The 70273 Project

with a side of Jeanne Hewell-Chambers

Tag: Thanksgiving

nancy’s home for thanksgiving: a snapshot of the days

day one – 11/23/13:
(facebook post)

We have The Package, and as she’s said 572,367,892 times I’m the past 11 minutes: “I’m going home for Thanksgiving!”

Nancy23nov13

[ :: ]

day two – 11/24/13:
(facebook post)

Nancy takes a seat at the table while we fix supper. (A light supper, but you knew that because we “fixed” it.) Anyway, the elderly traumatized cat disappears; Phoebe the Corgi lays at Nancy’s feet in protective mode; and when the black cat rubs up against Nancy’s ankle, Nancy reaches down, picks him up (gently) by the tail, and repositions him away from her. Another lesson from Nancy: don’t hesitate to get things the way you want them.

[ :: ]

day three – 11/25/13
(facebook post):

Jeanne: Nancy, you’re a pretty good girl. (Important note: Being “pretty good” is the equivalent of “exemplary” in the Nancy Rating System.).
Nancy: Yes! I’m a pretty good girl! (Said with unmistakable enthusiastic agreement). Being with Nancy is a constant lesson in unabashedly loving yourself.

(journal entry):

she wets the bed (and she obviously has a huge bladder). i am hoping the cats are more more patient and tolerable than i’ve ever known them to be.

having been around the caregiving block a few times, i see that tending to nancy is like tending to a person with alzheimer’s. it is mentally and sometimes physically challenging. i find it exhausting on every level. as you can see, i have already lost the ability to segue. by the end of wednesday, construction of complete sentences will be cause for celebration. by the time we take her back a week from tuesday, i will have lost my ability to think as we commonly know it. quips will develop a sharp edge as the week unfolds. please bear with me.

[ :: ]

day four – 11/26/13:
(facebook post)

Nancydraws

some might call it unresponsiveness, nancy’s refusal to engage and answer questions while she is putting a puzzle together or drawing a picture, but me, i call it focusing on one thing at a time. yet another thing nancy could teach me.

[ :: ]

day five – 11/27/13:
(facebook post)

I take Nancy (aka Lazy Bones) to the bathroom to get her dressed and beautiful. We get her pajamas off, she looks at her naked self in one of the few mirrors in this house, and says “I’m a pretty girl.”

(journal entry)

though it is absolutely inexcusable and unacceptable, i begin to catch a glimmer of how easy it would be to yell at nancy when she restocks the magazines over and over and over again, as many as 12 times in a 5 minute span, taking your papers or magazines to add to her stack as she goes along. or to twist her arm or to shove her down into the chair when she doesn’t sit in the chair after you’ve asked her 6 dozen times. or to swat her hand when she pinches you (hard) for the umpteenth time for reasons you can’t begin to imagine because you’re in Protect Thyself mode. i totally missed the line for physical caregiving genes. let me plan something. let me figure something out. let me find resources. let me support the caregivers – yes, please let me do that – but know that as much as i adore nancy, i am just not cut out to do this day in and day out.

~~~

IOOL2 2b

at night after she’s in bed, i stitch along on In Our Own Language 2.3. every single drawing from our august 2012 visit (457 total) is stitched individually then amassed into a collage in these three 60″ x 90″ panels. In Our Own Language 3 and In Our Own Language 7 wait in the wings. I am quite eager to get started on them.

[ :: ]

day six, today – 11/28/13:
(journal entries):

i continue my daily habit of rising at dark thirty, alone time that’s now more vital than ever. i find myself in a near panic remembering how once upon a time, i knew when to cook what – i had a cooking schedule that maximized cooktop and oven space leading us to the big thanksgiving dinner at the appointed time. now i can’t even remember what we’re having to eat.

being with nancy 24/7 is a joy.
being with nancy 24/7 is a chore.

i love her – you know i do. i can and do romanticize what it’s like living with nancy. perhaps romanticizing is not exactly the word i seek, but since we picked her up on saturday, life has been reduced to the basic needs of food and shelter. words and complex thoughts are a luxury, requiring too much effort right now.

the romanticizing becomes second nature as i watch her characteristic behaviors, as i listen to her oft repeated words and sentences and turn them on their metaphorical head.

~~~

i tell you about how she looks in the mirror at her naked body and says (without a hint of prompting) “i’m a pretty girl.” but i don’t tell you how long it takes to convince her to shed her clothes in preparation for toileting or donning pajamas or clothes. and i don’t tell you about how she ignores the small bench i put in the small bathroom to give her something to prop on as we remove her shoes and socks (several times a day because the kind of disposable panties she wears don’t come with a snap) or how strong she is – something i found out the other day when she ignored the bench, preferring to use my head and back for support.

i don’t tell you about the repetitive motions she makes every evening with her thumb and its two neighboring fingers – a rubbing together that sounds like scratching when she does it against her pants leg, a rubbing together that feels like a sharp pinch and leaves a nasty bruise when she does it against my upper arms in an attempt, best i can figure, to take the shirt off my back.

i don’t tell you how she went into brain lock the night before last – likely a consequence of a day filled with overstimulation – unable to respond to the most simple of commands. i don’t tell you that she can’t toilet by herself, can’t shower by herself, can’t dress by herself, can’t brush her teeth by herself, can’t brush her pretty red hair by herself. is she high maintenance? speaking literally, hell yes, she’s high maintenance. speaking emotionally, however, my heart says she’s worth every labor intensive minute.

lest you feel the need to say something to me along the lines of how now i ought to appreciate the caregivers who tend to her needs day in and day out, let me assure you that i have always and still do appreciate them. i have taken care of many elderly relatives with various issues rendering them unable to live independently. i love the person, but i do not love full-time caregiving. ask me to research rehabilitation or assisted living facilities, and i’m on it. ask me to organize their meds or draft a packing list of what they’ll need, done. ask me to shop for them or my personal favorite: develop systems to take care of things needing to be done in ways that allows the center of attention to save face, and i’m all over it. i just don’t think i’m cut out for day-in, day-out caregiving – even with those i hold dear. i can do it, i just prefer to do something else. and even as i write this, i’m hearing that sharp voice chastising me and reminding me that i was born to serve. for once, i’m too tired to pay much attention.

so yes, i do hugely appreciate nancy’s caregivers . . . if only i knew who they are. nancy has resided at this one institution for about 19 years. it’s a place near where her mother and daddy lived when they were alive, convenient for them to visit and bring nancy home for holidays and weekends. the parents are both now deceased, and we and nancy’s other brother and his wife live pretty far away, making it rather a multi-day event just to go down for a visit. and the institution has instructed the caregivers not to talk to the family, which is a huge red flag for me. nancy doesn’t talk on the phone, and even if she did, she doesn’t run a fever and is unable to experience pain the way we do, unable to say “it hurts here”, so i count on the caregivers to notice when something’s wrong, and i’d like to know.

i’d love to know the names of the caregivers. i’d love it if they’d identify themselves when they answer the phone instead of making me ask who i’m speaking with. i’d like monthly (weekly or bi-weekly would be fantastic.) check-in emails letting us know how nancy is doing. i’d like to know that the caregivers have basic first aid and cpr certification. i’d like to know what made nancy laugh that week, what seemed to upset her. i’d like to know her favorite color of the week, and which necklace she seems to especially like. i’d like to know that they are giving her the postcards i send her every week (when we picked her up, there were several postcards in the office where she is not allowed. i’ve never seen any of the cards or postcards in her room.) i’d like to receive a picture of her every now and then. i’d like to know what her daily schedule is like – what time does she get up, what time does she get on the bus to go to ARC, what time does she return home? does she still know the day of the week by what she has for breakfast? i don’t know much of anything about nancy’s day to day life, and i don’t really think i’m asking too much.

there seems to be an attitude of judgment by “the school” as we call the institution where nancy lives. because we cannot get down there nearly as often as we’d like, it seems they judge us not interested, not involved. that could be easily remedied with some good old-fashioned communication.

we don’t even know the name of the current administrator . . . which is fine, actually, because 2 or 3 (maybe more, who knows?) administrators ago, the reigning administrator blackmailed us, calling us into his office to say that nancy would be evicted if we didn’t pay $2,000.00 a month directly into their general fund – not money that would benefit nancy, mind you, $2k to go into the facility to use as they saw fit. i am still appalled.

i am not insensitive to how busy the caregivers are – in fact, another thing i’d like to know is that the facility understands caregiver burnout and takes steps to avoid it.

so yes, just as there are two sides to every story, there’s another side to nancy’s life, and i long to do something about it. i’ve been trying to do something about it, actually, but things move very slowly when you have no voice – no agency – in your own life. we are her agents, and i am tired of being quiet for fear the powers that be will take it out on nancy.

~~~

turn your back, and she’s gone or she’s picked up something you don’t want her to have. she does stay in bed at night, and for that i am eternally grateful because we really need our rest after a day with nancy.

~~~

Nancywithherboxes

once upon a decade, she was the puzzle whiz. now she’s the drawing whiz.

Andy says drawing has taken the place of puzzles as nancy’s creative outlet. I see puzzles as perhaps creative problem solving, a different kind of creativity from the drawing. filtering everything through the lens of my experience and knowledge base, i wonder if that doesn’t follow the course of my female development: from the comforting (and necessary) structure of to do lists to freeform. from stitching cross stitch images printed on cloth to assembling disparate pieces of cloth together to express something i often can’t articulate until well after the piece is completed.

~~~

magazines in puzzle boxes. containers. holding things, sometimes to cover visual clutter and chaos. nothing is sorted. pencils go in the same box with puzzle pieces and magazines and drawings. there is a coming together that, if i squint my eyes, could be physical representation of what is commonly known as integration. no more compartmentalization, instead, it all comes together into the woman who is nancy.

~~~

it is true that i put a spin on things nancy says and does, often turning them into sticky note reminders of Important Things. true, it is spin, and it’s also true that it’s true. as time consuming, as disruptive, as exhausting as it is being with nancy, the aggravation and exasperation is outweighed by the shift in consciousness and attention i experience when i am with her. it is all true.

[ :: ]

Jeanne Hewell-Chambers is just too tired to dress up the truth in a pretty little frock.

160

6 160 1 erased

Drawing seems to calm Nancy
or maybe it distracts her
either way,
the result is the same.

Nancy was watching tv when we went to pick her up,
her face lit up in a smile
when I turned the corner,
and she got up as fast as I’ve seen her get up
in a long time.
She moves slower now, you see.

She seems to zone out more,
and today we saw mini-episodes
of what sure looked like OCD behavior
as she arranged everything from
pamphlets that Andy strategically placed
in the truck in hopes of keeping her from
taking his maps and receipts
and eyeglass cleaning cloths.
It worked,
but she didn’t especially like
where he put them
and then at the restaurant,
she saw fit to
take the fries off her plate
and neatly arrange them
on a napkin.

Nancy22Nov12a

She tried to wrestle the sketchbooks
away from me in the car.
She likes to draw.

Drawing22Nov12b

She began drawing like she did yesterday:
writing her name
or the word “love”
or a combination of the two
then encasing
and ultimately obscuring it.
My mother said she saw
birds and sometimes,
angels in the drawings today.

Drawing22Nov12c

But by the time we left today,
her name (if that’s what she was writing)
was not legible.

Was she tired
or does it reflect how she
feels about herself
and her life?
Maybe the correct answer is
D) all of the above.

Turkeys22Nov12

We saw turkeys on the driveway
to the cottage Nancy lives in.

Sunset

And the sun was setting when we got
back to the hotel
to close out this Thanksgiving
with margaritas
and two loads of laundry.

160

~~~~~~~~~

She is my developmentally disabled sister-in-law, Nancy,
and I am Jeanne, the woman who flat-out loves her.
Go here to start at the beginning.

What’s On My Platter Today

Waves2

I don’t mean to sound prissy or anything, but when you make gratitude an inherent part of your life, it’s almost hard to make a list of what you’re grateful for on this day that comes around once a year bearing the word “thanks.” I started writing, saying, living expressed gratitude several years ago – maybe initially from a tinge of conditioned guilt (“Think about those poor starving children in China” and “Who do you think you are, Missy?” – that kind of thing), then after a while the conditioning fell away and goodness took its place, and next thing I knew, I’m just sending thank you notes and not even remembering that I did. Oh, I remember the people and the acts and attributes I’m grateful for, I just don’t always remember sending the actual note. And I’m not sure how to take that, but I don’t fret so much about it any more, trusting that it’s enough knowing I send the notes from a sincere place of deep thanking and let it go without any strings.

[ :: ]

I miss my son today. Which is not to say that I’m not absolutely delighted to be with my husband, daughter, and mother – it’s not as simple as the glass being half-full or half-empty – it’s only to say that I miss my son. We’ve come to that point in our lives when I see him about once a year on every-other big holiday. Me, the Penultimate Queen of Preparedness, the only fourth grader in town to have built a full-equipped bomb shelter for her family . . . I never prepared for this. It’s not the turkey we eat, you understand, it’s the turkey in the stories we share that Kipp and I love about Thanksgiving. I miss him, and my brain can hiss all sorts of words at me about being unattached and letting go and how he’s not really my son, and in response I say simply I’ve never aspired to be Enlightened.

I miss my daddy, too. The last Thanksgiving we “had him” as we say around here, he was a bit removed from the hilarity, and I sensed on that day that he might be leaving us.

I miss my nephew, TJ, too, and his artful eye and surprising insightfulness. He usually travels with us, but he’s a college freshman now, and exams loom large so he can’t take the time away from study hall.

And I miss my dog Phoebe. She’s still alive, thank goodness, but I am not with her, and I miss those soulful eyes that peer deep into my soul and end every one one of those conversations-without-words with an unspoken “I love you anyway.”

[ :: ]

We’ve been hearing a lot of Christmas carols the past couple of days, and a few of them can pep me up, but most of them tap into my deep sorrow, and I don’t really know why, but this whole season is rather sad to me. (Sometimes I sense it has to do with what amounts to Great Big Lies we’re told before our critical thinking skills have taken hold.) (And when I say “lies” I’m not just talking about Santa, it’s bigger than that – like how if we’re good, we’ll get what we want and how happy is the only game in town – those kinds of lies.) Oh, if we happen to be together during this time of year, I won’t burden you with my sorrow – that’s what my journal is for – but it’s there, and this year I will not wag a finger at myself, spouting all the scoldings about how it’s the happ-happiest time of the year, the most wonderful season of all, and all that. Just so you know: I do wish I could be the posterchild for happiness and gaiety – I really do – because it makes it so much easier for everybody else, but it’s just time to lay down some of those I-do-this-for-you obligatory burdeny kinds of things.

I don’t know about what I just wrote. Seems I need a wee little bit of clarity here . . . I am not morose, not moping my way through the day with a sad face that begs folks to tell me to turn upside down. I simply choose to not muster the energy it takes to cover the sadness. I am sad AND I am not sad. All at once, all in the space of a day. On any given moment of any given day, I am polarities. Now I’ve muddied it more than ever, I suppose.

Well, Pfffft. I think I’ll go laugh and love that incredibly patient and loving husband of mine, who travels with three generations of Hewell women, never uttering the first complaint (I guess he carries that around in the same pocket I carry my sorrow in); with my Mother, who I’m enjoying like never before (perhaps because we’re both being honest like never before?); and my daughter, who is so much fun (we pretty much wrote a play on the way down last Tuesday, and laughed – oh my goodness, how we have laughed). I will go sit and let the unending sound, the unimaginable enormity, and the undemanding horizon of the ocean wrap itself around me. I’ll ask the waves to help me roll this into something presentable, then we’ll go fetch Nancy and take her for an early Thanksgiving dinner, and all along the way, I’ll honor and love and be grateful for those I love from afar as well as those I love from a chair away.

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This drawing speaks to me of parent/child.

Clouds1

Today’s sky: a cloud poem.

We are quite the motley crew:
my husband with his hurt back;
my mother with her aching neck/shoulder/leg/hip,
and my daughter with her broken foot and badly sprained ankle.

158b

We had arts and crafts time tonight.

~~~~~~~~~

She is my developmentally disabled sister-in-law, Nancy,
and I am Jeanne, the woman who flat-out loves her.
Go here to start at the beginning.

the key to thanksgiving 2009

key.jpg


chapter 1:
we leave late . . . which puts us driving on the mountainous roads of western nc through the dense, opaque clouds. 2 cats fight the entire time (loudly and physically) while 1 cat practices his carsickness in my lap. and on my arms. and, when all other appendates seem to be covered, on my chest.

chapter 2:
we arrive at the house only to find ourselves locked out. my key that always lives in the car console is m.i.a., and the fella’ doing work on the outside of the house has apparently taken the (singular, as in the only) spare key home with him. or something.

chapter 3:
the garage door opens, thanks to the cooperation of that programmable thingie in my car, so we shepherd dog and cats into the garage and position a big box in front of the cat door because, at the risk of sounding inhospitable, i’m thinking i don’t want the cats to be inside without canine or human supervision. (surely you’ve heard what the cats will do when the mice are away.)

chapter 4:
we head into town where we are delighted to find the dollar store open and a rack of clothes for sale on the sidewalk. alison and mother have their clothes, but i have nothing save the ones that now smell of eau de cat vomit. i pick up clothes, deodorant, and a toothbrush . . . plus a couple of christmas trees for the front door, 31 reindeer ears, a few presents, holiday greeting cards, dog food, a gallon of water (since the water is turned off at the house), a blanket large enough for all the cats and then some, a bed for the dog, and some dog food (already have cat food). just the essentials, you know.

chapter 5:
we walk to the restaurant and inhale food while they mop the floor under our feed, refill condiments and wish we would eat faster.

chapter 6:
back to the dollar store where i purchase some black thermal pants and a mini-dress to wear over them as pajamas since both mother and alison draw the line at me sleeping naked.

chapter 7:
back to the house to feed the animals and tuck them into bed. as alison and i unload the car, mother slips behind the wheel, prepared to honk and flash (the lights) should cats even look like they’re thinking of running out of the garage. they don’t – just the sound of the door is enough to send them into cabinets, thank goodness. we put out the food and water, spread out the blanks, fluff up the dog’s bed, and leave.

chapter 8:
when mother exits the car at the front door to the hotel that we hope has one more empty room, out falls the fork that she “lost” at the waffle house where we stopped for a bite on the way to n.c. eons ago. don’t ask.

chapter 9:
we turn on television in time to see donnie osmond announced the winner of dancing with the stars then showers and smirnoffs all around (with me in pole position) followed by soft snoring and sweet dreams.

chapter 10:
after the free breakfast, we load the car and head back to the house. seeing the neighbor’s car, we stop and i ask if he knows the whereabouts of his friend who did some work on our house. turns out it’s a case of EX-friends due to the unfortunate fact that workerbee stopped paying rent to neighbor (a.k.a. landlord) which led to the eviction of workerbee. so, no, neighbor doesn’t know whereabouts of workerbee but grabs his tools and vows that he won’t leave till we’re inside our house.

chapter 11:
neighbor can’t find a spare key in keybox open either. doors all locked. windows all locked. he’s checking the last door when i notice that workerbee left a trapdoor open that leads to under the house (i immediately picture me trying to wake a family of bears and ask them to pretty please find another place to hibernate) and i hatch a hail-mary idea: “what if we can get inside by going under the house?” i explain that there are 2 closetesque doors in j’underneath (my n.c. studio) that open to – surprise – the big rock on which our house sits. (it’s eerie and captivating all at once.) the way i figure it, he’s just got to take the hinge off the smaller trapdoor (the larger, open door is a deadend – i already know that), crawl in, and find his way over to one of the 2 surprise doors. it works, and before you know it, i’m standing inside asking how can i ever repay him for breaking and entering.

chapter 12:
the key is now permanently attached to my person, and 4 duplicates are on their way up with hubbie. the animals roam contentedly (if not always peaceably). groceries are put up. yesterday’s clothes are washed, and now – at 3:11 a.m. on thanksgiving day – i prop my eyelids open waiting for hubbie and son to arrive and make the dinner table complete. let the overeating begin . . .

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