Tag Archive | caregivers

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.

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We Persist

It’s been a challenging few days. Friday evening I arrived at the nursing center as the nurse was dispensing Mom’s evening meds, and I asked her to run through the med list with me — mostly to make sure Mom is getting her dementia meds. I was shocked when one of the medications she listed off was sertraline (brand name Zoloft), because Mom hasn’t taken that for over three years. I went to talk to the nursing supervisor to find out who had ordered that medication and learned it was started at the hospital. They were giving her TWO antidepressants at the hospital, he told me — Zoloft and Trazadone — but they discontinued the second when she was discharged to the SNF.

I knew something wasn’t right. She’d sounded unusually lethargic and depressed when I called on my lunch hour that day, and was saying things like “I just want to give up” — utterly out of character for my mom, who is nearly always cheerful. When I got home, I checked the discharge paperwork from the hospital and saw that they’d diagnosed her with Major Depressive Disorder (MDD). Umm, WTF?! She may have been sad, lonely or confused while in the hospital, but she most certainly does not have major depressive disorder.

I couldn’t do anything about that over the weekend because the nurses needed a doctor’s order to change medication. Yesterday I worked from home so that I could go over there first thing and talk to the physician’s assistant on staff. She wasn’t in yet, so I explained the situation to the social worker, who promised to relay my concerns to the PA and have her call me. I went home to get some work done and dropped by for another brief visit with my mom at lunch.

When I got a call from the nursing center in the afternoon, I assumed it was the PA calling in response to my request to discontinue Zoloft… and I was stunned when it turned out to be a case manager calling to tell me that the Medicare HMO was only going to cover three more nights and they would need to discharge her on Thursday. Wait, what? Will she get Home Health services? No Home Health, the case worker told me. The determination of the insurance was that Mom wasn’t making progress with her therapy, so they weren’t going to authorize ANY further physical or occupational therapy.

I felt like I’d been kicked in the stomach. Before she went into the hospital, she was ambulatory — getting around her home with a walker, though she’d started to need a wheelchair for excursions — and could transfer with minimal assistance.  Now she practically has to be lifted from the wheelchair back into bed, and they wan to send her home like that? How the hell is she EVER going to walk again without physical therapy?

The case manager and the social worker at the nursing center encouraged me to file an appeal of the denial of coverage. They gave me the phone number of the appropriate agency, and the social worker talked to me at length to document Mom’s baseline functionality. I was given to understand that winning the appeal was unlikely and that we might need to appeal several times just to get home health visits covered. I worried that we wouldn’t even get an answer on the first one before they kicked her out. But I filed the appeal, and I started gathering the information I will need to file a grievance against the hospital for misdiagnosing my mom and prescribing an unnecessary and potentially harmful medication.

Just before 5:00 pm today, I got a phone call from the woman who handled my appeal. I was braced for “We tried, and you can always appeal again.” When she told me something different, I was so surprised I had to ask her to repeat it. “She won!” she said, sounding a little bit astonished herself. “She won the appeal. Do you know how unusual this outcome is?”

I don’t know for sure, but I think this gives her at least another week of coverage for inpatient rehab at the nursing center, until the next weekly plan of care meeting happens next Tuesday. And I’ve been assured that when she is discharged, she will get home health PT. Meanwhile, the SNF physician agreed to step her down off the Zoloft, starting with a half dose today. I’m hopeful that she’ll soon be feeling more like herself.

And now I just need to get through my last two days on the job and an exit interview on Friday morning, and I can be there to keep a closer eye on her progress. I’m tired. Mom is tired. Nevertheless, we persist.

Learning to trust

All the astrologers who warned that the “eclipse season” this month was really going to shake things up were apparently not kidding around.  Just a couple days before the lunar eclipse on August 7, I learned that the position I’ve held with my company for almost 7 years is being eliminated and I’m getting laid off at the end of the month.  There’s a decent severance package, so I’m in the fortunate position of being able to take a little time to rework my resume and consider this unexpected change in career direction without needing to panic about how to pay rent… but I was still reeling a bit from the shock when…

Two days before the solar eclipse, I got a call from the owner of my mom’s care home. I was up in Portland visiting friends and we were in the car driving to meet some other friends for a fun event when my phone rang. When the owner of the board and care told me she had to call 911 for my mother, my stomach dropped to somewhere around my feet. I thought she was going to tell me my mom was dead or dying, I truly did. After learning that it wasn’t (necessarily) something immediately life threatening, I explained that I was out of town for a few days and asked her to call my niece. When my niece texted me that she was also out of town, I texted two other friends who have helped with Mom in the past. They were also out of town. As luck or fate would have it, ALL of my usual “go to” people were out of town that weekend;  even the pastor’s wife, the only  person from Mom’s church for whom I have contact info, is on sabbatical. That’s when I started melting down. Thankfully I was with two of my oldest and dearest friends, who let me have my freak-out and then calmly helped me start problem solving.

I take the responsibility I have for my mom’s care very seriously. I know she trusts me, that she now  looks to me for the kind of comfort and security she gave me when I was a child. It was absolutely unacceptable to me that she was alone in a hospital ER for hours, to say nothing of the fact that she wouldn’t be able to answer any of their questions about her medical history. But the hospital had been given my name as emergency contact and they reached out to me when they needed answers.  And at my friend’s suggestion, I reached out to the hospital chaplain, who kindly agreed to check on my mom in the ER and reported back to me that she was calm and lucid. The pastor’s wife forwarded my email to someone else from the church, who started a prayer chain and organized two volunteers to visit Mom at the hospital.  And none of it was ideal, but it was OK. Mom is OK, or she will be.

She was admitted to the hospital after nearly 7 hours in the ER, with a diagnosis of pneumonia and pulmonary edema. She had fluid in both lungs and was having difficulty breathing, but quickly started improving once they started her on oxygen and antibiotics and increased her Lasix dose. I spent a lot of my time in Oregon on the phone, managing her care as best I could long distance and keeping the family updated.

After three nights in the hospital, they were ready to discharge her to skilled nursing rehab. I was supposed to be home in time to manage that in person, to get her discharge instructions and be with her for the transition, but my flight was three hours late and the hospital had already made the transfer arrangement. I was pretty unhappy about that, and am still pretty pissed off that they let a dementia patient sign off on her discharge instructions and didn’t go over any of it with me via phone, but… again… while it wasn’t ideal, it was OK. She survived. I survived. We’re both feeling a whole lot better today.

I know that there’s a lesson in the confluence of these two events, losing my job and my mom having a medical emergency when I was out of pocket. I wish I could sum up that lesson neatly in a sentence or two, but right now all I know is that it’s about letting go of control and learning to trust.

Breaks My Heart Every Time

There’s a new resident at my mom’s care home. I’ll call her Jenny. The first couple of times I met her, she seemed so together – introduced herself, remembered on my next visit that I was Dorothy’s daughter and she’d met me before, asking my mom how it went at the doctor when we returned from an appointment – that I almost wondered why she needs to be in board and care. She walks with a walker, but (like my mom) seems to get around really well with it. I was happy that my mom would have someone at the house to chat with besides the caregivers, who are really kind and engaged but too busy to just sit and visit with her.

Then one time when I brought Mom home from an appointment, Jenny said to me “I know you! You live next door to Bert, don’t you?” I shook my head. No, sorry, you’re thinking of someone else. “But I know I’ve seen you there,” she insisted. “I know you!” I told her again, you’re thinking of someone else. I don’t know Bert. Mom spoke up then, saying, “This is my daughter. You’ve met her before.”

Jenny may get confused about who I am, but she always seems happy to see me when I come in. Whoever she thinks I am, I’m glad that person is someone she likes.

This afternoon when I brought Mom home from church, Jenny met us just inside the door. “Will you do me a favor?” she asked me. I was busy helping Mom, who had taken off her sunglasses and was asking for her regular glasses from her purse, so I didn’t respond. Jenny was saying something about someone she hadn’t seen in a long time. Maria, the head caregiver, held up a pill bottle and started talking to me about one of Mom’s medications that needs to be reordered.

Jenny was still talking to me, looking intently at me from a few yards away, but I hadn’t heard a word she’d said. She started to cry, loudly, like a small child. I looked helplessly from one caregiver to the other, hoping one of them would do something, but they were paying Jenny no mind. “I’m sorry to be a crybaby,” she was saying, sniffling. I felt horrible.

I kissed my mom goodbye, told Maria that I would request a refill of that medication, and headed for the door. Jenny was between me and the door. She stopped sniffling and looked at me with hopeful eyes. “Will you drive me to the party?” she asked me. “It’s not far from here, just over on Van Nuys.”

I put my hand on her shoulder and said, as gently as I could, “I’m so sorry that I can’t.”

Jenny began to cry again, almost wailing, “But I haven’t seen them for so long!” I patted her shoulder helplessly and then moved toward the door.

As the door was closing behind me, I was relieved to hear Maria saying “What’s the matter, Jenny?”

If my mom was crying like that, it would break my heart. But she’s my mom and maybe there would be something I could do to make it better. I never know how to respond when it’s another resident. And it breaks my heart just the same.

Two Scares in Two Weeks = Too Many!

Early Sunday morning, February 8, I got a call from my sister in Colorado. My oldest niece, who is in her first year of college here in California, was in a hospital with a fractured skull following a surfing accident. I called the hospital, who confirmed that she was still in the ER and that I would be allowed to visit, and arranged for a friend to go with me. All that I knew when we left for the hospital was that my niece was lucid and able to talk. I clung to that on the 90-minute drive down, praying that her ability to talk (and even joke) meant no brain injury. When I arrived at her bedside, one of the first things she did was wiggle her fingers and toes for me to show me that she wasn’t paralyzed. Thank God!

She was incredibly fortunate. A hairline fracture at the base of her skull, two fractures in her C1 vertebrae – but no brain injury, no paralysis, no need even for surgery to repair the bones. The neurosurgeon got her fitted for a neck brace, which she’ll wear for about six weeks to allow the bones to heal themselves. I spent most of two days in the hospital with her, until her Mom could get a flight from Denver. Then I went back to work, exhausted but grateful.

Last Wednesday night, I turned my phone on at the end of my evening class to find multiple messages from the owner of my mom’s board and care. Call me as soon as possible. Gulp.

Mom had a nosebleed that wouldn’t stop and the blood was draining down into her throat. The caregivers were worried that she might choke. The owner had taken her to the ER. I jumped in my car and met them there. The nosebleed had mostly stopped by the time I arrived, and I wondered if we were going to waste 4-6 hours at the ER for nothing… but no sooner had they taken her into the back to get her vitals and medical history, she vomited a dark bloody substance into her lap. Twice.

I was horrified at the sight of it. And I saw the alarm in the eyes of the nurses and techs, who rushed her to a bed in the back to get her hooked up to the monitors. Her blood pressure was dangerously low. For the second time in two weeks, I faced the possibility that everything could be coming unraveled in an instant. I didn’t know what vomiting blood might mean, but it didn’t look good. And I was especially worried because I was scheduled for surgery myself in just one week – who would take care of her if we were both in the hospital at the same time?

Thankfully, again, we were lucky. Her labs checked out just fine, her blood pressure returned to her high normal range, and there were no further symptoms during the three or four hours they kept her for observation. The doctor concluded she had simply swallowed blood that was trickling down from her nosebleed, and her stomach rejected it.

It was a long night. We had been taken to a room in the back of the ER, so I didn’t see how much activity was going on up front, but apparently they were very busy. After the labs came back and the doctor paid an initial visit, we were pretty much ignored. Mom complained of a bad taste in her mouth (no wonder!), but when we asked for water or ice chips none were forthcoming. I did manage to track someone down to get her a blanket because she was shivering. The blanket they brought was heated, which helped her get some rest for a while. When she got cold again, I put her corduroy coat over her for some extra warmth. And we waited…

It was 1:30 a.m. by the time we were given the OK to take her home. And the miracle of all of this is that the owner of the facility (AND her husband, who had driven her over to check on Mom and then brought them both to the ER) stayed there with us until the very end – and then they took her home, so that I could go home myself and get some sleep. When this woman says “the residents are my family,” clearly she means it. Once again, I left a hospital feeling completely exhausted but deeply grateful.

Wednesday I go in for laparoscopic gallbladder removal. Mom has been doing fine – no more nose bleeds, more active than usual with my brother visiting – so I’m not worried. I also know now that if there WAS an emergency when I couldn’t get there, I can trust her new “family” to take good care of her.

Ice Cream and Choo Choo Trains

Sorry for the long absence. Mom has been doing really well and I’ve been able to focus a little more on my own life the past few weeks. About a week ago I took her to an ice cream social at her church, which she really enjoyed. After ice cream sundaes and announcements about the women’s fellowship programs, they played Bunco – a dice game that involves lots of changing partners and moving from table to table. I was a bit nervous about it because I wouldn’t be able to stay with Mom throughout to help her keep track of the rules or her score. There was no room between the tables to maneuver her walker, so we left it parked in the corner. She did just fine. She must have gotten up and down, on her own, at least a dozen times. When she needed a hand, someone was there to lend one. When she forgot to tally her score, someone reminded her. She had a blast!

This afternoon I took Mom to her three-month followup with the neurologist. Dr. O was pleased with the improvement in her gait and balance, and with what I reported about her increased leg strength. We don’t have to see her again until December. When we left, I asked Mom if she wanted me to take her to get her hair cut, but she wasn’t in the mood for that… so we went to Foster’s Freeze for milkshakes instead.

On the way there, we were stopped for a bit at a railroad crossing while two commuter trains zipped by, one going each direction. Mom was very interested in them. After the trains passed, she turned to me and said “I’ve been thinking, the next time I go back to Ohio, I’d like to take the train instead of flying.”

The train? To Ohio?? That’s over 2,000 miles! It would take DAYS.  When I expressed that concern to Mom, pointing out that the travel time would significantly cut into the time we would be able to spend with family once we got there, she said we could fly home. She wouldn’t be dissuaded from the idea, so I finally told her that I would do some research – find out what it would cost and how long it would take to get there. “I hoped you would,” she said.

Personally, I’m hoping she forgets all about this. Though I’ve always wanted to travel by train, I don’t think I’d sign up for a journey that long even with young, healthy companions to join me. A 43-hour train trip with an elderly dementia patient might land us BOTH in the hospital! Besides, the sleeper cars cost almost twice what it will cost to fly Southwest.

It would be fun to ride a train together sometime, though. Maybe just a short trip, like up to Santa Barbara for the day…

“I have to move out of here…”

I had a stressful Monday, from computer problems the first 90 minutes of my workday right up to leaving work and finding my car in the garage with a flat tire. Thankfully, I was able to get the tire fixed relatively quickly and inexpensively. I picked up takeout for dinner because I was in no mood to cook.

Got home and grabbed the phone to call Mom while I dished up the shrimp with lobster sauce and poured a glass of wine.  Conversation begins like this:

“Hi, Mom.”

“Hi, sweetie! How are you doing today?”

“Better now. It was a stressful day, but it’s all good. How are you doing?”

“Oh, I’m doing pretty good. But I’m going to have to move out of here…”

I had about two seconds for my heart to drop into my stomach, thinking “Oh God, not this! Not today! What could have happened? She’s been so happy there…” — and then she continued,

“… because people are watching TV and I can’t really hear you.”

“Oh! You want to move into the other room where you can talk better? OK, I’ll hold on.”

Huge sigh of relief. It’s all good.