Tag Archive | caregivers

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.

An Attitude of Service

The last hymn we sang in church today was Make Me a Servant:

Make me a servant, humble and meek,
Help me to lift up those who are weak

As I sang that second line, I felt my throat tighten and my eyes sting with tears. How very apt, especially after I had literally helped lift my mom to her feet several times during the service.

I also had to take her to the church bathroom twice, right before the service and again in the middle, causing us to miss most of the sermon. While we were in there the second time, she commented wryly that “Something’s wrong when taking care of your mom becomes more trouble than taking care of a toddler.” I just smiled and tried to shrug it off, but I was pretty frazzled… especially when I had to run to my car, parked a block away because we got there too late to claim one of the few parking spaces behind the church that are reserved for the elderly and handicapped, to get her a clean pair of disposable underwear.  Maybe I should start carrying a diaper bag, just as if she really was a toddler.

She has lost twenty pounds in the last couple of months. It feels like she’s wasting away before my very eyes, and it frightens me. I vacillate between being stressed out (about her health, about finances, about all the responsibilities that fall on me) and just being grateful for every single moment I get to spend with her.

I’m working on my attitude toward all of this, trying to focus on the gratitude part and cultivate a spirit of loving service. Earlier this week I had thought to make my next blog post in praise of the caregivers at her new home, how they go above and beyond what I had previously come to expect of caregivers. Everything they do, even when their residents are querulous, is done with patience and a smile. Nothing seems to rattle them. They take it all in stride, just smile and calmly attend to the needs of the moment. This is what I’m working on, what I’m striving for.

This work, being a caregiver for my mom, this is the work of my soul right now — tempering and shaping my spirit for whatever is to come next. Even when I feel resentful, I know this is where I’m supposed to be right now, what I’m meant to do. I have no idea how much longer I’ll have this job, or what I’ll do with my life when this phase of it is over. So for right now I’m really trying to stay in the moment, to enjoy the little things like holding Mom’s hand in church, and to be grateful for the opportunity to be of service.

Coming Home

I saw my mom this evening for the first time in a full week. The last time I stayed away that long was probably sometime last fall, when I had the flu. I was out of town Thursday through Monday and felt under the weather yesterday, so I stayed away… just in case I was coming down with something contagious.

So, anyway, I saw her tonight… and I was brought up short by how thin she looks, how very frail. She’s 5’7″ and weighed in at 167 the last time she got on a scale at the doctor’s office, and “underweight” is not a word that I’ve EVER associated with her. She’s still got some heft to her hips and thighs, but her arms and hands look like skin and bones. When did that happen? Is it just more noticeable since I’ve been away for a while and missed the day-to-day changes? I’ve been told she’s eating better at the new place… so why is she still wasting away? It was very disconcerting.

She lit up when she saw me and gave me a tight hug. I took her back to her bedroom so that I could plug in my laptop and do a slideshow of the pictures I took in Colorado, taking time to tell her the stories behind each picture. She seemed to enjoy them. I talked about the graduation events, brought her up to date on the latest goings on with her grandchildren, and also shared about the really special time I’d gotten to have with my sister, Mary Lou.

Then, since it was a very pleasant evening, I took her outside to sit in the back yard. Maria, the head caregiver, came and put blankets on the patio chairs for us and brought my mom a light sweater. We sat there for a few minutes, drinking our bottled water and talking, and then Mom asked if I would take a walk with her around the edge of the yard to look at the flowers. Her walker doesn’t roll well over the grass, so we left it behind and walked slowly, arm-in arm, Mom leaning on me for support. She showed more interest in the various bushes and flowers than she had in the family pictures, asking me numerous questions about the types of plants (which I could never answer). When she leaned forward to reach for a blossom and overbalanced, and would have fallen if I hadn’t been holding her arm, I decided it was time to go back to the patio… via the porch, so she could hold the railing on one side and my arm on the other. We sat for a while on the patio, listening to birds and watching the changing colors of the evening sky.

back garden

“Who lives here?” Mom asked me suddenly. “Is this Mary Lou’s house?”

I tried not to show my surprise and just answered calmly, “You live here, Mom.”

“I do?!?” she exclaimed. “Who else lives here? Someone must…”

I started to explain about the five other ladies who live in the house, and how Maria (who brought her sweater) is one of the helpers who take care of them. She knew who I was talking about, which was a good sign, but said “I haven’t been here for a while, at least a week. I’ve been staying so many different places, and my memory is so bad these days…”

(She’s been at this home for a month now and she hasn’t gone anywhere else, except for brief outings with me – to church or to get her hair cut or to the doctor. In fact, I’m pretty certain she hasn’t left the house for a week.)

I squeezed her arm and told her that I was sure it would all be familiar once we went back inside. And sure enough, she recognized her bedroom and the TV room where her friend Georgia was waiting for her to come watch Wheel of Fortune. She settled into her recliner and seemed perfectly content to be there, so I took my leave… and walked to my car feeling pensive and sad, wondering how much further she had slipped away from me in that one week I was gone.

Graduation

I was feeling selfish and a little guilty about making this trip to Colorado for my niece’s graduation without Mom. But over and over in the past three days I’ve found myself feeling so grateful that I listened to the people who told me the trip would be too much for her and didn’t try to bring her along.

First there was the flight, which was three hours late due to severe weather that forced an unscheduled landing in Colorado Springs. We didn’t land until 8:00 p.m. and didn’t get dinner until after 9:00. (To say nothing of the hassle of getting on a crowded train to the Baggage Claim building with an elderly traveler in a wheelchair.) My nephew’s flight, scheduled to arrive in Denver at 7:00 p.m., was also late. We didn’t get back to my sister’s house until 11:00 p.m. It was exhausting for me, and it would have been WAY too much for Mom.

The very next day was graduation day. The ceremony started at 7:00 pm, but we wanted to get good seats so we left at 5:30 to arrive at the auditorium at 6:15. Sarah, my niece, was the fourth or fifth person across the stage to receive her diploma – out of a graduating class of 110. The ceremony lasted two hours, then there was a reception with photo opportunities, and then we FINALLY went to dinner at 10:00 p.m. I was delighted to be there and share in my niece’s excitement on her big day. But Mom would never have made it through all of that. She has the attention span of a toddler these days and would have been restless and bored through most of the ceremony. By 9:00 she’s usually getting ready for bed, so I would have needed to take her back to the house and would have missed all the post-ceremony celebrations.

And if we’d stuck with the original plan, we would have been on a plane first thing this morning to travel to Ohio for the annual Memorial Day family picnic, which is tomorrow. I was so tired today that I slept until noon. I was deeply thankful NOT to have to get up and get to the airport. Mom would have been so exhausted from all this hectic activity, I doubt she would have had the energy to enjoy the family reunion even if we’d made it there.

No, it was definitely for the best that Mom stayed home – with her new friends at the board and care and her comfortable routine. I’m not feeling guilty anymore. And I no longer feel selfish because I’ve been able to help my sister in myriad small ways while I’ve been here, which I would not have been able to do if my focus had to be on taking care of Mom. My sister and I had a deep heart-to-heart talk today that I think did both of us a world of good. All of this made possible by me making the “selfish” choice to take this trip alone. I’m so glad I did.