Gems of Joy

Today’s post is from a longtime friend of Karen’s and mine who shared with me after my post about shifting my care during frequent mood changes (1/5/21 Shifting with Her Moods). Her sharing from her experience helped me, and I thought would be helpful for readers..

“ I read your Facebook post on shifting moods and it took me back to the 3-4 years we spent with my mother-in-law who had advancing dementia.  I’d like to share with you some of my ‘learnings’ during that time—some from reading, some from learning from my communication mistakes.  I hope they can help you realize that you are doing the best you can under constantly changing circumstances.

“I found that I had to give up my ‘teacher and reality orienting’ roles that I thought were so helpful.  I read an article that reminded me of what I knew worked so well with children: meet them where they are, go into their world and let them lead you.  I thought of that when Lynne said, “I hate this place.”  Letting her know that “I hear you,” or “This is hard, painful,” or something to that effect helps validate what her reality is for that moment–she’d rather not be there.

she went through multiple moods with tears, pushing me away, shouting at me, then smiling, focused, following me in and out of her apartment.  “My MIL’s mood swings were a challenge for me—until I realized that I was taking them personally, thinking there was something I could do to make them better.  My presence was my gift to her, whether her mood was positive or negative—I tried to be a sponge and just absorb and accept and witness them.  It helped me that I knew she would quickly change, and, better yet, would not remember or “accumulate” these unhappy moments as memories.

I had not helped her.” I cannot fathom how painful it must be as a parent to be unable to take away my child’s pain, the one thing (after unconditional love) that we see as our role.  But then I reviewed your description of your time with her.  You gave her nourishment when she couldn’t do it herself, you danced and laughed with her when she felt like it, you accepted her following you in and out of her apartment— all with love and acceptance of the moment.  It all helps—but those times cannot be exchanged like green stamps (if you remember them) to lessen those painful times for her.  I will pray for more joyful times than painful ones, more movement and engagement than withdrawal — perhaps that is all that can be hoped for.  Gems of joy to be gathered and returned to when times are tough.”

Be Ready to Uplift Any Instant

Short Short Story 344 words

Be ready to uplift Lynne any instant, I remind myself. Anna, her exerciser-advocate texted me they finally had permission to go outside and were headed for the soccer field. I’ll be there I said as I stood in my PJs with bare feet, unwashed dishes, unshaved beard, unwashed face, unbrushed teeth, uncombed hair, unmade bed, unanswered emails.

I kicked the pink soccer ball into Lynne’s view as soon as I saw them. We kicked over to Parker-the-toddler and invited him to play. He loved the pink soccer ball. His mother encouraged him as he sized us up. He picked up the ball barely smaller than he was and kicked it at least half-a-foot towards Lynne who was 20 feet away. He jiggled with excitement as Lynne laughed.

We kicked the soccer ball towards a man more her age wrapping his arms around a large a 20-pound leather exercise ball and heaving it a foot or two. I said my ball was easier to pick up. He laughed, stepped back and invited Lynne to try it.    

Instead she kicked with her clog shoes and moved it half-a-foot. She backed up to get a better run at it. He advised not to do that. Might hurt her toe. She agreed.

Anna said Schmitty the kitty is racing around the apartment. He is friendly with everybody. Tries to head out the door when it opens. I suggested to Lynne we should get him a bigger apartment so he could run around more. She listened.

The hard part was not having anyone to talk to during 12 days inside because a resident had the Covid-19 virus. I suggested we should get her a roommate so she’d have someone to talk to. She listened.

My suggestions were inspired by caregivers who believe Lynne needs a place where she can be safer, more social and more helpful to other residents. They have space in the memory care unit. Her brother, sister and I agree. We’ll have a one-hour virtual-tour of rooms and facilities in the memory care unit next week. We’ll be ready.

Mother’s Day Gift: A Cat

Lynne’s guardian angel cat volunteer at Whisker City in Shoreline somehow completed health checkups and paperwork to adopt a cat on Saturday. He is an 11-year-old long-haired, dark-red single-owner cat rescued around the day I called last week. Our family was not prepared. We told Lynne he is her surprise gift for Mother’s Day and arrives on Tuesday. He wrote his own introduction to her for Mother’s Day:

Dear Lynne, my first owner moved into a nursing home and can’t take care of me, so he asked Whisker City to find my new home. Whisker City is in Shoreline Washington with a very good reputation. No matter how much time has passed since you adopted your kitty. We will always take back a cat that was adopted from Whisker City.

Patricia Curry, a volunteer at Whisker City, recommended me as a perfect Mother’s Day present for you on Mother’s Day. You sound like a perfect match for me. My first name was Friskie, but that was 11 years ago and is no longer appropriate because I like to snuggle and cuddle. Please give me a new name that you like. See you soon.

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.

Lynne Getting Her Kicks Out of Feeling Alive

Getting Her Kicks

Lynne’s suggestions improved our outdoor exercise today. Last Saturday she considered the children’s plastic orange beach ball too light and too small for kicking on a soccer field where her boys had kicked official soccer balls. An official soccer ball is an essential medical device for mandated exercise, and so is the pacemaker device in my chest that needed a check-up at the cardiologist’s office on Monday. Fortunately, a Fred Meyer near the hospital had five sizes of soccer balls in a deserted aisle. The packaging explained the official size for youth her boys age was 4. They had it in pink. Perfect.
I bounced it into her hands at the front door of her assisted living facility. She tucked it tight under an arm in our walk to the field. She was right to upgrade our medical device. The ball flew farther, spun more, curled past our feet and around goal posts. It took more skill to kick or stop. We ran farther to retrieve it, exercised harder, and laughed constantly.
We’re grateful staff exercises her outside where I can join her and keep my distance. The exercise is more vigorous and healthier than one of my lonely walks. Admittedly she doesn’t play like old times. She knows how to kick it. She may walk past it toward the caregiver who points at it to remind her she was headed to retrieve it. She can kick it right at me. When we suggest she score a goal, she aims at the middle of the field. Only we notice missteps. She never does. She celebrates. She laughs. She walks and runs. She never loses her enthusiasm for being outdoors. For exercise. For friends.
Before we walked back, I announced Mary, a high school friend, was calling her at 11. They haven’t talked for years. Her face lit up. “She is?” She repeated her name and recalled her. The last smile I saw on her face was when I reminded her, again, Mary was calling at 11.

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.

I Want a Cat

(Short story 4451 words)

“I want a cat.”

Lynne had persisted about getting a cat over the past few weeks, unlike many requests that flash by briefly and are quickly forgotten. I hoped this one would be one-time flash by because a cat would arrive with loads of baggage.

Lynne is my 54-year old daughter who lives in a compact one-bedroom apartment in assisted living. Over the year-and-a-half years she’s lived there, her random requests for a pet would fill a petting zoo such as hedgehog, parrot, dog, hamster and fish. Unexpectedly, a cat had recently arrived as a persistent request.

I get the requests because I’m her 78-year old dad in my first year as a widower loaded with full responsibility for her care. She focused her blue eyes atop puffy cheeks in a rosy oval face with a wide smile, draped in a bob cut of salt and pepper hair streaked with gold. Her steady gaze exudes strength from her firm shoulders squared back by workouts three times a week. I adore her because she’s cooperative from the beginning when she moved out of her home with three teenage sons, a cat, two dogs and a cat. She enjoys less stress and, incredibly, thrives in that facility mostly because she helps care of the other residents who are at least 20 years younger than other residents. Residents and staff lover her. She laughs a lot. She guides residents to bathrooms. She listens to them when they’re lonely. She calls for staff when residents need help. Staff treat as an equal and request her help with residents. She’s an inspiration to me. My main joy right now is to see her happy by fulfilling her wishes.

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