Tuesday, August 11, 2015

Blurry Boundaries



I took Sophie along with Oliver to Sherman Oaks this morning, making a stop at a vintage toy shop that I'd read about earlier before dropping Oliver off for his saxaphone lesson. Or should I say dragged Sophie along to the appointment? I'm struggling to describe how it feels to occupy Sophie's time when it's not straightforward caregiving. The caregiving includes feeding, dressing, diaper changing, bathing, assistance with walking and -- well -- everything to keep her alive and well cared for. Sophie gets pretty agitated when we're out in stores. She's not comfortable standing in one position or she just can't stand in one position. After a bit of walking around she'll start humming and want to sit down on the floor which means I have to stand next to her and prevent her from banging her head on anything around. If she's in her wheelchair, unless it's literally outside, she gets agitated as well, slumping down, humming, straining at the straps. The vintage toy store had a plastic-covered couch with a vintage television playing reruns of Dennis the Menace and Elvis Presley in front of it, so we sat there for a few minutes while Oliver wandered the aisles. Sophie doesn't like television, so after let's say three minutes, she flung her legs out (they were cross-legged on the couch), kicking me in the process and knocking the Fisher-Price toys off the coffee table in front. We stood up, and I called to Oliver to make up his mind so that I could take her outside and back to the car.

This is all exhausting on a level that isn't even physical. When I start feeling inadequate and guilty over it, I remember the more than twenty years of it. I think of the drugs she's on and the withdrawal effects of weaning her from these drugs. I wonder if she should be encouraged to go out and about, despite her obvious discomfort, or if I should just let her be in her room where she seems content mouthing toys and walking around like an artifically subdued lion. The thing is that when she's in her room, I'll walk to her door to check on her, call her name, and she'll look my way, and I don't know if I'm just projecting my own anguish on to her or her eyes are imploring me to do something about the whole situation. It's a whole lot of mental chatter that makes a monkey mind look anesthetized, to tell you the truth, and I haven't learned how to still it in any other way than to know that it will pass.

When we got back to the house, I fed her lunch and led her back to her room. She sat on her bed, pulled her legs up into a cross-legged position, and I walked out with tears pricking my eyes. I don't feel desolate all the time, so I told myself that Sophie -- who surely must feel shitty a lot of the time -- doesn't either.

19 comments:

  1. Oh. I so hear you and send hugs. The mental chatter...it reaches intolerable levels sometimes, doesn't it?

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  2. Oh god. And that photo is terrifying. What I love most about you Elizabeth is that you're not a saint. You're not afraid to let your human show. This is what makes you so incredible.

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  3. Elizabeth, I cannot pretend to know what it is like, but I am so thankful for your words.

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  4. You are an incredible, loving, devoted mom. You are enough.

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  5. Sending love. To you. To Sophie. To your family.
    And I wish I could deliver a martini as big as that weird toy.

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  6. This is one of those posts that lets me know, really lets me know, how little I truly understand of the day in day out reality of caring for Sophie, not the physical caring, but the emotional, the ache to give her everything she needs, even when she can't tell you those needs. I can hardly imagine the ache, but I am glad you allow us to glimpse the truth of it, so that when we think we know, we can realize that by god, we really don't know. I send so much love.

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  7. Deeper than there are words for. Even the retelling drops me flat into silence. Or is it reverence. I think you are both saints. Poet is priest.

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  8. Oh, sister, all so true. I feel such guilt if I don't do anything with Scott during the day but most days I just don't have much energy. He doesn't tolerate much activity either... struggles out of his wheelchair, etc. Everyone says "he's just fine..." hanging on his futon all day, and honestly, he probably is. I promised him I'd take him out today (I promised myself, he doesn't understand and isn't aware of my babbling), but it's 90 degrees and 90% humidity so here we sit. Hugs...

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  9. There's no way to know. There never will be a way to know. But I'm so glad you shared this and I truly hope that you can feel that a bit of the burden of that desolation is gladly carried by us who love you so. We get to carry so much of your joy and wonder of poetry and life, it's just part of loving you to share this too.

    Love to you, Liv

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  10. I can't imagine the energy it must take to continually question whether what you're doing is something that Sophie enjoys. I wonder if it helps or feels horribly privileged of me to say (if it is the latter, let me know and I'll shut up) that there were times with my youngest that she was dragged along to outings with my older one out of necessity for me and I felt guilty a lot, but eventually resigned myself to the knowledge that that's what being part of a family is and that nobody gets to live their own agenda all the time. I do know that each and every day you do the absolute best with the tools you have and that your efforts on behalf of your children are Herculean and rooted in love and that is more than enough.

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  11. Dearest dear Elizabeth-

    We are here for you, listening and sending our love. May you feel many arms around you, from everywhere.

    XXXXX Beth

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  12. this is a universal cry from all those who care for their children in great need. your personal story resonates on so many levels even though I have never had to care for someone so intimately and intensely. just from this reading, i would say that her responses to her environments are pretty telling as to her preferences. hugs to you and Sophie!

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  13. I agree with what Angella said, sometimes I (stupidly) think I can start to see what it's like, and then this. I do know that you are incredible, I do know that Sophie feels your love.

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  14. we are truly living parallel lives, eee. virtual hugs and super mojo coming your way. xooxxo

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  15. joining all the others in sending love, Elizabeth.

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  16. Wow. I agree with both Radish King and Angella. This post really cuts to the heart of the difficulty in caring for someone like Sophie.

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