Adding Weight to ThinLynne

On April 22nd the Hospice nurse qualified Lynne for 60 more days of Hospice, primarily because her weight continued to decline from 130 pounds to 120. She steadily lost the vigorous active muscle she had as Alzheimer’s inevitably drained her strength into fragility. Otherwise, she had minimal pain with moderate moods and no seizures.

Her weight loss left me helpless. I had fed off her energy whenever I was around her. Now I fed off her fear she would lose her balance as she had in several several falls. She was nervous about holding onto the arms of a chair to sit in it. I did not like to take photos of her because she looked like she was looked frail and fearful.

Lynne’s weight also threatened Lynne’s agreement to donate her remains to the UW Willed Body Program and the Alzheimer’s Disease Research Center for Alzheimer’s research, instructional courses, organ donations, and cellular research. She was proud of her generous contribution. However, a week earlier a representative of the Willed Body program informed me Lynne should weigh at least 100 pounds to be accepted into the program. I shuddered at the idea of them rejecting her and walking away. Their possible rejection meant we had to have a disappointing and unpleasant backup plan. More importantly, one hundred pounds loomed like a pitiless pit. The Hospice nurse was not aware of that limitation, but she was already upset with the weight loss. Lynne needed more strength and energy. Vibrancy would help her moods. The Hospice nurse had written an order to boost her calorie and protein intake three times a day. She would follow up to see if it was done. She thought caregivers had to record boosters on the MedTech’s daily report. I was thrilled. We could manage her weight instead of fearing she would totter on the edge of that pit.

On Monday the 25th I went up on Lynne’s floor when she was sleeping. I explained to the MedTech and a caregiver the importance of the nurses order to give her boosters to stabilize her weight, give her more energy and avoid 100 pounds. They were unaware of the nurse’s order and had not given Lynne boosters. I asked if they recorded boosters. The MedTech was new and not sure about recording boosters. The night nurse said they had not received an order.

The MedTech stepped back from her computer and looked at us. “I think they should give her more food anyway. She is always hungry and eats everything we give her.”

“Really,” I asked in surprise? I looked at the caregiver.

“I think she should get more food also.”

I turned to the night nurse. “How much additional food could you give her if she is always hungry?”

He shook his head in amazement. “I couldn’t give her additional food without talking to the Hospice nurse first. But I’ll look for the order and talk to her tomorrow.”

I left a message for the Hospice nurse. First thing in the morning the Aegis Medical Director waved me over. “We got the order today and sent it to the pharmacy for delivery. We’ll give it to her every day and record it. She got it today already.” The nurse and the floor supervisor said they would also give Lynne snacks when she appeared hungry.

Four days later Lynne stood in the hall looking at the wall until I called out. She turned unsteadily and uttered an “Oh,” with a smile pushing up her cheeks to chase away the sorrow as she spread her arms out to hug me. Her hug was so tight she almost tipped me over backwards. She sobbed and kissed my lips through my Covid mask.

I whispered, “It’s OK, I’m here now. Want to eat some frozen yogurt?” I wanted her to rest. She held my hand as we walked to a table in the memory care dining room. A young, spritely caregiver asked if we would like tapioca or yogurt.

“May she have both?” I wanted to get as many calories in her as possible.

“Sure. I’ll get you a spoon.”

I wanted to know if caregivers knew the boosters were delivered to the floor and whether Lynne had gotten them. “Did Lynne get her three boosters today?”

The spritely one said, “I didn’t give her one since I came up.”

The young, mobile MedTech stood at his computer on the medical cart. “I did not give her one either, but I’ll check.” He flew his fingers over the keyboard.

I wanted to learn more about what they knew. “Did the boosters get delivered?”

“Oh yes.”

“I’d like to see one. I want to know how many calories they have.” She opened the medicine refrigerator and gave me one. 250 calories.

The MedTech stared at his screen. “Yes, she was given three boosters today.”

I flexed my arms and chest muscles in a silent celebratory, ‘Yes!”

I spoon fed Lynne in between the times she gazed across the room ruminating on unknown thoughts, occasionally punctuating them with fist pumps. Other times she would close her eyes and rest her head rest on the back of the chair. She ate all 125 calories from Swiss tapioca pudding and 70 calories from Creamy Yogurt. We had boosted her intake about 1,000 calories. Success. I felt we might have the power to control her weight loss.

In a foolhardy flash of euphoria, I asked her, “Am I still the greatest dad in the world?” Long ago she had given me a t-shirt that said, “Best dad in the galaxy.” At Aegis she had told me I was the greatest dad in the world. She had told staff. Staff had told me she said it. They told me I was. But I had not heard it for a while. And I did not feel I was the best dad in the world Lynne after I had accepted her grave weight loss. I needed her assurance.

Lynne answered, “Yep,” with a firm nod of her head, emphatically emphasizing her feelings with an indecipherable exclamation while pointing upward with her left hand. The certainty of her sweet “Yep” surged through my ears to choke up my throat, swell my chest and send oxygen to warm my heart. She rekindled my confidence in Dad’s care for her. She convinced me, not with the sweetness of her certainty, but with the swiftness.

Podcast about Lynne’s Care

I hope you will be interested in an interview with Jim Russell for a Podcast about all the care Lynne receives. The Podcast is a production of the University of California Irvine Institute for Memory Impairments and Neurological Disorders (UCI MIND). They are the University’s center for aging and dementia research, with our faculty seeking to understand the causes leading to neurological disorders such as Alzheimer’s disease. They had thoughtful questions added information for me. I hope you enjoy it.

https://www.buzzsprout.com/1589794/10294312-caring-for-a-child-with-early-onset-alzheimer-s-disease-with-jim-russell

Lynne’s Crowded Table

The Sweet Savor of a Garden
Lynne’s Garden
Lynne When the Day is Done

Sunday Nancy and their friends drove Lynne through the red, white, and pink cherry blossoms in the Arboretum. She got in and out of the car more easily since she has gone for more rides. She talked. She expressed interest in going back to the Volunteer Park Conservatory. They walked through the green ferns and red flowers crowding the path with the sweet savor of nature compared to the sterile walls of Life’ Neighborhood.

Sunday Edith sent a song called Crowded Table written and performed by Brandi Carlile and her group the Highwomen. Edith was listening to music as rode her bike at the base of the Three Sister’s Mountains in central Oregon. “The lyrics remind me of the friendship shared and the journey with Lynne. That’s all I want,” thought Edith, “a crowded table. I was sobbing so hard I had to pull my bike over.” She sent the title of the song and lyrics to their friends and me hoping Lynne could hear it.

Our Thin Strong Lynne

The boys take her for drives daily now to get ice cream according to the concierge. They remark about presence is memorable compared to frail octogenarians surrounding Lynne in the lobby. Lynne’s thin body strengthens with the movement, hugs and talks with her boys.

She is blossoming with it. Sunday night she greeted me with a smile and reached out. She said, “I am happy.”

I choked up instead of saying something like, of course, or wonderful. Aegis activities and friends visiting fill me with deep appreciation compared to my solo activities. They’re more creative and the multiple bodies make it more comfortable for Lynne.

Nancy sent us all a cheer. Great Job Team (Lynne’s crowded table)!

Monday morning my eyes had tears when I read Crowded Table lyrics and pictured Edith sobbing on the side of the road. I downloaded it to Lynne’s Pandora song list. Crowded Table was the first song Lynne heard Monday when I put on her headphones.

Lyrics for Crowded Table by Brandi Carlie and the HIghwomen

You can hold my hand
When you need to let go
I can be your mountain
When you're feeling valley-low
I can be your streetlight
Showing you the way home
You can hold my hand
When you need to let go

Yeah, I want a house with a crowded table
And a place by the fire for everyone
Let us take on the world while we're young and able
And bring us back together when the day is done.

If we want a garden
We're gonna have to sow the seed
Plant a little happiness
Let the roots run deep
If it's love that we give
Then it's love that we reap
If we want a garden
We're gonna have to sow the seed

Yeah I want a house with a crowded table
And a place by the fire for everyone
Let us take on the world while we're young and able
And bring us back together when the day is done

The door is always open
Your picture's on my wall
Everyone's a little broken
And everyone belongs
Yeah, everyone belongs

I want a house with a crowded table
And a place by the fire for everyone
Let us take on the world while we're young and able
And bring us back together when the day is done
And bring us back together when the day is done

Alzheimer’s Walk Reunion

Jim Russell will be on nationwide video presentation to promote the Alzheimer’s Walk in the Fall. I will be on the presentation and invite you to join us, or record it for later viewing. Sign up below to register or record.  Thanks for all the support you give to Alzheimer’s Association

Save the Date: 2022 Walk Video Reunion on April 6   10: AM PDT  and at 2.00 PM PDT

Join Alzheimer’s Association® volunteers, team captains, and participants from across the nation who are excited to be part of the Alzheimer’s Association Walk to End Alzheimer’s®! Hear their inspiring and motivating stories while learning more about this year’s Walk and how the Alzheimer’s Association is continuing to provide crucial programs and services to all those affected by Alzheimer’s disease and other dementia.

RSVP NOW

Can’t make the reunion? Fill out the RSVP form and we’ll send you a recording. We look forward to kicking things off with you! Together, we can end Alzheimer’s disease.

Nancy’s Super Visit

Lynne’s friend Nancy knows how to give Lynne a visit. Here’s Nancy’s report.

Lynne had a tour with me, Nancy, in Kathy’s beautiful Porsche Tuesday! We hung out a while at aegis on her floor and then fed Lynne her dinner. R., one of the second-floor caregivers, was amazing, super responsive, and helpful. They opened her apartment and brought the dinner to us so we could eat in private. We had a good conversation.

Then Lynne wanted to skip dessert and blow the joint. We found the hat by the bed and put her coat on her, got her down, and checked her out. We walked up the driveway into the sun when the cold breeze hit. Lynne complained it was cold, but there was Kathy’s beautiful ride and Lynne decided maybe she’d check it out. Then somehow, with me on one side and Kathy on the other, we got her down to the low sling of the bucket seat. I jumped in back and Kathy drove us around to Madison Park and through the Arboretum until Lynne told us she was ready to go home. We returned her and took her up to her room to get her settled in. We were both rewarded with big hugs for our efforts. Getting her into the car was a near miracle!

Kathy said, “Nancy’s persistence paid off!”

Nancy shrugged it off. “Having a good laugh about it all. It’s a team effort. When everyone believes it can happen.”

Kathy said, “What a wonderful way to spend the afternoon with our friend!”  

Lynne’s Sense of Self

When my mother was in the end stage of Alzheimer’s I believed she was blissfully unafraid behind a veil of ignorance about her disease. She had anosognosia, a symptom of not knowing she had a disease, which is different from denial. Lynne and I had hoped she would have the bliss of ignorance. Yet Lynne has had sixty days of Hospice care during which she has lost weight and trouble chewing food. She is aware she has limitations.

She has a strong sense of self relentlessly driving her behavior with meaning.  She knows she is a sapient body in space with words like “I’, or “me,” or pushing Dad away. The downside is she wants to get her body home. She gets depressed, anxious, lonely.

She also values her virtues as a mother, educator, daughter, sister, colleague. She wields a slightly smug smile when I read her notes from a grade-school teacher, Lynne’s co-teachers, fellow recruiters, neighbors, and fellow graduate students. She glows when she sees her boys, together, towering over her, coming to care for her week after week.  She responds to social communion with others who give her dignity, her worth as a person, valued, included, and not ignored. She feels pride when people compliment her on the streaks of gold in her healthy hair. She shows concerns about residents and embraces caregivers. Friends validate what she is feeling by amazingly walking her through Volunteer Park to eat a donut and people-watch at a market.

Lynne does not have my mother’s ignorance of bliss from Alzheimer’s. She has awareness for which she pays a price. In return she has meaning, dignity, and love confirmed and sustained by those who cherish her.

I hope I would have her valor and similar caregivers to sustain me.

Better Environments Help Lynne

Two friends and I made inexpensive and simple changes in her environment that enriched the life experience of Lynne, my daughter with Alzheimer’s. They enriched me as a caregiver.

Dad arrived. Staff had propped open her apartment so Lynne could walk in and out. One of the residents was chanting loudly repeating a guttural sound in the dining room. His rants have bothered Lynne for months. Lynne was in the hallway past the dining room, bent over, hands on her knees, sobbing. She reached for me and hugged me. I put on her headphones as we headed to the lobby where we could walk through the dining area.  

In the lobby she saw a staff member working in a room where I tried to guide Lynne. She resisted. No, I can’t go in there.

Lynne, it’s OK.

No.  In her room. It’s not going to work.

She thrilled me. The change in meds seemed to make her more alert. We walked toward large leather armchairs where I pulled one in front of the other because her eyesight is limited to tunnel vision in front of her. I sat down. She eventually sat down on the other, face to face. She scanned the lobby, quiet with few people. She watched the cars, buses, and pedestrians. Her blue eyes landed on my eyes, then continues to scan more. She points at a 95-year-old resident with her walker. She’s a really ni … Lynne scooted her chair toward me. I scooted my chair closer, and her eyes brightened up a little bit, with part of a smile. The rapid improvements in her mood came from the change from the environment on her floor compared to the lobby without having to medicate her.

I watch every move as closely as I watched her as an infant, loving her as deeply as I did then, and intrigued by the mysteries going on inside her. Her body twitches slightly in her chest and arms. Her hands have mild tremors. She crosses and uncrosses her legs. Her lips are turned down like the sides of a steep hilltop

I repeated tunes in her headset four or five times if she was tracking the lyrics or the beat. She was thinking about something all the time with a running soliloquy that I did not interrupt. Oh. That’s right. Where? Wow. I remember that. Oh nice. OK. The walk more. (Whispered) I don’t want the …. There’s going to be a big riot, or a fire. Yeah.  I need to go up. There. (she pointed with her finger and stood up.)  Yeah, I think so.

She joined a conversation of two staff members in a standup meeting. When they thanked each other, Lynne said, Yeah, thank you.

I talked with several staff about the problems with furniture in the hallways on her floor because she cannot sit and rest, so she bends over and puts her hand on her knees to relieve the pain. The chairs are too small for her. She is afraid to sit down in them because she has fallen several times when she tried. She tenses strongly when two people assist her into a chair. I have given up trying to get her in my car.

Staff has opened her apartment door to at least let her sit on the bed. I re-arranged her room where she has a big armchair at the end of her bed with blankets and pillows on it. I pushed the armchair to the wall and useda black table chair for the blankets. Now Lynne has an open door to a refuge with a comfy arm chair. I urged a couple of staff to get a sofas or large armchairs in the hallways for resident rest stops. I asked staff on the second floor to check with the concierge if Lynne could wander alone safely in the lobby with healthier residents. She walks out of sight into the nooks and crannies on the second floor.

I am immensely pleased I had the time and the ideas to give her a little better life. I feel more meaningful.

And then I get a call from Nancy today. She and a friend took Lynne outside this afternoon for a fantastic time compared to the sedate visit I had with her. Wait until you read Nancy’s post on this blog about the fun Lynne had in their car, Volunteer Park, a donut shop and the Broadway market. Lynne reportedly commented on the young hunks strolling by compared to obsterorous octogenarians she’s running from. I was humbled and thrilled to hear the excitement from Nancy’s voice.

Visits are Meaningful

Visits witih Lynne can be hard when we see her less vivacious than our cherished memories of her. Understandably people are afraid to visit, including me, when I don’t have a way to cheer her up, so it’s easy avoid it. And yet her condition nags at us because we love her. I have learned that my times, or family times, or friends times, are always meaningful for the visitors, and almost always meaningful for her. They are meaningful for me and others because we tried to give Lynne a better time than she would have had without our visits. Below are stories of simple visits that demonstrate visits are almost always meaningful for her. Lynne told one of her friends told her to go away, so she did, and came back the next day to share a cheerful visit. Imagine how meaningful it was for Lynne’s friend to have the courage to immediately visit again when Lynne was glad to see her.

The good news is Lynne is more responsive and walking more upright since we changed her medications. Last Sunday friend, Lynn, sent me a message. I helped Lynne eat lunch and gave her a cinnamon roll which she ate as we walked outside. We laughed quite a bit and complemented each other on excellent hairdos. She was in good spirits. Obviously friend Lynn was in good spirits about her visit.

Her boys and Pam, my other daughter, saw improvements for an hour-and-a-half lately. She pointed at me and told them. That’s my dad. She pronounced the title on a poster:  Mardi Gras. We sat in the lobby and talked. I called out a to resident close by,  Hello. How many boys do you have? Lynne answered immediately, Five. I have rarely seen visitors with her. She sits with other residents in the lobby. They tell Lynne, You’re lucky. Your dad comes to visit you.  I know those statements make her happy. They make me feel more meaningful.

Today when I met Lynne she was sobbing, tears flowed down her cheeks. She wrapped her arms around me, saying, She took it all. She took everything.

Really? Everything?

Yes, everything.

I pulled back and looked her in the eyes. Hon, I was just in your room. She didn’t take it all. It’s all there.

It is? Well OK. I lifted her mood and made me feel meaningful. I put on her headphones and backpack to hear the Sister’s Music list from her sister Pam. Lynne gazed up and nodded her head. She mouthed some words. Her body slightly swayed to the music. I was glad I brought the headphones and Pam sent a list. It kept her mood mellow. Pam and I both feel more meaningful about her music. I am grateful for Pam’s care.

I walked beside her, slipped my hand under hers and left it open. Sometimes she moved her hand away. Sometimes she let our hands touch. Sometimes she grabbed my finger, three fingers, the whole hand. Sometimes a grip. Sometimes gentle. It made her more connected, secure, stable. I felt more meaningful. I steered her up to the 6th, 5th, 4th, 3rd floors and the lobby. She studied photos revolving across television screens on every floor. She often turned to smile at me. We were both getting some exercise. I felt more meaningful. I waved to her when I left her floor before lunch. I felt I improved her feelings for a little while. I felt more meaningful. Don’t let fear keep her from giving her a more meaningful journey.

Friends Can Care More

Nancy and Lynne in Sunshine

Nancy and Lynn, friends of Lynne’s, sent me this message. “We took her over to the Capitol Hill farmers market (which she always loved) and enjoyed some spicy street food, hot Chai tea, and a Valentine’s cookie while we sat out in the sun in the park. She enjoyed the sun on her face and watching the dogs playing. She kept pointing, “Look at that one.” and so on as we sat there together.

“She was very verbal again and stringing a few broken phrases together. Her body awareness continues to be a challenge, sitting down is harder now. She was happy and talkative.”

I responded, “Nancy that sounds tremendous. It’s a far better day than I’ve been able to give her for months. What jewels you two people are. I hope you can appreciate how much joy I got out of this message.”

Lynne Can Have Visitors

Lynne’s Aegis community is open fully for you to visit or take her out. A gentle reminder that all visitors will be required to show proof of receiving a COVID booster prior to entering and masks must be worn at all times please.

Lynne loved the sun on her face and closed her eyes for the sweet dreams she was having on Sunday when her brother and sister-in-law took her for a walk outside, after a long wait.