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.

Lynne’s Weight Loss

Lynne weighed123 pounds today. 😂😂😂

123 reverses a frightening weight loss. On April 22nd the hospice nurse fought back against Lynne’s apparently irreversible weight loss from 130 pounds to 120 since January with an order for. three Ensure calories booster per day. She ate it all. 👌 Visitors added snacks. Lynne ate it all. 🤞Lynne’s weight declined to 114.7 pounds in May. Lasts week I asked if she could get a double dose of the prescribed portions because she is an athlete compared to sedentary residents. They immediately doubled her portion. 👍Today on June 22nd they weighed her again. 123 Pounds. We reversed the decline. 👏👏Staff on her floor were celebrating. 💕 We shared hugs.

Visits: Ups Downs & Ideas

Karin Lynne Nancy

These are experiences from recent caregiving with Lynne over the past week, starting from the most recent. They are glimpses into the current caregiving for my ever-loving daughter, Bless you, all of you who care.

A friend who worked at Aegis sent me a card with a favorite story for Lynne. “I loved it when you always stopped at my office when you went looking for your favorite coffee cup.” I have the cup. It is a double sized cup with a message to “slow down, calm down ….” I am showing Lynne the card and the cup when I see her today.

Last night as Lynne and I sat in the lobby after ice cream, I learned my beloved older sister was found on the floor of her house after a stroke. The left sides of her face and arm drooped. They flew her by helicopter to have brain surgery to stop the bleeding. Her daughter is a nurse. She was not worried about her surgery, but was worried about her quality of her life. I told Lynne. She gasped and raised her hand to her face. “Oh no.” The concierge got her upstairs while I called my children. This morning I heard the surgery cleared my sister’s clot. She shows some deficits in her left leg. There is hope for a strong recovery.

At lunch yesterday, I brought Lynne a Starbucks vanilla Cappuccino. She downed it with the rest of her meal.  Staff is trying to keep her seated because she continues to lose weight from her walking. Staff and I reviewed a problem earlier in the week when she did not get her calorie booster because the supply in her apartment ran out. The Med-Tech had not been told how to reorder it. I told him to use the Aegis supply because it is a prescription. That worked, but it did not solve the organizational problem that staff did not know what they were supposed to do. “I told everyone,” said the supervisor. I suggested a sign on Lynne’s cabinet. The head nurse said she will reorder it herself.

When lunch was over, Lynne’s friends, Nancy and Karin, showed up with a large cup of coffee and lifted her out of her chair to take her outside for a walk. She went willingly. They had a hard time keeping up with her because she was ready to go. Good walking, balance, good talking. Lynne told Nancy off a couple of times including, “You go do your own thing.”  

Wednesday, Lynne’s friend Sandy from the neighborhood, walked with me though the Arboretum as she shared some alternatives to visits. She and another friend believe their current visits upset Lynne. She doesn’t recognize them and tells them to go away. Sandy is a speech pathologist who works with people in assisted living. She had some ideas from her experience. Since Lynne has tunnel vision and cannot distinguish details, Sandy suggests we show her a large blossom like a Peony in one hand without a stem. She may be able to hold it briefly. Another idea is to give her something with one of her favorite colors (blue, red) such as a piece of paper or a small pillow. She recommended a small toy breathing dog she has seen soothe one of her patients. I ordered a breathing German Shepard puppy.  Sandy will keep thinking.

Tuesday night Lynne was agitated when I visited her. We walked around the floor as she talked aggressively from random thoughts in her mind.  She pointed at a display of family photographs on the door of a resident. I turned my back on Lynne to look at them closely. I said it was a nice way to decorate her door. She said, “No,” and shoved me toward the door. I was off balance as I stumbled to my right, but she shoved me again so hard I fell backward into a cabinet on the wall. My forearm bled from a gash two-inches long and one-inch wide. I wrestled off her headphones as she walked the other way toward the dining area where staff could care for her. I could not. I slipped away without saying goodbye.

I am grateful for all the support she and I receive. We persist.

Dad in Live Interview

JOIN US FOR OUR UPCOMING LIVETALKS
A Daughter’s Alzheimer’s Diagnosis
Being Patient.com will speak with James Russell about his daughter Lynne’s early-onset Alzheimer’s. As part of our LiveTalk series, James will share the ways Alzheimer’s has affected their family, and his gratitude for all those who have supported them along the way.
RESERVE YOUR SEAT: Thursday, May 18th at 2:00 p.m. PT / 5:00 p.m. ET

Being Patient is the leading online community for Alzheimer’s & dementia patients & caregivers. https://www.beingpatient.com/

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

Memories from Miles Away

Even though Susan lives thousands of miles from Lynne, she shared personal stories deep from her heart as a gift for Lynne. I shared the stories with Lynne and her boys, wondering how much Lynne would remember in her dimming light. She remembered Susan and so did the boys. We caregivers benefitted from those stories more than I expected. I have edited the three stories for brevity and clarity for you readers. After the stories I’ll summarize what they meant to us.

Lynne’s Office.  Early days working at Microsoft as recruiters, Lynne and I took an extra hour at our desks after the frenzy of candidates had left for the day to celebrate a hire or commiserate a no-hire. I would find myself walking to Lynne’s dark office with only her desk lamp on. It looked really calm in there. Her desk was always cleaner than mine. She was surely on top of it all. I wanted to be with her in her office in the soft glow of calm and confidence. She always greeted me with a smile for a quick chat that sometimes turned into an exceedingly long chat. We mostly laughed and talked about the “big nerds” we loved and how overwhelmed we were.  That shared experience proved foundational over 30-plus years. Somehow recently, I remembered to remember that gift, her gift, just down the hall from me day after long day.

Baby Roses. Early in 1997 Lynne shared she was pregnant with Henrik and Simon. IShe was in the very early days when doctors tell you not to tell anyone. She told me in the strictest confidence. I was overjoyed for her and Clemens. Lynne was beaming with happiness. It was contagious. I bought them flowers, baby roses to be exact, because Lynne always had a batch of fresh flowers from her garden, so another fresh batch would not indicate any celebration. I remember being proud I found a way to celebrate with her while not projecting her secret. It was our “inside joke.” What strikes me today is I didn’t care if my gift was premature. Her smile when I delivered the flowers said Lynne was delighted someone could simply join her in her joy. Not overthink it. Just enjoy that moment.

Saving a Stranger Dog. One day Lynn and I came across a large shepherd mix awake but not moving in the middle of a dirt road. We were on a hike, a girls getaway. Our heart sank when we realized this dog would likely die. Lynne got her car and together we loaded it into the back of the van. It had hundreds of ticks in its skin. I asked Lynne if she wanted a tick infested dog in her car. She looked at me and said no problem. The shelter tried to find the rightful owner. A few days later I called Lynne and much to my surprise, she was seriously considering adopting this dog, from a rural existence with so many ticks. I thought, Of course Lynne wanted this dog. This was one of those times that as Lynne’s best friend , I forcefully shared my concerns given her full house with kids, dogs, and cats. She was frustrated, maybe at me, I don’t know. I don’t recall speaking of that dog again. It never moved in with her.

I’m not sure Lynne remembered those stories, so it was a blessing for her to to hear them again. The boys enjoyed the memory of Lynne’s friendship with Susan through a lasting relationship, secret pregnancy celebration, and protecting Lynne’s family from self-inflicted trouble due to her overwhelming compassion. Those memories now live with her boys. I have vowed to share those stories with the boys. I don’t have those stories, friends do. And by sharing them in a network of sharing and posting, friends can see ways to care for all of us by sharing memorable stories with Lynne.

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

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.

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.