Wednesday, January 19, 2011

Autonomy


Last night at about 9 p.m., my aunt's home attendant called and said my aunt was refusing to get up from the sofa in the living room to get ready for bed. She said every time she approached her and tried to take her arm to help her up, my aunt would flail and fight and tell her, "Don't touch me." And then she would continue to just sit, staring into to space, into who knows what thought pictures were inhabiting that space. The home attendant asked if I could come over there and help because she didn't know what else to do. I asked my husband to come with me. My aunt feels very safe and grounded in his presence. We went across the courtyard to her apartment, and there she was, still on the couch, looking very small and hunched and bewildered.

She gazed at us when we walked in, as if taking a moment to understand who we were and then she smiled fleetingly. We sat on either side of her and asked her how she was doing and just generally chatted with her. We can no longer grasp a single thread of what she is saying, but we knew she was engaging with us in conversation just the same. At one point she was trying to tell us something, and we just listened and wished we could fathom what it was, because it seemed to her important. Eventually we asked if she was ready for bed and she nodded. My husband helped her to stand, holding both her hands while I got the wheelchair and pushed it next to her. But my aunt just stood for a while, unwilling or unable to make her feet do her bidding to turn her body so she could lower herself into the wheelchair, and after a while she just sat back down on the couch.

The home attendant sat on the other side of the room, shaking her head in frustration. She doesn't have the patience of the home attendant who comes on the weekends. This woman, though well-meaning and really very funny, is more brusque, wanting to get things over with. My aunt has a visceral negative response to that. It makes her want to resist with all the force she can marshal, which is still a lot.

My aunt seemed agitated when she sat back down. I stroked her hair, which always seems to calm her. And then I had the idea of offering her money to put in her pocket, since she is fixated on her finances above all else, having once run the Office Services department at Barnard College, and having had to dole out money to her two children for one thing or another her whole life long. Now that her daughter, the addict, is no longer in the house, money lasts a long time, as my aunt's needs are few. But she likes to have a few dollars in her pocket to give to her great grandsons when they visit, or to her grand nieces and nephews. When I pulled out three twenties and handed them to her, she brightened at once. I suspect she felt as if she now had some agency. And sure enough once the bills were safely tucked into the pocket of her dress, she began pushing herself forward to the front edge of the couch as if to stand. This time when my husband helped her up, she did her little shuffle to turn herself around to sit in the wheelchair and I wheeled her into her bedroom, where the home attendant took over.

Once she was ready for bed, we kissed her and she looked at us intently, trying again to tell us something. It seemed to be a story of a time long past, and we nodded and murmured to her and found a break in the unintelligible sounds she was making to say our good nights. As we walked back home I was thinking how very lonely it must be to be so trapped inside yourself, the memory still vivid of when you were powerful and in charge, but now you are dependent on the patience and humor of paid caregivers, waiting for the arrival of relatives who might or might not happen by that day, and who even when they do come, leave much too soon and never really change a thing.

14 comments:

  1. Your dear aunt is so lucky to have you. I hope I have peeps who care when my time comes.

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  2. I guess all any of us want is to feel empowered and in control. Fantastic read.

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  3. The picture and the words are so very true and so very honest and so very beautiful.
    It isn't easy at all to die, is it? That time-between must be so strange. I hope it carries its own beauty and own reward. I think it must. I hope it does.

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  4. We are all not much different than your aunt. Not as autonomous as we would like to think. We are dependent on the relationships that we form in our lives. Your aunt is showing this to you. She feels you.........so do we.

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  5. What a beautiful post, I have a tear in my eye as I write to you. My father in law passed last week and like your aunt was dependent on others by the end. Your last line really hit me "relatives who might or might not happen by that day, and who even when they do come, leave much too soon and never really change a thing." That is exactly how it was. Thank you for sharing.

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  6. Angella, This was difficult for me, knowing this may be waiting and not having a you or that many relatives to understand or care, regardless of how long they stay. I just read a quote, "Growing old is like being increasingly penalized for a crime you haven't committed," from Pierre Teilhard de Chardin. An uncomfortable future to contemplate, told with much compassion.

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  7. Tess, this is something I think about a lot now. Who will be there for me? One can't assume one's children will do it because they may be living on the other side of the world for all we know. But as my mother likes to say, "sufficient unto the day..."

    indigodog, i think you're right about us wanting to feel in control of what happens to us. thanks for the kind comment.

    Ms. Moon, I don't know what the reward is for my aunt, I don't really see it, her life is so diminished. I supposed, though, there is a purpose in her being here with us, she is teaching us, and she is allowing us to be of service, which is a kind thing, given how little there seems to be in it for her. Just a thought. Thank you for being here, my friend, for caring.

    Dear Bruce, so true. I believe what you say, that she is showing us how dependent we are on one another, it is her gift to us. We depended on her in former days, former years, and she bore our weight with no complaint at all, she carried us happily, sincerely glad she could do it. Now we need to be there for her. I wish I were better for her. I wish I could do more.

    Katrina, my sympathies to your family on the loss of your loved one. The end of life can be so hard, and as some here have said, it's so important to hone in on the lessons, the love.

    Marylinn, as I was saying to Tess, above, I worry about who will care for me if ever I am unable to care for myself. I said this to a cousin of mine once, a woman who is like a sister, and she said, "For all you know, the person who will care for you is being born today." Here I am, caring for my aunt while my almost 89-year-old mother lives elsewhere much of the year, and I have to depend on others to care for her. We do what we can for whomever we can. And we have no choice but to trust that when our times comes, someone, very likely not the obvious person, will be there for us.

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  8. My heart goes out to you. My Mom has been taking care about my Dad for 10 years now. He lost his sight. Having my parents go through aging I know how hard things can be.

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  9. dearest Angela, a very sobering, sad post. I had a misdiagnosis in Florida and almost lost my foot. There was no one to care for me, so the hospital sent me to a nursing home. I'd visited my beloved grandmother in a nursing home every other day for 12 years, so the staff knew someone was close and closely watching, so she was loved and cared for and had a good death. But I was 51 years old, sitting in a paper johnny, in paper diapers, with no watch, no cell phone, no purse, no glasses,no visitors, attached to a morphine drip and PICC line. I could not leave my bed. Somehow I'd held onto a book and when the sun came through the window for three hours in the afternoon, I could arduously read perhaps two long paragraphs of Henry James. The rest of the day was unpeopled. The nurses and aides had a way of looking at my forehead rather than in my eyes, as if to see deeply into a suffering person with a history and present pain was too much. I lay in that bed and my future came roaring at me like a train, a locomotive that could only obliterate my past and selfhood. It was terrifying. I hope your aunt doesn't suffer anxiety alone, that her memories are still clear even if her speech is not. And you, her loved ones, do what you can and she will register your love, and maybe it's not enough but it is the medicine that will most help her, no matter the frequency. Lots of love, Angela. You have to trust that she's in a place she can bear.

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  10. Olga, it must be hard on your dad to lose his sight, and hard on your mom, too. It's good they have each other, though. And you.

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  11. Vespersparrow, I am sorry to have brought back memories of that difficult time. You write about it so vividly. It was clearly so painful, i'm so sorry you ever went through that. You've really made me think again about how often I visit my aunt. You've made me resolve to get there more often, at least every other day. I get so caught up in everything else sometimes, but I need to remember that the day will come when I won't be busy anymore, and I will wish some busy person I love will carve out the time to come and see me, even for a little while.

    The roaring locomotive is a terrifying image, but it is not necessarily what will be. What can we do now to make sure that our stories have a better outcome? I'm thinking about that a lot these days.

    Thank you for sharing your heart here, dear Melissa. Love to you.

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  12. But, dear Angella, YOU changed so much for your beloved aunt. Maybe, just maybe, she got exactly what she wanted by having the caregiver become so frustrated that she called you and your husband to come over. And maybe, the money, the gentle touches, the kisses goodnight were what she needed in order to feel heard and important in this world. By going over there, you proved to your dear aunt that she still does, indeed, have some power. Not the power that she used to have, or wishes she could have now, but the power of loving and being loved.

    I find it very interesting that you and I have had similar experiences in the past couple of days, yours concrete, mine, just a memory. Looking back on the time that I had saying good-bye to my grandma, I know now, that my husband and I did enough. I know now, that she felt loved and cared for until the very end and that we were the ones who were meant to fulfill that duty. I understand the heaviness of your heart. I can feel it in your very loving and compassionate words. You are your aunt's angel. That can sometimes feel like both a blessing and a curse. A curse because no matter what you do, it will never feel like enough.

    I read here in your comments that this has brought up the question of who will be there for you when those days approach. Trust, dear Angella. Trust that when you live your life in an honorable and compassionate way, the right person or people will be there for you.

    This post brought up so many feelings for me, but I thank you for that. For me, it was an honor(although sometimes, entirely frustrating) to be there for my grandma. I am holding your aunt very close in my heart and in my prayers. I am holding you there, too.

    With love,
    Debbie

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  13. Debra W, I never thought about all the different ways in which one can express one's power, but maybe you are right, my aunt created the situation she needed in order to get her need met in that moment. I hope that is true. It is comforting to think of it in this way.

    I too, was struck by the similarity of what we were experiencing, and the way each experience illuminated the other. I know you understand intensely what this feels like, and you are right, you never feel as if you can do enough. But we do what we can.

    Thank you for taking the time to write so thoughtfully, sharing your own experience. You are truly a sister spirit. Hugs.

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  14. Yes, dear heart, we do what we can. And I do believe that your aunt still has some spunk left. I do believe...

    My grandma used to tell me about the very vivd dreams that she had towards the end of her life. She was young and happy and could still dance beautifully in her dreams. I think that is part of the reason she liked to sleep so much near the end. She was reliving her life in her dreams. Maybe your aunt is trying to tell you about her dreams.

    Hugs,
    Debbie

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