My mom has been in Palliative Care for 6 weeks now. She has cancer in her bones, liver and brain. She is dying. Her skills and self-awareness are slipping away, day by day.
I'm not worried about her, in the immediate practical sense: she is getting good care and she is in a safe place. Moreover, she seems aware of those two things. Gifts, both. She is not in pain and she seems contented. I am deeply grateful for her physical comfort, beyond muscle atrophy and stiffness from inactivity. I am pleased that she was able to choose the hospice where she is now living and that so far, we haven't had to make any terribly hard decisions about her care and welfare. I have a large family who are devoted to her and to one another. Many, many people are caring for my mother--so many in fact that I do not have to be in attendance every day. Another gift.
I am upset that she is dying. I will miss her as a constant, if distant, presence in my life. I will miss the link to my past. I knew that her process of dying would be hard for me--that's as it should be. I didn't know the reasons it would be so hard are the same reasons that the intersections of our lives have been so hard.
I feel like I should have known this. I'm reasonably clever--doesn't seem like rocket science to think that people are people and a little thing like cancer is not going to change thirty or forty years of shared history. Because it doesn't. I'm still uncomfortable around my mother for the same reasons I always have been. And the same goes for her, I think. We fear each other's judgements and thoughtless assumptions and differences. I am frustrated with her simplifications and she is bored by my ribald humour. Our fall-back positions are part of the problem.
None of this is new. Even the dread I feel as I head west on the 401 isn't new. My stomach writhes and I procrastinate and delay. My shoulders tighten and my neck aches. I hate the feeling that there is something I should be doing, something I want to be doing, but it won't come to life organically. It shambles along and gathers dust and the rats move in. It decays and stinks and creeps. It grows into an anxiety garbage heap and teeters there in front of me.
I want to be able to tolerate visiting my mother. I hate the helplessness I feel when faced with her infirmity. I hate that I do not know what she wants or how to help her. I hate that people think I've attained some sort of enlightenment for going and sitting next to her bed, when really what I'm doing is jumping up at any chance to do an errand outside of her room. I hate that people, kind people, are convinced of how much I will treasure these memories in the future. Recall tends to put a shine on things, smoothes out the rough edges--but I'm not sure that the buzz-saw in my gut can be dulled down to something precious.
I hate that I hate visiting my mother. I hate that I watch the clock until it is time for me to leave, that I set myself deadlines for how long I 'have' to stay. I hate that I comfort myself by thinking of these visits as short-term. I hate that I cannot seem to overcome these flaws, these self-centred, self-consuming miens.
The relief I feel when coming home from my mother's side is ill-proportioned. I am almost giddy when arrving at my home. Friends who have caught me in that moment must wonder at my seemingly gleeful answers to their sombre questions. I hate this relief, too, but I also need it. It is the drug I need to forget the pain of helplessness. I hate that I have to work so hard at being there, at being gentle with myself, at forgiving myself.
Where does this leave me? Well, crying in my car, this week. And at her bedside, and in Walmart, and in the Thai restaurant...Yep. I was that girl. Crazy, out of control, doesn't-know-enough-to-hide-away-and-weep girl. Or lost-her-stiff-upper-lip girl.
Where do I go from here? Same place as always, I guess. Trying to be 'good.' Trying to find a place that feels close to the me that I am and the me that I want to be. Trying to find my honourable self. My desperate, losing, learning, not-so-wise self. My self that can recognize, offer and accept some easing of this tumult. That can let my stomach unclench and my heart rest. A self that can let time, and my mother, pass away peacefully.
Friday, October 19, 2012
Thursday, September 27, 2012
Presence vs. Purpose
I was sitting with my mother this morning, in her room in the Palliative Care wing of the hospital. She's been there for three weeks and her states of mind and body have been up and down. I went in early today because I had to get home--about 2 hours away, for an appointment of my own at noon. I did the requisite puttering--putting her clean clothes and pajamas away (after showing them to her to remind her which outfits are available to her), tidying the bedside table and shuffling the chair up 6 inches or so to a 'better' spot. So, after about 31/2 minutes, I was done. Nothing to do. Nowhere to go. Nothing to think about.
Except the obvious: my mother is in the Palliative Care wing of the hospital.
Background: My mother and I are not close. My adolescence was an extended one; I didn't start to recover from it until my 30s were well underway. I was a thoughtful and malicious bitch for much of that time, particularly to my mother. The last ten years have been different for lots of reasons--one good one is that I got tired of my one-note monologue and decided to start acting like a human being. It's been nice. It's been difficult, too. Old habits die hard, especially those which start in a somewhat reasonable place and evolve into something nasty and twisted.
It hasn't been a movie-of-the-week. We didn't suddenly transform into a safe and affectionate family. There was no flash of white light, no cue for the violins. It has been exhausting and harrowing and a process which has required constant vigilance. There are so many automatic defensive tactics that come to mind that I have had to bite back. It leaves me casting about for things to say, topics to touch on, in the quiet minefield of our relationship.
I love my mom. I even like her, sometimes. I tried for years not to do either of these things, and it has surprised me that I can still find those feelings for her. When she got sick, it spurred me on to accelerate this program of accepting her for who she is, and what she can do. To love her despite her limitations and faults. There are still things I wish we could change about our shared past, but dwelling on those is not constructive, and so I try not to.
So: to the present. I'm sitting in her room, feeling slightly trapped. I feel that way at her home, too. It's not a comfortable place for me to be. It's all psychological--her retirement home is a lovely little bungalow built by her husband for his parents, many years ago. This little house reminds me of the person she wanted me to be and how constrictive that felt. It reminds me of all the things that disappoint her, about the person that I am. It feels like a straitjacket. So does this hospital room. And I know that it is just because my mother and I are in it. Together.
She's proud. Holy thundering racehorses, she's proud. I didn't realize how deeply it was ingrained in her until she needed help on such a personal level. Through all her surgeries, treatments, recoveries etc, she has not wanted me to come. I have visited her, of course, but as a guest in her home. Not as someone who is there to help. She is half a foot shorter than I--but she won't let me reach for the things on the high shelves. She doesn't want me to empty the dishwasher or clear the table or do any of the things that I usually do when in someone else's kitchen. Now she needs help walking and toiletting and eating. She would rather spend 10 minutes struggling with the knife and fork in hands that no longer take precise directions from her brain than ask me to cut her meat for her. She'd rather spend 20 minutes hunched over, exhausted, trying to attend to her own ablutions, than accept help from me.
Now, I'm proud, too. These tasks that I've described--this is what I do for a living. I provide care to people. I'm a care-giver. I cut meat, and help people bathe and dress and do their exercises and just generally assist with living. I know how to do this. I am damn good at it. My mother is finally in a place (I don't mean that I've been waiting for her to become this infirm, but rather that I finally understand how to help her) that I recognize--and she won't let me help. I stumble through conversations with her, I struggle with buying gifts for her, I agonize before visits. I'm fairly lousy at all of that. But I can give care. And it eats at me that she can't accept it from me.
We don't say 'I love you.' We rarely hug and never kiss. We don't drop in 'just because' or send funny little cards in the mail. We pace nervously around each other and try to avoid the soft spots. Our value systems are so different that any discussion of current events feels fraught with disaster. I feel so frustrated with my role in her life--what am I supposed to do?
And the answer comes to me, in the stillness of her room. She is lying quietly in her hospital bed, dressed and propped up on pillows, eyes closed. Her mouth is turned down at the corners in that strange, sad smile she had when I was small. I haven't seen it in years. The answer is: just be. Isn't that always the answer? She just wants me there. She wants to know that I am close by. I don't know why. I can't imagine why my presence is comforting to her. The way I treated her for most of my life--no one would blame her if she came at me with a sharp stick. But she asks if I am coming tomorrow (no, I am going to work). I tell her that I will be in next week again. My stomach clenches at the thought. But I will take a few days off from caring for her, and care for other people. There, I have purpose. I have a task-list as long as my arm and then some. I will be busy until my feet are screaming and my voice has run out. And then I will come back. I'll come back to this quiet place where other people rush from person to task. And I'll try to find a moment to just be. With my mother.
Except the obvious: my mother is in the Palliative Care wing of the hospital.
Background: My mother and I are not close. My adolescence was an extended one; I didn't start to recover from it until my 30s were well underway. I was a thoughtful and malicious bitch for much of that time, particularly to my mother. The last ten years have been different for lots of reasons--one good one is that I got tired of my one-note monologue and decided to start acting like a human being. It's been nice. It's been difficult, too. Old habits die hard, especially those which start in a somewhat reasonable place and evolve into something nasty and twisted.
It hasn't been a movie-of-the-week. We didn't suddenly transform into a safe and affectionate family. There was no flash of white light, no cue for the violins. It has been exhausting and harrowing and a process which has required constant vigilance. There are so many automatic defensive tactics that come to mind that I have had to bite back. It leaves me casting about for things to say, topics to touch on, in the quiet minefield of our relationship.
I love my mom. I even like her, sometimes. I tried for years not to do either of these things, and it has surprised me that I can still find those feelings for her. When she got sick, it spurred me on to accelerate this program of accepting her for who she is, and what she can do. To love her despite her limitations and faults. There are still things I wish we could change about our shared past, but dwelling on those is not constructive, and so I try not to.
So: to the present. I'm sitting in her room, feeling slightly trapped. I feel that way at her home, too. It's not a comfortable place for me to be. It's all psychological--her retirement home is a lovely little bungalow built by her husband for his parents, many years ago. This little house reminds me of the person she wanted me to be and how constrictive that felt. It reminds me of all the things that disappoint her, about the person that I am. It feels like a straitjacket. So does this hospital room. And I know that it is just because my mother and I are in it. Together.
She's proud. Holy thundering racehorses, she's proud. I didn't realize how deeply it was ingrained in her until she needed help on such a personal level. Through all her surgeries, treatments, recoveries etc, she has not wanted me to come. I have visited her, of course, but as a guest in her home. Not as someone who is there to help. She is half a foot shorter than I--but she won't let me reach for the things on the high shelves. She doesn't want me to empty the dishwasher or clear the table or do any of the things that I usually do when in someone else's kitchen. Now she needs help walking and toiletting and eating. She would rather spend 10 minutes struggling with the knife and fork in hands that no longer take precise directions from her brain than ask me to cut her meat for her. She'd rather spend 20 minutes hunched over, exhausted, trying to attend to her own ablutions, than accept help from me.
Now, I'm proud, too. These tasks that I've described--this is what I do for a living. I provide care to people. I'm a care-giver. I cut meat, and help people bathe and dress and do their exercises and just generally assist with living. I know how to do this. I am damn good at it. My mother is finally in a place (I don't mean that I've been waiting for her to become this infirm, but rather that I finally understand how to help her) that I recognize--and she won't let me help. I stumble through conversations with her, I struggle with buying gifts for her, I agonize before visits. I'm fairly lousy at all of that. But I can give care. And it eats at me that she can't accept it from me.
We don't say 'I love you.' We rarely hug and never kiss. We don't drop in 'just because' or send funny little cards in the mail. We pace nervously around each other and try to avoid the soft spots. Our value systems are so different that any discussion of current events feels fraught with disaster. I feel so frustrated with my role in her life--what am I supposed to do?
And the answer comes to me, in the stillness of her room. She is lying quietly in her hospital bed, dressed and propped up on pillows, eyes closed. Her mouth is turned down at the corners in that strange, sad smile she had when I was small. I haven't seen it in years. The answer is: just be. Isn't that always the answer? She just wants me there. She wants to know that I am close by. I don't know why. I can't imagine why my presence is comforting to her. The way I treated her for most of my life--no one would blame her if she came at me with a sharp stick. But she asks if I am coming tomorrow (no, I am going to work). I tell her that I will be in next week again. My stomach clenches at the thought. But I will take a few days off from caring for her, and care for other people. There, I have purpose. I have a task-list as long as my arm and then some. I will be busy until my feet are screaming and my voice has run out. And then I will come back. I'll come back to this quiet place where other people rush from person to task. And I'll try to find a moment to just be. With my mother.
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| Summer, 1971 |
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