Discharge

The weeks leading up to discharge were a flurry  of Amazon orders, phone calls, coordination touch points: nursing home social worker, durable medical equipment vendor, wheelchair van, disposable briefs, under pads, wipes, relatives, home care agency.

There were visits with Mom where we tried to assuage her anxiety about all the moving parts coming together, unsuccessfully. "It won't happen," she'd say.
"It will. It's just another complicated project like the ones I do at work. Don't doubt us - we don't plan to let you down."
Her realization: "You never have."

Weekend 1 was split between a Saturday shopping for all the items that hadn't been ordered from Amazon  (linens and bedding, mostly) and a Sunday - the hottest of the summer to date - spent purging closets, moving obstacles, and generally preparing the house for her return. Five adults and a teen, sweating, hauling, reorganizing in preparation for the delivery of a hospital bed and Hoyer lift, making clearance for a wheelchair. Himself measured and drew and designed the wheelchair ramp to be built.  We made room in closets for medical and personal care supplies, our original plan to remove the table and use the formal dining room for storage nixed.

Weekend 2 was discharge day.  The wheelchair van is to arrive at 10am. Himself, The Boy and I arrive an hour before, intending to pack up her belongings and make sure she's at the curb on time. We find her still in bed, unwashed, still in her pajamas. I try not to telegraph my anxiety as Himself and The Boy carry her packed bags to the truck. I keep trying to send them ahead, they insist on waiting for the van. With the help of The Best Nurse Ever, she is washed, dressed, lifted into her wheelchair and discharged with 5 minutes to spare.

I board the van with her, still trying to send the truck ahead - we need Himself to be at the house with my brother when we arrive to get her up the temporary ramps into the house. They end up behind us, caught in accursed summer traffic headed to the beaches, while our savvy van driver gets us ahead of the pack of cars. Pulling down the driveway, we see Dad sitting on the front step, fistful of Black Eyed Susans clutched in his hand, waiting for his bride of over 50 years.  Bittersweet to watch him walk toward the van, look at the flowers, and put them down, forgetting why he had them. 

My brother and Henry get her in the house with help from the van driver. Himself and The Boy pull in not long after and unload her bags. My brother and I wheel her through the house, noting what's changed.  "The bookcase - the one from the spare room is in the living room now. We'll show you why in a bit.  Yes, the kitchen island is gone, there wasn't clearance for a wheelchair on either side of it. No, we didn't get rid of the stuff in it, we found places to put it."

Her first comment upon seeing her room, with me so proud of the coral coverlet and matching pillow sham, trying to make her as pretty a bed as possible: "This won't work. The dialysis machine needs to be close to the bed so I can get up to see why it's alarming at night."  Crestfallen. Hurt. Sad, that she doesn't recognize, even still, that she won't be getting out of bed at night, that she'll need to call for her caregiver, a woman whose arrival we await at noon. 

<aside> Through all this, her inability to transfer from bed to wheelchair means she is restricted to using a bed pan. My brother - who can hunt, skin, gut and butcher an animal to feed his family - cannot fathom the concept of having to help his 82-year-old mother use a bed pan. This is okay - we all have our bright lines, and this is his. As Khaleesi would say, "It is known."  </aside>

As we survey her room, and I try to point out to her where her supplies are stored she announces with conviction that we'd best be prepared to try the Hoyer out, because she needed the bed pan. The look of horror on my brother's face was likely mirrored by mine. This, we were not prepared for. We could not call on Henry, for fear of my father's wrath. It was all on us.  We managed, but there was a mess to clean, and lessons learned, and my brother at some point tapped out to regroup, which was fine. When I needed him back, he came. 

Her caregiver arrived at noon. The caregiver saga is a story for another post.

In the meantime, my brother and Himself began framing the wheelchair ramp. The Boy and I emptied the pantry closet to organize, inventory and purge expired items. This project was met with no small amount of upset by my mother, who was as aghast at what we were getting rid of as I was at the amount of instant potatoes, gravy and Jello she had.

Grocery list was worked up with Mom's help and the caregiver's. The Boy and I took off to pick up all her prescriptions and the food, only to be stalled at the first stop. There were questions on the meds. She'd been prescribed injectable insulin but not been trained to use it. The pharmacist called the nursing facility and lambasted them. We settled on a plan, left the meds where it was cool and headed for groceries. The Boy was immensely helpful - a consistent theme as I've gradually headed down this path of mental and emotional overload - and we shopped successfully, collected the meds and made it back to the house.

From there, it was unpacking her bags, sorting dirty from clean from supplies, washing soiled linens and dirty pajamas, storing it all, ensuring that all the supplies needed were readily accessible in her closet, that all was as I felt it should be.  And then...it blew up.

Tired, drained, constantly questioning whether I've thought of everything, if I'd missed anything, was the thing I missed something critical, I sat down in the living room to take the tags off the new, larger clothing I'd bought her.  She snaps at me, "What are those?"
"Clothes, for you. You said the ones you had in there were too small."
"You need to stop spending money," says the woman who would've given a gift to every  nurse and every aide in the nursing home had it been in her power to do so.
"I want you to have clothes that fit you, Mom. I want you to be able to have company and put on something other than pajamas."
Inarticulate grumbling. What is the saying? No good deed goes unpunished.

She is constantly interrupting my work for inconsequentials. "Look at the stereo lights. Why are they like that? Why are they on?"  "I don't know, but I'll look at them when I'm done here." "Why are you so abrupt with me?"  "Maybe because I'm tired."  She becomes snappish, criticizing and complaining and demanding. Telling my frail father to get her this, take her that. I tell her please, don't ask Dad. He's stumbling and yet eager to do his duty to her and get what she cannot. She puts him at risk, falling immediately back into the old patterns. He withdraws, speaks when spoken to, stares off into the distance.

I hit my wall, the trigger so small thing I can't even remember, and go outside sobbing. My brother has been gone for an hour, Himself still working on the ramp. I sit there and vent and try to pull myself together, calling my brother for a sanity check.  While I'm out there, the visiting nurse calls. She will be by the next day, we discuss the case, she's seen my mother before and knows she is not the most cooperative patient. We strategize.

I go back in, I tell my mother the nurse will come Sunday and she will show her how to use the injectable insulin and I will get her a new glucometer since hers hasn't worked in months and she refused to get a new one. She snarls back. "I am NOT using that insulin, I want the pills I had before and I am NOT testing my blood all the time, I don't NEED to do that!"

She just pulled the pin on the grenade.

I lose all patience and sanity, and tell her the things she likely needed to hear. That this was her one and only chance to make being home a success. That the alternative was a nursing home, permanently. That she was behaving like an ungrateful brat, not recognizing how hard we had worked to fulfill her desire to come home, at great emotional and mental cost. That her failure to address the arthritis in her knees led to her limited mobility; her failure to adequately manage her diabetes led to kidney disease; her failure to manage her kidney disease led to dialysis and she was no longer permitted to tell us what she was and was not going to do, or we would scrap this whole effort and send her back to the nursing home.  There was yelling, there were tears, and there was hurt. But it came out. And then I retreated.

We ended the night with her apologizing when I came back, kissing her and telling her I loved her...but that she had to understand that we were killling ourselves trying to do as right by her as she had done by us for so many years. 

It was a 12 hour day...and then we went back on Sunday.