I didn’t visit Lynne. I thought I should. I go almost daily. I had to do taxes. Tired. Doubts I help much. I wish it was over. Others visiting. Carol was here. I needed a break. Afraid I’d feel guilty. I don’t. Except twinges of doubt and regret.
Tags Alzauthors Alzheimer’s caregiver dementia
Two days after my request for hospice care, Lynne was vibrant, aware, & excited in Jennifer’s visit. (see below). I await a hospice nurse’s evaluation. In the meantime, my responsibility for Lynne’s care once again enmeshes me in doubts.
Jennifer’s story: (minor edits) Good visit with Lynne on 3/23. Got lots of laughs and responses. I arrived a few minutes after 3pm.
When I got off the elevator Lynne was in the same place I saw her last time. Bent over, standing with hands on her knees. I took my coat off, set my things down, got chairs in place and then I put my hand on her back as I leaned in close: “Hi Lynney, it’s me Jenny…”
She stood up, laughing, eyes open with a big smile on her face, “Hi!”
“I’ve come to rub your hands again. What do you think about that?”
With a smile she said, “Yes!” As she started to walk in the direction of the chairs with my guidance.
I got her situated in the chair sat down in front of her and said hello again. She smiled with her face down, towards her lap. As I began to massage her hands, I reminded her of how cold the lotion was last week, that it made her jump with surprise…to which she lifted her head, “Yes,” and laughed.
I talked to her about memories, the kids sledding, Christoph crashing into the fence after a sledding race, and needing to go on a snowy adventure to the ER. I named the kids who were there: “Gianni was there, remember little tiny G?”
And she looked at me immediately and responded with a sentence in her own language, but I’m sure she was concurring that she did, in fact, remember little G! I talked about her cowboy boots I always loved that she’d wear with her skirts. We sat in peaceful silence, while I rubbed her hands and legs.
Then I told her I brought a book to show her, a book she had given my kids that she loved and had in her classroom…immediately she smiled, “Can I see?”…!!!!
Clear as day!!! I put the book in her lap she looked at the cover for about 15 seconds while I read the title and explained the story line. Even though she had closed her eyes, I opened it and turned the pages and told her the story, not word for word, but the high points. I got to the part where Sam realized where Louis lived — Louis’ drawing had a clue — he loved running after the soccer ball! His own version of “playing” soccer.
She opened her eyes again and looked at the page with the boy’s drawing. She used to love that book and the boy who was different from the other kids.
I put the book away and went back to massaging and just holding her hands while playing some music from a “70’s Road trip” play list. Stevie Nicks, Billy Joel, Carole King…she seemed to hear and enjoy the music.
I leaned in close, down low with my forehead to her forehead, so I could see her eyes and face…”I love you Lynney! I love you Lynney! I love you Lynney!” She chuckled, smiled, looked at me without raising her head and said it back, not clear as day, but she definitely said I love you, through her smile.
I didn’t have a comb, but I asked if I could use my fingers to comb her hair and massage her scalp.
“Mmmm, hmmm!” A pleased look on her face – She liked it.
I told her I had to go. She heard me and made a sound of consent. I told her I’d be back next week to massage her hands and she said, “Yes.” I hugged her and rubbed her back and told her I loved her again. She stayed in the chair, seemed peaceful from outward appearances. Of course, it’s hard to know for sure, but I hope she was.
A Washington Post Article by Christopher Rowland, @PostRowland, reported senior care costs represent “the single largest financial risk” facing boomers and their families in the US. And if not addressed it will become a humanitarian crisis. Crisis. And if not addressed it will a humanitarian crisis.
Lynne’s twins embraced their mother earlier this year. The article about the Boomers unprepared for the costs of long health care is a threat to their children who may need to come to their aid. Fortunately Lynne’s finances are projected to cover her costs.
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 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
#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
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.