Tag Archives: caregiving.

The gladness, it arrives

What many of you don’t know is that the most recent chapter of sister-drama and crisis lasted for nine years. That’s almost a decade. Nearly a decade of being drained, embattled, hopelessly entangled, desperate, and full of episodic fury and nearly constant resentment.

Mostly kept out of view here.

I can date my getting to know the thread-people here to the very beginning of this nine year chapter because — clear as day — I remember reading an article about Jude while waiting in the ICU (“The Artful Blogger” perhaps?)*

A few doors down, my sister was recovering from emergency abdominal surgery. A hernia and necrotic bowel. Then she went septic. When the doctor called, he gave her a 60/40 chance of dying and then announced in a voice dripping with judgment, “She’s almost 400 pounds, you know,” as if it were somehow my fault.

I honestly couldn’t tell in that moment whether I wanted my sister to live or to die. It might’ve been 60/40, too.

We hadn’t talked in nine years. For good reason.

Because of her size, they couldn’t close her up. The plan was for her to lose 150 pounds before attempting the final sutures and so there would be eight weeks in ICU and then a lengthy rehab. But because of my sister’s aggression, they put her into a medically-induced coma.

(I guess the male nurse got kicked in the balls one time too many).

That meant she had to be ventilated.

And that meant that when the tube finally came out, my sister couldn’t talk. Not even in a whisper. For weeks, she wrote me short notes in a shaky hand. As it turned out, a medically induced re-entry to relationship was a gift. What better way to reconnect with an estranged relative but slowly and with carefully selected words?

Around this time, I started taking Jude’s classes. I had two kids in high school. Often caregiving and exhaustion kept me from participating in the way I would have liked. That created some tensions that were mostly, but not exclusively, internal. Some linger.

Because of this fateful beginning, it was just weird to sign up for Jude’s last round of classes during the demanding and excruciating final weeks of my sister’s life. Talk about distracted. There were dirty diapers to dispose of, commodes to empty, calls to 911 to make (“she’s at 86% on four liters of oxygen”). There were DNR and DNI’s to be signed, regular care and hospice care to be coordinated, a nursing home transition to make, and should the priest come now, no not yet. Now.

Then her awful mess to clean up. And then (gratitude!!), Italy for more than half of April.

So once again, with respect to online participation, life thrust me into this position of “delinquency” (at worst), shadowy participation (at best). It’s a pair of bookends. A bit of a rerun. Not how I want it to be.

Because this burden of care has been on me for most of the time I’ve been participating in fiber circles, I am happy to mark a change. First with a brag and then with a photo.

The brag — I HAVE FINISHED MY NOVEL! I know I mentioned this in a comment a few days ago, but it bears repeating. First draft — done! Already edited 4/5’s, so edit last bit in July. Assemble list of agents in August. Compose query letter. Start submitting in September while also researching self-publishing.

Nine years in the making (there’s that number again). Ta-da! For all of the support I’ve received here: many, many thanks. I haven’t forgotten the tangible kickstarter support that got me to SC for an indigo weekend, for instance.

And to Deb Lacativa, fellow writer in arms, a special thanks — she is the only person to date to have read almost every goddamned word. Caught typos. Made thoughtful remarks. Cast her wild imagination in and around the plot lines. Whew, what a sensibility!

The photo below is to document how gladness can arrive. It was taken last night while another friend and I celebrated R’s birthday. It’s a tradition for us. Since my birthday’s in February, R’s in July, and our third friend’s in October, the tradition keeps us connected all year long.

I hardly recognize myself.

Gladness and a finished draft. Not an accident that they arrive not long after my sister departs.

And since there is ANOTHER birthday to celebrate this evening, I picked all our currants and will make a pie. Usually for my husband’s birthday, we go out, but tonight I’m keeping it easy: pasta topped with the last of the truffle oil from Assisi and basil from the garden.

Ahhh, summer! Ahhh! Relief.

*This was 2009, but November, December, so almost 2010.

Recovery, bit by bit

I invite you to watch a video of my sister’s clip file while listening to the audio file (written out below). The audio is nine minutes, the video less. This is a bit of an experiment. It might not be possible to do them at the same time without more than one device because the audio link opens a new window.

 new-recording-8.m4a

It helps to thank my sister’s things as I toss them: thank you for being a place my sister could record her thoughts; thank you for gracing my sister’s walls. I left a trunk load at the donation center this morning: more clothes and books and a framed picture of Ganesh. She loved Ganesh.

She doesn’t get to hurt me anymore.

Mantras emerge. Two days ago, I struggled to remove a twisted wire from a matted picture of the atrium at the Isabella Stewart Gardner. It’s a keeper. The wire wasn’t cooperating. I knew how it might jab me, so I wrapped my fingers in a towel, not a precaution I would normally take. But I heard these words in my head: she doesn’t get to hurt me anymore. All day, I repeated it: “She doesn’t get to hurt me anymore.”

I don’t have to be burdened by her anymore.

Yesterday, picking up a heavy bag of her books sent a twinge up my shoulder. I adjusted the bag and heard the next mantra: I don’t have to be burdened by her anymore. This mantra is especially helpful sorting through her belongings.

She caused this misery.

At the donation center emptying the trunk, I thanked all the things. The second mantra came, but with a footnote. “I don’t have to be burdened by the misery she caused anymore — the misery she unequivocally caused.” Haaah. I could let go of all her bullshit about how everything was my fault. I could forgive myself for ever reacting to that bullshit. My failed poise. My lack of grace. I can breathe now.

There was a recurring question during the years of care: what was the source of her problems. When did things go so badly wrong – or was she damaged from the start? Did her problems arise out of epic, persistent self-destruction or was she so innately impaired that she couldn’t function as an adult? The answer probably didn’t matter. It certainly didn’t matter when she unleashed her fury in a vitriolic tirade.

It’s worth noting that her ability to use intimate knowledge of me and the family to launch personal and savage attacks survived her lengthy cognitive decline. I’m still washing it off.

When she essentially stopped moving and had to wear diapers, I leaned more into the theory of her lack of capacity. Simple goal setting was impossible for her, simple organization, beyond her capacity and had been for quite some time. Her anti-social nature and paranoia may have been hard-wired, too. At some point it became clear that my sister didn’t have the inner or outer resources to be an adult. Even very simple stuff was beyond her.

She can’t do better vs. she won’t do better.

It’s worlds of difference. Judgment lodges in one and falls away from the other.

Remedial reasoning? Perhaps — especially if you met her lately when all she was, really, was a bunch of conditions. But as I’ve noted elsewhere, earlier on she had a little more going for her. Deemed ‘brilliant’ in school, full of promise. She could talk a good game. Back then, you had to converse with her more than once to see she was off her fucking rocker.

Relating to my sister was so pervasively negative, so damaging to my sense of self, so at times, invisibly costly, that I had to rely on certain mental exercises to serve as reminders.

One exercise was to try and isolate her various conditions and consider how it would be if ONLY that one thing afflicted her. So for instance:  how would it be if she were solely physically handicapped? Okay, that would be a nightmare. Clearly, certainly, a nightmare. Pushing her in a wheelchair for appointments, debilitating. Watching her eat, demoralizing. Replacing her furniture when it gave way? Looking for things rated for more than 350 pounds? Tiring, endless.

On the other hand, if she’d only been aggressive, paranoid, and unreasonable, would that have made it easier? Of course not.

Had there been a choice, I’d have taken the physical incapacities over the mental any day. Her oppositional nature alone was so illogical and enraging, that it often had me exiting her apartment to walk around the building a few times, exhaling like a snorting bull.

What if it had been just her executive function that was shot? Still a nightmare. She expected to use me as a Rolodex. I wasn’t supposed to worry when she missed doctor’s appointments. The anxieties imposed were regular, with high stakes. For instance, all those times when she couldn’t call the Department of Transitional Assistance because she couldn’t find the phone number, when she forgot she had access to the Internet, and when she’d lost the form that was due back last week. The psych piece would come in if I offered to help. The rage would be unleashed if I suggested it was important that she keep her benefit, that maybe it was unfair to our brother to let it lapse.

And this was what? (there’s the question again) out of laziness? ineptitude? insufficiently developed frontal lobe?

Well, who the fuck was I, etc.

Then there was her ‘more is better’ philosophy, which made it hard to sit and have a meal with her. Her supposed gluten allergy went out the window every single time I bought us lunch – even at a Chinese restaurant where it’s possible to eat really well without it. At the all-you-can eat buffet, she’d pile her plate with fried chicken wings and dumplings. Not vegetables. Not rice. We’d need to sit at a table because booths couldn’t accommodate her size.

In other words, just her eating disorder would’ve been hard to be around.

And the pleasantries? Even non-triggering, non-combative exchanges were full of her weird assessments, her blindness to me as a person, and insufferable hypocrisy. They were awful and hard to take.

Those assertions and opinions alone were hard to take.

How many times did I have to listen to her strenuously recommend that my husband and I go on a cruise? Why was she incapable of processing the idea that a cruise is not anything I’ve ever wanted to do and probably would never want to do, no matter the frequency of her recommendations? A trivial matter, sure, but that didn’t prevent it from getting annoying. How many times did I have to listen to her tell me to use Epsom salts in the bath?  I bathe daily. I use Epsom salts almost daily. Why could she not remember this simple fact?

She used to be well-versed in astrology (I guess), but in her last years, astrology was a crutch. Oh, it was the new moon, she’d better take it easy. Oh, it was a full moon, she’d better lay low. She was often wrong about what phase we were in, but clearly, it didn’t matter. She’d pronounce, “It’s the full moon, everyone’s going nuts.” I wanted to ask, “Based on what? You’re a shut in.” or “How much lower can you set the bar?”

We could talk about TV and food fairly well. But even there, she was hard to take. My sister had violent objections to certain spices, devoted attachments to certain others. If I heard her utter her disgust about cilantro once, I heard it 5,000 times. She dismissed certain actors because of their foreheads or noses and routinely dissed my current favorite show for no reason whatsoever, simply asserting, “Oh, I can’t watch that.”

I quickly learned not to talk politics with her, but once in a while the topic bled in. Why was I listening to the news, she’d ask sharply, didn’t I know better? And then she’d offer an opinion because apparently she felt entitled to dominate a conversation about politics even though she was spectacularly uninformed. These conversations would be peppered with gob-smacking questions like, “Who’s Mike Pence?” or “Who’s Robert Mueller?”

On the hypocrisy front, my sister offered housekeeping tips. She criticized my methods in a kind of recurring, minor torture. Why was I kneeling to wipe the floor? Didn’t I know about mops and here’s the best one to buy. Have I told you about Alice’s trick with Murphy’s oil? Okay, I’d think, if you’re so keen on mopping, tell me why your kitchen floor looks like a crime scene every time you make spaghetti?

Imagine me at her apartment, kneeling to wipe up a pool of grease — not in judgment but out of concern for her stability — and being roundly condemned for being disrespectful or compulsive or for using Windex and why wasn’t I using a mop?

“I get exhausted just looking at you,” she’d often say.

These exercises served to clarify why I felt overwhelmed and powerless. There was a reason my energies were depleted and depression hovered. They also reminded me why it was so impossible to relate to a friend how things were going with my sister. Where did I even start?

My brother got it, of course. But I couldn’t regularly vent to him out of fear that he might punish my sister by withdrawing financial support. That would’ve been catastrophic for her, and by proxy, me. In all the nine years that I shelled out a little cash for lunch and gas and put my emotional and physical health on the line, it was my brother who supplemented her meager income. Month in and month out, without complaint. It wouldn’t have worked otherwise. Recall: kids in college. And more: if I’d had a financial stake in the expensive consequences of her wastefulness, disorganization, and profligacy, I would’ve lost my freaking mind.

My husband knew her growing up. He was terrified of her. Unfortunately, he bore the brunt of my venting. Poor guy.

 

 

 

 

 

 

 

 

 

 

Delusion is the least of it

She asks me to bring her a hat, gloves, and sneakers so she can catch a bus and go home.

Never mind the catheter or the fact that she can’t bend over to put shoes on and may not fit any of the pants I’ve tucked into her closet at the nursing home. Never mind the code at the exit door or the long hall to reach it.

But it may be that the hospice designation is wrong. What if she was concussed when she fell that Sunday? And what if the three lorazepam that she’s since admitted to taking afterwards made her loggy, incoherent, and depressed her respiratory function, leading the doctor to mistakenly conclude the next day that death was imminent?

Here’s a short list of immediate problems.

Who’s going to manage this transition?

You can’t get rehab while on hospice and dropping hospice would mean losing the care of that terrific team. The nursing home has yet to inspire confidence.

My sister doesn’t do PT. She just doesn’t — even to the point of turning professionals away at her door. I keep telling her she can’t go home until she can walk a little, but this makes no sense to her because she has barely walked for a long time and has kind of managed (not really, but).

Less critically, I started cleaning up her apartment. The newer hospital bed and oxygen equipment were picked up by the lenders immediately. K put the urine-soaked chair into the dumpster. I gave away some of her dishes and — this is big, really big — I filled four leaf waste bags with some (but not all) of her hoarded paper. Threw out: the collection of Kleenex boxes, thirty-plus truvia containers, stacks and stacks of clippings, travel brochures, coupons, and peapod order slips.

The disorder created by paper in her small spaces has been a major source of contention.

She was going to decoupage gifts, you see. I kept ordering her ModgePodge. Glue sticks. But the piles just grew and grew, like ice floes or delta deposits occupying more and more of her precious square footage. No gifts.

So her place is a little empty. A basis for controversy. A basis for more fucking work. You cannot believe how many chairs, hassocks, and stools we have supplied over the years. Her remaining hospital bed is one K and I obtained through the Freemason’s HELP program. She refuses to sleep in it. Has done nothing but complain about it.

I know she’s feeling better because the fiery temper is back. Her virulent projections. The lack of reason. The nasty assumptions and accusations.

If she’s not gonna die any time soon, I’ve got to rejigger this a bit. And maybe a lot. The thought of another major piece of advocacy comes at me like a tsunami.

Friday before the snow

My sister is cheered. The hospital turkey burger was delicious. They’ve dropped talk of rehab. Maybe a Monday release?

I’m relieved too. The earlier call had been spiked with overheard hostility. Taking on the entire staff, she was, refusing PT, objecting to turkey with no mayo.

I boarded the cat yesterday after a full morning of cleaning my sister’s apartment. Maddy the Tuxedo is in the very building where we adopted Jack all those years ago, poor little ballsy Jack whose first act as a family member was to piss all over my elder son’s ankle. At the time it seemed a bit of an outrage. Now I wonder if he wasn’t marking C as his own.

Dog people — what do you make of that?

A pewter sky portends snow. They’re saying some amount, then freezing rain. I’m wishing I’d wrapped our arbor vitae. Maybe tomorrow? I could use yards and yards of fabric from my stash, making the precaution double as a ‘fabric installation’. Then again, I might do nothing.

Meanwhile, I have friends to thank for getting through what at times feels like an ordeal. Thank you.

In closing let me say, I think I finally believe the twitter prognosticators who say the shoe is about to drop. What an avalanche of bad news for the poor fucking fool at the top!

Teeny preview and garbage pick up

Re: Etsy

I’m swearing that this time I’ll be organized. It used to be when something sold I’d panic because half the time I had no idea where the object got off to. Can you imagine?

In this house, with windows everywhere and decorated walls, taking professional-looking product shots is challenging. Not this time! I’m going to dedicate one of the boys’ rooms to photography. Whee! Lights and props out (and left out) is a prescription for ease.

I have a notebook ready for pen and paper notes. No more languishing listings! But more to the point of a well-groomed shop, everything’s gonna be done on my phone. That’s how I know it’s gonna be different. A whole new level of access and attention!

(As readers here might know, I have an inexplicable aversion to sitting at the desktop).

Hospital update: it looks like N might be staying through the weekend. Longer than I expected. While her new subsidized housing is great, with the move she lost the neighbors who used to check in on her cat. Damn!

The nurses and doctors are taking good care of my sister. That’s something to be grateful for.

Lastly, walking Finn an hour ago this happened: a big green monster of a garbage truck barreled past on its hungry quest for abandoned Christmas trees. Usually these trucks leave a malodorous trail. Imagine my delight to smell balsam instead — great heady wafts of it lasting the entire block.

AND, just as that pleasant sensation unfolded at street level, a red tailed hawk flew directly overhead, close — just above the power lines.

How about that?

Transitions

One low point: learning that my sister’s aide quit and that her long time case worker has assigned my sister to someone else.

One balancing point: reading the words, “we refrain from protecting them from the consequences of their actions.”

Three high points: party goer who has been studying racial inequity for twenty years saying, “and that’s why I enjoy your blog so much,” then walking home from Solstice gathering in the rain feeling oh so grounded and grateful and finally, an hour later, K returning from China.

Scripted and unscripted love

After reading Fiona’s post describing the making of her banner for Mo’s project (“I Dream of a World Where Love is the Answer), I decided I wanted my own embroidered “love”. So I stitched the word on a strip of walnut-dyed cloth just below an appliquéd heart. It seemed a good spot.

Have you noticed how often typing on a phone that one mistakenly types ‘live’ when one means ‘love’ or ‘love’ when one means ‘live’?

The quirks of a teeny iphone keyboard dishing up a philosophical message is emblematic of our age — for what is life without love?

To live is to love. To love is to live.

If one is loving, of course.

We were out of town this weekend and I got to witness the tender care my sister-in-law gave her 91 year old father. Did he need anything? Could she read his cards to him? Didn’t he look sharp in yellow and how about walking down the hall a little ways? I reflected on how my manner with my sister in no way approaches such soft, tenderness; how I could NEVER get her to walk down the hall a little ways; how impatient and defended I can be.

There are lots of reasons for the differences, reasons both exonerating and out of my control, but the weekend felt like an object lesson anyway.

Because it was also Kentucky Derby weekend, the guys made mint juleps.


The visits are always short these days and all the more precious for being so.