Enjoying Times of Normalcy

I had heartwarming caregiving yesterday afternoon with Lynne, an experience I am convinced she enjoyed as much as I did. I also found out I had checked up on weight later than I did.

She welcomed me in surprised relief with a hug so strong I had to brace my feet to keep from tipping over backwards. At the same time, her body felt thinner, triggering my worry that I had not check with caregivers about her weight and whether she getting more than the traditional portions. We strolled back to her room where I told Alexa to play music from Elton John. Despite Rocket Man soaring in the room, Lynne sat quietly focused on the floor more subdued than typical. She quickly sucked up apple juice and we opened the picture book of our trip to Alaska. Soon, she had the energy to aimlessly roam out of her room to the general meeting area. I suspected the sugar had picked up her mood. 

We sat at a table where a caregiver thoughtfully stopped to tell me she was doing very well with help getting dressing, bathroom, shower compared to earlier resistance. I asked him how much she weighed and how often they weighed her. He left to bring back a chair with a scale on it. Lynne willingly climbed in and weighed 126 pounds. I said she weighed 134 when she entered, so she’s lost eight pounds in a little over a month. He said she eats everything, so I explained she had double portions because. He said, “She’s like an athlete. Exactly what I wanted him to understand. A Med tech joined the conversation. After the same explanation the MedTech said that she would make a note in the file to feed her more. I felt pleased the caregiver and MedTech responded immediately to get the scale and make a note in her file. And got over my guilt at not paying attention.

I told the receptionist about the good meeting and she asked if I had told the general manager.  No. Well, he’s in his office so you should go tell him. When an experienced receptionist tells me to talk to a manager, I do it.

We had met when he interviewed Lynne at Aegis where assured me she would get extra portions, adding they have no limits on portions. I had not known what I was going to say because it’s delicate to tell him he and his staff were not feeding her enough, but by the time my butt hit the chair I said, “I want to talk to you about a fantastic experience with your staff.” He thanked me profusely and turned to send a note to the staff and head nurse when I got up to leave.

I believe Lynne enjoyed our experiences getting energy from treats and help from caring people. I saw a sparkle in her eyes before I left, and she casually accepted our time was over. I always wonder if she enjoys our times as much as I do, and she enjoys them as much as she did long ago before she was diagnosed. I believe those visits can make feels normal with me, her dad, her sons, and her friends like Nancy. I pray I am right.  

Meaning Persists Despite Seizures

Lynne with her 3 sons

We had two pleasant visits with Lynne in her new memory care floor without the anxiety she had felt earlier in the week. Thursday she was joyous as she recognized and hugged each son. Simon and Christoph spoon fed her lunch. At one point she saw me at a separate  table and smiled, “Oh, my Dad is here too.” On the way down in the elevator, Christoph said, “That’s the best I’ve seen her in quite a while. Friday I joined her to watch a game show on TV. I said, “By the way, I have some brownies for you. She surged forward with a nod of her and said, “Get to it, huh!” We laughed. We walked to the aquarium room with deep armchairs where we sat quietly. I watched her face go through one emotion after another: a light smile, a frown, an emphatic gesture to finish an unrecognizable statement, concentration as she scanned the area, and softening her muscles when she laid eyes on me. I remember loving to watch her emotions surfacing and vanishing across her face as an infant. She looked alert, loved, and relaxed.  I wondered if she enjoyed the companionship as much as I did. I stood up. “I gotta go,” and kissed her on her head. She tipped her head. “OK.”   

Saturday the Head Nurse woke me up at 7:45 am. They found Lynne lying on the floor in her room with a golf ball sized bump on her forehead, blood from a cut on the skin of her nose, and a cracked cartilage in her nose. Lynne probably had an epileptic seizure early that morning.  She had probably laid  there for half-hour before staff found her and put her in bed. The head nurse and the doctors believed she could not break her fall with her  hands because she had an epileptic seizure. Ambulance drivers took her to  Virginia Mason Hospital, during which time they witnessed a second seizure. As Carol and I stood by her in the emergency room that afternoon, she was thrashing in bed to get our the restraining cords on her wrists. Suddenly she yelled in a third seizure which lasted a few minutes while 3 nurses attended to her. Last year Lynne had seizures in June and August, after which doctors prescribed a minimum of Keppra. She had no recurrence for over a year, so we thought it was controlled.

I have read that approximately 10-22% of  patients with Alzheimer’s have at least one seizure. Seizures are more likely to occur with early-onset Alzheimer’s in the later stages. Carol and I saw her Sunday when she was still thrashing against restraints to keep her in bed. We will meet with her neurologist and Lynne’s Head Nurse on Tuesday to consider new prescriptions and their likely side effects.

Monday The VM doctor called me to say Lynne is resting comfortably. She’s pleasantly chatty. Keppra, Lynne’s epilepsy medication to prevent seizures, was seriously below expected levels in her blood stream based on her present dosage. Apparently she had not swallowed the prescribed dosage for unknown reasons. I’ll talk to Quail Park about why. The VM doctor and neurologist have prescribed the next level of Keppra which they believe will avoid future seizures. They will probably discharge her Monday afternoon after arranging delivery details to return her to QP.

We must wait to see how we might be able to care for her in a comfortable, meaningful life without seizures and unpleasant side effects. I am much more encouraged than I was late Sunday afternoon that we can maintain Lynne’s reasonable quality of life for the near future.

Lynne in a Better Place

Nancy & Lynne BFF

On Thursday, September 1, we added sons Herik and Simon to be durable powers of attorney for Lynne. Afterward, we moved Lynne to a new home at Quail Park Memory Care.

Henrik and Simon agreed to be co-DPOAs if I was unable to perform. A Notary had to be convinced Lynne understood the changes and approved of them by signing the documents. I believed she understood and wanted the changes, but wondered whether she could sign the documents. If not, Lynne would have to convince the Notary to sign for her. So I enlisted the help of Nancy, and friend LynnR, to help Lynne get approval and be witnesses. They have had consistent success enlivening verbal statements from Lynne.

I had prepped Lynne the night when we had walked the halls. I asked her, “Do you want Henrik and Simon to have powers of attorney to help Dad take care of you?” She listened but kept walking. Five minutes later I asked her the exact same question, “Do you want Henrik and Simon to have powers of attorney to help Dad take care of you?” She listened but kept walking. I asked her the exact same words after another silence. She immediately said, ”Yes.” I texted Nancy to give her the exact words to use. 

I had wrestled with questions the night before. Could Nancy and Linda get her to the building? Would she sense something and resist? Nancy had told Lynne she would be moving to Quail Park and drove past it. I had promised her night after night, “I was going to get you off this floor.” She always accepted it in silence. Would she resent being in a different setting? Would she miss the staff who had told me for two days they would miss her because she was a caring, active, courageous person?

On Thursday morning Clemens, Simon and I met in Lynne’s room after she had left. Clemons and Simon broke down Lynne’s queen bed for shipment to her cousin.  We loaded all of Lynne’s clothing, teddy bears, dolls, painting, photographs, and toiletries and drove to Quail Park to get there before Nancy and Lynne arrived so we could prepare her room. Lynne had arrived before us. Nancy and LynnR kept her entertained while we hung up her photos, placed dolls and teddy bears on shelves, organized her clothes in her dresser and closet, and hooked up her echo so Alexa could play music for her. 

“Oh, by the way,” Nancy turned around to say. “Lynne signed the documents.” I was ecstatic for Lynne. She was still in control of her life and we had made her feel that. What a glorious satisfying feeling that was for me. 

She ate lunch with Simon and me and then watched a TV program with other residents in the TV nook. After a couple of hours Lynne began to get anxious and aggressive. We called for the Heard Nurse who met with Simon and me about her care. She indicated Lynne was following a normal pattern. A visiting physician would provide advice on medications to continue calming her. The head nurse usually doesn’t recommend family visits soon after the move, but Lynne , so the nurse encouraged us to continue because Lynne welcomed visits from all of us

Today is Monday as I write this and Lynne continues to progress through the ups and downs the head nurse described. Nancy, LynneR and I have had to remind staff Lynne needs puree’ food, medicine crushed in puree or Applesauce, pants that stay on, and pain in left foot from sores. At times she has vigorously resisted help getting clothes on and  going to the bathroom with caregivers she does not recognize. I helped Lynne permit a caregiver to take her shoes and socks off to change her pants because they needed a belt.

Lynne and I rested on a quiet patio Monday afternoon as she sipped on a Starbucks Frappuccino. I said Quail Park was in a quieter neighborhood with less construction equipment, trucks and sirens. Care would be better, the residents on the floor were more tranquil and fewer of them.  She ate a nice full lunch. I walked up the street and bought her a belt for her pants and looser socks for her feet.

Nancy called to say their visit was similar, but Lynne needed new shoes. Then she said, “Oh, and I asked Lynne if she liked it. She said, ‘Yes I like it.’”

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 Ups and Downs

Tags: caregivers, anxiety, fear, isolation, loneliness, consoling, confusion, video chats, dementia, Alzheimer’s, teaching

Since we celebrated Lynne going off hospice after gaining weight, our major focus is helping her in the various moods she experiences. Lynne signals us to meet her in her moods until she is more comfortable with us. It’s my guess she is more and more comfortable with quiet familiar friends. She reacts to sudden noises and voices. Pam and I took her to a favorite spot in a hair salon, but she became so uncomfortable we all decided she is no longer comfortable with washing, drying, and flat ironing her hair.

Lynne walking to get space from friends

She was happy to see Susan and called her name, and equally happy to see Nancy, a regular visitor. Shortly afterward she walked alone ahead of them to keep her own space.

For a couple of weeks she is relieved to see me and reaches out to hug me with anxiety, tears, instead of excitement. I don’t want her to feel loneliness with anxiety, so I start thinking I need to more often. But that puts pressure on my writing and my personal life. I think we need to review her medications for moods. I also think we need to check for medical reasons to see why she stops so often to bend over, or grimaces from pain somewhere in her body. We cannot identify a cause.

I am full of love and appreciation for everyone from staff to friends, to family, we are doing as well as we can at this stage. I keep thinking she will find a comfortable plateau, but we need to expect change and move with her in love, even when the only way I can comfort her in my arms is, “I’m so sorry. I’m so sorry. I’m so sorry. I’m so sorry,” until she calms down.

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.