Category Archives: caregiving.

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.

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.

Hospice

Been working on piecing a mid-sized Village Quilt in between calls from my sister’s hospice team, her friends, and the nursing home where she now resides. A whirlwind. Way too much to relate. Nobody knows how long she has, and a recent rally confuses things, but she can no longer be alone.

It’s been pretty day by day here. Someday I’ll write publicly about more of this. How to describe it all? Eleven February trips to Salem, now with meds and my mouth guard on board. Just in case.

Last week after the determination was made that she could not be alone, I spent a horrible night on her floor. Not a clean sheet or blanket in the place on account of her incontinence. The smell of urine distracting. Her insistence that the TV stay on all night, not to be argued with.

K was in Moscow and arrangements had to be cobbled together for the dog. More stress. (Finn seems to have survived his first night alone in the house by hiring the dog walker for an extra walk at 8 pm.)

Fifteen firefighters assisted my sister in three days — five on Sunday to help her up from a fall; five on Tuesday morning to get her into her new hospital bed; five on Wednesday to get her onto a gurney to take her to a nursing home.

I knew I could never spend another night like that one. By then it was clear that she needed more that 24/7 care because there would be many moments in a day requiring three or four people. In the end, that made the decision easy.

On that awful night, she demanded to get out of bed at two a.m. Really argued. Picture me standing at the bedside, worried that someone who weighs almost three times what I weigh would shove herself forward and take us both out.

Highest of praise for the hospice team! They had a bed for her at a facility within 12 hours.

The hospice team is amazing. They’re skilled caregivers who are trained to address the needs of the whole family. After nine years of being rendered invisible in the face of my sister’s need and pathology, it’s disorienting. “Wait, what? You’re asking how I’m doing?” One of many signs that shows how difficult it all has been.

My sister says she is not scared. Believes that there are way worse things here on earth than could ever be in hell. Any anyway, she believes everyone goes to heaven. Never mind the inconsistencies — she has some kind of faith and that’s a good thing.

Today, she talked about rehab and wanted to know if I’d given all her things away already?

A process.

Her cat is here. Poor thing hides under C’s bed or in the laundry closet. The dog wants to kill her and would, given half a chance. No joke. But, one thing at a time. And anyway, it doesn’t feel right to give the little tuxedo away while my sister still lives.

Meanwhile, the news is a tempest.

Tomorrow my standing writing date will be a TV viewing date instead. Michael Cohen. I’ve made cookies.