Category 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.

 

 

 

 

 

 

 

 

 

 

Blue Cross and endings

These mosaics aren’t about my sister, per se — more about clearing out her apartment. The first four pictures show how she lived. The second four, the clean up.

As of this morning, it’s done. Keys handed over. Inspection performed. Cancellation of lease signed.

There were a lot of people at the housing office. Bundled against the cold. Stacking and restacking all the papers they’d brought. Proof of this. Proof of that.

It wasn’t lost on me that to each and every one of them, my sister’s death represented a boon — a chance to move up a slot on the waiting list. My sister was on that list for eight years. Waiting. Wondering. Whenever she’d trot out her conspiracy theories, I’d push back, “Nah — we’re just waiting for someone to die.”

I’m thinking the blue cross in my new quilt piece (more of a doodle than anything) might represent aid coming from unexpected places (a blue cross being a less recognizable symbol of aid than a Red Cross). The bird and flying insects represent freedom. The underlying thought is that it’s too bad my sister had to die for me to be free. It wasn’t the route I would have chosen. And my problems didn’t set it up that way.

In other fiber news, I added an external pocket to my denim travel bag for my phone. Yeah! Also, the pennant I contributed to Mo‘s project, “I dream of a world where love is the answer” has flown home, along with tokens. In particular, I love the little white star. Thank you, Mo!

And lastly, the woman who taught the Indigo workshop I attended in 2014 down in South Carolina, Donna Hardy, posted this on Instagram this week.

I am shipping off a heavy weight cotton rectangle with a simple resist that came from Africa. It’s an honor to be part of this project, too.

PS my eyes feel 90% better already!

The Clip Files, Intro

The support and love that readers offered here moved me profoundly. Thank you! I’d considered turning comments off for the announcement that my sister had died and I’m glad I didn’t know how! Locally, friends have stepped up with legion acts of generosity. Flowers. Dinners. Errands. Packing up the apartment. Prayers. The word that I hear in my head this week to describe friendships is: MIGHTY.

My sister had many compulsions, all of which added up to a disordered life and her premature death at 64. She’d been incapacitated physically for most of the last ten years and morbidly obese for nearly the entirety of her adult life.

Her need was bottomless, her rage explosive, the triggers countless. There were many times over the last nine years when I didn’t think I would survive her. But I offered up a battered loyalty.

Relating to my sister was so crushingly difficult that the demands placed by her remaining mess feel very nearly trivial.

Her clip file, however, poses special problems. For one thing it’s huge — the equivalent of ten banker’s boxes? Fifteen? It’s hard to tell yet, because I keep finding more.

The collection was housed in boxes that lined the walls and spilled into her teensy living spaces. Also in cardboard lids, recycled Kleenex containers, drawers and scattered on table tops. Bills and medical statements mixed in. Foil packs of albuterol buried. While fetching her things (coffee, lunch, address book), I constantly tripped over some box or other. Consolidation, not allowed. I felt a constant, smoldering resentment of all her fucking paper.

So here’s one of many contradictions: how could a visual person, a former artist of some promise, someone still interested in images of nature, interior design, archeology, ancient religious iconography, ALSO be a person who let her living space look like a literal dump?

(For the first three or four years in Salem apartment Number One, at the outset of every visit, my sister would make the same cheery-but-shame-filled queries: “Doesn’t it look better? Can you tell I’ve made progress?”

Me: nearly speechless with disbelief, sputtering some lame agreement).

So you’d think I’d be standing at the recycling bin, chucking it all with a flourish. A big exhalation of relief. Garbage at last! But here’s the second contradiction: I’m not.

The above assemblage represents just a third of the images she pulled while at the nursing home. She couldn’t sit up. Had no scissors. Knew she was dying. But she kept at it.

As for myself, being a collage artist who also sometimes uses images as writing prompts, I view these papers as a treasure trove.

My sister’s legacy.

The second they assume an ugly weight, which might be tomorrow, I’ll recycle.

But not yet.

Grime and fatalism

After ten years of not exactly saintly but certainly thorough and effective advocacy for someone with an unfortunate cluster of problems, your vocabulary changes. Words like ‘impairment,’ ‘handicap,’ and ‘disorder’ become second nature. You may not like their clinical sheen, but since they’re far better than the words applied during a tempestuous childhood, you use them. The ugly echoes: ‘fat slob,’ ‘fucking nuts,’ and ‘impossible.’

But today, a new word supplies perspective and it is GRIME. Sorting your sister’s beads from the failed parent-financed venture in Rockport, you dump them into plastic trays, eager to chuck the sticky plastic bags. They are so GRIMY. You use windex on the storage boxes, not wanting to know the source of one lid’s ocher spatter (cat puke? ramen stock?) The tools of glass-cutting and jewelry-making offer sad testimony to squandered talent — cruddy, rusted and neglected as they are.

Restoration requires, among other things, sand paper.

I had to use a dry toothbrush to clean these three little felt gifts.

Indolence, apathy, compulsive consumption of low brow television and food, the repetitive shooing of most people away, and the manufacturing of insult and victimhood with others, it turns out, leave a grubby residue.

You will need to remember this.

When you’re telling yourself that it wasn’t enough to supply her with a brand new pack of jewelry findings — that you should’ve figured out how to get her crafting as well — you’ll need to remember this.

And you’ll need to remember the virulence of her refusals. Her knack for turning any suggestion that required effort on her part into evidence of your deeply flawed character. Recall, just for one second, her lengthy diatribes about your failure to understand. Your lack of compassion. And how the screeching had more in common with hurricanes or tsunamis than with speech.

You learned not to make the suggestion. And to skedaddle.

You have long recognized the violence of applying “shoulds” to others. Perhaps this difficult passage will teach you to extend the same courtesy to yourself.

As to fatalism: think I’m gonna start taking my social security. At 62, I am now the age my mother was when she died. I’ve outlived my father by eight years. My sister is receiving hospice care at 64.

My parents were smokers and my sister has health issues that I don’t share, but still…

The monthly payment won’t be a lot, but for someone who hasn’t earned a significant salary since the early 90’s, it seems a small fortune.

Lastly, look at this guy. With temps in the mid-30’s and beautiful sun, we enjoyed what felt like a balmy walk this morning!

The Ninth Hour, McDermott — micro review

Last year I read a murder mystery called “The 9th Hour,” and was puzzled when I kept hearing praise for it. Well, the praise was intended for Alice McDermott’s book, “The Ninth Hour.” My mother-in-law recently lent me this novel, McDermott’s eighth, and it is indeed praiseworthy.

Maybe not the best book to read while helping a gravely ill sibling with her toileting, but not at all worthy of Finn’s unenthused response, above. It takes place in the Irish Catholic world of Brooklyn in the early part of the last century (which happens to be where and when both my parents’ lives began). It’s about love, survival, the judgment of religion, and caregiving.

The stellar contribution the nuns made to the community stood at odds with their notions of damnation, notions that I grew up with and found weird even as a child. Why, for instance, are people who commit suicide precluded from grace?

At the age of eight, even if I didn’t know why, I was suspicious of the story about a woman who was anointed a saint after being raped in a cornfield. Really? And didn’t Father Chamberlain have a lot of nerve hollering at a church full of second graders that we were all “on the road to hell”? Seriously, he was a prick. I wouldn’t have used that word then, but I most emphatically do now.

Of course, none of this stopped me from wanting to be a nun back then (though to be honest, I think that had more to do with my pretty, gilt-edged missal and crystal rosary beads than anything else). All of this has fallen away but I still say my Hail Mary’s leaving and landing on the tarmac in a jet.

The daughter of our main character is practically raised by the nuns when her widowed mother goes to work as a laundress in a nearby convent. So it comes as no surprise when she thinks that she should follow the religious path. However, things are not so straightforward.

Much of the story explores her coming of age between two bookends — the surprising adaptations her mother made to widowhood and the ordered life of the sisters.

The nuns’ brisk and efficient approach to shit-stained linens and invalids is to be admired. Burdened by the dirty sheets of my sister that week, I actually read a few of these scenes wistfully. If only…

One take away from the novel is that while many social agencies have stepped into the void left by the withdrawal of the nuns’ services, no one has really taken their place.

This is disjointed and for that, I apologize. But here is a very good review in The Guardian: McDermott’s The Ninth Hour: the heartlessness and consolation of Catholicism.

Sometimes joy is simple

Driving home from Salem, I assembled the ingredients in my mind: basil on the window sill, garlic in the bowl on the counter, Parmesan in the cheese drawer, pine nuts in the pantry.

Pesto? Really? There may be a foot of snow on the ground, but — yes — I just made and devoured a heavenly bowl of pasta with pesto. Since this dish usually appears on my table in the hot months and almost always with some element of planning, I felt a little surprise in its coming together. Joy, even.

It’s possible that a new status quo is emerging in Salem, though it’s a little hard to tell. Today, my sister was alert and clear thinking, with one exception.

“Will you be taking the Berkshire spur home?” she wanted to know.

No, I told her. Route 128 all the way.

For some reason she thought we were in Western Mass.

PS I do know not to house fruits and vegetables in the same container. I think K must have put the onions in the fruit bowl.