Assisted living

Adding Weight to ThinLynne

James S Russell1 Comment

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

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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

Better Environments Help Lynne

James S Russell1 Comment

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.

Lynne Can Have Visitors

James S Russell2 Comments

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.

Updates Under Hospice Care

James S Russell2 Comments
Lynne and an oncoming hug

Lynne’s bumpy trip through her first week in Hospice and Palliative care led to adjustments made by the work of her new nurse in consultation with her entire medical team, caregivers, and me. I had become concerned by the declines Lynne showed that week. Lynne was minimally responsive on a sofa in front of the fireplace as she concentrated on the music in her headphones. Lynne walked leaning to the side and backwards with a very stiff back. She fell onto floor near a chair, but no harm. She sat with her head looking up at the ceiling in a rigid position at an ice cream social where I spoon feed her. One morning she had returned to bed with one leg hanging over the side and kept dozing off as I stayed briefly. The floor med tech decided she was in a lot of pain from walking and leaning backward one day, so gave her morphine, which scared me.  Yesterday morning when the floor manager observed after being gone for a week, she said, “This is not Lynne.”

The new nurse calmed me down. I was worried at what I saw in comparison to my unrealistic hope she would show immediate improvement. I felt derelict as caregiver because I did not get accurate information from the beginning. I am pleased with nurse’s response and expect I’ll be updated on her care.

I contacted her new nurse yesterday and passed on my experience and what I had picked up. She called back after supper with her report. She had seen Lynne one-half-to-an-hour after the of morphine, which is during the peak time for its effect on the resident. It was a very low dose and Lynne was fine at that time. She informed me about Lynne’s new prescription of Tramadol twice a day and cut-in-half her Seroquel dosage at bedtime. She also clarified misunderstandings I had from incomplete  information in my talks with staff

Yesterday morning she stood rigid listening to the music director lead us in floor exercises. She sang lyrics with from Love is a Butterfly. Lynne enjoyed watching the musical director and me as I led us in stumble dances through two-steps, tango, and east coast swing under the direction of a resident trained as a dance instructor. We can still have active fun.

Gems of Joy

James S Russell4 Comments

Today’s post is from a longtime friend of Karen’s and mine who shared with me after my post about shifting my care during frequent mood changes (1/5/21 Shifting with Her Moods). Her sharing from her experience helped me, and I thought would be helpful for readers..

“ I read your Facebook post on shifting moods and it took me back to the 3-4 years we spent with my mother-in-law who had advancing dementia.  I’d like to share with you some of my ‘learnings’ during that time—some from reading, some from learning from my communication mistakes.  I hope they can help you realize that you are doing the best you can under constantly changing circumstances.

“I found that I had to give up my ‘teacher and reality orienting’ roles that I thought were so helpful.  I read an article that reminded me of what I knew worked so well with children: meet them where they are, go into their world and let them lead you.  I thought of that when Lynne said, “I hate this place.”  Letting her know that “I hear you,” or “This is hard, painful,” or something to that effect helps validate what her reality is for that moment–she’d rather not be there.

… she went through multiple moods with tears, pushing me away, shouting at me, then smiling, focused, following me in and out of her apartment.  “My MIL’s mood swings were a challenge for me—until I realized that I was taking them personally, thinking there was something I could do to make them better.  My presence was my gift to her, whether her mood was positive or negative—I tried to be a sponge and just absorb and accept and witness them.  It helped me that I knew she would quickly change, and, better yet, would not remember or “accumulate” these unhappy moments as memories.

I had not helped her.” I cannot fathom how painful it must be as a parent to be unable to take away my child’s pain, the one thing (after unconditional love) that we see as our role.  But then I reviewed your description of your time with her.  You gave her nourishment when she couldn’t do it herself, you danced and laughed with her when she felt like it, you accepted her following you in and out of her apartment— all with love and acceptance of the moment.  It all helps—but those times cannot be exchanged like green stamps (if you remember them) to lessen those painful times for her.  I will pray for more joyful times than painful ones, more movement and engagement than withdrawal — perhaps that is all that can be hoped for.  Gems of joy to be gathered and returned to when times are tough.”

Be Ready to Uplift Any Instant

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Short Short Story 344 words

Be ready to uplift Lynne any instant, I remind myself. Anna, her exerciser-advocate texted me they finally had permission to go outside and were headed for the soccer field. I’ll be there I said as I stood in my PJs with bare feet, unwashed dishes, unshaved beard, unwashed face, unbrushed teeth, uncombed hair, unmade bed, unanswered emails.

I kicked the pink soccer ball into Lynne’s view as soon as I saw them. We kicked over to Parker-the-toddler and invited him to play. He loved the pink soccer ball. His mother encouraged him as he sized us up. He picked up the ball barely smaller than he was and kicked it at least half-a-foot towards Lynne who was 20 feet away. He jiggled with excitement as Lynne laughed.

We kicked the soccer ball towards a man more her age wrapping his arms around a large a 20-pound leather exercise ball and heaving it a foot or two. I said my ball was easier to pick up. He laughed, stepped back and invited Lynne to try it.    

Instead she kicked with her clog shoes and moved it half-a-foot. She backed up to get a better run at it. He advised not to do that. Might hurt her toe. She agreed.

Anna said Schmitty the kitty is racing around the apartment. He is friendly with everybody. Tries to head out the door when it opens. I suggested to Lynne we should get him a bigger apartment so he could run around more. She listened.

The hard part was not having anyone to talk to during 12 days inside because a resident had the Covid-19 virus. I suggested we should get her a roommate so she’d have someone to talk to. She listened.

My suggestions were inspired by caregivers who believe Lynne needs a place where she can be safer, more social and more helpful to other residents. They have space in the memory care unit. Her brother, sister and I agree. We’ll have a one-hour virtual-tour of rooms and facilities in the memory care unit next week. We’ll be ready.

Mother’s Day Gift: A Cat

James S Russell1 Comment

Lynne’s guardian angel cat volunteer at Whisker City in Shoreline somehow completed health checkups and paperwork to adopt a cat on Saturday. He is an 11-year-old long-haired, dark-red single-owner cat rescued around the day I called last week. Our family was not prepared. We told Lynne he is her surprise gift for Mother’s Day and arrives on Tuesday. He wrote his own introduction to her for Mother’s Day:

Dear Lynne, my first owner moved into a nursing home and can’t take care of me, so he asked Whisker City to find my new home. Whisker City is in Shoreline Washington with a very good reputation. “No matter how much time has passed since you adopted your kitty. We will always take back a cat that was adopted from Whisker City.”

Patricia Curry, a volunteer at Whisker City, recommended me as a perfect Mother’s Day present for you on Mother’s Day. You sound like a perfect match for me. My first name was Friskie, but that was 11 years ago and is no longer appropriate because I like to snuggle and cuddle. Please give me a new name that you like. See you soon.

This is Hard

James S Russell3 Comments

Short-short story

Midnight. My two sleeps in my apartment were challenged last night. A beep-beep-beep sound penetrated my first sleep at a way-to-early time, first raising awareness and next  understanding – it was a warning beep. For what? My heart? My bi-pap sleep machine? I hit the bi-pap stop button. Pulled off my sleep mask to find the source of the beep. The beep had stopped. When did it stop? I checked my bi-pap screen. No warning lights. My heart monitor  screen on the floor? Green glow means OK. My radio alarm? No alarm lights on. My phone? No alarm going off. What? Silence. Sleepy. What?  Check them again. Walk out my bedroom into my kitchen. Nothing on the microwave. The oven. What? Was it a truck backing up on the street below my open fifth-story window? The beep was too loud for that. 

I was alone with questions. If Karen was alive she would help me figure it out. Or ask why my alarm went off. At least I avoided that question. 

What to do now? I had too many options for my sleepy fog.  

I could go back to sleep. I tried it. Didn’t work. Got up. Frustrated. Pasted comments from friends on Lynne’s Facebook page so I’d have a written file in case I ever figured out what to do with them. I made notes for a to do list. Ate breakfast and climbed back into bed for my second sleep of the night. Frustrated. This is hard. 

                                               ———————————

6:00 am:  I was asleep so this is based on what I’ve gleaned about Lynne’s normal wake-up routine.

Lynne woke up in her assisted living apartment to the white noise of rushing water in her sound machine. Good sleep. Turned off her machine. She sorted through her options in her cognitive fog. She never goes back to sleep. Dawn rose through her 3rd-story window with a view over the rooftops of Seattle’s Madrona neighborhood. Occasional cars drove by, fewer with the Covid-19 lockdown that squashed the early bustle of commerce at the corner of Madison and 23rd St. Silence prevailed. Way too early. Too early for a caregiver to knock on her door and say “Good morning, time to get dressed.” No one to comb her hair, put on makeup. No one with breakfast. No one with medications.

She got out of bed. She saw a blue and white sweater on the floor and pulled it on over her pajama top. She did not see her glasses. She ignored the books on her bedside table. She went to the bathroom. She came out to the living room.. What to do?

She saw books in the chair. The Lacuna. She didn’t like that book. She saw magazines. Sojourner, Dad’s magazine. Journey, Dad’s magazine. Astoria was on the table. She liked that book. She opened it and started reading. She read for a while. She got tired of reading it. She went into her bedroom and laid down on her bed. She saw The Seamstress on the table by her bed. She opened it and started reading. Then she did not want to read books. And no one had knocked on the door. She wanted to leave her room, but she could not go outside without a caregiver. She was hungry. She had to wait until they brought her breakfast. She could not sit with her friends for breakfast. She had to stay. Alone. This is hard. She walked into her living room. She saw her phone. She was surprised. Where did that come from?  She picked it up. She called Dad. 

                                       ——————————————

7:30 am A gentle jingle-jingle-jingle penetrated my second sleep, first into my awareness and second into my understanding. My phone was ringing for a video chat. At 7:30 am? Too early. Rushed over and picked up the phone. Lynne calling.

Her face popped up on my screen. She did not have her glasses on. She had bags under her eyes, or maybe yesterday’s mascara wasted after a night-on-the-face. A blue and white sweater covered her pajama top. Her mouth drooped. Her voice cracked.

“This is hard,” she said.  

Somehow, she had found her phone. I realized it was left in her room after yesterday’s video chat with her boys.  Everyone had fun on that chat. Her voice jumped with excitement as each boy joined the chat. The phones were full of laughter. The boys created hi jinks in the Messenger app with a feature that super-imposes silly images and masks on participant’s faces. Dad clicked on with huge framed glasses and clenched a rose between his teeth that kept falling out when he talked. She had belly laughs. “Oh, I needed this,” she said.

That call ended last night as always. Lynne and I slid into sadness as one boy at a time vanished. One had to go to work. Another had homework to do. The youngest had already left to finish his paper due the next day. I was last. “I’ve got to go too,” I forced myself to say. I could tell it was hard for her to lose the last face. I promised to connect tomorrow. I clicked her face off. Silence. It was hard.     

Now Lynne and I were on the phone before breakfast. Like old times before we took her phone away. She called Karen time and again at odd hours when she could find it. We reprogrammed it to make it easy to call my phone and left it at the concierge desk to know where it was and keep it charged. She usually needs a caregiver to start the call.

She was apologizing for calling, for being early, for interrupting, for not having an appointment. But it was hard.

We chatted about the day and the fun we had with the boys. Too soon it was time to click off again. It was hard.

Lynne Getting Her Kicks Out of Feeling Alive

James S Russell2 Comments
Getting Her Kicks

Lynne’s suggestions improved our outdoor exercise today. Last Saturday she considered the children’s plastic orange beach ball too light and too small for kicking on a soccer field where her boys had kicked official soccer balls. An official soccer ball is an essential medical device for mandated exercise, and so is the pacemaker device in my chest that needed a check-up at the cardiologist’s office on Monday. Fortunately, a Fred Meyer near the hospital had five sizes of soccer balls in a deserted aisle. The packaging explained the official size for youth her boys age was 4. They had it in pink. Perfect.
I bounced it into her hands at the front door of her assisted living facility. She tucked it tight under an arm in our walk to the field. She was right to upgrade our medical device. The ball flew farther, spun more, curled past our feet and around goal posts. It took more skill to kick or stop. We ran farther to retrieve it, exercised harder, and laughed constantly.
We’re grateful staff exercises her outside where I can join her and keep my distance. The exercise is more vigorous and healthier than one of my lonely walks. Admittedly she doesn’t play like old times. She knows how to kick it. She may walk past it toward the caregiver who points at it to remind her she was headed to retrieve it. She can kick it right at me. When we suggest she score a goal, she aims at the middle of the field. Only we notice missteps. She never does. She celebrates. She laughs. She walks and runs. She never loses her enthusiasm for being outdoors. For exercise. For friends.
Before we walked back, I announced Mary, a high school friend, was calling her at 11. They haven’t talked for years. Her face lit up. “She is?” She repeated her name and recalled her. The last smile I saw on her face was when I reminded her, again, Mary was calling at 11.