Tag Archive | aging parents

It Takes a Village

After four nights in a hospital, tonight my mom is sleeping in her own bed. Today was a pretty challenging day for both of us, and I’m glad it’s over.

They had intended to discharge her yesterday, but the radiology department got backed up with emergencies and couldn’t do the thoracentesis of the left lung until this morning. They got her in first thing (about 8:15), and I was anticipating another quick and easy procedure… but this one was tough. She flinched multiple times while the doctor was injecting the anesthetic, and while the fluid was draining she had a hard time staying still, saying that she hurt and couldn’t breathe. By the time the nurse removed the tube and bandaged the injection site, Mom was clutching her side (just under her left breast) and almost gasping with pain, saying “It hurts!” with wide, scared eyes. I was scared, too, especially when she told us that the pain was going all the way down her side and up to her shoulder.  I was afraid she was having a heart attack and couldn’t understand why the chatty ultrasound tech wasn’t more concerned.

They had ordered a “stat” chest x-ray following the procedure, and the x-ray technician was waiting outside her room when we got back. I told the nurse about her pain and he listened to her heart  to confirm it wasn’t “a cardiac event” before they proceeded with the x-ray. She kept telling us over and over how much it hurt, which is so not like her. Mom has never been a complainer. It wasn’t until the nurse said gently “It hurts because you just had a procedure. They stuck a big needle in you. Do you remember?” — and she said “No” — that I realized she was scared because she didn’t understand WHY she was in pain. Once the x-ray was completed and all looked good, the nurse brought her pain medication and an ice pack.

I’m happy to report that the intense pain subsided very quickly after that. More good news: Her oxygen saturation quickly got up to 100% on only 2 liters of supplemental oxygen (she was on 4 liters yesterday and still only getting to about 94% at best).

They cleared her for discharge at noon, and I got my second scare of the day shortly after the nurse removed her IV port. I was packing up her things and Mom said from behind me, “What’s this?” I turned around and there was a spreading red stain on the sleeve and lap of her robe. Thankfully the friend who had come to help me out today has had CPR training and volunteers in a hospital ER, so while I stabbed at the call button she calmly slipped a glove on her hand and applied pressure to stop the bleeding. By the time the nurse responded to the call, it had stopped.

Which brings me to the title of this post. I am so fortunate to have a support system here. My wonderful niece, Sarah, came three days in a row to sit with her grandma for a few hours — bringing along her books so she could study for midterms in the hospital room — so that I could go home and get some rest or get some things done. Rora, who came today and helped me manage the discharge, is going to help Sarah get Mom to her three follow-up doctor’s appointments next week while I’m out of town. The owner of the board and care visited with her husband on Saturday and brought some things Mom needed from home, saving me a trip to pick them up. And then there are all the family members and friends who checked on us, prayed for us, offered support in so many ways. I love my “village” and I don’t know how I’d have gotten through the last five days without them. Thank you all.

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Back in the hospital

It’s been a long 36 hours.

Thursday when I checked on Mom, her caregiver said her oxygen sats had dropped to 82 overnight and hadn’t gotten above 85 all day. They had her on 4 liters of oxygen and had done all the extra things the pulmonologist recommended, but nothing helped. I called the pulmonology office and was advised to bring her in first thing Friday morning.

She was seen by the physician’s assistant, who struck me as more cautious and thorough than the physician we saw on Monday. At first he was inclined to attribute the low saturation numbers to her anemia and poor circulation. But when I mentioned the chest x-ray done 11 days prior, he called the imaging center and got a copy. And as soon as he looked at it, he said “Take her to the hospital.” He gave me a copy of the x-ray results and his notes to give to the ER doctors, and off we went.

I think having that information helped — and it also helped that it was midday and the ER wasn’t too busy — because she was taken back while I was still parking my car. She’d told the PA that she felt “fine,” but by the time we got to the ER she was telling me she felt “yucky” and was so weak, I needed to ask for help transferring her from car to wheelchair. They did an EKG, drew blood, and gave her a chest x-ray and had her settled in one of the ER cubicles all within the first hour. A doctor came in, took some info, reviewed her labs and x-ray, and said he was going to get to work on her admission. It was the best, most efficient ER visit we’ve experienced to date.

(Side bar: One of the ER nurses who took her vitals and helped make her comfortable looked and sounded really familiar to me, but I assumed I’d just seen her on other visits to that ER… until she looked at me and said “Is your name Lira? We were in a writing class together.” Small world! And great memory – that class was three years ago.)

Mom’s one complaint was that it was too cold in the ER. Here she is tucked under her blankets.

Mom ER 2 - Oct 13 2017

There was the usual long wait for a room to open up, though, and it was five hours from arrival time until she was taken upstairs. I stayed to give her medical history and  make sure she ate a little dinner, then headed home and met my best friend for dinner, a couple glasses of wine, and some much needed decompression.

I was supposed to be at a workshop all weekend, one that I’d been looking forward to for months and that is only offered in my area once a year.  But there was no way I could leave her there without an advocate, so I sent a message to one of the teachers and explained why I wouldn’t be able to attend. I got about five hours of restless sleep, rolled over to check the time on my phone and saw a voicemail from the hospital time stamped 5:22 am. It was the night nurse, leaving me a status report before going off shift. Mom  “had an emergency” overnight, her message said, but it was all resolved. She was really struggling to breathe, so they had given her a stat chest x-ray and the doctor had ordered an extra dose of Lasix and turned the oxygen up to 5 liters. I popped a Vivarin tablet (no time for coffee), threw some clothes on, and headed to the hospital.

She was eating her breakfast when I arrived and seemed pretty chipper, all things considered. More blood was drawn for labs, and mid-morning she was taken down for a CT scan. She barely touched her lunch, so my lunch was half of her hamburger and a bottle of juice. I didn’t want to leave to get food in case they came to take her for the procedure to drain her lung, but that didn’t end up happening until around 2:30 pm.

They let me go down with her and I thought I’d just wait in the hallway as I had for the CT, but the ultrasound technician was really sweet and said I could be with her for the procedure. It’s called a thoracentesis and involves inserting a needle between the ribs into the space between the lungs and the chest wall, then draining the fluid through a thin tube. The ultrasound tech explained it, saying that they would numb the area first but warning that the numbing agent stings when it’s first injected. Then the radiologist came in and went through it with us again, complete with ennumerating the risks (the most dangerous being the possibility of the needle puncturing the lung and causing it to collapse). When he finished, he asked Mom if she had any questions. She said no and when he turned away to begin prep, she muttered to me “He already told me more than I wanted to know.” I stifled a nervous laugh.

She was sitting on the gurney, her legs over the side, leaning over one of those little bedside tables with a pillow on it. The tech had me stand on the other side of the table to be sure it didn’t move, and I held Mom’s hand. She was a real trooper, stayed still and didn’t even flinch when the needle went into her back. I closed my eyes, squeezed her hand and prayed silently. After a minute or so, the doctor got up and left the room with a quick word of instruction to the tech, who would monitor the draining fluid and remove the tube when it was complete. I don’t know if it was the relief of realizing that the hard part was over and her lung had NOT collapsed, standing stiffly with my knees locked, low blood sugar from lack of food, or all of the above — but I started feeling like I was going to faint. I tried bending my knees and closing my eyes, but when my ears began to ring I had to sit down and put my head between my knees.  (Dad, if you were watching over us today, now you know why I never had the least interest in a career in medicine…) It took perhaps five minutes for a liter jar to fill with a yellowish fluid, which was sent to the lab for tests.

They had replaced Mom’s hospital bed mattress with an air mattress while we were downstairs, which I assumed meant she would be in some pain and her back needed to be cushioned. She was very drowsy and kept dozing off, but she didn’t experience any pain for the four hours I sat with her after the procedure. When my niece arrived at 7:30 to spell me, I headed home to get a decent meal and some rest. Okay, the rest hasn’t happened yet because my cat needed attention after being alone all day and I couldn’t stand the pile of dishes in the sink for another minute… But the dishwasher is humming as I type and the bed is calling. Hopefully Mom is getting some sleep too. I’ll see her in the morning.

Mom asleep in hospital Oct 13 2017

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.

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.

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.