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.