We moved my Mom from Adult Family Housing to a memory care unit. She was a walker and needed more space. At our first visit, she introduced us to her new boyfriend. They walked everywhere together. Traits in Lynne: Alzheimer’s, walker, friendly, healthy body. #alzauthors#caregiver
Friends and a Boyfriend
Lynne is guided hand in hand by her roommate, a sweetie my age. She is more verbal and mobile. She asks me to help so the three of us walk together. She introduces me as her boyfriend and Lynne as my daughter. It’s working out well for all of us. #alzauthors#alzheimers#caregiver
Join Her Smaller Livedspace
Lynne adapts to dementia by reducing lived space, like her calm peaceful quiet 2-BR apt. She walked in 4 rooms. “Hi, sit with me on the bed.” Opened her mouth to ask for a choc mint. Alexa played Lyle Lovett. She sang, danced, smiled, & slowly revived.
Smaller Space Longer Time worked. This a good meta-analysis of the importance of giving her smaller, peaceful, quiet lived space when possible: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5795848/
Christmas Bliss for Carol
I ached for Lynne alone, aimless, abandoned as Carol and I dressed in our bedroom in the historic Silver Queen Hotel in Virginia City Nevada before Lacy J Dalton’s Comstock Christmas Concert at the Red Dog saloon, my gift of Christmas bliss for Carol.
Reduce Lynne’s Unrealistic Goal
Lynne loved visiting my mom for hours and hours in Mom’s early Alzheimer’s. Lynne set a goal to be as happy as Mom for my sake. Mom was retired. Lynne lost her sons’ futures, friends and a career. Happy led to failure. I regret not helping her understand that #alzauthors#endAlz
Let It Be
#Alzheimers #Alzwa #alzauthors #alzheimersSpeaks #caregiving #endalz
A week ago I received a report that the pain in Lynne’s left foot showed great improvement: she was wearing the black shoe I bought in a little bit bigger size than her other shoes, her fluffy socks that were in the drawer instead of tight pull-ons, and a bandage on the bottom of her foot staff. Staff said she had left it alone. The swelling had gone down. For the hour I was there she never once winced in pain or tried to work with her foot or her shoe. I hand fed her bites of mini-Reese’s peanut butter cups. She drank all of her Frappuccino so fast I switched to water, but she made an ugly face and looked at me. I apologized. She nodded her head.
I finally said I had to go. She said OK. I felt good when I left her in her reclining chair with a peaceful face. On the way home I thought of what her life was like after I left. Did she spend hour after hour dozing in that chair? Did she strain against the invisible barriers that weigh her down, confuse her, anger her, and terrify her, hoping to break free to find human touch, connection, clarity, love, or meaning?
That night I listened to Let It Be by the Beetles, over and over and over, hoping for an answer.
When I find myself in times of trouble Mother Mary comes to me Speaking words of wisdom Let it be. And in my hour of darkness She is standing right in front of me Speaking words of wisdom Let it be And when all the broken-hearted people Living in the world agree There will be an answer Let it be For though they may be parted There is still a chance that they will see There will be an answer Let it be. And when the night is cloudy There is still a light that shines on me Speaking words of wisdom Let it be Let it be, let it be Let it be, yeah, let it be Whisper words of wisdom Let it be
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.
Lynne in a Better Place
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.
Light Moments with Lynne
#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.