“Don’t do it,” said a doctor-friend when I told her I wanted to bring my terminally ill son home. I had no idea how exhausting and emotionally draining this caring business is, she warned. Honestly, I’d be much better off leaving him in hospital till the end, and anyway, I should think of myself and the rest of the family. They need a mother, too.
So I thought of myself, of my son, and the rest of the family. And I brought him home. There wasn’t much more to consider. That he wouldn’t have to die in hospital was a promise we made him when he was initially diagnosed with cancer. Only then we didn’t, couldn’t, believe it would actually happen to our child.
The first encounter with death on the ward had opened my eyes. Two nurses were pushing a bed – its human occupant covered with a white sheet – toward the lift. One was fighting to keep back the tears. The other opted for a life-goes-on attitude.
No sooner had the lift shaft swallowed them up than the cleaner stormed into the empty room. Personal possessions found their way into a black, plastic bin liner, marked with a sticky label for the relatives. The still perky daffodils in the uniform hospital vase stood no chance. They had to take leave of life just like their former owner and disappeared headfirst into a blue garbage sack. With a single, nonchalant move of her arm, a nurse wiped out the name of the deceased on the station’s wall chart. An hour later, the next doomed patient moved into the room, which reeked of disinfectant.
My son should fare better. Not even the well-meant offer of a chic two-bed room with all the “mod cons” could make me change my mind.
* * * * *
True, the cellar door refused to shut properly. That was because of the tube. From a ventilator resembling a futuristic vacuum cleaner, it snaked its way up the stairs, through the living room door, along the wall, behind the back of the rented hospital bed, and up to the oxygen mask on my son’s face. If you want to breathe, you need air. But the mechanical production of air was earsplitting, which is why the appliance was banned to the basement.
Of course, he would have felt happier lying in his own room upstairs. He yearned for privacy and peace, the right to decide what should happen to him (or rather, what should not happen to him). But the tiny children’s bedroom in our row house had not been designed with an intensive care unit in mind.
We compromised by agreeing to adapt the living room so that it would suit the requirements of the bedridden patient, but also leave enough space for both medical equipment and family life.
The bulky hospital bed we positioned comfortably in a corner. At the foot end, a small engine purred continuously as it pumped and deflated the pockets of the air mattress. The infusion stand was at the other end. It dispensed liters of saline solution and glucose, day in, day out. Over the bed hung the innocent-looking morphine pump. Non-stop, 24 hours a day, it worked to alleviate the otherwise excruciating pain of bone cancer.
Next to this forest of machines we put our sofa and our chairs. Everywhere within sight of the bed were floral greetings from our friends, and, even from his enforced horizontal position, my son could look out of the window and see the sun and the snowcapped trees in the garden and watch the blackbirds searching for food.
The hospital supplied a home care nurse. He brought daily supplies to replace the used infusion bottles, ordered more oxygen, fetched the medicine from the chemist’s, and, most importantly, monitored the morphine pump. Everything else we did ourselves.
The technical challenges were overcome. But how do you feel as you wait for your child to die?
* * * * *
The last five weeks were long. Five weeks, when every hour, every minute becomes precious. My son’s unwavering decision to refuse any further attempts at treatment was difficult to accept in the beginning. Maybe something could still lead to a last minute miracle? Perhaps he could still win just a little more time on earth? He was wiser than us. We learnt to take our cue from him.
Once we were free of the hospital, the tension and pressure began to fall away. Even I now understood that there would be no reprieve. That any treatment would have been both useless and inhuman. That he was going to die. And that he wanted to go – and could go. Because I could not make him well again, I felt helpless. But being able to support him in his wish to die in the familiarity of his own home with his family around him was a great consolation.
The last days were suddenly free of fear. Time was incredibly valuable. All the crushing worries, torments, and pain of the preceding months simply floated away. They no longer touched us. Our daily routine relaxed. He didn’t want the dressing on his thin arm changed today? Fine. Let’s do it tomorrow. Or not at all. It didn’t matter any more.
Instead we had lots of time to exchange memories, to be close together, undisturbed by the noise and inevitably hectic atmosphere of a hospital ward. The metastases in his lungs made speaking difficult. Eating and drinking were things of the past. Yet we felt good. We treated ourselves to one last picnic: me with a cheese roll and he with a fresh bottle of glucose. We giggled quietly.
During the last nights I slept next to him on the floor on a mattress. Until then, he had wished to be alone. Now that he was too weak to operate his bed’s remote control, he was afraid of being on his own in the dark.
Both of us – mother and father – camped on the living room floor that final night. His brother and sister waited upstairs. So when the end came, we could hardly have asked for a better one. We were all with him and could let him go peacefully, gently, and with great dignity.
I am glad that I did it.
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