Nobody told me about death

It was such a surreal time when my mom was dying. Nothing in my life had prepared before it, and nobody helped me through it. It was strange for her to, of course, so she was not able to help. The person I had always looked to for guidance was looking to me for strength.

The hospice social worker read off a set list questions – “What do you want to do?” “What life goals have you not achieved?” I guess the idea was to try to do some of these things before she died. It all seemed cruel and thoughtless. She couldn’t do these things – not enough energy anymore, or time. Visit England, her birthplace? Not possible. See me graduate / get married / be an adult? Not possible. 53 is a young death, and all preventable. She signed her death certificate the day she started smoking. She tried to quit but didn’t stick with it for many reasons. Something stressful would happen. She was bored. Dad wouldn’t quit.

Milton suggested that Adam ate the apple because Eve had, and he didn’t want her to be alone in being banished from the garden. He sacrificed his own happiness to be with her, to support her. Is this part of it? Or was it just a simple ugly habit, an addiction?

Near the end hospice sent over an aide they’d hired from a home healthcare company. She was a skinny black woman of limited education. She browsed our bookshelves and pointed out those that she felt were expensive. They weren’t – we often found large hardback photo books on the remainder table for under $10. We collected them and savored them, as the library in our city was small, and far away. After she said this I felt obliged to stay in the room with her all the time, which defeated the purpose of having her there. The point was to have a trained person with my Mom so I could go get errands done, or simply have some time off from the endless task of tending her by myself.

The aide also wanted to use Vaseline to swab my Mom’s mouth, saying that dying people’s mouths get dry. They do, but Vaseline isn’t the answer. That is weird. “Would you want Vaseline in your mouth?” I asked her. No answer. She couldn’t empathize.

She also had a bit of note paper in a folder she brought in. She’d written “The devil is real” and “You’re going to die!!!” on it. I asked her about it. She said that sometimes the people she tended would “act up” and she’d shove this in their faces to quiet them. I called hospice and said she never needed to tend my mother or anyone else ever again. They said she was leaving that company to go tend people who were profoundly mentally and physically handicapped. I replied that “She does not need to be around anyone who cannot defend themselves”. They had no answer, it was out of their hands they said. She wasn’t hired by them, it was through another company.

Around the same time a lady named Bernice was there. She went to the Episcopal Church that Father Rainsford had visited at and preached. He used Mom’s story in a sermon. He did not ask if he could, but that is another story. Bernice felt moved by the story to ask if she could help since I was tending Mom all by myself. She helped watch the watcher and later went, by my suggestion, to get hoagies from Ankar’s. She’d never had them before. They are my family’s comfort food. Submarine sandwiches don’t even come close.

I remember how weird it was when Father Rainsford came over towards the end and did last rights. That made it really real. He called out the page in the Book of Common Prayer. I was one I’d never seen before, and I scanned the title of the section. It is page 462 if you are interested, and it is titled “Litany at the Time of Death”. I’d not asked him to do it, but he knew it was time. I wasn’t ready for it. She died maybe a week later. She’d not talked for a week before this, but chimed in when we recited the Lord’s Prayer.

People who are dying see things that others don’t. Mom asked about that man who was sitting there, pointing towards the couch. No man had been in the house for days at that point.

People who are dying do unusual things. She was picking at her bedclothes. She took all the Kleenex out of a box, one by one. She filled in random letters in the crossword puzzle she was working on. Late one night she had nightmares, visions. She was quite anxious, calling out. I could not calm her. I called hospice, who sent out a nurse who gave her more anti-anxiety medicine. He said that people tended to die the way they lived. Since Mom had smoked a cigarette every 20 minutes of her adult life, she was quite unable to calm herself without chemical intervention.

Months earlier she’d finally came to understand about my pot usage at the time. She refused to try it, afraid that the doctor would find out through blood tests. What would they do – arrest a dying woman? Refuse further treatment? If she had tried it she would have been happier, more at peace, better able to process her feelings. It takes the edge off, and it is hard to think when life is all edges and angles. Plus she might have not lost much weight since she would have been hungry, and pot is also an anti-emetic. The wasting away from throwing up from chemotherapy drugs is awful. The “cure” is sometimes worse than the disease. Surely there has to be a better way to heal than by putting poison into people’s veins. It makes no sense at all.

The neighbors provided food. The priest visited. Hospice nurses and volunteers came. It still wasn’t enough, and still none of them told me what to expect. Hospice provided a page of “things that might happen” but it wasn’t enough. I needed someone to sit down with me and let me know that this crazy event that was happening was normal, and here’s what to do and not do.

Nobody told me what to expect. Nobody counseled me. Nobody thought to care for or about me, the 25-year-old child, not yet an adult, he was tending her mother, her friend, her roommate, alone and without training. I would suspect it is just as hard to do this at 50, but at least then you’ve had a bit more life experience to call upon.

At the end my aunt came, even though we were against it because of letters that she had written my Dad, saying that Mom would be better off dead. There was no one else I could invite to stay over to help me. Friends left me. In spite of my years of church involvement, church members never showed. Did they know? This is one of the disadvantages of being in a large congregation.

If I was pregnant, for instance, I suspect that someone would tell me what to expect, how to handle this. There are books at least. But people don’t talk about death. It is the elephant in the room. Perhaps they don’t know what to say? Perhaps I appeared to be handling it so well that they thought I knew. It was a façade, a front. In the back behind the scenes, I was alone, made more so by the fact that my counselor, my support, my friend, my roommate was leaving me, fading away to nothing right before my eyes.

Death is not a failure.

We need to turn around our view of death in the society. Death isn’t a failure. Death is a person transitioning from one level of existence to another. They are graduating. They have completed their mission here on earth and are now moving on to their next assignment.

In the same way that we gather together when someone is being born, we should gather together with the same joy and excitement when someone is passing on. When someone is being born we don’t even know who is being born. But when someone is dying we know who it is. We get to celebrate all that we have done with her or him together and that we were blessed with the opportunity to know her or him and share a little bit of our lives together.

I find it disturbing that the dying process is not taught in nursing school. I find it odd that a separate organization generally known as “hospice” had to come into existence to assist people and their families with death. Death is a fact of life. If you are alive then you will die. But we’ve isolated ourselves from this knowledge to the point that death seems to be something that happens to someone else. The medical institution treats death as a sign that their efforts have failed – they have not cured the disease.

What hospice is and isn’t

I like the idea of hospice. They are trained for care, not cure. They help a person die a natural death, rather than unnecessarily prolonging life. They don’t do assisted suicide, but they don’t do feeding tubes and ventilators either.

But I don’t like it in a way. I don’t like that there has to be a division between them and the rest of the medical profession.

I have a friend who trained to be a nurse. She learned nothing about what the dying process is – what the signs are, what is normal, what to do. She’s asking me what the signs are, what happens.

There is also a misunderstanding about what hospice does. When my Mom was dying, I assumed that the very infrequent visits from the hospice team were because we were on Tenncare. I was used to us getting the short end of the stick, the last of the loaf. I was used to having to sit in clinics for hours for treatment for everything. So seeing a nurse for about thirty minutes every day seemed par for the course. Having a “bank” of time for a sitter seemed normal too. There was a total of 20 hours I could use, so I had to be careful how I budgeted it.

Turns out that is the way it goes. From reading up more, and from the stories from my mother-in-law having hospice care, we weren’t unusual.

When you call hospice, they are there to help, but the family members are the primary caregivers. They are drafted into service, shanghaied even. They do most of it. The nurses come by to change medicine if necessary. The rest of everything? That is on you.

They don’t sit with the patient 24 hours a day until they die. They don’t check them into a specialized hospital and care for them. It is on the family to do the heavy lifting, literally and metaphorically.

They might provide a handbook that helps. If you are lucky, all the pages are there. Sometimes they aren’t. Fortunately, these days, you can look up “Signs of death” online and get a lot of helpful advice.

Ideally, all nurses and doctors would understand that death isn’t something to be feared. It is a natural part of life. It is only scary if it is unknown – like everything else. Fear comes from ignorance – learn as much as you can and you’ll not be afraid.