Infiltration

The x-ray results should “some infiltration in her lungs,” so the doctor prescribed another course of antibiotics, which she started at dinner on Thursday. Saturday I thought she was turning a corner — her oxygen got all the way up to 97 — but she is still dropping into the low 80s during the night, even though the oxygen gets turned up from 3 to 4 liters overnght. And her feet and ankles are still swollen and she’s still coughing. So this morning I called Dr. G again, and he pushed through a rush referral to a pulmonologist.

Their next available appointment was on Wednesday, but when I explained the situation they said I could bring Mom in as a walk-in this afternoon. We spent two hours at their office, which is about four hours less than the minimum we would have spent at an ER, so no complaints here. The pulmonologist said she coud hear a little bit of wheezing in Mom’s lungs so there’s definitely some fluid, but she said it’s not necessarily caused by an infection. She increased the Lasix dosage and ordered more frequent breathing treatments. And that’s that. Call back if it doesn’t improve.

Mom has been feeling pretty good, in spite of the oxygen difficulties, but today she was tired and grouchy and her caregiver said she had barely touched her lunch. So I’m still feeling a little anxious and wanting to watch her closely… and I guess I’m feeling a little tired and grouchy myself.

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Stalled

Mom’s recovery progress seems to have stalled. Friday when the physical therapist was working with her, in the half hour or so he had her off oxygen, her sats dropped from 93 to 83. I called Dr. G’s office about that and he ordered a chest x-ray. Until we get the results we’re to keep her on oxygen 24/7.

Yesterday I was able to take her to church for the first time in 6 weeks. She was happy to be there and particularly enjoyed the attention from her friends in the seniors Sunday school class, but she had some trouble transferring from the wheelchair to the pew and (especially) back again. When I got her home after the service, she was ready for a nap!  I noticed when I picked her up for church that her left hand  and wrist were very swollen and puffy. It had improved a little by the time we were driving home, so I decided it wasn’t worth spending our Sunday afternoon at Urgent Care when I’d be seeing her again today.

She seemed tired today, much less perky than she was for church yesterday. When we pulled in to the parking lot for the Imaging Center, I checked her O2 level and it was only 89 — even though she’d been continually on oxygen. Feeling thankful that we were getting the x-ray done, I finagled the wheelchair and the portable oxygen tank inside and even managed to fit both of us and the equipment in the small dressing room, so I could help her get undressed and into a gown. When the x-ray techs told me she was going to have to stand while they took the images, I explained that her legs are weak and her balance is very poor — so they gave me a heavy lead smock and let me stand beside her, my hand on the small of her back to keep her steady. Mom clung to the sides of the board as if to a life raft in deep water, but she managed to stay standing with her back straight and followed their breathing instructions while they took the images. Her PT would have been proud.

The swelling in her left hand and forearm was about the same as when I left her yesterday, and I noticed her feet are now swollen also. While we were waiting our turn, I called the cardiologist’s office about that. Her doctor is off today, so the receptionist gave the message to a nurse who consulted with one of the other cardiologists and called me back. They said it “doesn’t sound like a heart issue” and recommended she increase her Lasix dosage for the next 48 hours and call back if the situation hasn’t improved by then.

While I’m relieved they don’t seem concerned about it, I’d sure like to know what’s going on. Between this and the difficulty keeping her satured with oxygen, it’s obvious that something isn’t right. For now, we wait.

Self Care

When my job ended (at the end of August), I gave myself a gift. I bought a month of unlimited yoga classes at the studio where I’ve been doing (mostly) restorative yoga and the occasional workshop for the last year or so. With the combined stress of Mom’s recent hospitalization and suddenly finding myself unemployed, I knew it was going to be important to take time for self care.

In the last 30 days, I’ve taken 21 yoga classes. That’s 4 more than I did in the previous 6 months! I can feel the difference in my flexibility and in my stamina, and when I saw my chiropractor last week she said she could see the difference in my posture and commented on how “loose” my body was.  I love how I feel after yoga, energized and alive and fully inhabiting my body. My mind is clear, I’m breathing more deeply, and I sleep better than I have in a long time. Also, the routine of yoga classes gives a rhythm to my days during this time between jobs.

I’m committing to continuing my 5x/week yoga practice until I start my next job, whether that’s a month from now or six months from now.

I’m also committing to eating healthy food, getting 7-8 hours of sleep each night, and sticking to a sleep schedule. It would be so easy to stay up half the night and sleep my days away… but then I’d miss my favorite yoga classes. So I’ve kept myself on a schedule, to bed no later than midnight and out of bed by 7:30 each morning. It feels good.

Taking care of myself makes me a better caregiver for my mom.

 

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.

Mom nosebleed ER picBut 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.