Friday, October 2, 2015

Caregiving Chronicles






to Heather McHugh


Your mind goes to what you might have been doing, what sort of career, what you'd wear and how much you'd earn. You think about that first job, so long ago, the stockings and mustard-colored pumps, the boyfriend back at the old church in East Nashville, just over the bridge. He was writing novels, parsing out Blake, and you were thinking about railroads and utilities, feasibility and warding off the good old boy gestures, that guy Bruce in the corner office with the curly hair and lecher walk. You went to a conference once, at the World Trade Center in New York City and it's just too, too, to mention that both towers fell -- that one in your mind, and then those others. Your mind goes to possibilities dashed but is filled up, again, by what came, what's still coming. Sophie couldn't go to school today. She's suffering from withdrawal. I can't go to work today because of that, and whose fault is it really? I've lost twenty years of wages. No one talks about that -- at least not out of the predictable and tired construct of the working versus the stay-at-home mother. Stunning vulnerability. No one talks about choices when there is no choice. We don't have choices. I wouldn't have it any other way, though. I can yearn for some kind of sea change in the way our society treats handles perceives reckons with deals screws pushes away the cost of caregiving. Or I can fill out the forms, get on my knees and swallow. Someone mentioned Chronic Traumatic Stress Syndrome to me the other day. Acronym is CTSS. I'm not complaining caresplaining. It is what it is.

24 comments:

  1. Problem is that when makes the decision to keep a loved one home under ones personal care, it's difficult to turn over the care to a sitter, or even to a school or something when the problem is complicated. I made the decision to stay home with my children, but when one was dxed with a life threatening condition, I did not trust his care even to the hospital nurses without myself or husband at his side. Too many mistakes or things not in line with my thinking would be done if I weren't right there. In my case, it was a two year period, not 20 years, where my son was not left in anyone's care for more than an hour or two, without husband or self nearby. But I could not see myself doing otherwise, though I was faced with the choices many times each day. I remember being sick at leaving him with my husband and MIL, when I went to my brother's wedding for a several day trip, as my first time away after that 2 year period. And all the fears of sending him to school, I suffered when it was time for him to rejoin the world; I spent a veritable fortune putting into a private school after watching how the public one was.

    With Sophie, you have found a place at her school, where they can deal with her needs, her seizures, should they happen. Pre cannabis, they had to deal with them constantly. I'm sorry that she is suffering from withdrawal in a way that keeps her home. The only bit of satisfaction from this, if one can call it that, is that the Vimpat was working in that it did reduce some of her seizures before she was taking cannabis oils, that you did not have her on it for nothing. IF she doesn't need it anymore with the marijuana extracts, makes things all the sweeter.

    I'm nearly 10 years before you in terms of college and career. I knew all of the women at my college, that had just turned coed a few years before we went there, and many went full fledged career and are doing extraordinary things with their brilliant minds, passion, energy, and time. Most of those have no children. We did a tally and it was striking how many, including my closest friend chose that route. Those of us who did focus on our children stayed pretty much part time, and did no so soar in outside things. With me, I had so many kids (5) and spaced them out so there seemed to always be one that needed my focus, that I did very little in terms of outside work and earnings. It was a tulmultuous time for women of my generation with the choices to make. You've done well in balancing your passions, your talents as well as your caregiving.

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    1. Thanks, Cath, again for your thoughtful response and kind words. I will call you out, though, on your confident statement that "The only bit of satisfaction from this, if one can call it that, is that the Vimpat was working in that it did reduce some of her seizures before she was taking cannabis oils, that you did not have her on it for nothing." Not sure what you mean. Sophie has been on Vimpat for a long time, and it wasn't controlling her seizures at all. In fact, that's why we began trying cannabis. When a person who has seizures goes off a drug, they usually DO have increased seizure activity, but those are related to the withdrawal of the drug. If you can hang in there without going into status (which, knock on wood, Sophie always does), it's been our experience that you revert back to baseline. I don't think for a moment that Vimpat was helping control any seizures. I am mad at myself for not getting her off of it years ago, but given how many seizures she was having and how crisis-oriented we were at the time (for years), I was loathe to introduce another stressor. I think you asked earlier, too, about the Onfi. We have stopped weaning the Onfi while we tend to the Vimpat. Our last wean of Onfi was in June, so all ducks are in a row.

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    2. Corrected. My knowledge of how it works with epilepsy drugs is miniscule. I thought that because the withdrawal caused seizure activity, that maybe the drug was having some effect in at least reducing the number of seizures. I'm sorry that the withdrawal caused seizures when she was doing so well, and hope that she goes back to her baseline. When she and Calvin get off their drugs, I'm going to do a virtual toast to celebrate. .

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  2. Man... you and I are riding the same wave, probably because our children are the same age. I've been fighting to keep my head above water financially and maintain some sort of a career since Scott was born, all the while providing exceptional care to my son. Yeah, exceptional. It's gotten harder and harder and I've finally given up. NO, I'm not going to put him in a group home so that I can maintain working-to-pay-the-bills-and-take-a-yearly-vacation like a few people have suggested to me lately. I'm waving the white flag and devoting myself to Scott and just being. Goodbye job, goodbye house in the burbs. Hello tiny apt in the sunshine and a maybe a grocery clerk job if I can squeeze it in.

    Good luck on the weaning, Scott had rotten tonic clonics as he came off phenobarb.

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    1. We need to talk. I love this: "I'm waving the white flag and devoting myself to Scott and just being."

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    2. We do need to talk... I honestly hope to get to one of your feasts when I'm back in Calif... It's always amazing to me that people would suggest that I give up the favorite thing in my life to make it easier. I guess that's the main blessing Scott has given me, is to see a different side of life. I was never happy as a soccer mom. Yes, I'm sad a lot now too but it's different.

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  3. 'Sending you and Soph and all beings deep love and blessings. I believe that you are held in the countless arms of buddhas and boddhisatvas everywhere. Inspired by your fearless honesty.

    XXXXX Beth

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    1. Thank you, sweet Beth Coyote. I feel you out there.

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  4. I've experienced this on just the smallest level-staying home to take care of my young'uns but it was a choice I was fortunate enough to make. I did have a few jobs here and there but even that was way too stressful even though I did some of them for years. But yeah, I've wondered what would have happened if I had worked as a nurse, which is what my training and degree were in. Sometimes I feel guilty because Mr. Moon could probably have retired by now.
    But it's all a moot point, isn't it?
    And you haven't had a choice and there's the difference. I would very much imagine that you DO have CTSS. I was going to ask you the other day about plain ol' TSS. Because I can't imagine you don't have some form of it.
    And yet, as you say- you wouldn't have it any other way. But why DOESN'T our country, our society recognize the monetary value of what a family care-giver provides? At the very least, you should get social security credit for what it would cost to pay a care-giver. Is that ever done? See- I have no idea.
    Which sort of sums it all up. I have no idea.
    I just know I respect the hell out of you.

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    1. I'm nodding my head while reading your comment, Mary, and saying, "mmmmhmmmmm."

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  5. It's CTSS for sure and I have so much to say about this my head feels like it could explode. I care and I think about these things for you a lot. The over used words that always come to my mind are, I love you and I hope you know they are meant to communicate so much.

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    1. Thank you, Joanne. Nothing said in love is overused!

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  6. I cannot fathom all that you balance - much less, that you do it without a net

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    1. Well, I do have a net of friends and family. Plus, Mother Earth is pretty damn beautiful.

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  7. I'm sorry Sophie is having a hard time right now, and the ripples of that, not just right now, but down through the years. What can be done? It's a serious question, not a rhetorical one. love.

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    1. Thank you, Angella. What can be done, indeed?

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  8. Elizabeth, I envy your ability to have such a clear sight into the center. Right into the eye of the swirl, your swirl. I'm whirling around and around and I don't know how far in or out I am most of the time - but your writing pulls me right into that clarity in the calm. And it isn't really calm there, is it? It can't be, it's in the fucking swirl. You wrote it so well and if nothing else today, you should be really proud of how you did that.

    I so understand you when you say you have no choice and the world around you says you do, it is a very tough place from which to communicate.
    I've been on disability for 25 years as you know, because of untreated bipolar and no matter how many times people say that I could have done this or that, should have made different choices - I know that it isn't true. I know I had no choices. I had to be me and I had to be my own caretaking and try to wend my way out of the maze. I still do and it's a tough and lonely place to be - and you're there too. I think the maze never goes away but it gets a little easier for you when you can see so many others coming in to walk with you and trying to help you find the way out. I am delighted to be among that crowd - although it's pretty clear, I have no sense of direction...

    You write so beautifully about looking back. I see you in those pictures of yourself with your college girlfriends and I can imagine how full you were of life and the sweetness of first and second and third loves. Most of the time I try to hold my head in my hands and not look back. It's heart breaking to look back, but sometimes you have to - no matter how much it hurts. It's almost like looking back on it might bring it, for a moment - and it's sweet. And then - you are where you are and you can't be anywhere else, but it's still good to know you have looking back when you need it.

    It brings a sadness and a solidarity when I see you scrambling to pay all those bills when you are rooted to the place you are - when what needs to be there, energy, peace, money and the freedom for that intellect, that huge intellect of yours to do everything it was meant to do, are always short of where they need to be, and you get very tired. No amount of squeezed in "vacations" , or "breaks from it all" can really get you to that place where the fatigue vanishes. There is a burnout that one reaches and sometimes only professional help can give it some relief. I don't know what that is - what it could look like for you. I often think that we, those who are present to appreciate and respond to your situation with all the love we are so graced to give, aren't enough. That what you are able to do here to let some of it out, is never going to be enough. I so want you to have enough. Enough of everything that you need.

    And I know enough about you now to know that you will get up tomorrow and you'll love the sun coming in those windows and it will pretty much be ok.

    God, I'm lucky to know you.

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    1. Thank you, liv, for your sweet words and so many thoughts and such concern! I have plenty of help -- even see a therapist most weeks. I have amazing, supportive parents and a tight circle of girlfriends. I have two helpers, too, that I think of more as sisters than helpers. So, don't be too worried!

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    2. Whew! That's good. Sorry that was such a long and rambling one. I always wish I could just make them short and sweet.
      What I should probably just say is - Gosh, you're pretty! haha
      Love you - have a good night x

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  9. I just keep thinking of a line from a Brandi Carlile song, "You can dance in a hurricane, but only if you're standing in the eye." May you find your way back to the eye soon and cut one hell of a rug. Until then, please know that, in the currency of love and respect and fierceness, you are a billionaire, for that is how caregivers are paid, I believe. It doesn't put food on the table, but oh, I wish it did.

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    1. Thanks, Kario -- I love being a billionaire.

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  10. You have an amazing ability to stay lucid and sane in the midst of challenges. I admire you for that.

    Greetings from London.

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  11. yes. yes. yes. Thank goodness for your supporters, both physical and virtual. and the retreats that you manage to go on. you've been making it work for a long long time, and that is no easy task. the small amount of caregiving I provide for my mother (Parkinson's, 18 years) wears me flat out. Like you, I wouldn't have it any other way. But I must acknowledge the physical and mental toll it can take on me, especially those times when I am her sole person for a week. The rewards: her gratitude, her sweetness, her company, her humor and her willingness to be assisted. I've gotten to really know my mother through caring for her, and my love for her has deepened immensely.

    You, dear E., impress the hell out of me. You acknowledge the good and the bad, which is an honesty that is admirable.

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  12. I'm struggling right now too, in my own small way, with the sense of that other life, the one not lived, and with various regrets. I'm sorry for these hurts, for you and for Sophie.

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