Tag Archive | caregiving

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.

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.

Not how I expected to spend my Sunday

I’m writing this perched at the foot of my mom’s hospital bed. We were at church this morning and the service was just starting when she said she had to use the bathroom. She was sitting on the toilet and I was crouched on the floor in front of her, helping with her pants and shoes, when she suddenly grabbed the handrail and slumped sideways against the wall.

“Are you OK?” I asked. No response. “MOM, are you OK?!”

The third time I asked, she mumbled something unintelligible. It sounded like her mouth was full of marbles. She was leaning so far over, I was afraid she’d slide right off the toilet and hit her head. I stood in front of her, holding her arms, tried to get her to sit straight again but she kept slumping back against the wall.

I thought she might be having a stroke. I was terrified. I told her, as calmly as I could, that I needed to take her to the hospital. It was probably only a moment or two before she said, softly but clearly, “I’m OK.” It felt like hours. I asked if she thought she could stand so that I could pull her pants up. Holding onto me and the handrail, she managed to do that. I got her dressed, seated on the seat of her walker, where she slumped forward again, and rolled her out of the bathroom. Then I ducked into the sanctuary and saw the pastor’s wife standing just inside the door. “I need help!” I told her. “I have to get my mom to a hospital.”

The pastor’s wife brought two men to help, who between them were able to lift Mom’s walker down the two steps to street level. One of the men scooped Mom up like she was a little girl to put her into my car. I pulled out my phone to get directions to the nearest hospital, and my hands were shaking so much I could hardly type. I still didn’t know what had happened to my mom, and all I could think was that I was wasting valuable seconds.

Thankfully, the hospital was less than five minutes away. Miraculously, there was no line in the ER when we arrived. They took her back right away, took her vitals and history, got her into a room where she was seen by the doctor. Everything looked fine except her heart rhythm, which he described as “very slow and irregular with long pauses.” He said that would explain her fainting spell and also the periodic episodes of lightheadedness she’s been having for the last six months or so. She was admitted for observation. They are making some changes to her medication, which might correct the issue. If it doesn’t, the next step is a pacemaker.

By the time we got up to her room in the cardiac ward, she was feeling like her usual self. They brought her a lunch tray and she ate heartily. Same with dinner. She doesn’t remember anything that happened at church and keeps asking me why she’s in the hospital when she doesn’t feel sick, but she’s lucid and her voice is strong… and I am so SO thankful that it was not a stroke.

And even though she probably took five years off my life with that scare this morning, I am hopeful that getting this properly diagnosed and treated is going to improve the quality of her life – and, by extension, the quality of mine.

It’s enough just being in the same space

Tomorrow I leave for my 9-day camping retreat. I wanted to spend some time with Mom before I left, but I’ve had so much to do to get ready for this trip that I haven’t had a spare minute. My compromise was to pick her up after work yesterday and bring her to my apartment to keep me company while I worked.

When I arrived to pick her up, she was reading the new Jan Karon novel that I bought her for her birthday and I suggested she bring it along. On the way over I bought her a chocolate milkshake, since I knew she’d ask for coffee or something sweet and I didn’t have either on hand. She was quite happy sitting and reading on my couch while I cleaned the kitchen. As she put it, “We don’t always have to be talking to enjoy each other’s company. It’s enough just being in the same space.”

After my husband died in 2010, I went to stay with my mom for a few months. I remember what a comfort it was just having another person around, even if we were at opposite ends of the apartment and didn’t talk for hours at a time. I’ve grown to love living alone (with my cat), but Mom never did get used to it after Dad died. I think that’s one of the reason she’s so happy at the board and care, because she is literally never alone there.

We sat on the couch and talked for a little while. Mom reached over to my end table and picked up a framed photo taken on her 79th birthday – the very last picture of me with both of my parents, on my last visit to Arizona before my dad died. “I don’t remember him looking this old,” she said, “with all that gray in his hair. I know he was older when he died, but in my memories he’s young.” We talked about Dad and shared some memories. It felt good to make that connection.

Three of Us 2007

We also talked about my upcoming trip – several times. And every time I mentioned something about it, she would ask me “Where are you going again?” I lost count at the seventh time in less than two hours. She’s been doing better with her memory lately, so that was just a little bit disconcerting.

When I dropped her off back at the board and care, I picked up the notepad she keeps beside her chair and wrote her a note explaining when I was leaving, where I was going and when I would be back. I signed it “I love you, Mom!” I hope that if she starts to wonder why she hasn’t heard from me, she’ll think to look at it. And I hope the next 9 days go by quickly for her…

… though not TOO quickly for me. I want to relish every unplugged minute of freedom to just take care of myself.

What a difference a year makes

One year ago my mom was diagnosed with normal pressure hydrocephalus (NPH) as the cause of her dementia and balance/mobility issues. She was perpetually confused, couldn’t remember basic things like where she lived or what season of the year it was. At the time she was also recovering from a serious infection and had such severe edema that she couldn’t fit shoes on her swollen feet. She was not sleeping well at night and wanted to stay in bed all day. Walking farther than across the room tired her out. She had lost twenty pounds in three months, and I felt like she was wasting away in front of my eyes.

Yesterday Mom had her annual check-up with her primary care physician and the news was all good. Her weight has been stable (at about 134) for six months. Her heart function is good and the edema is long gone. In the mini mental exam, she correctly answered the year, the season and the day of the week. When asked what state she lives in, she automatically said “Arizona” (where she lived for 20+ years) but instantly caught herself and added “No, I live in California now.”

When the doctor asked her how she’s been feeling, she answered with a smile, “I feel great! For my age, I think I’m in remarkably good health.” Compared to this time last year, it really IS remarkable. You can see it here, comparing her birthday photo this year with the one we took last year.

Mom Then and Now

A year ago I was anxious about leaving her for a weekend to attend my niece’s graduation. At the end of this month, I’m taking a real vacation – nine days at a campground without internet connection or cell reception, truly unplugging from my job as caregiver for the first time in three years. I’ve made arrangements for someone to take her to church, for a friend to check on her mid-week and for another friend to be on call in case of any medical emergencies. But I’m not worried. She’s healthy and happy, and I know she’ll be just fine while I’m gone.

What a difference a year makes!

New blouse

Brownies for everyone

Wednesday will be two weeks since I had my gallbladder removed. The outpatient laparoscopic surgery went very well, no complications, but the first week of recovery was pretty rough. I’m still not sleeping well, and it’s only in the last couple of days that I’ve started driving and getting out of the house for more than a walk around the block. Today I made my first visit to Mom in 13 days.

I made a pan of brownies (from a mix) a few nights back when I was bored and craving chocolate and, because I do NOT need to eat an entire pan of brownies by myself, I packed up most of them to take to Mom. I had to stop at Walmart and pick up a prescription for her on the way, so while I was at it I stopped in Starbucks and got her some “fancy coffee” (a vanilla latte) to have with her brownies.

Mom was, as usual, in her recliner in the TV room with the other ladies. Her face lit up when I handed her the coffee and showed her the brownies. She ate one, licked her fingers appreciatively, and then leaned over to her roommate in the chair next to her, tapping her on the arm and gesturing toward the Tupperware container in my hands. “Have one!” I passed the brownies to Yoko, who took one carefully and said, with a big smile, “Thank you.” In all the many times I’ve visited, it’s the first time Yoko has ever spoken to me. Usually she just smiles and nods, and I wasn’t even sure if she understood English.

The three wheelchair-bound residents were all seated around the dining room table, and I saw one of them turn her head to see what I was doing. I smiled and brought the brownies over to the table. Though none of those ladies speak much, and two of them need assistance to eat, their smiles said it all. Chocolate is a universal language.

After I’d handed out brownies all around, I returned to my seat next to Mom. “Thank you,” she said quietly. “I don’t have anything to share around except when you bring something.”

We sat and talked for a little while, about my surgery and about my brother’s recent visit to her, and then I suggested that we play a game of Scrabble. The staff made room for us at the end of the dining room table while I brought the game from Mom’s room. We only play a couple times a month now, so Mom always needs a little prompting at the start about how many tiles to draw and what to do with a blank one… but once she gets going, she still plays as well as ever. We played two games. I won the first by three points, she won the second by two.

She’s always enjoyed Scrabble but I don’t think I’ve ever seen her have so much fun with a game. Her eyes were sparkling and she got enthusiastic about every good play, whether it was hers or mine. After she played a Z on a Triple Letter Score and got a 42-point word, she did a little dance in her seat. It made me so happy to see her like that, I hated to stop at two games… but my surgery area had started to ache and I needed to get home and lie down with an ice pack.

I left the brownies on the little end table by her chair and reminded the staff, who had declined them earlier, that they were for everyone.

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.