Tag Archive | aging

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.

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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.

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.

 

 

What’s new on the medical front

After 24 hours in the hospital for observation and follow-up visits with a geriatrician, her cardiologist and (finally today) her neurologist, here’s the latest. The hospital cardiologist ruled out the need for a pacemaker. After reviewing the results of the heart monitor overnight, he concluded that her heart rhythm is not slow, just irregular. Both he and her regular cardiologist wanted to blame a medication called Sinemet that she takes to help with her gait and balance, because one of the side effects of Sinemet is a drop in blood pressure. That’s what they think caused her to faint in church that day – either a sudden drop in blood pressure or something called a vasovagal syncope, caused by straining on the toilet. Apparently that’s a common cause of fainting in the elderly. (File that under: Things I never wanted to know about getting old.)

She was discharged with no changes to her medication. At the cardiology follow-up, he suggested asking the neurologist about reducing the Sinemet dosage. But he didn’t seem particularly concerned about a single fainting episode and said it was fine for us to wait until the September appointment with the neurologist to review that.

The neurology appointment got postponed by two weeks because the Medicare Advantage HMO failed to authorize it in time (don’t even get me started on that), but we finally saw Dr. O today. She was impressed by Mom’s energy level, how well she’s walking (no shuffling, easily navigating corners with her walker) and the lack of tremors. Her one concern was that Mom’s blood pressure was high (170/60), in spite of all those blood pressure medications she’s on.

Dr. O didn’t give her one of the standard memory tests this time; instead, she just made conversation, asking her what she does all day. Mom replied that she lives in an elderly care home with some very nice people. Dr. O asked if there are activities, do they watch a lot of movies? Mom: “I entertain myself by doing puzzles and reading, mostly. There aren’t a lot of activities, but sometimes we all sit around the table and play… something.” She looked at me hopefully, expecting me to fill in the missing detail, but I’ve never been there when they were playing a game at the table. I asked if they still do exercises in the morning, and Mom said yes and demonstrated the type of seated exercises they do. Dr. O seemed satisfied with that, though I know she’d be happier if Mom didn’t spend 98% of her day sitting.

When asked how she’s been feeling, Mom replied that she’s doing great. I told Dr. O about the fainting episode and resulting hospital visit. When I raised the question about the Sinemet, Dr. O shook her head and told me that with Mom’s BP as high as it is, she doesn’t think it’s having a significant BP-reducing effect — certainly not enough to warrant removing a medication that has made such a positive difference in her mobility and energy level.

Dr. O is ordering a carotid artery ultrasound to check for narrowing or partial obstruction of the carotid arteries. This was not a comfortable thing for me to hear, since a blockage of the carotid often leads to heart attack or stroke, but I’m glad she’s getting tested for it. According to WebMD, one of the first indications is often a TIA, which I am pretty damn sure is what happened to her when she ended up in the hospital three years ago and we started down this road together. You’d think they’d have done this carotid artery ultrasound back then, but nothing about the slipshod medical care she got back in that small mountain town surprises me anymore. It’s getting checked out now and that’s what matters. For all my frustrations with the administrative aspects of her medical group, I am truly grateful for the great team of doctors she has now.

Next week, it’s the kidney specialist.

Perspective

After a doctor’s appointment last week, Mom and I stopped at a CVS drugstore to pick up a few things. When she’s not feeling tired, she enjoys getting out and doing things – even if it’s just browsing a drugstore for ten minutes.

As I got out of the car, a middle-aged woman approached me, asking if I could spare any change. I brushed her off, saying “Not now but maybe when we come out.” She continued talking to me, explaining that she hates asking for money but she and her husband are both out of work and currently living in her mother-in-law’s garage – and when she saw me lifting the walker out of my trunk, she eagerly offered to help. “I’ve got it,” I said, “but thank you.” The woman explained that she wants to work and would be happy to do anything – wash windows, clean houses, walk dogs, yard work.

I wasn’t sure how Mom would react to her, having spent most of her life in smaller communities where this sort of situation is uncommon. I can still vividly recall her reaction to an older woman sitting in a motorized wheelchair by the side of a freeway off ramp a few months ago. “Why would they just leave her there?” she burst out. “That’s a terrible place to leave someone!” I quickly explained that I thought the woman had probably chosen to sit there to ask for money, though glancing in the rearview mirror I didn’t see her holding a sign… and she wasn’t close enough to the road to take money being handed from a car window without getting out of the chair…

Anyway, we went in to the drugstore and I picked up the few things we needed and let Mom buy a bottle of Tums that she didn’t need because they were on sale. We picked out some cookies for her to take home, too, since we’re still trying to keep her from losing any more weight. I rang up our purchases with my debit card and got $10 cash back.

As we left the store, I discreetly passed the ten to the woman who had asked for help. She glanced at the bill in her hand and burst out “Oh, thank you so much! I could hug you!” – adding quickly “But I won’t. I know most people don’t want to be touched by strangers.”

“You can hug me,” Mom said immediately, turning with a smile.

I nodded and smiled my assent. “She’s a hugger.”

The woman hugged my mom gingerly around the shoulders, as if she might break. And she kept smiling and waving to us as we pulled out of the parking lot.

I drove away thinking how very fortunate Mom and I both are, despite the increased burdens of her care costs over the last year. I’ve been frustrated lately with all the costs for my own health care and Mom’s medications and incidentals (Ensure, incontinence products, haircuts, etc.) that just keep adding to my credit card debt because there’s not sufficient monthly income to cover it all. But I have a job and I have credit cards, and neither of us needs to go without. And Mom’s monthly income is enough to cover her base level of care at a wonderful home, where she is happy and engaged. And that, to me, is priceless.

Girls of All Ages Have Drama

I read a great article (Mean Girls in the Retirement Home)  recently, and it got me thinking…

I didn’t witness out-and-out bullying at the two assisted living communities where my mom lived, but I definitely saw that there was a pecking order, with those who were still mentally sharp shunning those who were cognitively compromised. I used to worry about Mom being mistreated as her dementia advanced. So, first off, I’m thankful that we got her out of that dynamic and that she now lives in a homelike environment too small for cliques.

But I had noticed the last couple of times I visited that they’d moved the chairs in the TV room, separating Mom from her chatterbox friend Georgia… and that Miss Chatterbox (or, as Mom calls her, Miss Know-It-All) seemed quiet and sullen. The article got me to wondering if there had been some kind of Mean Girl drama. So when I took Mom to get her nails done yesterday, I asked her about it.

“Well,” she said. “I heard her talking about me and I didn’t like the way she described me, and I told her so.” The offending piece of description was something like “she does her own thing and doesn’t care about anybody else,” and Mom said “If that’s what she thinks of me, I don’t see how I can be friends with her.”

No one who knew my mom pre-dementia would ever describe her as someone who doesn’t care about others. She’s always been one of the kindest, most giving, most nurturing people I have ever known. So I can understand how being described in that way would sting. But I can also understand why Georgia, who appears to constantly need someone to listen to her and validate her, might be hurt if Mom started tuning her out so that she could focus on her crossword puzzles. Aside from the staff, my mom is the only person there capable of making intelligent conversation… so I suspect Georgia might be sorry she’s burned that bridge.

We never do outgrow the drama, do we? LOL Well, hopefully it will soon be water under the bridge.

So Thankful!

After doing the grocery shopping for Thanksgiving dinner, I stopped by the care home to see Mom for a few minutes. I gave back her watch, which I’ve had for over a month now because I kept forgetting to take it in to get the battery replaced, and she was very happy to have it back. Holding her hand, I noticed how long her fingernails are and that there was dirt under a couple of them. As I was leaving, I mentioned this to the head caregiver, who said she will clip and file Mom’s nails tomorrow.

After kissing Mom goodbye and telling her I’ll see her tomorrow for church, I went out the front door… and I literally skipped to my car, like a little kid.

Can I tell you how awesome it is to leave Mom’s place feeling like SKIPPING?! I nearly always left her last place feeling like crying.

Thursday she had a follow-up with the kidney specialist, and the owner of the care home brought her to the appointment. I met them at the doctor’s office, and it was so encouraging to see Mom smiling and joking with the owner and the caregiver who had accompanied them. The doctor ordered some more labs, and the caregivers volunteered to take her down the street to the lab to get it done right then, so that I could go back to work. When we said goodbye, I hugged and kissed Mom and told her I would see her Sunday. She was perfectly happy to go with the caregivers, who she always refers to as “my friends” because she can’t remember their names. She may not know their names, but they have become her family. And they are fast becoming my family as well.

As Thanksgiving approaches, I am thankful for many things. I am thankful that Mom is healthy enough and strong enough to climb the stairs into my apartment building to share the holiday with me. I am thankful she lives in a home that is truly a HOME, not an institutional setting. I am thankful for family — both the family we were born into and the family we have found, or who found us.