caregiver sadness

Felicity and Separation

James S Russell3 Comments

Caregiving Caregiver Loneliness Caregiver Fear

When we went for our drive Monday she hesitantly let me buckle her in. I gave her a blue thank you card from a friend for the surprise birthday visit Lynne and I gave him. She said, “Oh look, he remembered my name.”
I inserted it in a book of poems I bought her by Mary Oliver titled, Felicity, the quality of being happy.
“Who gave me this, Nancy?”
“Yes.”
I don’t think she remembers I’m Dad when she sees me. She doesn’t call me Dad. She’s losing track faster than I expected, even though she has regularly dropped rapidly followed by stable periods. This feels like the last stage of recognizing people. I knew it was coming, but I am surprised how much I’m afraid. Karen and I cared for her until I lost her, forcing me into a primary focus on Lynne and a memoir to adapt to being a widower. I don’t know what I’ll do when she loses all recognition in steeper and steeper declines. Where do I find my purpose? Is writing her memoir enough? Caregiving is getting harder.
At least we have car trips with a vanilla shake at Dick’s Burgers. I buckled her back into the front seat and set the shake on the roof above my back seat before I climbed in. When I remembered the shake on the roof I hoped it was still on the roof with my smoothly slow driving. It was gone and I needed to run through the car wash. I reminded myself to put drinks on the hood of the car, instead of the roof, so I’ll see it when I get behind the steering wheel. It’s worked for decades. Am I losing it? I recovered by stopping at Starbuck’s in Leschi for her favorite lemonade and iced black tea. She never missed her shake. IBesides, if she’d remembered it we’d have been fine. Karen would have reminded me.
My drive was designed to place her in a sanctuary. I was mostly silent. She agreed to a playlist of her birthday songs and sang their lyrics. I let her rest, relax. My purpose is to stream experiences into her psyche she rarely feels in assisted living. When I drive she moves and sways. She effortlessly experiences cherry blossoms, yellow daffodils, an Orthodox church, playing fields, playground equipment, Montlake elementary, Lake Washington Drive, arboretum, children, horns, jack hammers, air brakes, dogs, cats, a dog kennel, the Coyote shop, the smell of coffee and ripples on Lake Washington glistening with sunshine under a blue sky over snow-capped mountains.
The streaming experience is guiding her mind instead of me, staff, schedules, medications, meals. She is connected with me. She fingered the blue thank you card and rotated Felicity from front to back. She opened it. “That’s so nice of Nancy. I’m going to read this.”
Speaking is easy, flawless. “That playfield is deep. The arboretum is beautiful. Look at the dog. Oh, there’s the dog kennel. That Cayote shop is so good.”
At one point I reached for something near the gear shift and she slapped my hand with the blue thank you. Why? What was that? Was she warding off my hand? I know she’s been afraid and anxious, so was this an impulse to ward off somebody touching her? On our last hug she gave me a loose shoulder hug. Is she fearing an embrace because she is losing recognition of people?
My purpose of the trips iis to give a sanctuary without the necessary demands of institutional care where she is denied, corrected, and redirected. In her sanctuary she did not ponder answers to questionanswering. She was not confused, anxious, lost, afraid, wandering, confronted, threatened, unsteady, alone, hiding, escaping, shouting, angry, aggressive, hopeless, useless, hungry, thirsty, tired, worrying, hurting, stumbling, or falling.
Creating her sanctuary makes me lonely. I don’t tell jokes to hear her laugh, or praise her boys to get her joyous. Talking pressures me and and it’s not reaching her as meaningfully. I have become a bystander, a monitor. I know loneliness is normal in Seattle’s dreary winters, but I haven’t been lonely. I shared my feelings of loneliness with my son on his visit, and my youngest daughter on the phone. She was lonely because she couldn’t visit. I shared my feelings with three care groups, which is all I could work in. They all helped me.
I had an epiphany: visit my daughter in Chico, California. She has been isolated, I have been vaccinated, we are lonely. She isexcited. I’m excited. It lifted my loneliness from facing another weekend alone watching players dribble in every basketball game I could record. I’ll hug my daughter, her husband, my dog and her dog. We’ll walk in 70-degree sunshine along a river running through the forest in Chico. We’ll talk about our writing. I’ll work on her patio. I feel guilty because I’m leaving Lynne in assisted living. I doubt I’ll tell Lynne I’m visiting her sister. She won’t miss me. We can talk by phone. I feel guilty about keeping it a secret. Telling her would make her sad. I worry she’ll discover I’m there. She loves to visit her sister.
When I dropped her off, I turned to wrap her in my arms, but she resisted as if I was smothering her. She turned to ask the concierge for help with Marilyn. He reached out to touch her hand, “OK, say it again Lynne, because I don’t know anyone named Marilyn.”
She held Felicity in her other hand.

A Care Team Shares How to Fight COVID Isolation

James S RussellLeave a comment

Short short Story

Lynne and I are fighting alongside caregivers for Lynne’s well being under the COVID-19 lockdowns. We succeed and celebrate at times.  We fail and despair at times. The extra heavy effort is taking its toll and still, I believe we will persist because we are listening, sharing and being patient with each other as we continue to make plans.

The main issue is how to care for Lynne when she spends lengthy, lonely hours in her room. She gets anxious and leaves her room and is admonished for leaving and is returned to her room.  She feels like she is trouble and they don’t like her. She gives herself pep talks and says, “I can do this.”

But few things occupy or empower her, leading to the spiral downward again and afraid to leave her room for help. She’ll call me in tears. “Why am I such a crybaby?”

Lynne’s new floor supervisor, Sally (not her real name), shared her experience. “I spoke with Lynne at length last night, while she soaked her feet, to reassure her she’s healthy and not to blame for anything.  I’ll be honest, it’s a conversation she and I have several times a day. It’s always a good talk, she’s always smiling and feels better afterwards, it just seems after some time alone she comes back to the same conclusion that she’s sick or a bad person. The best we can do is continue to reassure her and try to keep her occupied while in her room.”  

It’s hard to occupy her under lockdowns. She was a special education teacher and high-tech human resources specialist who talked with people to be sure they’re OK, but that impulse is completely stymied.

She and I call each other for video chats.  I tell funny stories, and sometimes get a laugh. I ask her about latest book, have Alexa play music, suggest we turn on the TV. We are frustrated because her wandering fingers turn her Facebook Portal on and off, pull echo dot plug out of the wall, turn off the TV, or turn off the sound on the TV. She gets defeated because she presses buttons on the remote but they don’t work. She quits and I feel helpless.  I call the concierge and they promise to call the floor.

I emailed Sally for help a few times as she asked but she never responded. After another night unable to cheer up Lynne, I vented in another morning email to top administrators.

Luna, the Assistant Director called that morning to talk about Lynne’s health care and mine. She worries because when Lynne and I have lengthy talks, she gets deeper anxiety from me and I get deeper anxiety from her. I admitted Luna was right. We both need help.   

She advised me to be cheerful like she is when she comes into the room. I watched her skillfully cheer up Lynne and try to mimic her cheerful voice and ability to distract Lynne away from anxiety.  Luna said, “She is so upbeat that it’s easy to do.  When she goes down, divert with all the funny stories and things that you’re doing.”

I admitted her technique works when staff come in with positive ways to dress her, help with shower, make her bed, give her breakfast, turn on TV, give her meds. But I’m stressed as a remote caregiver. I can’t do anything except talk, and she is anxious and afraid by the time she calls me.

Luna listened to me and got it.  She said, “Do this: tell her you’re going to hang up and call me or Jessica, the assistant director of overall care (nor her real name).”

I said, “I don’t like to do that because I want to respect your role as overall care director.  So, I call the concierge.  I’ve emailed Sally and she won’t return my emails.”

Luna understood and explained Sally was assigned to stay in the room of a COVID-19 patient and worked extra long hours. And Mina was gone that week. Luna repeated, “Call me or Jessica any time and we’ll get help. I don’t like emails.” 

I was pleased to be able to reach out to them and learn why Sally hadn’t responded. Luna had more news. COVID-19 restrictions should lift soon as everyone has tested negative. Lynne will be able to walk outside. She and her exercise director are going to bring down an exercise machine from the gym and try it for a week in her room. If it works, I’ll have to order one for her.  

Luna senet me a follow-up email, “Thank you Jim, I appreciate our conversations so much.”  She said a favorite caregiver of Lynne’s knows TV shows she likes and is going to make sure she is set up throughout the day.

I thanked her for our open conversation. That day I saw the plan in action while Lynne and I video chatted and she watched television. The TV caregiver came in and said, ”I know a show you like so you don’t have to watch tennis all day.”

She liked it. We called her sister to sing happy anniversary.  She said, “This Covid-19 thing isn’t so bad.  We’ll get through it.” We chatted for an hour-and-a-half as I did some work.  

That night she woke me up at 9:30 pm and again at 11:42 pm when she was in her regular clothes. She couldn’t sleep. The second call I told her she was in the safest and best place she could be and ordered her to go back to bed.

I couldn’t sleep. I was so stressed I worried about my heart. I had a cardioversion two weeks ago to restore a normal rhythm and suddenly I felt like my pulse was racing. I transmitted my heart data from my pacemaker to Boston Scientific. I took my pulse four times on my home blood pressure kit and had pulse ratings 115-116. Doctors said they get worried at numbers over 100. Should I call a doctor? I waited until morning. I emailed Luna that we needed to reduce wake-me-up calls because of my heart.

Then I was embarrassed. The cardiac care nurse said my transmission showed the heart was normal with no irregularities. I asked why that was. She said, “The question is, how do you feel right now?” I felt fine.

I emailed Luna that I was felt foolish and confused. She didn’t have to worry about a dad who was worrying about a heart he didn’t have to worry about while he was caring for his daughter. I doubt that comforted her.

Our family is recommending we set up a daily schedule for Lynne. Aegis is effective at the daily activity programs they run at regular times at regular hours before the lockdowns. Lynne participated in more of them than any other resident.

Our idea is to schedule times for music, exercise machine, TV and video chats. Staff could give her tasks as regular times, such as folding clothes, rearranging her dresser drawers, finding a book to return to Dad, coloring Aegis posters for residents. I discovered coloring greeting cards online. Lynne could color them, and I’d address and stamp them and drop them in mail.

Luna emailed, “I love the coloring greeting cards idea.”

We can do this because we keep talking and sharing to make Lynne’s life better. And because we keep caring for each other to roll with the rollercoaster ride.   

Sharing Blissful Images

James S Russell3 Comments

Short Short Story

Lynne and I walked outside her assisted living facility toward pink cherry blossoms promising shade from streaming sunshine. Fresh air brushed her cheeks instead of the oppressive lobby atmosphere emptied by the quarantine of fellow dwellers at least septuagenarians and older. Lynne’s 54 with no underlying health concerns, so she could escape her apartment and walk with me separated by social distance to avoid infections from the Covid-19 virus. Across the street we saw a returning resident steadily shuffling small steps along the sidewalk. She wasn’t supervised because she could find her way back. She smiled and lifted her hand in a slight wave.

Lynne said, “That’s why it’s so hard to live here.”

The resident has no speech beyond single syllables. She displays another of the diverse disabilities accompanying some form of dementia limiting nearly ninety percent of the inhabitants, and who relentlessly remind Lynne where Alzheimer’s disease is driving her. When I eat dinner in the dining room I wonder which condition will be mine, or if I’ll be diagnosed with Alzheimer’s like my mother.

Lynne remembers Grammy as happy, which comforted Lynne after her diagnosis. True, Grammy was happy for years, but I get blindsided by bad images of Grammy’s end. My last indestructible image is Mom staring at me with unfocused pupils sunk in eye sockets of the skull I kissed on the forehead. I was shocked into thinking she was already dead. I left on a trip and she died a few days later.

When I returned Lynne to her entrance, her mouth drooped under eyes filling with tears before she turned into the darkened lobby. I needed a long walk before I could shed my sadness and avoid the loneliness in my apartment across the street. My mood lifted on quiet neighborhood sidewalks. Birds chirped in pink, red, and white cherry blossoms and obstinate old growth trees, preserved to reluctantly honor modern brick and steel multi-story condos.

That night I noted in my journal items that made me grateful and wondered what I’d overlooked as I headed into tomorrow. I read until I set down my book to rest before bedtime.

Suddenly a blissful memory walking with Lynne flashed into view as if a TV screen snapped on. I juxtaposed that walk with our walk that day and committed to see if could write something to make the good and bad memories sync.

Fifty, or so, years ago, in a mountain campground, Lynne and I exited a bathroom onto a path between towering pines in the moonless midnight hours. I held her hand as she noticed a glow flowing onto the pathway. She tilted back her head to look. Her grip tightened on my hand as she shoved her other hand skyward and shouted, “Daddy, look at the stars.” I still feel her hand tugging mine as she surged with wonder at her first view of the star-splattered universe.

Lynne and I have vividly shared that mystical night and Grammy’s happiness. But bad memories shelved inside me carry stronger emotions. Science has confirmed negative events trigger more powerful brain signals that aggressively trespass on our tranquility..

Whenever Lynne says Grammy was happy, I silently acknowledge both memories. And remember to be grateful I’ve learned ways to recover from giving her care, and open myself to receive always accessible bliss from sharing my precious child’s happiness.