weight loss

Light Moments with Lynne

James S Russell3 Comments

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

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

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

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

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

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

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

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

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

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

Nancy Rides Again

James S Russell2 Comments

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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.

Visitors Helping Lynne and Dad

James S Russell3 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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.