While I was with Carol, friends Nancy & Rauch cuddled with sleepy Lynne in her single bed. Recalled 20 friends in a slumber party in a massive snowstorm. She laughed a lot & ate a bounty of meals & snacks. “2-hour sweet visit.” Soul-stirring blessing for Dad.
New haircut, finally. Designed to easily brush, shampoo, and look good all day. Caregivers, concierge, co-residents, barber, are all happy. She can walk and eat without hair in her eyes. She seems to walk more upright now. Halleluiah!
Lynne hugged me. She usually hugs me tight & pushes away within a minute. This was a gentle hug, resting in my arms, standing straight. 2 minutes, 3. Whispering in my ear. 5. The cleaning lady had to push her cart around us. 7, 9, finally 11. A gift.
Lynne’s brother and Dad remembered when Lynne danced to Dance Like an Egyptian. Keith’s wife Sheri played the music and Keith and Dad danced while Lynne laughed.
Henrik, Lynne’s relentless child, regularly chanted “I can do this. Nobody knows, but I can do this” He inspired our family. I saw Lynne stop, hang her head, rest her hands on her knees until she inspired me: “I can do this. I can do this” and rose up.
Lynne walks head down now. Hair covered up her eyes. It frustrated her, us. She took off headbands. Too much hair for scrunchies. Booked a haircut. Thankfully a caregiver tied it in a wrap. Happy now as she waits to use her straw for a new drink. Dad’s handicapped caring for his motherless child. #alzauthors#endAlz#caregiver Tags: Alzheimer’s caregiving haircare dementia
Seeing Lynne in her final stage is painful at times. What helps is other caregivers caring for me. Patricia, a classmate and educator, posted this statement to me, “You raised a spectacular woman. Lynne was a fantastic educator and all-around human.” #alzauthors#endAlz#caregiver
Lynne studied my wedding photo the 29th. She had adored it countless times. I said, “I miss mom.” She teared up, sorrowful, “I miss Mom.’” We repeated it. I said, “She loved you so much.” She heard it. Alzheimer’s caregiving includes sharing sorrow.
Lynne’s mom and I married 11/29/63. After Lynne’s diagnosis they loved, disagreed, & agreed daily. Mom’s hospice was moved to Lynne’s facility to be with Lynne. Seeing us together, Mom said, “I am seeing a miracle” Lynne still says, “I miss my mom.” #alzauthors#endAlz#caregiver
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.