Dementia

Shifting With Her Moods

James S Russell4 Comments
Happy at 6:00 pm

At dinner Monday night Lynne was lackluster, listening to music on her headphones and verbalizing a few verses with her lips. She ignored her plate of gravy, beef, noodles and green beans, so I stabbed a bite of beef with a noodle which she let me put into her mouth. She let me feed her every bite. Staff gave both of us a slice of carrot cake for dessert with my own fork.

We walked to her apartment to watch TV, but after we watched repeated ads of Medicare Plan C, she said, “I can’t stand this,” and left the room. We laughed when we danced a little bit. We walked the halls as she went through multiple moods with tears, pushing me away, shouting at me, then smiling, focused, following me in and out of her apartment. She says, “I hate this place.” I tell her “Lynne you are safe here. Everyone loves you.”

Sad at 6:00pm

Finally, I turned her over to the nurse who said she had had a pretty good day, but she’d get her ready for bed. As I slipped out the door to the stairs, I heard her in the hallway sobbing and yelling, “What did I doooooo?”

That yell drove me to the edge of despair. What could I do? I had not helped her. I felt helpless. I expected and hoped she would switch moods again. And the nurse would help her, even sedate her. I closed the door and walked down the stairs. Her cry kept haunting me.

When I returned late that night, the caregivers said she had a pretty good night. They had the pack and headphones ready for me instead of having to look for them as we often do. With those readily available, them watching me feed her, offering me cake and my own fork, and now their assuring me they calmed her down, I felt like we were a team to give her care in this more depressing part of our journey. Her determination inspires us all  

Getting Help to Relive Memories

James S Russell1 Comment

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With riends at a Lyle Lovet concert

People in late stages of dementia can relive memories wrapped in their five senses and heartwarming emotions. Those are the best times for Lynne and me now. I’d like to learn more ways caregivers can help loved ones relive those memories.
Recently, she was snug in the front seat of my car listening to Neal Diamond music and singing his lyrics as we drove through a rainy night. She looked out the window at parks and restaurants in her Madrona, Leschi and Capital Hill neighborhoods, interrupting her singing to briefly comment on the scenes. On a video chat she listened to me read every word of Sharon Olds’ poem, First Hour. It’s about a newborn’s thoughts. I told her that and when I finished she immediately remembered holding each of her three newborn boys.
I, we caregivers, want ideas to reach deep into more of those memories so we can relive them in restricted, confusing, anxious times.
I have read recommendations about how to assist Lynne’s behaviors when I’m with her. She opened a back door of the car to sit on the lowered seat, but said she couldn’t get her legs in. I guided her into the passenger seat. She quickly tangled her neck in the seatbelt until I clicked it in for her.
I’d like more training on drawing out the deep memories, especially when I can only care for her on a video chat or sitting alone with her, even then unable to touch her without gloves and a shield, let alone hug her. What senses and emotions help draw out pleasant memories? In the car, did feeling snug in her passenger seat relieve her anxiety and let her focus on the scenery? Was it the music? The lyrics? Me by her side? With the poem, did it help to feel secure in her favorite chair? Me introducing the poem by talking about newborns and mothers? Dad’s familiar voice? The flow of the lyrics?
I search for connections to memories by watching, listening, asking and showing her pictures to see what settings, words, images and names excite her senses and emotional experiences. I need help. And I confess I feel pressure because her reservoir of memories is draining away rapidly.
Can I get help from our worlds of virtual reality? Lynne had a fabulous time with friends at a Lyle Lovett concert two years ago. Could she wear virtual reality goggles and earphones to sing and dance with fans and friends at concerts like Madonna? Could she dance in sock hops on reruns of The Dick Clark Show? Could gaming programmers develop videos for people with dementia where they could hug avatars instead of zap them? Could exercise equipment manufacturers mimic virtual scenery while residents exercise on stationary bikes? Could we collect videos from family and friends to rerun in endless loops like TikTok videos? Could we download YouTube videos?
There must be people who could recommend more ways to raise up Lynne’s memories for us to enjoy in the present Covid restrictions — experts for caregivers, architects for room and building designs, owners of assisted living facilities with lively experiences from households or neighborhoods.
Please help.

Never Run Out of Smiles

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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.

Did We Ask Too Much?

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Early before Lynne’s 2nd birthday party, she was crying, anxious, didn’t want to go. Why? Confined? Lonely? Isolated? Trapped? Embarassed? Caregiver Dorothy and I encouraged her. Dorothy escorted her. We had fun.

But did we ask too much? What about Christmas?

Mrs Santa Claus on December 1

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Mrs Santa Claus Arrived on December 1

Lynne remembered her mother put up Christmas decorations every December 1. A favorite of Lynne’s was the Mrs. Santa Claus doll. Mrs. Clause was the first decoration of many I’ll bring during December.

Eric Larsen, MD Kaiser Permanente Health Research Institute says indelible memories in the first 20 years can be enjoyed the rest of our lives. “We should strive to treasure the miraculous ability of the brain to hold onto the past as well as it does.” 

Christmas decorations from the family are a good way to do that in December.

Special Caregiving at Thanksgiving

James S Russell3 Comments

Fun activities during Thanksgiving

Lynne and her friend the Thanksgiving Turkey

Aegis reported they kicked off the week before Thanksgiving with a little fun in memory care. The Health Service Director dressed up as a Turkey and spent some time with Lynne and other residents. Lynne’s the one on the left in the photo. 😊 Holiday decorations should keep up the spirits during the upcoming “Week of Thanksgiving.” Staff will deliver different types of deserts for the residents and visitors every day on the Outdoor Living.
Lynne has been active with weights, a hair cut and shampoo and outdoor walks. One day, she came back from her walk and entered the daily stand-up staff meeting. They were pleased to see her and gave her a chair.
Lynne’s still caring for staff. She saw a caregiver have an incident with a difficult resident and said to her, “You’re having a bad day.”
A nurse told me about another bad day for Lynne. A resident hit her in the chest, hard enough to have her chest looked at, but there wasn’t a visible injury. When she was shaken by another incident she witnessed, caregivers led her onto her bike. After she pedaled herself into recovery, they asked Alexa to play Madonna so they could dance with her until she felt safe and settled. Caregivers continuously resolve such disturbing behaviors.
We have a lot to be thankful for, including caregivers in tune with Lynne during the loneliness on holidays. Bless them.

KOMONews on Lynne and Dad

James S Russell1 Comment

This is the KOMONews report on Lynne’s and my story regarding the Alzheimer’s walk. https://komonews.com/news/consumer/dont-underestimate-covids-effect-on-people-with-dementia. I’ll be at Aegis-Madison if any of you want to join me Saturday, October 3 beginning at 8:45 am. You can see me and Connie Thompson of KOMONews at the virtual walk sites because she also has an Alzheimer’s story. Links are on the Alzheimer’s website for Seattle.

Playing Hardball to Get Through This

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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.

As Good As It Gets for Dad

James S Russell1 Comment

Fun activities

I interviewed Candy, a friend of Lynne’s about their time together at the Bill and Melinda Gates Foundation in 1996. I am grateful for her memories full of Lynne’s fun and professional skills. I sent her an image of an article about recruiting talent for the Bill and Melinda Gates Foundation published in the Seattle Times on October 17, 1996 Titled, “Want to Work for Gates?” The front page was in a 11 x 17 picture frame with a photograph of recent hires when the foundation was rapidly expanding from an influx of donations. The frame was given to Lynne when she retired from the foundation to work as a special education teacher. The back of the frame was filled with farewells and signatures of her fellow workers.

Candy asked how to contact Lynne for a video chat. Lynne’s phone messages show Candy called later that afternoon at 1:27, 1:28, 1:35 and 1:35. Lynne  missed each of those calls. Candy’s persistent. She called the next day at 3:06 pm and missed  her, and finally connected at 4:02 pm for a 23 minute and 50 second phone call.

Candy sent me this email, which is how I discovered she’d dedicated herself to connect with Lynne while she still remembers:

“I talked to Lynne via video chat today.  It was so great.  She remembered me well and was really present and we reminisced about old times. I’ll call her once a week and told her she can call me at any time.

Once they open on the CV19 restrictions, I’ll do walks with her and go visit.

Thank you, thank you for this re-connection.  In gratitude, Candy.”

As Lynne’s dad, I’m unable to resurrect those intimate stories that still exist in the great majority of Lynne’s long term memory. I’m thrilled she can share good times in normal conversations with friends. I thanked Candy for her persistence I replied, “That’s as good as it gets for me right now. Thanks for letting me know.”

I asked it I could share this and she said, “Happy for you to do so.”

Lynne Takes One for the Team

James S Russell2 Comments

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.