Focusing on Seemingly Minor Foot Pain

Short short story

Foot bath with tea-tree oil with Epsom Salts

7/18/20 Christine, an RN on Lynne’s memory care unit sent me a message that “Lynne was having pain and discomfort in her left foot and first couple toes, and she thinks she has a hammertoe. I approved treatment with their podiatrist scheduled for a visit.

I was pleased. Lynne has mentioned foot pain periodically during her stay and we had frequently alerted revolving staff in her old apartment. We’d traveled to Bellevue to buy new tennis shoes that she loved for CrossFit workouts. In her new memory care unit we alerted staff about her favorite tennis shoes and red clogs. Her red clogs were fashionable and easy to slip on. A nurse told me the heels on Lynne’s black clogs were unsafe. They were from a different manufacturer from her red clogs, so I bought black clogs that matched her red ones.

Karen had always helped with her foot pain because, as she said,  “Lynne’s got my feet.” That’s a bad inheritance. Karen had four foot surgeries, none completely successful. I watched Karen struggle with hers and she managed Lynne’s. Lynne had a podiatrist who helped her.

I didn’t know if Lynne’s pain was shoes, a hammertoe, a bunion, other toes, pain from a prior surgery, nails or whatever. Now we had a podiatrist scheduled to deal with it.  

7/22 A friend of Lynne’s sent me a note that Lynne complained about pain in her feet. Others had also told me she’d complained it. I assured her friend we were aware of it and a podiatrist was scheduled to visit next week. It seemed solved.

7/26 On Sunday night, eight days after Christine’s email, Lynne called in tears about missing Mom and  “…they they think I’m crying like a baby.”

Ever since her move, I was getting these calls even though she and staff seemed happy with the move. She was more engaged, perceptive and helpful. However, her medical care assessment indicated her mood swings were still severe. I focused on that becase I believed she was improving. Her moods swints were natural when adjusting to a location.

Over a series of emails and calls staff and Lynne’s sister and brother convinced me her sadness and anxiety are severe. She was facing residents whose minds and bodies were in worse decline. She had said, “I’m afraid.” Counselors at Aegis told me, “This is the hardest time.” We talked and I finally got a few laughs out of her. At the end I asked about her toe.

“Oh, it comes and goes.”

“How about now?”

“It’s a go.”

“Is ‘go’ a hurt, or doesn’t hurt?”

“Oh, it hurts.” She was in her black clogs, which was often when she complained. Why? They matched the red clogs. I was frustrated. I thought we solved that. Eight days and nothing changed even with a podiatrist visit? What did I have to do to stop it. I decided to calm down before venting and write this email in the morning.   

7/27 6:53 am “I’m not sure who to write to, but I want better care for Lynne’s toe.

Even after all this time we’ve worked on her toe, she called last night because it hurt. I get the feeling that caregivers who dress her are not fully aware of the pain in her foot and which shoes she should wear.” I added that I highly respecdt their care.  

7/27 The Medical Director responded that the podiatry visit was rescheduled because of a new lockdown from COVID-19 infections in Lynne’s memory care. That explained why Lynne felt such tearful loneliness Sunday night—nobody was there to talk to when she leaves her room.

7/28  9:35 am  The next morning I emailed Duke, the general manager, copying the other managers. I used Ben Franklin’s technique of asking questions rather than ranting. I asked:

  1. “Why wasn’t I informed Lynne didn’t have a visit from Podiatry?
  1. “Why don’t we have recommendations to limit Lynne’s options for shoes that work with her current pain problem? Why isn’t there an understanding somewhere in the room, or reports, that Lynne has ongoing toe pain that needs to be monitored by everybody?
  2. “Who should I count on for communications about her care?
  3. “I’d like to have an explanation of her pain and her treatment as well as guidance for dressing her.”

Shortly after I sent it, Lynne called me through her portal because she was lonely and her toe hurt. I called the concierge and asked him to get someone up there to help. Very soon a caregiver arrived who took off her black clogs and put on blue tennis shoes.

Almost immediately a new care giver arrived, Renaldo (not his real name), under orders to examine her feet. As I listened through the portal, Lynne explained she had surgery on her right long toe and that’s where it hurt. He kept questioning and listening to her. He comforted Lynne. He comforted me. A med tech arrived with pain medication.  

Renaldo left and came back after reporting to Sheila. Boy, was I uninformed. Lynne had pointed to several different toes on both feet as the source of her pain. He had squeezed every toe and checked every nail – no pain. He asked Lynne to show him which toe had the surgery. He squeezed it again and Lynne didn’t react.

Renaldo, Lynne and I developed a plan to replace her clogs. Lynne liked flip flops even though both of us recommended open toe sandals as an option. I gave up and ordered two different cushioned flip flops. They cost a lot less than black clogs.

Renaldo mentioned foot baths and Lynne said she loved those. So I splurged on a foot soaking basin and a supply of tea-tree-oil-foot soak with Epsom salts. If staff could keep her feet in that tub, she and all of us would feel relief.     

7/28 12:29 pm Sheila thanked me for sharing my email to Duke and sent me a plan that shared my email with caregivers, required caregivers to report signs of pain to med techs and nursing, and reminded them Lynne must wear footwear that doesn’t rub her toes. The clogs were removed from her access.   

Wanda called and introduced herself as the direct manager of her caregivers. They expect to receive COVID-19 test results in a day or so and be able to schedule podiatry.

8/1 Wanda sent me the attached photograph of Lynne loving her foot bath. She loves the flip flops.

8/2 Last night was I wondered why I was inattentive to her pain? Why did I brush aside comments from friends without looking into it more? How long did I let her suffer without finding relief. I reviewed my emails and realized I was focused on her severe moods and cheering her up. I felt staff was caring for her feet.  

I’ve got to be more attentive and assertive about her pain management, actuallly all of her care. I knew that. Why do I have to remind myself of that at 79 years old?  

Luna Has an Idea

Short Short Story 1810 words

Late one Monday afternoon, Luna, the Director of Operations, called about an idea she wanted to share with me immediately — Lynne might be better served in Life’s Neighborhood for three reasons. She would be safer, more social and more helpful.

That was a breakout moment for me. I had avoided Life’s Neighborhood.

Continue reading

Her Care Isn’t Working Well Enough — Feeling helpless

short short story 984 words

Lynne on a home screen in a phone holder

Maybe I began to get hopeless because I stayed inside on Saturday morning when Lynne and her exercise trainer went outside and I missed her. Maybe it was Sunday when I slept in until 10 am and missed her again. Maybe that’s why I felt handcuffed to my apartment. Her comfort care in assisted living felt like it was going well before the Covid-19 confinement, but now it doesn’t feel like it’s working well enough. I’m feeling hopeless, helpless.
I cannot sit with her and absorb what she’s experiencing. I want to see her with Schmitty nesting, purring, petting, grooming, brushing. I want to check on his food supplies, kitty litter, sleeping blanket, hideouts. Would he come to see me? Do other caregivers like him?
Or, we could run through her Facebook to see who sent her messages. For example, someone sent her a message and I found out she is from our hometown of Eugene.
Liz in marketing at Aegis said she fixed Lynne’s necklace and I’m jealous. I could have at least fixed that. I’m glad it happened, but are there other times, other necklaces, clothing, shoes that need fixing?
My video chats are too often hit or miss. Someone can help set her up, but she’ll click it off at times. I’ll wait for her scheduled call and it won’t come. Is her phone charged? I bought a stand for her phone, but staff say it doesn’t work. Why? I can’t figure it out until I get it back. There are Zoom meetings she could join if we could reliably schedule them. It’s all too uncertain. Staff are trying hard. They’re busy. Am I too patient? Should I get agitated? I feel useless. Not in control. It’s not working well enough.
If I was there we could watch her favorite TV crime mysteries on channel 103 like we used to enjoy. I ask her if she watches TV and she says that’s an idea. She never remembers watching it. She can’t find the channels. I bug staff to turn it on, and worry about bugging them too much for something that Lynne isn’t interested in. I hate the helplessness. It’s not working well enough.
Friends who Video Chat with her give me suggestions from their conversations, such as “Lynne says her feet hurt.” I hadn’t heard that and passed it on to the medical director and the care director. They hadn’t heard it either, but would check it out. I wonder if they remember. Lynne doesn’t mention it..
She reads. I’m grateful staff say she’s always reading. I could read to her. They recommend a book case to store her books scattered around her apartment. They worry about her safety. That doesn’t worry me. I like them spread around so she runs into them, sits on them, touches them, opens them and gets pulled into another orbit beyond her loneliness.
The worst part haunting me is her loneliness when she’s not reading, or outside, or chatting. I get her calls when she’s so lonely she breaks confinement and shows up at the concierge desk in the evening or early mornings. The concierge calls me and I cheer her up with good news and jokes. She says I always cheer her up, but that never opens her up to share with me what she’s wrestling with, thinking about, feeling, remembering. Auto-biographical memoirs of people living with dementia talk about their confusion, or feel like they’re rambling. They regret what they have lost. They like writing and sharing their thoughts.
Lynne wrote about those thoughts in a journal in 2014-2015. She was failing at her job teaching special education students. She had never felt continual failure at anything. She solved her problems and decided a journal would help. It was her last journal. She gave it to me. It contained prayers. Her first entry on January 5, 2014 was, I want to know that everything that needs to happen is already in process. I want a cease fire in my war with time. I want to move through my day with grace and ease.
She didn’t write again that year, during a time she quit in frustration and the District convinced her to transfer to another school. Exactly a year later on January 5, 2015, she wrote a hopeful note about a cease fire with time: I am grateful to remember that I have enough time—time is only a figment of my imagination.
The cease fire didn’t last, but she fought on until July 14, 2016, when she agreed to see a neurologist. I went with her. He gave her the one-page Cognitive Assessment of Minnesota and she admitted she had problems with it. He was “concerned” and scheduled an MRI.
Karen wrote this email to family the next day: “After the appointment, I asked Jim to bring Lynne here and she agreed she didn’t want to be alone so she’s here now. Lynne is now accepting that she may have some serious problems and she’s frightened and very sad. She’s been able to talk about her fears with us.”
That’s over six years since her first journal entry! What thoughts does she wrestle with now? When I’m with her she will ponder something and begin to respond with an introductory phrase like, “That’s what we did at ….” And pauses. She searches for the noun that fits, and, given time, she may find it, or we may help with suggestions, or she’ll get distracted, or give up.
Care giving advisors say, “Join them in their reality.” That’s not much help when you can’t find her reality sitting beside her, let alone from another apartment.
The isolation from the Covid-19 virus combined with her stage of acuity has disrupted her care and it’s not working well. I keep rebelling against it, but I can’t come up with anything else to dramatically improve the care we’re giving her. It’s not working well enough. I feel helpless. Hopeless.

This is Hard

Short-short story

Midnight. My two sleeps in my apartment were challenged last night. A beep-beep-beep sound penetrated my first sleep at a way-to-early time, first raising awareness and next  understanding – it was a warning beep. For what? My heart? My bi-pap sleep machine? I hit the bi-pap stop button. Pulled off my sleep mask to find the source of the beep. The beep had stopped. When did it stop? I checked my bi-pap screen. No warning lights. My heart monitor  screen on the floor? Green glow means OK. My radio alarm? No alarm lights on. My phone? No alarm going off. What? Silence. Sleepy. What?  Check them again. Walk out my bedroom into my kitchen. Nothing on the microwave. The oven. What? Was it a truck backing up on the street below my open fifth-story window? The beep was too loud for that. 

I was alone with questions. If Karen was alive she would help me figure it out. Or ask why my alarm went off. At least I avoided that question. 

What to do now? I had too many options for my sleepy fog.  

I could go back to sleep. I tried it. Didn’t work. Got up. Frustrated. Pasted comments from friends on Lynne’s Facebook page so I’d have a written file in case I ever figured out what to do with them. I made notes for a to do list. Ate breakfast and climbed back into bed for my second sleep of the night. Frustrated. This is hard. 

                                               ———————————

6:00 am:  I was asleep so this is based on what I’ve gleaned about Lynne’s normal wake-up routine.

Lynne woke up in her assisted living apartment to the white noise of rushing water in her sound machine. Good sleep. Turned off her machine. She sorted through her options in her cognitive fog. She never goes back to sleep. Dawn rose through her 3rd-story window with a view over the rooftops of Seattle’s Madrona neighborhood. Occasional cars drove by, fewer with the Covid-19 lockdown that squashed the early bustle of commerce at the corner of Madison and 23rd St. Silence prevailed. Way too early. Too early for a caregiver to knock on her door and say “Good morning, time to get dressed.” No one to comb her hair, put on makeup. No one with breakfast. No one with medications.

She got out of bed. She saw a blue and white sweater on the floor and pulled it on over her pajama top. She did not see her glasses. She ignored the books on her bedside table. She went to the bathroom. She came out to the living room.. What to do?

She saw books in the chair. The Lacuna. She didn’t like that book. She saw magazines. Sojourner, Dad’s magazine. Journey, Dad’s magazine. Astoria was on the table. She liked that book. She opened it and started reading. She read for a while. She got tired of reading it. She went into her bedroom and laid down on her bed. She saw The Seamstress on the table by her bed. She opened it and started reading. Then she did not want to read books. And no one had knocked on the door. She wanted to leave her room, but she could not go outside without a caregiver. She was hungry. She had to wait until they brought her breakfast. She could not sit with her friends for breakfast. She had to stay. Alone. This is hard. She walked into her living room. She saw her phone. She was surprised. Where did that come from?  She picked it up. She called Dad. 

                                       ——————————————

7:30 am A gentle jingle-jingle-jingle penetrated my second sleep, first into my awareness and second into my understanding. My phone was ringing for a video chat. At 7:30 am? Too early. Rushed over and picked up the phone. Lynne calling.

Her face popped up on my screen. She did not have her glasses on. She had bags under her eyes, or maybe yesterday’s mascara wasted after a night-on-the-face. A blue and white sweater covered her pajama top. Her mouth drooped. Her voice cracked.

“This is hard,” she said.  

Somehow, she had found her phone. I realized it was left in her room after yesterday’s video chat with her boys.  Everyone had fun on that chat. Her voice jumped with excitement as each boy joined the chat. The phones were full of laughter. The boys created hi jinks in the Messenger app with a feature that super-imposes silly images and masks on participant’s faces. Dad clicked on with huge framed glasses and clenched a rose between his teeth that kept falling out when he talked. She had belly laughs. “Oh, I needed this,” she said.

That call ended last night as always. Lynne and I slid into sadness as one boy at a time vanished. One had to go to work. Another had homework to do. The youngest had already left to finish his paper due the next day. I was last. “I’ve got to go too,” I forced myself to say. I could tell it was hard for her to lose the last face. I promised to connect tomorrow. I clicked her face off. Silence. It was hard.     

Now Lynne and I were on the phone before breakfast. Like old times before we took her phone away. She called Karen time and again at odd hours when she could find it. We reprogrammed it to make it easy to call my phone and left it at the concierge desk to know where it was and keep it charged. She usually needs a caregiver to start the call.

She was apologizing for calling, for being early, for interrupting, for not having an appointment. But it was hard.

We chatted about the day and the fun we had with the boys. Too soon it was time to click off again. It was hard.

A Simple Video Chat

Caregiving for video chats sounds deceptively simple with my daughter, Lynne, diagnosed with moderate to severe dementia from Alzheimer’s disease. She’s confined to her small apartment in an assisted living facility under strict precautions due to the Covid-19 virus pandemic, so every day I bring her a note card and schedule a video chat.
I asked for a time from one of the many different people who serve as concierge on the revolving 24/7 shifts. They are now swamped with added procedures daily, including most recently, scanning the forehead of every person entering the building. My request posed no problem. “Let’s check her phone. Is it black or white?”
We keep it at the front desk with her name on it, so we don’t have to search for where Lynne leaves it. I said, “Neither. Her name’s on it.”
“Neither of these has a name.”
“It should be plugged into the flashing pink and white cord to charge it.”
“We have the cord, but it’s not plugged in.”
“It’s probably still in the apartment and needs to be charged.”
“OK, I’ll call and have somebody bring it down. What’s the password? Can I disable it so it’s easier to use?”
“Yes, that would be fine.” I felt foolish. They’ve written it down somewhere, but it’s a constant roadblock for new caregivers. There’s no reason to struggle with it. I’ve emptied her phone of sensitive data. Why didn’t I think of that?

I called the desk at 1:15 pm. The same concierge answered. “I couldn’t disable the password because I needed her thumbprint.”
“She still has her thumb. Have her do it with you.”
“I just wrote in on the phone.”
“That’ll work. That’s the same as disabling the password.” Why didn’t I think of that?
I called her phone. The caregiver answered but couldn’t turn on the video.
I couldn’t help her. Instead I saw a closeup of my 78-year old male face. Awful in a fuzzy video chat screen. Pale skin, wrinkles on my cheeks, big ears, stray eyebrow hairs, droopy eyelids, saggy eye bags, lower lip hanging open. I almost hung up on me.
The caregiver gave up. “I can’t turn on the video. Why don’t we call you?”
“OK, call me. I can turn on my video.
“What’s the password?”
“It’s on the phone.”
She called and I clicked on video. Perfect. My picture shrunk and I saw her beautiful smile under salt and pepper hair streaked with gold. I heard their laughter. The video camera went into constant motion. I saw closeups of her ear, the blonde streaks in her hair, her fingers.
“I don’t need a closeup of your ear.”
“Oh. OK, better?
“Yes, much.” As we talked I saw unobstructed views of Lynne’s smile, her face, her hair, the ceiling, the refrigerator, her shoulder, her ear, her face, cabinet door. At least they weren’t my face.
The screen went dark. I saw a message that she turned off her video.
“You turned off the video.”
“Oh, how do I turn in on?”
“I don’t know.”
The caregiver showed her how to turn it on. Lynne and the caregiver in her white mask peered into the camera before the caregiver left for another call.
“Oh, there you are,” Lynne said. “I can see you again.”
I updated her on how well her sons were doing. She turned it off again. She found the way to switch it back on.
We talked about her brother and sister and nieces. I told her a few days ago I’d yelled up at her open window on the third floor, but she didn’t answer. Next time I’ll try to bounce a pickleball off a window.
She laughed. “Dad,…”
Soon, her voice sounded tired from the effort. “I should go now,” she said.
We hung up. It was a good call.
I couldn’t throw the pickleball at the window because canopies covered the sidewalk to keep people dry and forbid throwing pickleballs at the window. Maybe I’ll get a small drone to fly in her open window to deliver her note card.

Sharing Blissful Images

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.