Tag Archives: Hospice

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.

Piecing, falling, tidying

Patchwork. The stalwart metaphor for bringing disparate pieces together. This is Deb Lacativa cloth and one of my felt houses. I hand-pieced the house’s surround this time instead of what I usually do, which is to plunk the house onto a surface and stitch it down. This made the parts more coherent, but it was awkward to do.

More to figure out.

There’s always more to figure out. This week: a meeting with my sister’s team. In spite of strenuous suggestions from me, no weekend help materialized. K and I went up yesterday. Tidied. Tended. Tried to help N into her new bed (failed). Paid a guy in the building to bring up her Sunday Times (yeah!)

But she was alone today. Not answering the phone.

There are seven reasons my sister might not answer the phone:

1. She’s on the phone, 2. She’s dropped it and can’t pick it up, 3. She’s neglected to put it back on its base and drained the battery, 4. She’s asleep, 5. She’s busy in kitchen or bathroom, 6. She’s fallen and can’t get up, 7. She’s dead.

For years, her failure to answer the phone has produced annoyance laced with mild panic. Voice mail or messaging problematic, for some reason. Once after two days (during a much busier era when I couldn’t just dash up there), I called the police.

This morning after four attempts over two hours, I was really worried. Debating whether to head up there and when.

And then, I got word.

It was #6. She’d fallen and couldn’t get up. Lifeline called 911. Ambulance guys arrived (again). Helped her up. Helped her back into her chair.

Sigh.

Remarkably enough, her sense of humor is intact. She tripped on a cat bowl and managed to, as she put it, “get Kibble up my ass.”

Somehow, the Times ended up on her bed during the tumult of rescue (yeah!)

With all this happening, no wonder I like the control that tidying up offers. This weekend, I tackled socks. Though I originally resisted Kondo’s advice on sock storage, I went with it and guess what? Folding IS better than rolling. I offer you a before and after.

Felonious intent

Hither, thither and yon. Now I’m 62. Three birthday meals are plenty! Earrings, a bracelet, a length of shibori ribbon, and a felted scarf. One memoir. One phone call. A check. Tulips and chocolate. I’d say it was a banner year.

Oh, and I’m to order a dress and pair of shoes, courtesy of my sister. She insists. The shoes are pointy and printed with flowers. I love them. The dress is faux patchwork, but not in a cheesy way.

In other news, life pounds along. Hospital bed delivered today. New aide seems to be working out. Need for weekend help noted. Bank account blocked and funds transferred to new account. (“YOU GAVE THEM YOUR ROUTING NUMBER, TOO?!”) Online predators promising computer help. She didn’t know. We’re all of us, I think, at one time or another so desperate for tech help, we might do something equally stupid.

The misstep had me at Salem Five Bank this morning, power of attorney in hand. I was desperate to pee. Angel the clerk suggested that I go to CVS — contacting legal would take a minute anyhow. But lo! CVS toilet out of order. I think I yelped. Nearly dropped the popsicles and antihistamines gathered for my sister. We’re talking two cups of coffee. Almost an hour in the car. A bad stretch of bumpy road approaching Essex Street. On my way back to Salem Five, I looked around for possible places to relieve myself. A dirty but tall snow bank. A dumpster screened by a fence. I’ve peed in less dignified places.

Back at the counter, I asked Angel again. “Please? So I don’t have to pee behind the snow bank?” I used the word ‘mercy,’ but didn’t think to tie it to her name.

Angel was having none of it. She said, “The problem is we’d have to walk past the vault.”

Does comedy improve bladder function? Or heighten patience? Because I was suddenly fine.

Picture it: me, in a dusty black down coat that drapes to my ankles. A head of grey hair. Newly 62. So short my eyes are nearly level with Angel’s name plaque.

There must’ve been felonious intent written all over me, right?

All at once, I could imagine it. The most devious of heist planners sending someone precisely like me to plead for use of the toilet, playing the old lady card, just to gain access to the vault!