Archive | September 2018

Thirty-Six Hours in a SNF

Wednesday morning I learned they would be discharging my mom from the hospital to a skilled nursing facility (SNF) later that day for “a few days” of rehab. I had already made the decision to cancel my trip to San Antonio, so I asked the discharge planner to look for facilities near my office location rather than have her sent to the same horrible place she went the last two times just because it’s close to home (and the owner of the board & care would visit her there). The discharge planner sent me three possibilities to research. I ruled one of them out based on their ratings and reviews, but both of the other two looked like they would (at least) be better than the last place. The decision was made for me when only one of those two had a bed for a female available. I felt pretty good about it. The facility is on my way home from work, only a couple minutes off the freeway, and while reviews are mixed, it gets solid ratings from Medicare and other agencies.

The transport that was ordered for 5:00 p.m. didn’t arrive at the hospital until 6:30, so Mom was able to eat a little bit of dinner first. She was in pretty good spirits and definitely seemed to be improving. I hoped that it really would be just for a few days. Maybe she’d be back at the board and care by Monday, even. As I was standing around while the medical transport guys were getting ready to load her on the gurney, one of my favorite CNAs came in to say goodbye to Mom. She reminded me of a friend of mine in Portland (if that friend had candy red hair) and she’d been really great with Mom. The stress must have been written all over my face because she took one look at me, said, “Oh honey” and put her arms around me.  And maybe it was because she reminds me of my friend that I didn’t hesitate to let her hug me. It felt so good to be seen, to be held.

We got to the “4 star” facility around 7:15 p.m. It looks pretty much like the other nursing home (they must all be built on the same basic floor plan), but it’s a bit older or hasn’t been upgraded as recently. Instead of individual TVs for each bed, there are two TVs mounted on the far wall for the room of three. Mom didn’t get a TV (or a remote for the one she can see from her bed), but at least she got the bed by the window. The medical transport guys got her into bed and comfortably propped up on pillows, someone brought an oxygen machine and they got her switched to that from their portable tank, and then they left… and we waited. And waited. No one came in to assess her or have me fill out any paperwork. After an hour, I went to the nearest nursing station to ask. The harried charge nurse gave me the paperwork and tried to tell me that both the flu and pneumonia vaccines are needed every year and Mom should get them while she’s there. Wrong. The pneumonia vaccine is good for five years. Mom got it last fall and, even if she hadn’t, a nurse friend confirmed to me via text that it’s medically inadvisable to give the vaccine while she’s recovering from pneumonia. Good grief.

It took TWO HOURS for the nurses to even come into her room to assess her, and I’m convinced it would have been longer if I hadn’t made it quite clear to the charge nurse that I wasn’t going anywhere until that got done. And, of course, when they did the body check, she was soiled. To put it more bluntly, she’d been lying in her own shit for who knows how long until they finally got around to her. I was NOT happy. And even less happy when I learned that they wouldn’t have any of her medications except the antibiotics until morning because their pharmacy doesn’t deliver after a certain hour.  There wasn’t anything I could do about it, and she was finally clean and ready to get some sleep, so at 10:00 p.m. I finally went home, feeling like this was going to be a disaster.

I had told my boss that I’d be in late, after I stopped by the SNF to do the admissions paperwork and check on Mom, but I slept so poorly and was so worried about the situation that I knew I just needed to call off for the day. I got over there about 9:00 a.m. and it was a much more cheerful place in the morning. The day shift charge nurse was much more responsive, they now had all her meds, and the dietician came around to talk about her dietary needs and preferences. The one thing I was still concerned about was that they didn’t seem to have the orders for IV fluids, which I’d been told was the main reason they couldn’t discharge her home to her board and care. I was told that the nurse practitioner would be in later that morning and would take care of it.

The nurse practitioner is awesome, and talking with her restored some of my confidence in the placement. She listened to my concerns and we seemed to be on the same page about what is and is not acceptable in terms of care. She confirmed the IV order with the hospital PA and got that started within an hour of examining Mom. The x-ray and blood draw for labs she ordered also happened that same day. Two physical therapists came to do a preliminary assessment on Mom, and they got her up in a wheelchair and wheeling herself around (which she’s never done before because the chair we have is a transfer chair). She seemed to enjoy doing that and it’s good exercise for her arms, so I resolved to find a way to get her a regular wheelchair when she gets home.

After spending most of the day with her, I left around 7:00 p.m. to get some dinner and rest. “Go,” said Mom with a smile. “Take care of yourself. You need to have a life too.”

The hospital had scheduled a follow-up with the nephrologist for Friday, but the NP and I both agreed that she wasn’t quite ready to be taken out to an office visit, so I got it moved to Monday afternoon. A case manager from Mom’s medical group called me to arrange the wheelchair van to take her to the appointment, which was something else the nurse practitioner had told me she would make happen. (Clearly this woman gets shit done. I respect that.)

I went back to work on Friday without worrying about Mom, though I was frustrated to realize that I couldn’t call her. There are no phones in the rooms and they don’t even bring a cordless phone in for patients who are on bedrest. The only way for a patient to get a phone call is to have their own cell phone — which, frankly, I would worry about getting lost or stolen, even if Mom had one — or go to the nursing station to take a call there. Ridiculous, if you ask me.

But when I got to Mom’s room around 4:30 p.m., she was a lot less perky than the day before. In fact, she was so weary that she could hardly keep her eyes open. “I may fall asleep on you,” she told me. “The only time I feel comfortable enough to sleep is when you’re here.” I held her hand until she fell asleep and let her nap until they brought the dinner tray. Despite what I thought were clear directions to the dietician, they persist in bringing her food that is impossible for her to chew with dentures. (I mean, come on, tortillas can be hard to bite through even when you’ve got your own teeth!) Thankfully, I had stopped at the grocery store and picked up a few items to supplement the bad facility food. Mom ate half a banana with some peanut butter and a few bites of applesauce, and that was dinner. She dozed off again as soon as she’d finished eating, even while sitting up at almost a 90 degree angle. I hung around until 7:30, but she never did wake up again for more than a few moments at a time, so I finally kissed her goodnight and went home for some self care.

Day three at the SNF was not a good day. I had let myself sleep in a little, then stopped at the pharmacy to fill a prescription and picked up some lunch to bring with me, arriving just before 11:00 a.m. Mom was asleep in her pajamas, and she barely woke up enough to acknowledge my presence. Despite the IV fluids, her mouth was so dry that she could hardly talk — but she was so weak, she didn’t even want to let me raise the head of the bed to give her water. “Just leave me alone,” she kept saying. “Let me sleep.” When they brought the lunch tray, I took a glance at the entrée and knew that (again) there was no way Mom could eat it.  “Try to get her to eat,” the CNA told me. “She didn’t want any breakfast.” But it was no good. I couldn’t even tempt her with chocolate pudding. I finally got her to take enough water to wet her mouth before she fell into a restless sleep again. I was really worried about her, wondering what had happened to set her back so far when she’d seemed to be on the mend.

She slept all afternoon and by dinner time was starting to seem a little more like herself, though still extremely fatigued. She even showed an interest in the meal, which was some kind of turkey sandwich with sweet potato fries, but after chewing and chewing at the same piece of turkey until her jaw was tired, she spit it back into her napkin and gave up. I managed to get her to eat one sweet potato fry, one bite of strawberry, three bites of applesauce, and three bites of chocolate pudding. I decided to stay with her until they came to clean her up and get the bed ready for overnight, and I’m so glad I did.

Only one CNA came to clean her (usually there are two), and she wasn’t very gentle or compassionate. She would have just flipped Mom onto her side if I hadn’t stepped up, taken Mom’s hand, and helped her roll over more gently. I ended up assisting through the whole process, even handing the CNA the IV bag so that she could pass it through the pajama sleeve and then back through the sleeve of the hospital gown the changed her into. I don’t mind helping AT ALL, but I shouldn’t have to. If I hadn’t been there, it’s not that I think Mom would have been mistreated, exactly… but it would have been a lot more unpleasant for her. Even with me there, verbally reminding the CNA that abraded sores on her backside are extremely painful, she scrubbed at Mom’s behind with a washcloth until Mom yelled and I grabbed the wet wipes the hospital had sent home with me and pushed one into her hand to use instead.

And that was how our first 36 hours at the SNF ended. Mom was tired and irritable, but clean and comfortably tucked into bed when I left around 9:30 p.m.

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Dear Dad…

Dear Dad,

It’s been almost 11 years, and I don’t know that I’ve ever missed you more than I do right now. I’m writing this in a chair beside Mom’s hospital bed. She’s been in the hospital for four days, as I suppose you know, and she doesn’t seem to be improving yet. In fact, there’s been a new complication every day. I sure wish I could ask you what to do.

She’s having trouble eating. She ate pretty well on Saturday (after two days of keeping down nothing but liquids), but on Sunday she had no appetite at all and had to make an effort to take a few bites. A couple of times she muttered wearily, “Gotta eat to stay alive.” It reminded me of the last year or so of your life, when you had to take in all liquids through a feeding tube because otherwise you aspirated into your lungs, and how you used to talk about all the hours you spent in a day “just staying alive.” I remember when you asked me to find that Bee Gees song, and I decided to make you a whole CD of music I thought you’d like, including “Stayin’ Alive”… but I didn’t finish it in time. Sorry about that, Pops.

Anyway, back to Mom. She ate almost nothing yesterday, and when I was there at dinner I discovered that the issue was more than having no appetite or feeling too tired to make the effort. She couldn’t seem to remember HOW to eat. She let me spoon feed her a little bit of pudding and I think that was all she ate all day except for a Boost shake at lunch. This morning I fed her breakfast and she actually seemed interested in the food for the first time, telling me “Now the applesauce” or “Give me a bite of that yogurt.” But when she tried to feed herself, she was missing her mouth and dribbling food down her chin. What does this mean, Dad? Is it going to get better, or is this where we are now?

I wish you could tell me what it means that Mom is “dreaming with [her] eyes open” and talking to people who aren’t here. A couple of times she’s seen someone in the room. I don’t know if it’s just the multiple infections, or a side effect of one of the many medications, or if she’s starting to see between the worlds. She hasn’t mentioned seeing anyone who I know to be on your side of the veil yet, which is a comfort to me. I’m not quite ready to let her go. You’ll have to wait a little longer for your dance partner, OK?

* * * *

LATER: I put this aside to help Mom, and then they brought her dinner tray. I started feeding her some mashed potatoes and gravy, and after a couple of bites she said, “Let me feed myself!” She moved slowly and a little clumsily, but she didn’t miss her mouth this time. She ate some mashed potato, a couple bites of the fish (too tough), some applesauce and some pudding. And when she’d eaten all she could, she actually picked up the word search puzzle book I brought her for the first time. She didn’t do more than flip through the pages and put it down again, but it’s an improvement. I feel much more hopeful than I did a few hours ago. If you had anything to do with that, Dad, thank you.

One more thing, Dad… I wish I could have seen your reaction to the smug know-it-all hospitalist, though I’m pretty sure I know what it would have been. His behavior was just like the surgeons you used to complain about at the dinner table back when you were an anesthesiologist. I wanted you here to put him in his place when he was so condescending and dismissive to the nurse who had been so wonderful with Mom. No wonder the nurses at Franciscan appreciated you so much.

I have to get some sleep now. Thanks for keeping an eye on Mom. I love you.

Dad Sleeping

If it’s not one thing…

… It’s another, as Gilda Radner’s SNL character used to say. It’s always something!

I had a really lovely weekend planned for myself, with a restorative yoga class on Friday evening, a planning meeting for a nonprofit I work with on Saturday, gardening and a women’s circle on Sunday. But Friday morning I woke up to text messages from the owner of Mom’s care home.

Mom had vomited three times on Friday, the texts said. She had a low grade fever (99.0) and had some diarrhea. It sounded like a typical stomach bug to me, but I told her I would call the primary care doctor as soon as his office opened. I called and left a message for the nurse to call me back. I checked in with the head caregiver a couple of times before lunch, and Mom was now keeping down liquids (and half a banana for breakfast) and her temperature was back to 98.7, but the diarrhea hadn’t stopped. They were concerned about dehydration. I called the nephrologist to ask if we could give her Pedialyte (answer: no, too much potassium for someone with chronic kidney disease) and got some good advice from the nurse. The primary care nurse still hadn’t called me back when I left the office at 4:30 p.m. I still thought it was just a stomach bug, and it sounded to me like the worst was over.

Shortly after 5:00 p.m. I got another text from the owner of the care home. She said the diarrhea had gotten much worse and her pulse was very rapid. She wanted to take Mom to the emergency room. Let me call her doctor again, I said. I called, got the nurse on the phone this time, and she confirmed that an ER visit was the way to go. When I arrived to pick Mom up, it was clear to me that she was very sick indeed.  So we spent Friday evening in the ER. They got her started on IV fluids, did an EKG and a CT scan, and drew blood three different times for labs. She was experiencing atrial fibrillation and her blood pressure was the lowest I’ve ever seen, around 105/51. I’m afraid it was a pretty miserable few hours for her, more so than most ER visits have been. Everything seemed to cause her almost unbearable pain, from the blood draws to the catheter to cleaning up the diarrhea that has caused a painful rash on her backside. Her face was as pale as I’ve ever seen with a yellowish cast to it.

The ER doctor suspected a C Diff infection, which is pretty worrisome as that can be very serious for the elderly. So they had to collect a stool sample for testing, which was more difficult than you might imagine, and started the admission process. It was 1:00 a.m. when they finally came to take her to her room, and 2:00 by the time I left to get some sleep.

Thirty-six hours later, we still haven’t gotten lab results to confirm or rule out C Diff… but she does have a UTI and pneumonia in her right lung (upper and lower). She’s still having some fibrillation, and they suspect a mild GI bleed. No wonder she was so sick! That’s a lot of issues for one frail 90-year-old.

I got to talk to the attending physician this morning, and based on her improvement since Friday night he doesn’t think she has C Diff (whew!), but they can’t plan for discharge until the labs rule it out definitively. They started her on three antibiotics — one for the diarrhea, one for the UTI, and one for the pneumonia. The diarrhea had stopped by midday yesterday, and she’s got some color back in her face and even a little appetite now.  If the test comes back negative for C Diff, she’ll likely be discharged tomorrow.

Unfortunately, I think the likelihood is they’ll send her to a SNF for rehab for at least a week. And I am flying to San Antonio on Thursday for a long weekend co-facilitating a retreat. I hate the idea of her being in one of those places when I can’t be here to check on her, so I’m already thinking about who I might be able to line up for check-in visits for those four days.

The surprising thing is that my anxiety hasn’t shot through the roof. I’ve been fairly calmly readjusting to each new development, concerned but not panicked. That feels good. One day at a time…