A Day of Appointments

This morning Mom had the first of several follow-up doctor’s appointments, this one with her primary care physician, Dr. G. It was my first time taking her out with the transfer wheelchair and oxygen tank, and what an adventure we had!

When I loaded the portable oxygen tank into the backseat of my car and attached the tube, I noticed that the tank was reading about 1/4 full. In hindsight, I should have asked right then for the spare tank — but not being familiar with oxygen, I naively thought that it would last the two hours until we got back. By the time we got to the doctor’s office (25 minutes later), the meter on the tank was in the red zone and Mom was complaining that her chest felt tight. At about the same time, I discovered that I’d left Mom’s purse (with the handicapped parking placard) back at the board & care. Cue panic. Well, not quite panic, but anxiety tinged with intense frustration. I couldn’t figure out how to get the foot rests back onto the wheelchair (don’t ask me why the caregiver removed them in the first place) and a nice man was patiently holding the office door for us, so we went on without them and Mom just had to hold her feet up. We got inside, I checked her in at the front desk (and asked them to please not let my car get towed because I forgot her placard), and then I texted the owner of the board and care to ask if she could possibly drop off the second oxygen tank.

When the nurse brought us into the back, she tested Mom’s oxygen level and it was 88. Not too bad yet, but they want it to stay above 90 and I was glad that the full tank was on its way. When the caregiver arrived with the new tank, the front office manager was kind enough to show me how to change it, so that next time I can just bring a spare and change it myself if needed. The doctor went over the discharge paperwork from the hospital and SNF, reviewed her medications, and listened to her heart and lungs. He said he didn’t hear any congestion in the lungs, which is a relief. Mom got her flu shot and some blood drawn for labs, and we headed home. Pulling the oxygen tank while pushing a wheelchair is tricky, but again a kind stranger stepped up to hold the door for us.

I dropped Mom off at home and sped to my yoga studio, arriving just in time for Yin Yoga with my favorite instructor. And I don’t know when I’ve needed a yoga class more! I was SO tense from the morning’s stressors, but it melted away over the course of an hour doing gentle stretches and heart opening postures. I walked back to my car with a smile on my face and a spring in my step. But by now it was 2:15 pm and I was starving, so I grabbed a chicken salad to go from a nearby Trader Joe’s and ate it in the car while I drove back to Mom’s place — because the day wasn’t over yet.

Mom had her physical therapy evaluation, and it went well. Steve, the therapist, looks at his clients holistically with the goal of improving their full function as much as possible. He took her medical history from me, getting a complete picture of her living situation and level of function before she went into the hospital, and he made some recommendations. He wants her to only use the walker with four wheels and the seat, rather than using the two-wheel kind around the house, because he says that’s making her more dependant on the walker than she should need to be. The four-wheel style moves more smoothly and she can’t lean on it the way she does the other one, so she’s doing the work of walking and just using the walker for balance.  OK, we’re all on board with that. And he wants me to buy her New Balance athletic shoes to give her ankles more stability. OK, I can do that.

The third recommendation is going to be trickier to implement, but it’s probably the most important one. She has been spending way too much time in bed, and both Steve the Physical Therapist and Dr. G said that this will make her more susceptible to fluid building up in the lungs. Especially while she’s recovering, Steve emphasized that she should never spend more than 9 hours in bed at night and should be out of bed and sitting up (not reclining) as much as possible during the day. I checked in with Maria, the head caregiver, when he left. They’ve been putting Mom to bed at 7:30 or 8:00 pm, and she’s been getting up around 7:00 or 7:30 am — so we’re looking at up to 12 hours in bed each night. She’s simply not going to get up before 7:00 (frankly, it’s a small miracle that she’s been getting up before 9:00), which means they’re going to need to keep her out of bed later in the evening. And this is a problem because the live-in caregivers aren’t “off the clock” until all the residents are in bed, and they have to wake up around 5:30 am to start their care day, so they WANT to get everybody in bed early. I got Maria to agree not to put Mom to bed before 9:00, but I’m not even sure how long that will last. And if she sleeps until 7:30, that’ll still be over 10 hours in bed. But I don’t know what the answer is.

The PT will be back on Friday morning to start working with her. We see the neurologist on Thursday and the cardiologist on Friday afternoon. It’s only Tuesday and I already need a weekend! I don’t know how the hell I’d be managing this if I was still working full-time, and I’m really feeling the timing of this layoff as a blessing right now.

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Back to (almost) normal

Mom was discharged from the SNF on Friday morning. Once I’d handed everything over to the caregivers and gone over the discharge paperwork with the owner of the board and care, I went home and collapsed for a couple hours. Yesterday I dropped by briefly in the morning when the home health nurse came to evaluate whether Mom will need skilled nursing services at home, and Mom was disappointed that I didn’t stay long. So I promised to come back for a longer visit today.

She was finishing her lunch when I arrived around 1:30. Her appetite seems to have returned, which is encouraging, and she said she was feeling good. I brought out the Scrabble game; and although she started out by saying she wasn’t sure she’d remember how to play, it came back to her quickly.  We played two games and she beat me by over 30 points both times! She seemed like her old self.

When I was putting away the game, she looked around and asked “Whose house am I at?” I told her it’s the house where she lives and she looked surprised. I pointed to the two caregivers who were working in the kitchen and asked if she recognized them, and she said yes and the house looks familiar too, “but I’ve been visiting around so much lately, I think lots of places look familiar.”

This is why traveling is hard for people with dementia. Staying in different places is disorienting and they can lose their connection with the place that is home. Today I know for sure that I made the right decision in discontinuing any travel with Mom, and I hope she’ll get to stay in her cozy board and care for a long time. I look forward to many more games of Scrabble.

Grateful

Filled with gratitude tonight. I am grateful for my aunt and uncle, who drove all the way from Ohio so my aunt could see her sister… and grateful that the timing of their visit meant I could go do an 8-hour workshop on Sunday and not be distracted by worrying about Mom. Aunt Alice took this picture of us.

Mom Sep 3 2017

I am grateful for my niece, Sarah, who has visited her grandma several times (both at the hospital and the SNF), so that I can have a break. I am thankful for the friends from church who visited her in the hospital while I was away in Oregon, and for all the family who have called or sent cards or flowers. I appreciate my friend Joy who visited today and brought a new kind of nutrition shakes for Mom to try, since it’s still a struggle to get enough calories in her. Also Joy’s visit meant I could take a couple hours off and go to my restorative yoga class, which I really needed!

I am so, so grateful that Mom is finally feeling like herself again — that she’s not only physically stronger today, but has less anxiety and improved cognition. Today was a good day. She was up in the wheelchair for much of the day; she got a shampoo, cut and style by the beautician who comes to the facility every Wednesday; and when I came back around 2:00 pm she was able to tell me everything they’d served her for lunch, and also talked about Sarah’s visit the night before. So much of the time Mom doesn’t remember that someone visited ONE HOUR before, so that she was able to recall Sarah reading to her last night from her book of daily meditations on scripture feels like a small miracle to me.

It also feels like a miracle that even though some staff member screwed up and forgot to put her back on oxygen when returning her to her room (she was without oxygen from at least 4:15 pm until a little after 7:00, when I arrived to question it), she didn’t have trouble breathing and remained cheerful and talkative… and when I asked them to check her oxygen level, it was still at 94.  I’m so glad for this sign of her returning health that I’m not even angry about what could have been a dangerous error. (Well, anger might come later. A complaint will definitely be made.)

Right now, I’m just grateful.

Every time I go away

The nurses all agree that Mom needs to spend more time out of bed. Sometimes she’s amenable to this and other times she just wants to rest and gets annoyed when the CNAs try to get her up. Yesterday I spent a couple hours with her in the morning and then went back around 2:00 pm. She had insisted on going back to bed after lunch, the CNA said, but we got her up again by tempting her with the root beer floats they were serving in the dining room.

She enjoyed the float, and I sat with her for a while, playing Words With Friends on my phone while she did her word search puzzles. Half a dozen other residents in wheelchairs were watching the movie on TV. When I needed to leave (around 3:30) to get ready for a friend’s 40th birthday party, I felt a little uneasy about leaving her there… but I knew if I took her back to her room she’d just lie down again, so I told myself she’d be fine for the hour or so before they would have brought her in there for dinner anyway.

This morning I got to the nursing center around 11:00 and she’d already been taken to the dining room for lunch. She was flipping through an old issue of People magazine when I pulled up a chair and sat next to her. She told me she “must have had a dream”: “You and I were eating in here together and then you had to leave to go somewhere, and suddenly it seemed like I was in the middle of something, that I wasn’t ME at all…” She floundered a bit to explain, concluding that it felt like she was a character in a story, and like she was watching the story unfold. I told her I often have dreams like that, and we moved on to other topics. But then she brought it up again, asking me to please make sure to take her back to her room before I leave because “I get sleepy and sometimes there’s no one around to take me back.”  A little later, when I started to get up to do something, she grabbed my arm and said “Don’t leave me!”

I don’t know if she dozed off in her wheelchair after I left her yesterday or what, but from now on I’m listening to that gut instinct that tells me something is not OK. This evening, for example. I’d spent almost 3 hours with her earlier in the day and my niece Sarah was going to visit her after she got off work, so that I could go to a planning meeting for an event I’m helping to organize. When the meeting got postponed, I thought about taking the evening off. After all, Sarah was going to be there by 7:00. But something told me I needed to at least drop by quickly to check on her.

I arrived at 6:15 pm and found her in a nearly empty dining room, working her puzzles. When I asked how she was feeling, she replied “Not good. I ate a bowl of soup and threw it right back up.” She hadn’t been able to eat anything else after that, and she said her stomach still felt queasy. I took her back to her room, stopping on the way to ask at the nurse’s station if we could get her something for nausea. “I’m so glad you came back!” Mom kept saying. Of course I came back, I said, kissing her forehead. “Well, sometimes you have meetings,” she said querulously.

Oh, and then there was the 90-minute wait for a CNA to come and change her wet diaper. I could rant about that, but I’m just tired. I feel like I have to be there almost all day every day to ensure she gets adequate care. It seems like a new problem occurs every time I go away.

 

 

It can turn on a dime

“Your mother is stable now, but at her age, it can turn on a dime.” That’s what the doctor from the ER told me when he called, two weeks ago now. Today I got a taste of what he meant.

I arrived at the SNF around 8:30 this morning, expecting to do the discharge paperwork and take her home. She was lying in bed in a hospital gown, but she sat up readily when I told her we needed to get her dressed so I could take her home. She mostly dressed herself (I only helped with fastening the bra in back), but when she was finished dressing she needed to lie down again — said she was feeling lightheaded. A moment or two later, she was taking big gulping breaths of air and saying “I can’t breathe!” I pushed the call button, reached over and turned the oxygen level up a bit, and sat stroking her hair and encouraging her to breathe slowly and deeply until the nurse came. Her oxygen sat was only 89, even with the increased oxygen she was inhaling. Her BP was high, but her heart rate was normal. The nurse brought her morning meds (which include blood pressure meds), along with an antibiotic and Mucinex, and went to notify the doctor on call. Discharge was put on hold.

Mom kept saying she didn’t feel right — “my insides feel quivery” was how she put it —  and when we were trying to explain that to the nurse, one of her roommates spoke up and mentioned that she had noticed my mom shaking in her sleep during the night. I asked if she could explain what she’d observed, e.g. was she shivering like she was cold? And she said no, it wasn’t like that. It was brief but strong tremors. I knew then that Mom definitely wasn’t going home today.

The doctor ordered breathing treatments with a nebulizer every 4 hours and a chest x-ray, and she’ll stay until he can read the x-ray results and reevaluate her, which will most likely be Tuesday (since Monday is a holiday). Mom was disappointed that she wasn’t going home, but felt poorly enough that she KNEW she wasn’t ready to be discharged.

We were so close. Sigh.

But whatever this is — if she’s still got fluid in her lungs or she’s picked up some new infection in the SNF, or whatever — I’m sure glad it showed itself before I took her home. Better that she stay where she is a couple more days than that we end up taking her back to the ER and going through all this rigamarole all over again.

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.