If it’s not one thing…

Friday was one of those days. Mom had her first session with the physical therapist, and it did not go well. He had her lying on her back on the bed doing leg stretches and she was having trouble breathing, and he got snippy with me because I “undermined his authority” by responding to her needs without clearing it with him first. Even with the oxygen cannula in, her sats didn’t get above 91 and she was laboring so hard to breathe that he cut the session short and let her go back to sitting in her recliner.

I was so relieved that she already had an appointment with the cardiologist that afternoon because I felt sure it was a CHF (congestive heart failure) episode. But the cardiology PA who treats her didn’t hear any congestion in her lungs or heart. They had the results of Monday’s labs sent over and noted that she’s almost dangerously anemic, which might explain the difficulty getting enough oxygen even when the fluid build-up is gone. Since we are seeing the kidney specialist next Monday, and this is something he’s been tracking, cardiology PA left it for him to determine the best course of treatment. I took Mom home and she almost immediately fell asleep in her recliner.

Worn out from a stressful day, at 9:00 p.m. I got into my pajamas, poured a glass of wine and settled in for a West Wing marathon on Netflix. At 9:30, I got a call from the owner of the board and care: Mom had a nosebleed that thet couldn’t stop and they were taking her to the ER. I met them there shortly before 10:00, and it was a LONG night. They got her into triage very fast, considering the unusually large number of people in the waiting room, and had a quick temporary fix to stop the bleeding.

But then, as you can see in the photo, they sent us back out to the waiting room. Where we waited… and waited… and waited. It was cold in that room and Mom was thankful for the cozy flannel pajamas, though she was a little embarrassed about being out in public without her dentures in.  And though she complained that the clamp on her nose was uncomfortable, I would have been thankful to have one myself when a young woman sitting across from us suddenly vomited.

It was three hours from the time we were checked in until Mom saw a doctor. He removed a massive blood clot from her nose and thought that would solve the problem, but the bleeding started up again. The culprit, a broken blood vessel, was too high up in her nose for the doctor to see or cauterize, so they had to insert a balloon catheter in her nose to stop the bleeding — a last resort because it’s “uncomfortable” (the doctor’s word). Mom cried out in pain when it was inserted and kept exclaiming that she couldn’t stand it because it hurt so much.  It was 3:00 a.m. by the time this happened, and 3:30 by the time we were leaving the ER. The owner of the care home and her husband had waited with us the whole time, and they drove Mom home once she was discharged. I got in my car and immediately began to sob from exhaustion and helplessness at not being able to ease her pain.

I got about five hours of sleep before I got another call from the care home telling me that Mom had pulled the balloon halfway out during the night. I drank a big mug of strong coffee, threw some clothes on, and headed over there. The balloon catheter was supposed to be left in place until Monday, when we had been directed to see an ENT doctor to remove it. I called the ENT office and left a message for the on-call doctor, who called me back quite promptly and said that we could leave it as is unless it started bleeding again. Thankfully, that did not happen. And the balloon didn’t hurt when it was only half inserted, so Mom was much more comfortable for the duration of the weekend than she would have been otherwise.

All’s well that ends well, I guess.

It happens…

We saw the neurologist today. When Mom was in the SNF and would complain about feeling “quivery inside,” when her hands shook as she tried to hold a glass of water, when she couldn’t keep from bouncing her feet constantly… I kept thinking, “It’s OK, Dr. O will help her with this.”

Dr. O spent all of five minutes with us, and when I described Mom’s complaint about feeling quivery inside, she merely nodded and said “It happens.” The medication Mom was taking at bedtime before for restless legs made her too sleepy (so it was difficult to get her out of bed before 10:00 or 11:00 a.m.), and we agreed not to put her back on that unless the restless legs become intolerable. We are going to try increasing her dosage of Sinemet to see if that helps the tremors — but Dr. O said the caregivers will have to watch her closely because if the increased dose is too high for her body, the tremors will get worse instead of better. So grateful she lives in this small board and care home with attentive staff who WILL notice any changes. Otherwise I’d be back to camping out with her almost 24/7.

I was a little disappointed by the lack of attention we got from Dr. O, but I guess it’s a good sign that she wasn’t too worried about any of what we reported. And Mom was happy to get home. Short trips in the car still wear her out, and she dozed off in her recliner almost as soon as we got her in it. I kissed her forehead and headed out…

… And five minutes later I was ringing the door bell again, after having phoned AAA because my car wouldn’t start. Turned out to be a dead battery, and one hour and $126 later I was back on the road. So thankful it didn’t happen until AFTER I got Mom home! It’s warm and muggy today, and I can’t imagine making Mom sit in the car (or in her wheelchair in a parking lot) for an hour. Much better that I got to spend most of that hour sitting by her side in air conditioned comfort.

(Sh)it happens… But it could always be worse. And we get through it, together.

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.

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.

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.