New scratch on L’s nose is from a fall with a friend. She had fallen 2x the day we visited. She’s a walker. My mom, also a walker, cracked her pelvis on her last fall. Unrepairable. Mom laid in bed for 6 more months. We live with insoluble fear. While we sat with her she often stood to walk but gave up because Carol and I sat too close to her. She sat back causally. An anguished aide keeps considering ideas for her as a walker: A helmet? A safety suit? #alzauthors #alzheimers #caregiver #dementia
Inside Alzheimer’s (Rev Ed.) author Nancy Pearce. Excellent book on how to learn to visit people with dementia. She provides many practical ways to overcome fears and learn skills to “focus on the now” to experience the joys of visiting #alzauthors#alzheimers#caregiver#endalz
Lynne had this poster in every home, including now.
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/ #alzauthors#caregiver#endalz
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
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
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.
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.
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.’”
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.
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.
