day one – 11/23/13:
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!”
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day two – 11/24/13:
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.
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day three – 11/25/13
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.
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.
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day four – 11/26/13:
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.
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day five – 11/27/13:
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.”
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.
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.
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day six, today – 11/28/13:
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.
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.
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Jeanne Hewell-Chambers is just too tired to dress up the truth in a pretty little frock.
I had no idea that you and your family have had so much trouble with the home and the administrators. I am so sorry and cannot imagine how difficult that must be.
I hope you managed to have a wonderful Thanksgiving and can get some rest because both you and Nancy need it.
in all the years i’ve roamed this beautiful rock called earth, i’ve found that you just can’t beat good old-fashioned communication.
This is beautiful, Jeanne. Thank you for sharing. I am grateful to your family for taking such wonderful care of Nancy. She is certainly a beautiful light that shines brightly…I will try to do better with updates for you. Please let me know when you will be in Deland again. Happy Thanksgiving today and every day. Kathy
kathy, thank you for all you do for nancy. obviously i wasn’t talking about you as you don’t work for but with the facility – you are a fine advocate for her, promise you’ll never stop.
An amazing and honest entry– and good to read. No one is as heroic as they think they should be. You’ve given me the courage to write about my last year with my mother before she passed away on Halloween. It was wonderful and it was exhausting. I treasured our time together, and I am secretly relieved.
I can understand how dismaying it would be to be marginalized from Nancy’s day to day life. I hope that can be resolved some day. From what you’ve written, she seems well cared for. Otherwise, I’d think there would be emotional or behavior set backs, anxieties, fears, whatever. So at least you have that much.
She will likely treasure the visit she had with you for a long, long time.
i can’t wait to read your words. there is something so necessary in writing both sides of caring for a loved one. “secretly relieved” – yes, i totally understand that. x
Wonderful post…where do I start! “Filtering everything through the lens of my experiences and knowledge base” Said of drawing…I said something similar the other day when I told a family member that my art is the “sum of everything I’ve ever experienced in my life–all the work I’ve ever done.” One draws from the depths of their psyche when they create something out of the mass of materials in front of them. We use everything we know, and then some.
On the subject of calling….how do WE know what GOD wants us to do? Certainly by listening to our own self talk. Had anyone told me ten years ago that I would have 2 elementary school children in my house I’d have asked them what was in their eggnog. I’ve had 2-4 for the last five years. My aunt Caroline, dad’s sister, pulled me aside yesterday and said: “Keep doing what you’ve been doing.’ I thought she was talking about my art, as I had just shown her a panel. She went on to say how well the kids were behaving and how good my sister-in law Karen looked (Karen lives her now too). So, now I have 4 of my extended family on the farm and will have indefinitely.
Reach out to Mary Wilkerson Jones. She cares for her brother Brad now and knows exactly what you’re dealing with concerning Nancy. Brad is a wonderful spirit, but can be a real handful. He’s not as high maintenance, but he requires a lot of attention. I also have a cousin who is 5 years older than I am. Joane had MS as a child and still can’t walk. She communicates in grunts, facial expression and arm movements, but she communicates! Her parents are gone now, so it falls on others to care for her.
Keep up these early morning “self time” experiences, even if it means you have to ask someone to watch Nancy while you nap. You will burn out if you don’t.
E-mail me sometime when you have a moment. I managed to delete your e-mail recently by accident….trying to create space for more incoming messages….technology!!!
sometimes I read things you write and I hear-feel the whole palette of the heart. The love that rides the waves of tenderness and frustration, and the care that is laced with complete exhaustion. Loving some one like Nancy is a lot like quilting, when you are done, it’s beautiful, might keep you warm or hang on the wall to make you smile. While your making it, it’s more work, more finger pricks and blood on the floor, then most of us will ever confess to.
As always I am grateful for you, every day.
There is a special place in my heart for caregivers. For the last four years of her life, my grandmother was in facilities providing ever-increasing levels of care. We had the advantage of several of us living close, so she had a family member there at least five days out of seven very week.
Even then, we had to make an effort to get to know staff, and monitored her care every step of the way. I cannot imagine how frustrating it is to get so little cooperation from those that care for Nancy.
Thank you for your honesty here, and for the honesty of the others that have commented here. There will always be some measure of guilt with regards to the relief that would often come on the drive away from those places.
Love to you and your family.q