good aging/good death


Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

— Dylan Thomas

I have witnessed only two deaths. They were not good. My mother was whisked off against her wishes to die in a hospital and to be subject to an unnecessary autopsy she had been strongly against. We all gathered ’round to witness her struggle, her laborious gasping for yet another breath. I did not have a sense that giving her extra oxygen through her nostrils eased her passing. (This had been the sole reason my father chose to remove her from our home where she wished to die. Dying people have difficulties breathing. Duh.)

I described the recent death of my father in the previous post. It was a horrible experience for me, and infinitely more horrible for him. I would not wish it on my worst enemy. Trusting the system, or for those with caring children, trusting that they will somehow manage to give you the good death we all deep down hope for… is foolish. The only person I know who had a good death was my grandmother. Still well, she dozed off one afternoon while her daughter, my aunt, was puttering in the kitchen nearby. And then she was gone. A lucky woman. But one can hardly bet on such luck.

Those experiences jolted me into a close examination of my own wishes and eventual options. I wrote a while back about ecologically sane disposal of the body. Since then, my final choice has become clear. I walk away. If a few of my remains are found — and I would be delighted to become food for one of the noble beasts, cougars or vultures if in America, and jackals or bears if in Europe — then I want them wrapped in a simple shroud, placed in a shallow grave lined with compost, with an apple tree planted over me. This of course goes against many laws in many places, but discreet action on private land remains a viable option everywhere. (There is yet another way, much simpler. Swimming out into the ocean. But I’d rather grow into an apple than a jellyfish.:)

Or perhaps by then there will be orchard cemeteries, and if I should have the misfortune to die in bed, that too would be lovely, my body nurturing a fruit tree the living could come and enjoy. And for a funeral? A simple horse-drawn cart, with a brass band playing the songs that sent generations of my ancestors to the next world, that would be the cherry on top.

I struggled mightily with the proper disposal of the dead, but it turns out that’s a simple problem. What about the dying itself? That’s where the real complexities enter in, and that’s where this insane world we live in makes things really difficult for those who would rather skip the usual: institutionalization, prolonged misery with one’s faculties radically diminished and one’s self-determination gone, often dying amidst strangers.

There are several issues that need thinking out, well prior to one’s actual need. Pain medications in an age of moral panics about certain drugs. Reliable lethal doses and access. And then, the most difficult one of them all: how to handle the fear and existential dread that falls upon those whose mortality suddenly ceases to be, um, theoretical. When I was told twelve years ago that I was dying, I was not only grief-stricken, and maddened by the rude and callous way the doctor handled the situation, but I also suffered from the realization that I was completely unprepared for… well, for what I am now calling the good death. I did have the time. I had no resources. I called the Hemlock Society for advice. They told me that the hospice folks leave plenty of morphine behind as they care for you. This is, I suspect, no longer true. Well. As it turned out, I used the time the doctor opined should be taken up to set my affairs in order to save my life instead. But that is another story, and another post.

So I was given a second chance for a rethink. While I believe that suicide is profoundly wrong for reasons too numerous to mention, the idea offers itself that to slightly speed the scythe that is already swooping down… calling it suicide seems a misnomer. It’s more of the last act of exercising the gift of choosing we were given at our birth as human beings. Many dying people refuse to eat — and nobody calls it suicide. (But really, isn’t starving to death, well, a somewhat sub-optimal way to go? Just sayin’….) If it is a kindness to ease the suffering of animals, why must humans endure the worst, at the mercy of often unmerciful happenstance? And being childless, I cannot console myself with idyllic pictures of a loving family gathering to say their goodbyes. It seems to me that when one’s life is done, and all that remains is waiting for the grim end, the kindest thing for all concerned is to make those last months as grimless and meaningful as possible.

I have been reading Michael Pollan’s latest: How to Change Your Mind. It follows his adventures with certain currently-forbidden substances (all hallucinogens, in his case) that he missed out on as a young man. One of the things the book describes are the scientific experiments, quite well corroborated, that demonstrate how the existential dread of dying can be substantially eased or eliminated by guided psychedelic experiences, enabling the person to make a spiritual turning that reframes the death that is coming. I remember when a dear friend was slowly dying of recurrent ovarian cancer — her last year spent being abused by one failing chemo after another, then the cold announcement from the doctor, and then the endless waiting… waiting… waiting… lying in front of television, resentful of the cruel blow of fate, and of death tarrying so. Bitter, too, against the Catholic faith she felt had let her down. She could have used help. But we were clueless.

Why not, instead, refuse heroic measures that swell the GDP with their false “palliative” promises and opt for experiences that bring one’s last days full circle into the meaning of it all, in the largest possible sense? This intimation of meaning which we can only guess at, but which is, experientially, within reach? For me, roaming the wildish lands and communing with critters (human and non) I have loved all my life would come first. And second, I would wish to have available to me all the substances given to us by God-Cosmos-Gaia exactly for the purpose of easing our pain, experiencing parting pleasures, expressing the love we feel without the usual restraint, seeing the meaning of our life with fresh eyes, and finding strength to face the beckoning transformation with grace.

Which leads me off on an exploration.

  • What are the best ways to deal with the pain that often accompanies one’s last months– and which, in its infinite unwisdom, this culture stigmatizes and prohibits — allowing you to walk into the proverbial hills despite your bad back and your bum ankle or the cancer gnawing at your insides? When my mother was dying, my father — being in the cancer research business — pulled some strings to obtain for her what in those days was the most effective way to deal with severe pain. This Brompton’s Cocktail (then commonly available behind the Iron Curtain) was made up of morphine, cocaine, heroin and alcohol. It is still illegal today. The mix was adjusted to the needs of the patient — he or she could choose to be more or less alert, more or less social. Why do we put up with a medical system that puts politics above patients’ needs?!
  • What is the best way to speed the scythe as you can walk no more, and wait in the hills for the blessed scavengers to transform your death into new life? The internet is vague about the dosage (maybe 300 mg of morphine might be enough; but what about a person whose previous months had included plenty of pain medication?). We need expert guides who can advise. And we need doctors who will allow us to build up a cache for when the day comes, well in advance. I think I will mix mine into creme brulee…
  • And finally, what is the best way to use those divine substances that grant us the mercy and vision that in normal consciousness would likely be unreachable? The peace beyond understanding. The rightness of Being. The rightness of Death. The hope for another adventure awaiting in the beyond. The deep gladness that one’s death serves life. A whole new gestalt in which the universe opens its arms to you and welcomes you home. This, as I understand it, the new generation of psychedelic researchers are focusing on. But they need not stop there! How about drugs given not to quell pain, but to suffuse with pleasure a body that no longer can do it on its own? What about pills or herbs that would bring happy, vivid dreams? What about hypnosis that would help the person relive the most meaningful days of their life?

If I am granted the foresight and the knowledge that the time has come, I will walk away into the wilderness to offer my body to the living. That too will require preparation and scouting out, depending on the season and my strength. I suspect it will take more than just putting on a backpack and heading west into the Rockies, as I had naively imagined. Maybe an old cabin might come in handy. After all, it could be winter. The very last adventure of this earthly life ought to be grand, don’t you think?

And when I am gone, the friends I have left behind will shield their eyes when a vulture or a raven flies overhead, and wonder if I am flying along.

annies home: Turkey Vulture

 

 

 

A few years back, there went by a news story about an event in Holland. Apparently, the Dutch have decided to… is there a good way to say this?… to kill their elderly. The human being in question — a lady with Alzheimer’s — apparently had her wits about her when the doctor tried to administer the lethal injection and fought back with alacrity. Then, the doctor asked the family members to hold her down. Then, he put her down like a sick dog. I was shocked. I remember being glad that this sort of thing does not go on in America.

I took care of my aged father for several years. He was relatively well, though his mind was sometimes better and sometimes worse. Living with him was very trying, because — and this was a lifelong pattern with him — he was a personality disordered man. I will not describe the scenes that sometimes went on between us. I will just mention that I had a dear friend nearby who regularly rescued me and let me stay there while my father raged and carried on. The last year of his life he suffered a fall, but recovered well, and his ct scans showed a healthy 91-year-old.

One evening, my father was unusually talkative. We discussed his future, and whether he would be willing to give assisted living a try. I was surprised and glad, because he rarely talked to me, and because we carried on a good discussion without his use of hearing aids. A hopeful sign, I thought! We went to bed agreeing to speak more on the morrow.

I woke at 5 am with him banging on my door, yelling, incoherent. I opened — a mistake — and when he lunged against me, trying to keep the door open, he broke my arm. I called the cops who quieted him down. Then I went to ER. When I came home and prepared my father’s breakfast and pills, he began to stalk me, telling me he wanted me out this instant. After giving him the pills, I locked myself in the bedroom. All was quiet for a few hours, then the yelling and banging on my door began. The door shook in its frame.

I called the cops again. They spent about three hours here, trying to calm him down, getting abused in turn. My father even struggled with them physically — I don’t know where he found the energy. I confessed to them I was worried that he was going to try to poison me, and they advised me to keep all my own food in the bedroom, which seemed an insane piece of advice. Is this how I should live? Eventually, they realized that he was past any signposts of sanity, called the medics, slapped the Baker Act on him (“dangerous to self and others”) and took him to the hospital, where my father tried to kick and hit personnel. They gave him some anti-psychotics that made him worse. Eventually, with great difficulty, they found him a bed in a psychiatric institution.

And this is where the system began to play me. I was, of course, a babe in the woods, and as the situation unfolded, I spent my days on the phone, trying to figure out what to do from one day to the next. And I toured many institutions that take in the aged. My father’s insurance would have paid 100% of the costs of him being in the mental hospital. But after zonking him hard with several different anti-psychotics, they claimed he was just fine now (after a week!) and I should make other arrangements. I had him transferred to assisted living — a very nice place as such places go. They did not tell me he had developed bed sores. (My father refused to move while he was there, making them believe that he could not — so I can’t really say it was all their poor care that brought those sores about.)

Was he well? Of course not. He shrieked all the way down from the hospital to the assisted living home. When there, my father — who you remember “could not move at all” in the hospital, started running around the assisted living place, barging into people’s rooms, and that even without his usual walker. He created such an upheaval that I was required to pay for round the clock aides to keep an eye on him. Eventually, we were able to ease off, and the home made arrangements with neighboring “memory care” unit (that’s where the Alzheimer’s people are) to take him during the day. He was also further dosed with anti-psychotics which nobody seemed to be able to adjust so that the crazies would stop but he could function.

Well, in the end, that arrangement fell apart, and he went back to the local hospital. There he lay zonked out of his mind, his sores getting worse, while they were trying to figure out what to do with him. There was some sort of an appeal to the state that took several weeks to resolve. Meanwhile, I was looking for a memory care place for him — and was lucky to find out near me, a small one that was run by a church, and people had individual attention. When the state declined the appeal, the church facility took him in. I was so glad then, full of hope that they would be able to get him off the drugs and back to being alive. It looked that way at first.

Then I ran into insurance problems. If my father had straight Medicare, the facility’s doctors and rehab people could look after him. But he had one of those HMO plans that demand the patient goes to certain doctors only. My BC/BS advisor went on vacation, the replacement was not able to get me either a competent doctor or a rehab person, and my father’s muscles went rapidly into permanent atrophy. When he came there, he was coherent, and was able to get up and have lunch at the common table. Within days, he was shrieking his head off, back on the nasty drugs, alone in his room. I came twice a day to check on him. He could still talk to me. I asked him if he was hungry or thirsty. He said no. Then he said: “I am afraid.” My father… whom I’ve never known to be afraid of anyone. That was the last thing he said.

The next day, as I was coming in, the director called me and told me I should talk to the hospice. This too was a shock. That day my father had refused all food (he actually crushed the spoon they were using to feed him some yogurt) and his message was clear. I was up till midnight making the arrangements, late Friday night.

The hospice got him a special soft bed, and took excellent care of his bed sores. They also got an attendant to be with him 24 hours a day. They made sure he was getting some water to wet his mouth, and eventually began to rub liquid morphine around his gums (though in my opinion, it took them excruciatingly long to get around to it).

My father died 6 days after the hospice took over. In three months, he went from a healthy albeit intermittently demented person to a corpse.

I came out of this ordeal with a case of PTSD, a frozen shoulder, and a lot of questions. I am writing this post to warn others. There were three problems with his care. 1) The anti-psychotics ruined his health. 2) The advice I was given was of the sort designed to “draw down” his assets (such a nice official phrase, eh?). He could have stayed in the psych unit until they stabilized him, at no cost to us. Instead, they lied to me. The assisted living home was motivated to go along with the lie, because they stood to profit by his monthly rent. And in the end, even the church place should have advised me that it looked like my father needed hospice, not moving to yet another institution. More money for them. (They did tell me, but after he had been moved, while assuring me it looked like they were wrong.) And 3), when I begged people to calm my father with opiates (which would have given him constipation but would not have turned him into a zombie) rather than zombifying anti-psychotics, they refused. Only the hospice can administer the opiates, they said. I had nowhere to turn.

So this is the way we kill the troublesome aged in America. The quiet ones — and I saw many during my sojourn through the institutions — lie in their chairs in front of the TV day in, day out, year in, year out. The hospice, btw, was free and excellent. Apparently, it is important in the United States to pour unlimited money into the dying. Why?

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