Martin seems calm and resolved. Tom departs for home, but Lynn and I don’t want to leave. The home feels like a sanctuary. Before we fall asleep in the guest room, we can hear Martin softly crying. There is nothing we can say to comfort him.
Epilogue
That October on Martin’s birthday, we take a road trip to Julia Pfeiffer State Park to spread Henk’s ashes. This magnificent beach, tucked into the Big Sur coastal range, was a place close to Henk’s heart. We meet up with Henk’s friends and family, a small group of people who barely know each other but who all loved him. The tide is coming in as Martin leads us around an outcropping to the end of the beach where no one can see us and where Henk used to sunbathe in the nude. As the tide nibbles at our feet, we each grab a handful of his ashes from the cardboard urn and throw them up in the air. The photos from that day capture crazy patterns of colors and shapes as the ashes fly into the ocean. One photo shows Martin connected to a life-size spirit made of ash, dancing in the wind. The sun sends its golden fingers through the arch of a large ocean boulder as we head back to our cars. We stop at a Mexican restaurant to eat, and I buy a shot of cognac to place on their Halloween altar next to the memorial card with the photo of Henk. I know he would have appreciated the gesture.
Hanne Jensen is a retired hospice nurse, who uses her experience and knowledge to guide friends through the medical system, and help support them when they are near the end of their lives. She worked for years with the Zen Hospice Project in San Francisco, where she learned from volunteers the importance of sitting at the bedside and listening deeply. She was born and raised in Denmark, lived on a kibbutz in Israel and gave birth to twins in the jungle of Brazil. She is intimately familiar with Death, which took her parents, sister and husband, all at a young age. Life has taught her that we may only have today, so we need to be mindful of each moment of joy.