Dance with Somebody You Love

fun activities

An Oasis for conversation and bathrooms

I planned a cross-town trip for Lynne and me to Alki Beach. I made a playlist of the music at her birthday party. I expected we’d need a bathroom break half-way through, so I planned to be at the east side of Alki Beach where there would be some restaurants open with social distancing.
Lynne buckled in and asked, “How do you like your new car?”
“Fine I feel safer.” It’s a red Mazda CX-30, given a five-star safety rating by the National Transportation Safety Board. I bought it because Lynne, her brother and sister said it was too dangerous for me to drive my old car. They were right and I knew it. I would not have planned this trip with my old car.
I started the music with I Want to Dance with Somebody I Love by Whitney Houston. We heard it three times before I switched to the next one. I think it stayed in her memory to the end of the trip.
Lynne said, “I’m getting more comfortable about driving.” She spoke in complete sentences, not two words at a time as staff have told me. That was encouraging.
Lynne sang along as I chatted about stories of her teaching days and how sad it was restaurant owners were losing money from shutdowns without economic relief. She was excited to see the historic Admiral Theater. We reached the west shore and as soon as we hit the eastern shore Lynne said she had to go to the bathroom. Luckily, we saw Salty’s on Alki Beach, a high-class seaside seafood restaurant and bar.
It was spacious and empty. The concierge said, “Sorry, we’re not open until 4:00 pm, but you could get carry out.”
He gave me the menus, which were not promising. “Do you have any non-alcoholic beverages?”
“I’ll check,” he said. Apparently that was an unusual request.
Lynne went in the bathroom and came out right away.
“Did you go?”
“Yes.”
The concierge said they had ice cream and could make us a root beer float for $4.50. I splurged on two.
Lynne went back in the bathroom and came out right away.
“Did you go?
“Yes.”
We waited a while, probably while the concierge searched for the dessert chef to fill our order.
I told Lynne to stay seated and I went to the bathroom. Lynne came in to wash her hands when I washed my hands. We went back out to wait.
Lynne said, “OK, now I really have to go.”
I wasn’t doing anything, so I said, “I’ll go with you.”
She went to the sink to wash her hands. I went to the first stall. “Hon, why don’t you use this first?”
“Oh, that’s where it is. I couldn’t find it.”
I waited in the restroom to help any other woman who might come in. Suddenly I heard Lynne shout, “Oh, oh.”
“Are you OK?”
She quickly calmed me down. “It’s OK, I found it.”
She looked at the sink as she headed for the door.
“Aren’t you going to use the sink?”
“No, I’m OK.”
By that time that it was OK for me too. We waited by windows in the waiting area.
The concierge came out with two floats in paper cups. I poked the straws in the cups as he showed Lynne an eagle’s nest in the woods, and a newer one close by. “We had two eagles when they were on the endangered list, but now we have five. I love to watch them. Enjoy.”
She sucked her float dry, lifted the lid on the trash bin and tossed in her cup. She stayed by the window where she saw the back of a carved wooden statue, possibly Salty.
She said, “He’s not moving. It must be hard to stand there all day.”
I gave Lynne the leather bill holder with the tip to give to the talkative eagle lover. She liked that idea. She came back with it. She went back again and came back with it again. Together we found him and thanked him.
As we headed up Madison she talked again.
“I think I want to talk with somebody.” She was repeating Whitney Houston, enlivened by her chat with the gregarious eagle lover.
A few blocks later, she said, “They might be watching a movie.”
A few blocks later, she said, “I have to work on knowing when people want to talk or not.”
I told her, “Lynne, everybody I’ve talked to says you’re an extravert. You know how to talk to people. You have to remember a lot of people on your floor can’t even talk.”
We told the Aegis concierge Lynne wanted to talk with some people. The concierge said she definitely would do that.
How could we create the same secure feeling with music and scenery to reduce anxiety and increase connections for loved ones with dementia? I ache in my loneliness about her loneliness.
I tell myself to celebrate a safe, secure, loving time — a time to dance with somebody you love.

Never Run Out of Smiles

caregiving

Thin smile with a warm wrap

Lynne called. You said I’d like this place
I do. Activities, care, safe. Staff love you. You’ve got a hard job to walk — can’t remember, find words, figure things out. You’ve got to fight through it. You’re strong. You can do it. Where’s your smile? Everybody..
always loved your smile. You used it all the time. I was afraid you’d run out of smiles. I checked, though. You can never run out of smiles. Go give ‘em one of your smiles.
Slight chuckle. You always make me feel better. OK.
She stood up in a warm shawl, hair neatly parted, framing her face with a thin smile and walked out.

I can make her feel better, for a while. I can’t make her think better, ever. Nobody else can either, for a while.

A Bumpy Ride with Alzheimer’s Caregiving

Fun activities caregiving

Aegis reduced its quarantine restrictions allowing caregivers to accompany Lynne on walks as many as three times per day. She’s active, so the floor supervisor gave her a fourth walk one day. Our family ordered a stationary bike for her room, where riding it would lift her spirits during Seattle’s oncoming cold, rainy weather and future lockdowns. She and staff were happy when I printed a picture for them. That picture lifted my spirits before it arrived.
I scheduled an Outdoor living room visit where we could talk through plexiglass shields. I showed her a heartwarming video of a Labrador mother using her paw to protect her last puppy from being adopted.
Lynne’s vision has declined so she used her finger to focus on it. “What is it? Is it mine? Is it a puppy? Is it mine?”
“No, it’s just a funny video.” I wondered if she thought it was her dog.
She stood up, disappointment draining the smile off her face. “It’s not mine?” She started to sob. She had said she wanted a dog earlier that month, but we had told her that wasn’t possible.
“Honey you can’t have a dog up on your floor.”
She sobbed as she stared at me and backed in and out of the curtains twice, sobbing harder. She staggered toward the front door and hit the windows again as she backed away from me. I stood up wondering what I could do.
A caregiver came out quickly to comfort her as she guided her back inside. I told them it was about a puppy.
I was sad and miserable. How could I have forgotten she wanted a dog?
Very soon I got a text message. They had redirected her to the picture of the bike. “She’s fine now.”
I was too. Caregiving is a long, bumpy ride.

Playing Hardball to Get Through This

Fun activities


Lynne called last night at 10 pm, melancholy without tears. “Not sure if I can do this.”“Sure, you can. Your Grammy Helen did it. Once you get through this part, you’ll be happy. Grammy Helen was happy.”
“Yes, she was.”
Pam had phoned me about her video chat with Lynne when her boys joined in. We reminisced about Pam’s plight inhaling wildfire smoke in California. I asked her about the boys. “They’re doing fantastic,” she said.
I told her I caught an overthrown hardball at Miller Park with my bare left hand and tossed it back. The young men on the teams cheered. “You the man.” One ran over with the ball, “Sign this.”
I didn’t have a pen, so I bumped his ball with my fist. I told Lynne, “If I’d had a pen, I could have signed it as Dan Wilson. And the next time I saw him, I’d have to tell him his legend grew at Miller Park.”
She laughed. “He’d have given it to you.”
We paused. She took a deep breath, “I’m not sure I can do this.”
“Sure you can. Your first job is get some sleep.”
“I can do that.”
She headed for bed in her clothes. “You should turn off the light.”
She looked for it on the blank wall next to her shelves. “Lindy, I think the switch is by the door.”
“Oh yea.” She walked away from the Facebook Portal screen and I saw the bathroom light turn on and off. She walked back to her bed and climbed in.
I called out, “Good night.”
“Good night.”
I called the concierge who promised to have someone help her get some sleep.

Lynne Takes One for the Team

Fun Activities

Lynne Freed to Exercise with Weights

Lynne summoned the courage to suffer one for the team to contain the COVID virus.

Thursday she dressed up to return to exercising in the Aegis gym with weights. She’s walked city streets every day, as much as twice a day from what I hear. Her high-tech friends have called me with reports from their chats, such as Lynne misses her sister. Her boys dropped in for video chats on their Facebook portals since they now have their own Portals. Connections are not without glitches because staff leave before making sure Lynne is set up in a chair in front of the Portal with a lamp on so we can see her face. We’ll improve on that.

Saturday Lynne and a caregiver connected with me. She said, “I’m not sure I can take this.”

“Of course, it’s hard. But remember you don’t have to stay in your room now. You can walk your floor. You can go outside to the patio.”

“Can I go down to the concierge?  Some of these people …” 

“No, because your floor still has a COVID lockdown from the rest of the facility.  Aegis is protecting the other residents from infections from your residents and protecting the very frail people on your floor. You’ve got to protect other people.  You’ve got to take one for the team right now.”

She took a deep breath. “OK, I can do that.”

“Let’s call your sister. She’s having a tough time with hazardous smoke from wildfires that kicked up an asthma attack.”

We added Pam to the call. I said I had to go and let my daughters chat.  

Recovery Plan for Bad Days

Fun activities,

This could become a regular lavender ritual

I’d dropped in on Lynne three times yesterday on her echo dot and she thought she’d done something wrong because she couldn’t go downstairs to see the concierge. Frustrated, I emailed her assistant director, Wanda (not her real name), to please see if one her people could cheer her up. I gave her some ideas: TV with her favorites on Amazon Prime and Netflix, a foot bath, calling me for a video chat, searching for her daily bag of trail mix attached to a photo of her sons and nieces eating ice cream. I thought she’d remember that photo.

Wanda delivered, and I thanked her for a nice video chat with Lynne last night. She called with help from a caregiver. Lynne sat with feet in the tub basin filled with lavender Epsom’s salts and a big grin on her face. They were laughing. Lynne said it felt decadent. She lifted up her foot in front of the Facebook Portal to show a wet, ruddy, healthy foot. We chatted until she stood up and wandered toward her door to ask for help getting ready for bed. We had a good night.

Wanda responded. “That was me. I had come in and out a couple times. I’m so glad it set your mind at ease. The lavender is a huge hit, this is a great night time ritual for her. We put the crickets ( her favorite) on the sound machine before I tucked her in, she seemed very happy indeed. I will make sure care staff know to make this a part of her nightly routine!”

I appreciated Wanda testing the idea and planning a regular routine. I asked if a caregiver could talk into her echo dot, “ Alexa, Drop in on Dad.” We could talk through the echoes because Lynne fiddles with the Portal during video chats: turns it off, turns sound off, and moves away from the camera. Maybe we’ll get video chats to work better again.

In the meantime I’m grateful we have staff who can give us new routines that make for healthy self-indulgence.

COVID-19 Precautions Make Life Harder

Echo dot the only ink Wednesday

Aegis living reported COVID-19 invaded Lynne’ secure memory care floor. They are “managing four cases of Covid-19. Three of the residents are completely asymptomatic. One is showing mild symptoms and is recovering nicely. We have placed the four residents who tested positive under full droplet precaution,” [which requires the residents isolate in a room and everyone in the room wears a mask and PPE].
“Dedicated staff care for only those four residents. All caregivers who work in that comfort care unit only work in that unit.” Three caregivers were also infected and are quarantined at home.

I believe this partially explains her anxiety and inability to handle the video chats we tried yesterday. I dropped in on Lynne on her Echo dot which doesn’t allow me to see her.
Her first words were, “Dad, I’m not in my room. I’m supposed to be in my room.” I assured she was and phoned her Facebook Portal. It rang and rang.
“Answer it honey.”
“I’m afraid to touch it.”
“You can’t hurt it. Go ahead.”
“I guess I’m not doing it right.”
“Keep trying.” It didn’t connect. We talked briefly. Her flip flops are comfortable. They’re fancy. Pause …
“I’m afraid I’m going to be in trouble. I have to go.” She walked away.
My frustration skyrocketed. Why can’t she press the face of the Portal? She has before. It’s infuriating to be unable to visualize what she doing and give basic help like using her finger to touch the Portal.
Then I remembererd she was anxious, believing she wasn’t in her room and had to get back to it. She can’t be losing all her mental capabilities this rapidly. Or is she? I get torn by two impulses: the shorter her end stage, the better – get her suffering over; and, we must make her better now, somehow. It feels like it’s getting harder daily. Nothing works for very long. And nothing works when I can’t understand what is happening, when I can’t sit beside her.
After a while I dropped in again. She was there and seemed more cheerful.
I asked if she wanted a video chat. She paused.
“No, I better not. I got too anxious.”

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?  

Luckily Dancing with Lynne and Lyle Lovett

Fun Activities

Lynne and Dad dancing to Lyle Lovett on her Alexa echo.

Lynne and her assistant care director, Brenda, called for a video chat last night, as Lynne does when it gets to be much. Luckily for me, they called me. I needed to be cheered up too. Inspired by interviews with her friends who remember singing and dancing with her at outdoor concerts, I suggested we add music. I told her to say, Alexa play Lyle Lovett. Her Alexa echo and my Alexa show played Lovett. She sang the lyrics and we rose out of our chairs to dance through our video chat. And we laughed.

We listed some artists we could enjoy next time. And then wham, I remembered the most cherished Father’s Day gift Lynne gave me, a concert at The Gorge with Crosby, Stills and Nash. Their finale was Teach Your Children Well, one of my all-time favorite songs I’d been hoping to hear. We stood in the sunset with the packed crowd roaring the lyrics as tears flowed out of my eyes.

We’d like your help. My youngest daughter and I listed some artists we think are her favorites, but we don’t know everyone she’d like on the list, particularly starting in the ’80s to the present. Help us please: name favorite artists and concerts she loves to sing and dance with. We are posting the list below by her Alexa echo so caregivers fill her apartment with music. We all should sing and dance once in while, especially in lockdown.  

LYLE LOVETT  CROSBY, STILLS & NASHCAT STEVENSEMMEY LOU HARRIS
MARY CHAPIN CARPERNTERWAILIN’ JENNYSDOLLY PARDONELTON JOHN
GEORGE MICHAELMADONNAMICHAEL JACKSONU2
ABBATHE BEATLESROLLING STONESTHE EAGLES  
SIMON AND GARFUNKELCARPENTERSALLISON KRAUSEOLIVIA NEWTON JOHN
LORETTA LYNNGARTH BROOKSTHE JUDDSCARTER FAMILY
THE CHICKS