Something Left to Lose.

One of the best friends I have ever had is dying. These words seem to colour everything I do, everything I think, make me numb, swirl a cold, opaque fog around everything I usually enjoy. She is dying and there is nothing - nothing - that I can do. Nothing that will change the fact. Nothing that will make things easier for her. Nothing.

Her doctor has said that three months will be a long time for her to live. She has already gone a long way away from us. Some days she will not talk to anyone, sometimes she cannot hold a cup, keep her balance, focus her eyes. Other times she becomes something like her old, feisty self. She checked herself out of her palliative care room at the hospital last week and went back to her seniors' residence. She is 'doing better', her brother says, the last little while. I think she is angry and the anger is carrying her - she does not want to be a helpless lump in a hospital bed any longer than she has to be. She does not want her daughters' anxious hovering, trying to do for her what little she can still do for herself. She doesn't want anyone's sympathy or pity. She's still the fighter she has always been, even when so much else is lost.

Her daughters are trying so hard to help. I remember my mother's last illness and how hard I fought, coaxing a little food into her, planning to make her hair look better, blinding myself to how fast she was fading. One night my husband said to me 'She's dying, Mary. You have to face it.' How stunning a blow those words were as I did have to realise that I was failing. I couldn't keep her. Now I watch my friend's daughters, her brother, her mother (so fragile herself) trying to come to terms with the same hard truth. I see her daughters fighting, as I fought, to bring her back, just a little, to comb her hair, get her attention, support her. I remember the bewilderment. The stubborn denial. The pain.

The words of 'Bobby McGee' keep running through my head. 'Freedom's just another word for nothing left to lose.' I've learned that when the person you love has gone, when you have nothing left to lose, the pain is different and finally it too fades to a dry, sealed scar. You are free of concern, of obligation; you also lose the connection although not the love. But it isn't the same love. It's a bowl of pot pourri, not the scented, living rose. I already know that survivors feel guilt, anger, regret. For many years I fought to remember my living vital mother, not the pitiful little ghost she became before she was finally gone.

I love it that my friend is fighting. She may drive her family nuts, she may do things that hurt all of us, but it is so like her. I want to shake her and tell her to let up on her daughters, her brother. At the same time, I want to cheer. She's still herself, aggravating though that self may be.

My friend has always been there for me for more than forty-five years now. Looking after my kids, going with me on escapades, always ready for lunch full of delicious gossip and highly sugared dessert. A provider of advice, of sympathy, of camaraderie, of fun. Vivid, colourful, opinionated, a blazing bonfire at which to warm my hands.

I'm already cold. But I will fight to remember her outrageous hats, her warmth, her real self, to hold her in my heart. And I will try to be there when she needs me until the end.

Cliffs of Fall

I am feeling trapped in, this last few days. The return to standard time brings the dank November dark an hour earlier, pushing me into the warmth of the house with its foggy fingers. The air is cold with the damp and, as I write, the first snow is falling in wet fat flakes and clinging to everything. It will melt, but it is a harbinger of things to come, nasty things like icy slippery roads and icy slippery steps that challenge my driving skills and my arthritic joints. As well, it is hunting season and the woods and fields are dotted with figures in 'hunter's red' ( a nasty shade of glowing orange) shooting at and spooking the deer. We all have to drive with extreme caution because you never know when one of the wretched beasts will materialize on the road in front of you. It makes me think twice about leaping into the car and zooming off in any direction, especially after (the very early) dark.

I am also feeling overwhelmed by the sheer number of meetings I have scheduled this month. Meetings I cannot miss, having taken on the job of chair of the board. Meetings that I have to drive on the dangerous roads in the dark to attend. I can do it. I do do it. But more and more as I grow older, the effort is greater. I can see the time coming when my own fears may become disabling, a prison that I will build myself.

Confined in the Tower of London, Richard Lovelace wrote the famous lines:

Stone walls do not a prison make,

Nor iron bars a cage;

Minds innocent and quiet take

That for an hermitage.

A fine philosophy, that. But recite those lines to a young mother, tending toddlers in a home far from any public transport, short of money, and you will provoke her, at best, to derisive laughter. The expectations of our community can confine us in the adamant constraints of others' ideas of how we should live and what we should be. Poverty builds walls of cold iron around us, walls with very few, very narrow exits. However, for many of us it is more our minds than our circumstances that trap us into prisons more grim than a stone walled cell. Our expectations of ourselves can become the most stringent prison of all. Depression, illness, fear and grief are the cold, weeping stones that form these prisons and sometimes there is no door, no window, not even an oubliette, to bring us hope and news of the world.

There's a debate going on in Canada just now, in the intervals of the latest chatter about H1N1 anyway, about euthanasia. A bill allowing some types of assisted suicide is being debated in the House of Commons. It's not a simple question. The medical association in Quebec wants some guidelines to help them deal with uncontrollable pain in terminal patients. The various associations of disabled people want the value of their lives acknowledged and protected. The non-religious majority (52% of Canadians, the last poll I saw) want freedom to choose a dignified end. Courageous souls with debilitating diseases are requesting legal suicide options. I am certainly not alone in worrying about the effect an open-ended legalizing of suicide would have on the many people whose minds, not innocent or quiet, cause them constant pain.

It's not a simple question. The young man, paralysed from an accident, can fight his way through the pain and become a contributing member of society. The depressed new mother who throws herself in front of a train could have been helped, cured perhaps. Even Tracy Latimer might have been helped although I understand, I think, why her father killed her. There are no lines to divide physical and emotional pain and not all pain can be 'managed'.

Here's my personal dilemma. I smoke. I do so knowing that, although I have not so far cost the state any money from smoking-related illness, sooner or later I may develop lung cancer or have a debilitating stroke that will reduce me to a vegetable to be a burden on my family and a huge cost to the taxpayer in medical care. Would it not be both fair and simple to issue me a lethal dose of something when the disease in my lungs is drowning me or to use on my mindless, stubbornly breathing hulk? Would not that be more dignified, less costly in both emotional and monetary terms? A release from the prison my stubbornness has built for me?

Or, I could just go and drive down the county road too fast, hoping that the deer I hit would be big enough to kill both of us.

Nothing in her life became her like the leaving of it.

When my paternal grandfather was in his early seventies he had a completely debilitating stroke. He could move only his head, was incontinent and could not speak. I remember being taken to visit him and watching him turn his head away from me, tears streaming from his eyes. He lived that way for several weeks and died. My father was so stricken by his father's plight that he acquired from his doctor a lethal dose of sleeping pills and gave me instructions that if he was ever in a like state, I was to administer them. Luckily, for me and him, he died in his sleep one evening while watching a ball game on TV and I never had to make the decision of whether to use them.

I have tended a lot of dying relatives. My mother, my mother's sister and my father's sister all had varying degrees of dementia in their last years and months. It was heartbreaking to watch them struggle; caring them for them took all the strength and courage that I had. My Aunt Marion, the last of my charges, had an inoperable cancer, macular degeneration, emphysema and incontinence. Experience had taught me a lot by the time she came into my charge. The instructions I laid out at the nursing home included a comprehensive DNR (Do Not Resuscitate), including instructions that she not be taken to hospital, and permission for morphine for 'comfort'. She too died peacefully in her sleep, but it took a few months. My daughter and another aunt took turns with me, sitting with her. If I had had to do it alone, I think I would have broken.

The hardest thing for me is that my memories of these loved ones as competent and vital women are overlaid with images and experiences of their debility. I have to fight past a vivid mental picture of my mother in her last day of life, frantic with pain, frightened, a tiny figure of bones and white skin, to see her as I want to remember her. My aunt, much the same, I fight not to see her with her head lolling back against the headrest of her wheelchair, jokes and stories all gone, waiting to die, her clawed hands limp in her lap. This aunt was an artist and her hands were beautiful, skilled, graceful, producing marvellous cartoons and paintings. That is how I want to remember her and that is, no question, how she would want to be remembered.

I do not want to leave a memory like that for my children and grandchildren. I do not want to spend my last days with them knowing that they are struggling, that visiting me is heartbreaking, that their grief is compounded by my debility. I do not want to become their task, their burden, their nightmare. What I want is a legal way to take my own life while I still have the mental and physical capacity to do so. What I want is a quantum change in medical ethics and the law of the land that will allow me to die with dignity, my own mistress still. My kids are not going to like that either, I know well, but I believe that such a death would leave a clean wound, not a festering, lingering sore.

If the law will not change to allow me access to a nice lethal pink pill, I want my children to give instructions for no medical intervention and lots of morphine with a clear conscience and then go home.

To a blogging friend who is living this, my love.

A few bricks short of a load.

Two blog posts came up on my 'following' list this afternoon that at first reading seemed very different. One is a heartfelt but semi tongue-in-cheek complaint by a mother about whining kids. The other is a sad and serious report by a daughter of her mother's misery and helplessness following a severe stroke. I thought about them most of the afternoon as I slogged along making a brick border around a flower bed. And the two voices met in my mind and became one voice, the voice of a woman trying her best for dependants under her care. I heard in that voice that the task of making those dependants happy is thankless, unending, almost impossible. Yet most of us, at some time in our lives, identify it as something that has to be done and that we have to do.

I've been there. Whining kids? For sure. As much as we try to laugh it off, that whine is something we have to deal with. I think that the whine is innate in small mammals; puppies for example, as well as human children. It's a sound that does not carry well, making it safer to use when there are predators around. It gets attention, that's for sure. Because it is innate, training the offspring out of it takes a lot of time and effort And telling the child to defer or change tone does not work because her woes are immediate and serious, trivial as they seem to adults. A small child lives in the moment and one Brussels sprout on the plate is an overwhelming tragedy.

Adults who have suffered damage to the brain, whether it comes through a stroke or dementia or trauma, returns to that same state where small things become mountains of misery and everything, once again, is immediate and tragic. Like the children, they have no sense of proportion. Like the children, they turn to what they see as a source of relief. But there is no relief and so the misery they feel gets directed onto the caregiver. I've also been such a caregiver, putting every skill and every effort into trying to alleviate that pain.

That pain is the pain of the caregiver as well as that of those in her care. When the child is tired and stressed by a big family party, removing the offending vegetable will not solve the problem. Something else will soon become a tragedy. All the patience and vigilance in the world will not prevent the next whine. Nor, when your loved one has suffered an irrevocable decline in health, can you restore the health and the adult competence that would allow the sufferer, and you, some peace of mind.

We all feel guilt over this. If I were only a better, more patient, mother/daughter/sister/wife, we say to ourselves. If I had more strength, if I didn't let it bother me. It's exhausting, this task of mothering, caring, tending. None of us can step back, either, and let it go, because they need us. They need us.

I've been in both these wonderful bloggers' shoes. If my experience is worth anything at all, it taught me that I didn't have to be perfect. It turned out that it was okay to be a good enough mother, a daughter who did her share but left some things for others to do. If I kept my own sense of proportion I could, and can, live with that and be at peace with myself.

I haven't said this as well as I had hoped to, but I am going to post it in the hopes that it is good enough.

And tomorrow I will go out and redo the bricks around the flower bed in a more frugal pattern because I ran out of bricks before I finished.

Some Notes on Pain

I have had a mushed disc in my spine since I was 21, the result of a badly executed layout dive from an untested diving board. I have a cartilage tear in my left knee, the result of playing basketball and consistently stopping on my left foot, swiveling on my left foot, etc. Both these injuries are now the sites of osteoarthritis, as are other less abused joints, and I hurt a little bit, most of the time. Usually I don't notice it; it's just background noise. Climbing stairs carrying a load (Little Stuff, who is not so little any more), too much hiking on uneven ground, wearing even a two inch heel, sleeping on too hard a surface, all these things bring the soreness to my attention. I love hot tubs; once in water, I don't hurt at all.

This kind of thing does not translate into 'pain' for me; pain is what happens when you put the iron down on your hand, stub your toe against a wood block and break it, or have to get your system restarted after having a baby. Pain is what motivated JG to go and get his knee joint replaced; pain that was severe enough at times that he could not walk around Canadian Tire, pain that would cause the knee to buckle on him at unexpected moments. Pain is what he has now, with the newly repaired joint. Pain when he tries to turn over in bed, more and greater pain when he does the exercises to flex the joint, even greater pain when he has to navigate stairs. We are assured that this pain will go away, after a while. But my heart aches for him as he works through it.

The pain and his determination remind me of our elder daughter. She was a gymnast in high school and in University, competing in the inter University League. She loved gymnastics. She did very well indeed. She loved the competition, also. In her last year as a University competitor she fractured a bone in her foot a short time before the Canada wide finals. There was no question of her dropping out; the foot was taped, her coach monitored it for further injury, and she went ahead. I still remember how she looked as she did her 'flying' dismount from the high bar, a dismount that has to be landed on both feet, firmly. A 'solid' landing, they call it. She knew that the landing would be agony but down she went, solidly, onto the injured foot. For herself, for her team, she just accepted the pain and mastered it, her face a serene mask.

In hospital, they ask you to rate pain on a one to ten scale. I find that a very difficult task. In relation to what? I suppose they intend that 0 is no pain, but what is ten? Do you include duration? Area? Is ten the point where your will gives way and you start to scream? I have a clear memory of telling a nurse, 24 hours or so into giving birth to the ED, that I did not know how much more of it I could take. But of course, labour is not something you can opt out of. I finally got an epidural, about eight hours after the comment. The whole experience did not amuse me. When I got pregnant again, I found (this was 1966) a book written about the Lamaze method of breathing in labour. I memorized large chunks and managed the YD's birth with no pain blocks. The book was called 'Thank you, Doctor Lamaze', a sentiment that I echo. But to put it on a one to ten scale? I have no idea.

That's physical pain -- the ordinary kind, not chronic, severe pain which I suspect is debilitating in a different way. Mental pain, I believe, is different. It can fill your mind and your world, sap your will, destroy your capacity for joy. Mental pain and fatigue are a lethal combination. When my mother was dying, I remember losing control of how I behaved -- having the world 'grey out' is the only way I can describe it. I was angry with my family, who were trying their best to help me, I was angry with the well meaning staff of the hospital who were advising me to pull back and give myself a rest, I was most of all angry with myself for not coping, not being competent, not being able to fix things. It took me a long time to come back from that grey world, a long time and a lot of help.

Given a choice, I would take labour and childbirth over mental pain, anytime.