Lynne in a Better Place

Nancy & Lynne BFF

On Thursday, September 1, we added sons Herik and Simon to be durable powers of attorney for Lynne. Afterward, we moved Lynne to a new home at Quail Park Memory Care.

Henrik and Simon agreed to be co-DPOAs if I was unable to perform. A Notary had to be convinced Lynne understood the changes and approved of them by signing the documents. I believed she understood and wanted the changes, but wondered whether she could sign the documents. If not, Lynne would have to convince the Notary to sign for her. So I enlisted the help of Nancy, and friend LynnR, to help Lynne get approval and be witnesses. They have had consistent success enlivening verbal statements from Lynne.

I had prepped Lynne the night when we had walked the halls. I asked her, “Do you want Henrik and Simon to have powers of attorney to help Dad take care of you?” She listened but kept walking. Five minutes later I asked her the exact same question, “Do you want Henrik and Simon to have powers of attorney to help Dad take care of you?” She listened but kept walking. I asked her the exact same words after another silence. She immediately said, ”Yes.” I texted Nancy to give her the exact words to use. 

I had wrestled with questions the night before. Could Nancy and Linda get her to the building? Would she sense something and resist? Nancy had told Lynne she would be moving to Quail Park and drove past it. I had promised her night after night, “I was going to get you off this floor.” She always accepted it in silence. Would she resent being in a different setting? Would she miss the staff who had told me for two days they would miss her because she was a caring, active, courageous person?

On Thursday morning Clemens, Simon and I met in Lynne’s room after she had left. Clemons and Simon broke down Lynne’s queen bed for shipment to her cousin.  We loaded all of Lynne’s clothing, teddy bears, dolls, painting, photographs, and toiletries and drove to Quail Park to get there before Nancy and Lynne arrived so we could prepare her room. Lynne had arrived before us. Nancy and LynnR kept her entertained while we hung up her photos, placed dolls and teddy bears on shelves, organized her clothes in her dresser and closet, and hooked up her echo so Alexa could play music for her. 

“Oh, by the way,” Nancy turned around to say. “Lynne signed the documents.” I was ecstatic for Lynne. She was still in control of her life and we had made her feel that. What a glorious satisfying feeling that was for me. 

She ate lunch with Simon and me and then watched a TV program with other residents in the TV nook. After a couple of hours Lynne began to get anxious and aggressive. We called for the Heard Nurse who met with Simon and me about her care. She indicated Lynne was following a normal pattern. A visiting physician would provide advice on medications to continue calming her. The head nurse usually doesn’t recommend family visits soon after the move, but Lynne , so the nurse encouraged us to continue because Lynne welcomed visits from all of us

Today is Monday as I write this and Lynne continues to progress through the ups and downs the head nurse described. Nancy, LynneR and I have had to remind staff Lynne needs puree’ food, medicine crushed in puree or Applesauce, pants that stay on, and pain in left foot from sores. At times she has vigorously resisted help getting clothes on and  going to the bathroom with caregivers she does not recognize. I helped Lynne permit a caregiver to take her shoes and socks off to change her pants because they needed a belt.

Lynne and I rested on a quiet patio Monday afternoon as she sipped on a Starbucks Frappuccino. I said Quail Park was in a quieter neighborhood with less construction equipment, trucks and sirens. Care would be better, the residents on the floor were more tranquil and fewer of them.  She ate a nice full lunch. I walked up the street and bought her a belt for her pants and looser socks for her feet.

Nancy called to say their visit was similar, but Lynne needed new shoes. Then she said, “Oh, and I asked Lynne if she liked it. She said, ‘Yes I like it.’”

Can I Do More?

I continually evaluate my responsibilities as Lynne’s primary caregiver. I want to give her the best possible care with her limited functional abilities in the terminal stage. Our caregiving team of family and friends try to minimize her malnutrition, pain, loneliness, and anxieties.

We have reversed her malnutrition dropping her 114.7 pounds two months ago and raising her to 131.4 pounds on July 22. She weighed 165 when she moved in. She eats double the proportions of meals for sedentary residents, four calory boosters per day and snacks in between. We are taking a blood sample to see if visible winces of pain are caused by nutritional deficiencies and a scan to see if she has fractures in her feet or planter fasciitis.

Visits erase her loneliness so I maximize the times family and friends can be by her side when staff leave her on her own. Caregivers spoon-feed her for breakfast, lunch, and dinner, so I visit with a Starbucks Frappuccino after breakfast, cut-up pieces of banana nut bread after lunch, and a cup of ice cream after dinner. She desperately reaches out and rushes to embrace me with outstretched arms amid smiles or sobs. We hug tightly as I whisper in her ear, “I love you, you’re OK now, you’re safe.” She releases her hold and looks me in the face as she holds my arms. She usually wants to sit and eat my treat. She calms down more. We walk up and down the hallways as she grabs and releases my hand over and over.. She no longer responds to photographs, cards, notes, stories, or news about anyone. I talk quietly about family as if she understands. I clip on her fanny pack with her cellphone playing Pandora music lists from family and friends.

I see her as she is: hair disheveled, focused eyes scanning the area with lips sealed, or whispering something to make a point she emphasizes at the end. She turns her blue eyes on me for confirmation, so I agree, “OK, we’ll do it.”, or I’ll take care of it.” She nods as if to say she appreciates my promise. She or I spontaneously laugh, a strong full-bodied laugh and we laugh together and it goes on longer. When we walk

I see her as she was: hosting parties, playing with her sons, climbing steep trails, talking with Karen. I feel as I did when Karen and I sat together at a peaceful time of day, sometimes talking, sometimes quiet, or on walks holding hands. When Lynne and I share dad and daughter love, connected, and without worry, I believe we have the same fulfilling connected life of love we had before her diagnosis. When Karen and I shared our love near her end, I believe we had the same fulfilling connected life of love before her diagnosis. It drives me to visit Lynne often.  

Her friend Nancy and friend LynnR brought her treats and loaded her into a car for nature time walks at Woodland Park. Lynne enjoys them because they bring sunglasses and hats, or what ever. “When we left, Nancy said, “Lynne gave us hugs and then was off to check on other residents.” God bless them. Lynne’s three sons visit her a couple of times a week and describe similar visits.

After 30-45 minutes of my visit, she is calm. I kiss her on her head and say, “Gotta go to work. I’ll be back after lunch.” She says, “OK,” and walks away as I slip away. I always wonder how long she’ll be OK, and whether I could have, or should have, stayed longer. I tell myself I visit her more than most caregivers, but that doesn’t relieve much of pain from her condition.

Light Moments with Lynne

#Alzheimers #Alzwa #alzauthors  #alzheimersSpeaks #endalz @ALZAUTHORS @james_s_russell,

These are glimpses of the joys in my life for the past week as a caregiver for Lynne.

I started a TikTok account after being coached by my grand-niece who is employed as a professional TikTok specialist. I planned to show multiple videos of Lynne’s face each time she saw me. For practice I videoed her at a table, another movement, then another. We got up to walk and then sat back down. As I recorded her expressions at the table I told her I was videotaping for my TikTok account. She pushed back her chair and pushed away my camera. “I don’t like this. I don’t like this. I’m not doing this.” When we walked in the hallways she seemed willing to let me take distant videos. I posted one of her walking past the open door of her apartment and discovering an easygoing friend hiding behind the door. Lynne said, “Oh, it’s Allie.” Allie peeked around the door to look at me. “Yes, I’m  Allie.” I have not posted the rest of them. I have not learned to steady the camera. Her sister Pam says I need a holder and will give me one for Father’s Day.

Lynne grabbed her pants. “I really have to pee.” I got someone for her. We walked the hall afterward. As a concerned parent, I asked, “Did you go?” “Yes, good thing.” I chuckled, “It is a good thing to pee.” She swung her shoulders into me. “Shush, Dad.” “Why can’t we talk about peeing?” She laughed.

We walked side by side down the hall side when she veered near a pillar forcing me to head right for it. She kept veering so I bumped into it face first. She just laughed, shook her head, and walked on.

With a radiant face she pointed at a MedTech. “That’s Chester. He’s smart.” 

She was at the end of a hallway walking toward me past a man in a wheelchair. She pointed at me and told the man, “That’s my dad.”

She liked the Frappuccino I poured into her doubled sized, “Slow down” coffee cup. She held the cup and straw to her lips several times until she drained it.  Afterward Chester placed a bowl in front of her filled with ice cream covered in rivulets of chocolate sauce. She spooned bites into her mouth, one so large I was prepared to catch whatever did not make into her mouth, but she bit it in half and returned the spoon with the other half. She emptied the bowl without spilling.  Chet and I agreed we could be making progress to maintain her weight.

Her hairdresser stopped me in the hall with a worried look. She had washed her hair and blow dried it, after which Lynn decided that was enough and walked away without getting it flat-ironed. “I didn’t charge her. I need your help.” I forgot. Every other Monday I have to entertain Lynne in the chair of her hairdresser to get through it. We set an appointment for next Monday when Pam could help both of us.

I’m blessed, we’re blessed, and now you’re blessed with these memories.

Nancy Rides Again

#Alzheimers #Alzwa #alzauthors  #alzheimersSpeaks #endalz @ALZAUTHORS @james_s_russell

Nancy and her friends, frequently LynnR, take Lynne for regular joy rides outside Aegis. Lynne gets more boisterous on those trips than with me, which I cannot explain. Lynne’s reaction makes me worry I am missing something in caregiving. Her friends have advantages because they have been taking her on these joy rides right after Sunday lunch for months, even years. Their connection with Lynne is unique. I envy it and am indebted they frequently share it with us. Her are two recent trips.

Trip 1: We drove over to Interlaken in Seattle and parked near the paved imperial path there she wolfed down, and very much. Then we went for a good walk on the flat paved section and at one point she bent down to pick up a fern and carried it for a while. She enjoyed looking at the cute dog we passed by. When we got back to the car she got right in and then when we set the muffin on the console, she grabbed a big chunk with her hands and fold it down it was all I could do to pull the paper wrapping off before she ate that too. 

Trip 2: We had such a fun time with Lynne today she was calm and happy and agreeable. She ate all her lunch at Aegis and then we took her outside. She got right into the car on her own then we stopped at a bakery to get some treats. While we waited for LynnR to get the food and coffee, Lynne and I hung out and sang songs. She belted out the chorus of Linda Ronstadt’s You’re No Good and sang along with others. At one point when she started fiddling with the music controller on the console, I said, Do you want a different song? She said, Yes. She then grabbed her iced coffee and sucked down the last bits of that and seemed quite pleased with herself. Being in the fresh air under the trees with the smells of spring bloom wafting and sounds of birdsong is really good for her (and all of us)!

She seems to be really wanting to assert her independence and the only time she gets cranky with us is when we’re fussing with her or bossing her around. She also prefers less chatter.  We tried to give her free reign as much as possible.

She does tend to stop and brace herself, bending over and holding her knees for support. We’re not sure if it’s back pain or just her regulating herself. She drank a protein drink in addition to eating the full lunch plus our additional high fat treats, so hoping we came out on with more calories eaten than calories exercised.

Visitors Helping Lynne and Dad

#Alzheimers #Alzwa #alzauthors  #alzheimersSpeaks #endalz @ALZAUTHORS @james_s_russell,

Lynne has had an active life since her last hospice assessment a month ago. Friends, Patricia and Terry, from graduate school at Seattle University, were able to make their first visit. They had to overcome some reluctance because they had not visited before and were not sure they could make her comfortable.  Patricia wrote me about their experience. They did well as you will see from their story.

“It was lovely to see her and how much so many people cared for her. I was deeply moved and saddened by her condition. I could feel how much and how many people love her, especially you, Jim. We had a few moments of connection and recognition. I think not seeing her every day [makes me wonder] if our visit made a difference in the quality of her life. I hope it did.”

Patricia and Terry put her in her crimson pearl ¾-length coat and walked her around nearby sidewalks, but did not think it was very far..

I responded, “You may not consider that very far, but I think she probably did walk quite a ways. I like to learn what she does when guests come over. You made a difference in the quality of her life by being there, compared to when she is left alone. When she’s more connected, she’s in a far better place.

Last Sunday, Edith, a dear friend for decades, came up from Bend, OR to join Nancy and LynnR. This is Nancy’s report, edited for brevity and clarity.

“We had a really nice time. Lynne was really emotional probably the first half an hour we were with her. She was going through real interesting cycles from anger and sadness; and hugging us real hard and pushing us away like, ‘Get away from me.’ So we gave her an iced latte, and I think that helped her a little bit.

“But the main thing was we got her outside and then she was quite happy, and we were able to take her for a good walk. Over time we eventually had ice cream and cookies and she rallied with those.

“On the way home she was walking and was singing with us. At the end we sat at the couches in main lobby awhile. Her neck was incredibly tight, so I massaged gently. Each of us gave her water and we talked for 1/2 an hour. She was very relaxed and calm when we left. It was one of those days where you kind of get a little bit of everything and we were really happy to be with her. “

Both sets of visitors were physically present, attentive to her behavior, sorting through the mystery of her disease, finding delight, getting participation and partnering with her to end up enjoying themselves. I am thankful they visited and persisted in caring for her as well as they did.

Today we had a nice surprise. After Keith was returning to Bellingham from a doctor’s appointment in Mt. Vernon, he pulled off the highway, cancelled appointments of his phone,  and drove to Seattle to be with us. She was shocked with excitement to the face of her close brother show up at the dining room table. He took over from me to spoon feed her and we had a pleasant meal and walk. When Lynne turned around to walk away from us, we went back to my apartment and talked for two hours about her and helping ways we could help her sons deal with the disabling grief they are experiencing as they help care for their mother. I welcomed his experience on the help we need to give her sons.

Last Sunday Lynne had one month follow-up on her weight, which dropped from 117.4 to 114.8 pounds, a slower rate of weight loss. I texted the nurse and she wrote an order to add a 4th booster every day, but added, “It’s so hard to keep her weight up with her walking.”

I remain overwhelmed with gratefulness for the caregiving team which supports us all.

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.

Special Caregiving at Thanksgiving

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.

Sharing the Love

Video Chats Long term memories

Kris Kristofferson

Lynne called. She was quiet until saying, “She’s nice and I don’t want to commit and not follow through. I feel like I fit in. It took a while.”
I agreed she is nice (I had no idea who she was talking about). “But you always follow through. She helps you walk. You get a good sleep. You eat good food. You ride your bike. You listen to music. You always follow through.”
She agreed and I piled it on. “You always followed through in high school. I was writing from your journals and letters today. You didn’t want us to buy a house on a hill because it was too difficult to walk home from school. We bought the house anyway, and you bought a scooter you hid in your friend’s garage, so you could drive up. You, your friends, and your brother drove all over town. I never knew.”

She laughed. I added another story. “You felt the chemistry brewing with a causal boyfriend after talking with him throughout a ballgame on a date with a different boyfriend, followed by a month of eye contacts, chats in the hallways, teasing from girlfriends. Finally, one day he told you to call him if you wanted to see a ballgame with him and his brother. That was your chance to find out if he was serious. You said, “Call me if you want me to go with you.”
“You knew he didn’t know your number. You waited. You prayed. Finally, he called. You knew, you knew, he would be your first love.”
Lynne smiled. “Yep.”
I piled it on some more. “Your good friend on the yearbook staff told me you were the one who organized work, because she was such a flake you felt you had to keep her on track.”
Lynne laughed but objected. “She was not a flake. She did a lot for us in the yearbook. We worked on copy together.”

We paused. “OK, Dad. I’m ready for bed. I love you.“

She calls and I’m there for her. I can tap into her joy to let laughter flow over us and rinse away fear for a while. I’m learning more intimately about her and loving more deeply as I learn. I’m learning more sympathetically about me and healing more deeply as we share. Being there is a balm for the years I was away.
I am living the lyrics of Kris Kristofferson’s song, Loving Her Was Easier: “Coming close together with a feeling that I’ve never known before in my time. Wiping out the traces of the people and the places I have been. Dreaming is as easy as believing it is never gonna end. Loving her is easier than anything I’ll ever do again.”

Trying to Remember Connections

Fun activities

Lynne called.  “I’ve got COVID.”

Fun activities

“I’m sorry,” I said, startled. “But you’re healthy, good lung capacity….  Hey, wait a minute.  Nobody’s called me. Someone would have called me.  I’m going to hang up and call you back.”

The concierge confirmed no residents tested positive and they’ll test again in a week. Following those results over time they could  remove restridtions.  I gave Lynne the good news. She was happy with that. We chatted a while. She said, “I can’t stop crying.”

Her camera wasn’t on so I couldn’t see her. She kept fumbling with it until she turned it on. She was pleased with herself. The chair was not in front of the Facebook Portal so I couldn’t see  her.  She started crying. “This COVID thing,…..”

“Of course you cry.  You’re in a lockdown.”

“I feel like a baby.”

 “It’s healthy to cry. You’ve got music.  You can tell Alexa to play music.”

“Oh, yea.”

“What music do you want?”

“Lyle Lovett.”

“Tell her.”

“Alexa, play Lyle Lovett.”

Alexa did.  Lynne stood up and danced.  I saw half of her dance.  She sang the lyrics and danced to her bed.  And  she cried again and sat down.

“Lynne, I can’t see you.” 

She moved the chair over. She told Alexa to stop. She saw my face. “What happened to your nose?”

How did she spot that, I wondered.? I had a bandaid because my sleep machine rubbed my the paper-thin skin on my nose and caused it to bleed until it scabbed over.  When I saw it in the morning I was  too sleepy to know what it was until I picked it off. It beld because I take blood thinner so I taped it tight to stop the bleeding.  She doesn’t miss a thing.

We chatted. The TV wasn’t on and it was time to go, so we hung up.  

She woke me up at 10:15 pm with a staff caregiver because Lynne was sad.  I tld him the Alexa was off because I couldn’t drop in on her. It was unplugged. I told him tennis was on TV so he looked for the remote and to find the channel manually. I turned on my TV.  She and I watched tennis like Karen and I used to do. We talked about Serena’s hair. I said it looked like a mop on top of her head. She said, “Its’s beautiful. It’s purple.”

It was purple.  We shared memories when she played doubles tennis in high school and won fifth in the state championshp. I couldn’t remember her partner’s name.  “Sophit. She came over here to play tennis.” 

“You have a better long term memory than I do.”

She laughed. “Dad…”

We talked until we were past tired and decided to go to bed. Nothing had worked quite right: thinking she has COVID, forgetting she could  turn on music, unpluging echo, tutning off the video camera,  crying, calling me after I went to sleep, wanting to go to bed but unable to without caregiver help and afraid to go out the door to ask.

I told her I’d call the concierge. We hung up. The concierge said  she’d go right up and get her in  bed.  

I tell myself to remember we chatted, we laughed, we cried, we danced, we watched tennis, we shared memories and we persisted.  

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