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.

Light Moments with Lynne

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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

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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.

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.

Visitors Helping Lynne and Dad

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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.

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/

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

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.