No Dignity

So, it turned out that winning the appeal only bought her two extra days at the SNF. She’ll be discharged on Saturday. I was all set to appeal again, but what I found when I stopped by after work yesterday changed my mind.

It was dinner time, but she was lying in bed in a borrowed t-shirt, no pants and a soiled diaper. There was feces on the bed sheet. I went running for a nurse, who sent a CNA to take care of it. He (the CNA) also went to the laundry to find her pajamas, returning with the set that I bought her for Christmas. The pants were soiled and I said “Oh, these are still dirty.” He told me no, they’d been washed – it’s a stain. They were in perfect condition when my niece brought them over there a few days ago. Sigh. Though they quickly got her cleaned up when I asked, I wondered how long she would have been left there in a soiled undergarment if I hadn’t come to visit.

Tonight I got there about 5:45, a bit later than usual because I had a chiropractor appointment for the pain I’ve been having in my left shoulder and down my arm. She was lying in bed with the dinner tray untouched on her table. When I asked if she wanted to sit up to eat, she tried to move and winced with pain – telling me her private area was so sore that it hurts to move. Again, I ran to the nursing station. It was the same male CNA as last night who came, and he told me she’s been having diarrhea since yesterday and she says it burns, and it’s clearly aggravating the rash on her backside and between her legs. I asked if they were doing anything to treat the diarrhea, but he didn’t know. Her adult diaper was, again, soiled. The CNA got her cleaned up and put some ointment on the rash — and watching her wince with pain and grab the bed rails while he applied the ointment made me feel as if I was standing by and watching her be tortured.

I asked the nurse on duty for her section if they could give her something for the diarrhea that the CNA reported has been happening since yesterday. She said she would have to talk to the doctor tomorrow, but in the meantime she would hold the stool softeners. Yep, you read that right — she’s been having liquid bowel movements for over 24 hours and they were STILL giving her stool softeners! Y’all should admire my restraint that I simply agreed that this sounded like a good idea and didn’t lose my temper.

Thankfully Mom did feel enough better with the ointment that she was able to sit up and eat a little bit of her dinner, and the CNA was nice enough to take her plate away and rewarm it — since by then it had been sitting out for over an hour. When I left she was cheerfully finishing the last few bites of her banana pudding (the only part of the meal she finished) and looking at the book of word search puzzles I brought for her.  But I will be so, SO glad to get her home on Saturday to a place where she gets the personal attention and care she needs…. and, more importantly, a place where they truly CARE and manage that care in a way that still affords her some dignity.

 

 

We Persist

It’s been a challenging few days. Friday evening I arrived at the nursing center as the nurse was dispensing Mom’s evening meds, and I asked her to run through the med list with me — mostly to make sure Mom is getting her dementia meds. I was shocked when one of the medications she listed off was sertraline (brand name Zoloft), because Mom hasn’t taken that for over three years. I went to talk to the nursing supervisor to find out who had ordered that medication and learned it was started at the hospital. They were giving her TWO antidepressants at the hospital, he told me — Zoloft and Trazadone — but they discontinued the second when she was discharged to the SNF.

I knew something wasn’t right. She’d sounded unusually lethargic and depressed when I called on my lunch hour that day, and was saying things like “I just want to give up” — utterly out of character for my mom, who is nearly always cheerful. When I got home, I checked the discharge paperwork from the hospital and saw that they’d diagnosed her with Major Depressive Disorder (MDD). Umm, WTF?! She may have been sad, lonely or confused while in the hospital, but she most certainly does not have major depressive disorder.

I couldn’t do anything about that over the weekend because the nurses needed a doctor’s order to change medication. Yesterday I worked from home so that I could go over there first thing and talk to the physician’s assistant on staff. She wasn’t in yet, so I explained the situation to the social worker, who promised to relay my concerns to the PA and have her call me. I went home to get some work done and dropped by for another brief visit with my mom at lunch.

When I got a call from the nursing center in the afternoon, I assumed it was the PA calling in response to my request to discontinue Zoloft… and I was stunned when it turned out to be a case manager calling to tell me that the Medicare HMO was only going to cover three more nights and they would need to discharge her on Thursday. Wait, what? Will she get Home Health services? No Home Health, the case worker told me. The determination of the insurance was that Mom wasn’t making progress with her therapy, so they weren’t going to authorize ANY further physical or occupational therapy.

I felt like I’d been kicked in the stomach. Before she went into the hospital, she was ambulatory — getting around her home with a walker, though she’d started to need a wheelchair for excursions — and could transfer with minimal assistance.  Now she practically has to be lifted from the wheelchair back into bed, and they wan to send her home like that? How the hell is she EVER going to walk again without physical therapy?

The case manager and the social worker at the nursing center encouraged me to file an appeal of the denial of coverage. They gave me the phone number of the appropriate agency, and the social worker talked to me at length to document Mom’s baseline functionality. I was given to understand that winning the appeal was unlikely and that we might need to appeal several times just to get home health visits covered. I worried that we wouldn’t even get an answer on the first one before they kicked her out. But I filed the appeal, and I started gathering the information I will need to file a grievance against the hospital for misdiagnosing my mom and prescribing an unnecessary and potentially harmful medication.

Just before 5:00 pm today, I got a phone call from the woman who handled my appeal. I was braced for “We tried, and you can always appeal again.” When she told me something different, I was so surprised I had to ask her to repeat it. “She won!” she said, sounding a little bit astonished herself. “She won the appeal. Do you know how unusual this outcome is?”

I don’t know for sure, but I think this gives her at least another week of coverage for inpatient rehab at the nursing center, until the next weekly plan of care meeting happens next Tuesday. And I’ve been assured that when she is discharged, she will get home health PT. Meanwhile, the SNF physician agreed to step her down off the Zoloft, starting with a half dose today. I’m hopeful that she’ll soon be feeling more like herself.

And now I just need to get through my last two days on the job and an exit interview on Friday morning, and I can be there to keep a closer eye on her progress. I’m tired. Mom is tired. Nevertheless, we persist.

Learning to trust

All the astrologers who warned that the “eclipse season” this month was really going to shake things up were apparently not kidding around.  Just a couple days before the lunar eclipse on August 7, I learned that the position I’ve held with my company for almost 7 years is being eliminated and I’m getting laid off at the end of the month.  There’s a decent severance package, so I’m in the fortunate position of being able to take a little time to rework my resume and consider this unexpected change in career direction without needing to panic about how to pay rent… but I was still reeling a bit from the shock when…

Two days before the solar eclipse, I got a call from the owner of my mom’s care home. I was up in Portland visiting friends and we were in the car driving to meet some other friends for a fun event when my phone rang. When the owner of the board and care told me she had to call 911 for my mother, my stomach dropped to somewhere around my feet. I thought she was going to tell me my mom was dead or dying, I truly did. After learning that it wasn’t (necessarily) something immediately life threatening, I explained that I was out of town for a few days and asked her to call my niece. When my niece texted me that she was also out of town, I texted two other friends who have helped with Mom in the past. They were also out of town. As luck or fate would have it, ALL of my usual “go to” people were out of town that weekend;  even the pastor’s wife, the only  person from Mom’s church for whom I have contact info, is on sabbatical. That’s when I started melting down. Thankfully I was with two of my oldest and dearest friends, who let me have my freak-out and then calmly helped me start problem solving.

I take the responsibility I have for my mom’s care very seriously. I know she trusts me, that she now  looks to me for the kind of comfort and security she gave me when I was a child. It was absolutely unacceptable to me that she was alone in a hospital ER for hours, to say nothing of the fact that she wouldn’t be able to answer any of their questions about her medical history. But the hospital had been given my name as emergency contact and they reached out to me when they needed answers.  And at my friend’s suggestion, I reached out to the hospital chaplain, who kindly agreed to check on my mom in the ER and reported back to me that she was calm and lucid. The pastor’s wife forwarded my email to someone else from the church, who started a prayer chain and organized two volunteers to visit Mom at the hospital.  And none of it was ideal, but it was OK. Mom is OK, or she will be.

She was admitted to the hospital after nearly 7 hours in the ER, with a diagnosis of pneumonia and pulmonary edema. She had fluid in both lungs and was having difficulty breathing, but quickly started improving once they started her on oxygen and antibiotics and increased her Lasix dose. I spent a lot of my time in Oregon on the phone, managing her care as best I could long distance and keeping the family updated.

After three nights in the hospital, they were ready to discharge her to skilled nursing rehab. I was supposed to be home in time to manage that in person, to get her discharge instructions and be with her for the transition, but my flight was three hours late and the hospital had already made the transfer arrangement. I was pretty unhappy about that, and am still pretty pissed off that they let a dementia patient sign off on her discharge instructions and didn’t go over any of it with me via phone, but… again… while it wasn’t ideal, it was OK. She survived. I survived. We’re both feeling a whole lot better today.

I know that there’s a lesson in the confluence of these two events, losing my job and my mom having a medical emergency when I was out of pocket. I wish I could sum up that lesson neatly in a sentence or two, but right now all I know is that it’s about letting go of control and learning to trust.