Life and Death

Well, I was going to do a heads or tails thing today - and maybe I'll do that too - but a young friend of mine posted something about an experience she had with a grieving colleague who, having just lost her mother to cancer announced basically that her husband had better not get sick because she wasn't watching anyone else die. What can one say in such a situation? What emotions does it bring up in us?

If we've never watched anyone die, it probably sounds just mean and selfish. Of course we couldn't leave someone we loved when they need us most. How could you even think it?

But Linda's post made think of some of the secret thoughts I have had on the subject of the dying, the ones my better self likes to pretend never made their way through my brain. But they did. My mother didn't die with something like the agony of cancer, but she died over the course of 15 slow, pain-filled years. We didn't have the best relationship, but I loved her with an almost agonized love because she wasn't very good at loving back. I probably loved my mother more than I have ever loved anyone - and I love with fierce and unrelenting loyalty - but I will admit here that there was more than one time in those 15 years of grim ups and downs when I wished she would die, wished she and my father and all of us could be released from our misery.

Does that make me cruel? At the time I thought maybe it did, but maybe time has made me a little wiser. I'm human and like most humans I dislike suffering, whether it's my own or that of someone I love. The first time I prayed that my mother would die was a month or two after her first break-down. She had wasted away in three months time from about 140 pounds down to less than 90 pounds. Her clothes were falling off her but she thought they were too small. She didn't recognize me, my brother and sister or her husband of over 50 years. And they told us they thought maybe she had cancer. She didn't but they thought she might. That was the first time I wished she'd die. I didn't want her to suffer. But to be honest, I didn't want me to suffer either. Luckily, I didn't get that wish. A variety of tortured treatments later, a somewhat diluted verision of my mother returned to us. Over the years she had several more break downs, a series of physical traumas, each time fading further and further from the person who was my "real" mother. I'd like to say that my first foolish prayer for her release taught me the wisdom or leaving such decisions to God. It didn't. I wished it for her, for me, for my father on more than one occasion. God in his/her infinite wisdom, paid no attention to me.

Did I really want my mother dead? No. I wanted the woman in pain to stop suffering. I wanted me to stop suffering. I wanted my REAL mother back and the lost, fragile imposter who didn't recognize me or who said cruel - even by my real mother's standards - things to me to go away.

I also wanted my mother to live. I was glad that I had more time with her, even if the mother who came back from that first break down was kind of a "mother light" version of the real thing. Each time she would have a set back she would come back like a paler clone of the original. I though of the recovered versions of her as my "shadow mothers." In some ways they were a lot nicer than the real thing, at least in the middle phase of her illnesses. At the end, she was pretty much all mean all the time - at least to me.

At around the same time my mother was truly dying, a relatively new friend of mine, someone I had met at a workshop, was dying of cancer. Both of Ronnie's parents had died with cancer. She had gone through it with them. She decided not to fight. She had done some chemo. She was bald and bloated. She looked awful. She looked like death. She gave up treatment and kept on smoking. It was scary to part of me to be around her. Many of her friends disappeared. Many were angry with her for giving up. I had to fight the impulse myself to tell her - who was living with the pain and the fear - "why don't you just try this... why don't you..." She was my age and she was dying and it was messy and grim. Ronnie, who died three days before my mother did, helped me to process my loss and I like to think I was able to help her. Right before the end, she started worrying that she was failing others, that she was "doing it wrong." I told her that it was her death and she couldn't do it wrong. It didn't belong to the rest of us, no matter what we thought or wanted.

We aren't very good at or comfortable with aging and death in this country (USA). It's untidy. We as a society don't even have enough compassion to make certain that everyone gets medical coverage, so it shouldn't surprise us that we don't have very good emotional support systems in place either. Too many of us treat illness like it's a crime people commit. We assign the job of dealing with it, of tending to the mess, to some unmarried daughter and we pretend it's a romantic duty and not - as it so often is - ugly and painful and physically, emotionally and financially as deadly to the caregiver as to the patient. We expect these poor caregivers smile through their pain and not complain. We ought to be ashamed of ourselves. We all ought to walk a mile or two in their shoes.

My father was the primary care-taker for my mother until she went into a nursing home for the last year of her life and he visited her there all day every day until he died 3 months before she did. I was his support. I spent almost every weekend with my parents for the last 15 years of their lives. Even that was profoundly draining. Unless we have done it, I don't think anyone understands how consuming care-giving is, how difficult it is to watch your mother or husband or wife waste away, stop recognizing you. When people lived in a world of extended families, this kind of care-giving was a shared responsibility... shared by the family and by communities. That was a much better system in my view. I hope our society will start to find our way back to a world of more practical compassion than the failed system we are operating under right now.

As usual, I have digressed from my main point. Even though part of me reacts with a touch of judgment to Linda's friend announcing that her husband is out of luck if he gets cancer, I admire her courage in saying it out loud, because she was just sharing very human feelings.

I'm hoping to die peacefully in my sleep. I have no kids who might be tempted to spend their precious lives tending to me if I veer any further into dementia than my natural every day state of craziness. If I did, I would hope that the needy, neurotic part of me who can't ever get enough love no matter what, would be over-ridden by the part of me that loves enough not to want anyone I care about to make that kind of sacrifice. Oh, I hope they'd visit me at the home from time to time, but mostly I'd hope they would live well and happy. Truth is, I'd probably want it both ways and they - if they existed - would probably have days they wished me young again and days they wished me dead. And that would be ok.