Dying

She was born in the penultimate year of World War I in a tranquil town in the south-west of Germany. She endured Inflation, Depression, the Third Reich, and World War II. After the war and in the early 50s she and her children lived through hunger and despair. Her husband was one of the last POWs to return from the Silence Camps in Siberia. She survived his death and, years later, the death of her son. Her last years had been difficult. Not being capable to move well, all motions, all daily work in the kitchen and around, were arduous. During this time of her life she never left home. She died one day after her 95th birthday. It later turned out it was the 17th anniversary of her husband’s death. She was a lovely and at the same time brave woman, with dignity and a deadpan humour. At times she missed someone to comfort her, but she rarely showed. She never complained.

She had been my landlady for about 23 years. We lived in the same house, on different floors. In her later years I often looked after her, did some shopping, or just sat with her and talked. She had a friend who would come once a week to clean her apartment, and an older man to look after her garden. The nursing service came twice a day to look after hygiene and medication.

Her son had lived in the same house for 10 years until he died of cancer in 2011. He had taken care of his mother, had looked after the house, managed the daily businesses with craftsmen, banks, authorities, or the daily shopping for himself and his mother.

After his death only a granddaughter remained, who lives in a town up north and who, due to her work, could be around only once in a while. It was this last year in my landlady’s life that I became far more involved in the daily care-giving and the maintenance work that had to be done in and around the house.

In 2012 she became too weak to care for herself. She attended a nursing home nearby, the one in which her late sister had spent her last years in the early 1970s. My landlady was to stay for a month, as insurance would cover short-term stays only once a year. As she settled in her room she nearly instantaneously dropped all her ambitions to care for herself. She wouldn’t eat as the food was too bad, she complained. In fact, she rather had problems to swallow and tried to avoid the pain. Neither would she drink. This month, in which I visited her daily, was often filled with polite negotiations, and sometimes she gave in. I started to bring her soup that I cooked at home, and she drank it with a straw, in the first days even with great pleasure. Later this also ebbed away. Nearly all of the time of her stay she didn’t eat or drink, only the soup or some juice I handed to her. We both knew it would be difficult back home and we were both relieved when her granddaughter hired a 24/7-nurse to be with her at home in her apartment. But even then my landlady wouldn’t resume eating. After nearly 9 weeks she passed away, her granddaughter, the nurse and me at her bedside.

This is all I want to tell about my landlady and the last weeks of her life. When you live such a long time with a neighbour, everything you tell about him or her feels awkwardly abbreviated and distorted. There is the mixture of reluctance to tell too many intimacies of a late life and the inability to do justice to a life that spanned 95 years and had seen more than most of us may face. So I rather speak about what went through my mind on dying, on care-giving, and the turbulences care-givers may face. But even then the following is more like a look through a kaleidoscope than a concise essay.

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from my timeline on twitter :

Sept. 12, 2012 :
She returned from dying by way of cursing ….

Sept. 14 :
There are times the soul has to keep doing its work in private w/o us seeing or understanding.

Sept. 14 :
Don’t be afraid to feel dull and dumb. It’s not time yet to understand.

Sept. 17 :
You want to save the world? Try this : Remember people’s name, greet them, ask how they’re doing. (E.g., staff in a nursing home ….)

Sept. 17 :
When feeding old people, it’s less about food but the attention and friendliness we give by means of the food we put into their mouth.

Sept. 17 :
Are old people really afraid of not having lived enough? Or rather not having loved enough? The hunger is not about action missed, but love.

Sept. 17 :
It’s amazing how in the harsh worlds of a nursing home or psychiatric ward people try to remain humane by offering me, the visitor, their dessert.

Sept. 17 :
Don’t reject the food offer of someone living in a nursing home or psychiatric ward. You’d reject their attempt to be humane & kind.

Sept. 18 :
The 5 stages of grief (E. Kübler-Ross, 1969) : denial, anger, bargaining, depression, acceptance – apply to helping & giving care as well.

Sept. 18 :
“Why me?” we scream not only in face of death and love lost, but also when being confronted w/ the task to help.

Sept. 18 :
“Why me?” – “If not me, who? If not now, when?” answers Commander Power-Ego. Accepting care-giving rather follows the muddy stages of grief.

Sept. 18 :
Commander Power-Ego – the part in us addicted to heroism.

Sept. 18 :
Feeding an old person at times comes w/ great laughter. This mixture of gratitude & waggishness makes the grin of both all the more beautiful.

Sept. 29 :
Tired. The old lady is back home. Waiting for the things to come. She asleep, me watching the full moon. A gentle evening.

Sept. 29 :
I wonder how humans could come up with the concept of perfection. Where does it stem from? Curious.

Sept. 29 :
Who needs perfection when there is gentleness?

Sept. 29 :
When there is trust, you don’t need to insist on harmony. ~ Sharon Levinson

Sept. 29 :
The old lady, not yet trusting John O’Dreams, tentatively puts a foot on the plank of his boat. The river is wide, the boatman to her service.

Oct. 12 :
Night falls on the house. The old lady, near death, tries to sleep. The neighbours keep playing their music loudly. Ego
is rude.

Oct. 16 :
From the other room the low murmur of the nurse talking via Skype. At the bedside of the old lady, nothing to be said, just holding hands.

*

*  The dignity in dying doesn’t depend on external factors like legalities, housing situation, high-tech medicine. These are rather exculpations. The dignity emerges when the care-givers can accept what happens and the dying person no longer needs to be brave or pose in order to shield the people around from agony and despair.

*  There seems to be a widespread sentiment I’d like to call “triage-mentality”. It occurs when relatives, care-givers and doctors talk about how much suffering a dying person should (or should not) endure. Most often it comes in the guise of humanism and morality – the urgent wish that the dying person shouldn’t suffer so much, that in order to curtail or stop the suffering one should stop the life-prolonging means like force-feeding, drip-feeding, the giving of medicine. Better, the sentiment goes, stop life-prolonging measures at all and let the person die “in peace”. Often this is the wish of the dying person herself. But when it comes to the stage of agony, when the dying person can no longer speak or signal her wishes, when moments of consciousness and awareness are precious, the urge to abbreviate the suffering becomes unbearable for the relatives and those around. But even then: How can you decide to “stop” a life that still is there, breathing, rattling? The triage-mentality thinks about what is the better in this situation, but it supposes it can treat a human person like some machine that can be switched on and off at will. The triage mentality uses the sentiment of reducing harm to commit the ultimate harm, it seems. People commit a triage because they cannot face the pain and suffering of the dying person.

*  Likewise the recommendation to draft a living will of how you’d like to be treated when you can no longer signal your wishes seems strange. As you don’t know what it’ll be like “there”, how can you decide what would be in your best interest or what “then” may be your most urgent wishes? You simply don’t know how it’ll be there. So how do you know for sure that in order to evade or end suffering you’ll rather prefer to die quickly, perhaps with the help of medical assistance? 

*  When we give care to a dying person, something peculiar may happen. After a time of grief, when it became obvious that nothing more can be done, the pain and grief in the care-givers vanish, and every encounter with the dying person becomes a moment of joy.

*  As the dying person more and more vanishes, the apartment changes. No longer does it breathe the person who has been living here, no longer is it the sitting person herself. The apartment becomes frail, then more and more neutral. The dying person leaves.

*  If the dying person is of religious faith, don’t wait too long to call the priest, the rabbi, the imam for the last services. The person takes comfort from it when s/he can attend the service consciously. Delaying it too long may rip her off this sustenance. The main reason we wait too long seems to be that we as care-givers don’t feel equipped or ready to face the moment all, the dying person and everyone else, are in. But it is not about us, it is about the dying person.

*  When a relative of yours dies, it can create a kind of undertow that urges you to go with that relative, to follow him or her. We should keep that in mind in case a dying person has relatives with suicidal tendencies.

*  It has happened twice in my life that when a beloved relative died I had this strange feeling as if a kind of layer detached from my being and hovered right above me. For a short while something hovered above me, somewhat like the peculiar way the beloved person had been or had been to me, his or her specific traits. It felt as if I could see what character trait of mine it was this person had bestowed on me, to become a part of me, and that it had its origin in this other person. At times it was as distinct as an odour, or as the radiance of the presence of a nearby person. Then the layer sunk back and what the other person had given to me and to my soul became indistinguishable and invisible again. What I saw in these moments was what the other person had given to my soul, what of them had become me, and now lives on in me as the person herself has left long ago.

*  The pain and grief one feels about the dying person is partially a result of not having spent enough time with the person during her agony in order to let this phase of life likewise sink into us. If we visit the person only sporadically, we’ll see the stages of decay far more plainly, and the intensity of the overt decay will push us away. We will leave and presumably not return because we cannot bear the pain. Rather not to feel it, we leave the dying alone. This is sad, even if understandable. And it misses what grows underneath all this decay.

*  In the last months of my siblings’ father’s live, after chemotherapy didn’t alleviate his cancer, he was in a bad shape. Many people came to bid farewell. At times I was rather angry about how many of them were at his side in the hospital, putting a strain on him, seemingly more interested in their own feelings than in his well-being. But at the same time I was amazed by how many people from near and afar, from his present circle of friends as well as from earlier times, joined forces and spirit. The timidity with which they confronted his cancer was very touching. And watching this, questions arose: About whom is this dying at all? Who dies? What is this cancer doing? Is it only bad things this cancer does, given how many people show and re-connect? Is this dying really just something that takes place only “in” him? Doesn’t it simultaneously occur “in” all the people around, at his bedside in hospital as well as in places far away? It seemed as if the cancer wasn’t just confined to him, to the one person in which it “occurred”. Rather, as many people were involved, this cancer looked like a way how doors open and worlds connect. This became obvious in how people, friends, opened up, reached out and across and connected with each other as they were confronted with the friend’s illness in late-term state. Meetings took place that had been unthinkable even weeks before. So we may see cancer as the sick person’s individual fate and decay. But likewise we may see it as something that chooses a certain person as a “place” to occur and to move something that otherwise wouldn’t or couldn’t be moved. Cancer may be a way of how people may be pushed to become a community: even as it kills the person in which it resides, it doesn’t solely “mean” this person. It “means” all around as well. As we live in cruel times, the rise in the cancer rates in the last 50 years may likewise be understood as the soul’s increasing urge to open doors and to re-connect people. The “place” of the disease (the sick person) is not tantamount to who the disease tries to “address”.

*  Persons are made of other persons, like a flock of birds. We live with the voices of all others around us, be it at the same time or through times, be it at one place or many. If we are not in conversations with others, then we are in conversations with our voices “within”. Because we are a We made of the people we inherit and happen to be, the dying of them is a dying of ourselves. And as we hardly can distinguish life from world, the dying of a person nearby is the death of a world in and around us. That, on the other hand, offers huge freedom. It may help to “re-grow”. As the dead person sinks to the bottom of our watery selves, we may gain new agility to swim and new courses to follow. Death makes room for something new in us, and it is this falling apart of worlds that shows us how intricately the world is made of soul, of soul that matters.

*  Shortly after I have died I’d like to have candles lit in all window benches of my house, and being blown out after two or three hours. As the house is not the mirror of the soul but its enlargement, the candles in the window give to the world a bit of the light, passing over some of it that has accompanied me, was with me, had been given to me. From above, from afar, and all way through.

 

I’d like to thank @Livable4All for her gentle support in strenuous times.

 

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