Nevertheless Dementia, We Persist

These are notes from three visits with Lynne from May 22nd to June 22nd. The first is from Lynne’s friend, Edith who gave me permission to share a portion of her visit on May 22nd.

I arrived around 1:00 and when I got up to her floor, I saw her right away, taking slow shuffling steps through the hall. I lowered my mask and called out, “Lynne! It’s Edith!” She got a big smile on her face. I don’t know if she recognized me as her friend or just someone familiar. But it didn’t matter because she got a big wide glowing smile on her face. We hugged and I asked her if she wanted to go on a car ride to Madison Park Beach.

She said yes and we went to her room with an aide and got her dressed in a jacket and we went down to my car. When we got to my car she changed her mind about going in the car. I suggested a walk and then the coffee shop to finish. At the coffee shop, she got a coffee and a cinnamon roll. I cut up the cinnamon roll which she devoured with pleasure.

When we got back to Aegis, we went up to the 6th floor terrace and enjoyed the views for a few minutes. I found a Garth Brooks playlist on Apple Music and she sang with some of the lyrics. When I complimented her on her voice she smiled broadly again and said that she liked this music.

Then she abruptly got up and went back inside. I quickly followed her and asked her if anything was wrong. She said that she needed to go. We went back to her floor, and she went to the common area and sat down.

I did most of the talking and showed her pictures of my kids, my dogs, skiing and hiking. She seemed to be mildly interested and definitely perked up when she saw the pictures of my puppy Juni.

She didn’t speak much but she stayed present for most of our time together. She smiled a few times and laughed a little. When I asked her if she had any friends on the floor, I saw a spark of the old fire when she said,“No! They’re awful!” It was a glimmer of Lynne before Alzheimer’s.

The in person get together is so much better than seeing her on Zoom. She is declining so fast- it makes my heart hurt.

Lynne had an overnight visit with doctors at Swedish—Cherry Hill hospital Saturday and Sunday, June 19-20. These are my slightly edited texts I sent over the two days. When Lynne’s sister and I visited Lynne Saturday morning she was leaning significantly to her left, and seemed to have tremors in her left arm. The nurse examined her, then had medics come and they’ve now taken her to Swedish. Doctor has seen her, EKG looks ok, no blockages noted, right/left functioning balanced. They are continuing to run tests to determine why she’s leaning so much and why she’s had such a decline in the past 2 months. Dad is with her. Ok to send questions on this chain, it’s just family.

Doctors ran a CT scan of blood vessels in her upper body and drained her bladder. The CT scan and the urine tests were good. Doctors want an MRI as a final test for conclusive results with a brain scan. Doctor saw evidence of a minor stroke in her left brain in the back within the last 2 days, no more than week. That’s confusing because left side weakness would be caused by right side brain strokes. Doctors want to do more tests on her heart., etc., and have her stay overnight. She’s OK with that. They are contacting her neurologist office to consult with them. They see increased brain degeneration. [Lynne cheered up with me the final couple of hours when I was by her side. I fed her and she ate every bite. We talked and joked, and she talked with hospital staff. It was like she woke up from a nap. She was OK with me going home.]

Sunday morning a new neurologist saw Lynne. He doesn’t believe she had a stroke. He believed her leaning and weakness are normal for advanced Alzheimer’s and is recommending to the supervising physician she go home. Next step, he advised we review the clinical data with her primary care physician, neurologist and the medical staff at her assisted living.

The supervising physician carefully examined her vitals and movements and cleared her to go home. She wanted a shower first. The nurse admittedly said it began with cold water. Lynne was miffed. The paperwork is started. I told them I thought her sister could drive us home in my car even though it doesn’t have a siren. She was gleefully welcomed back. We’ve requested a review of her clinical records.

Her friend Donna visited her two days later on June 22nd and gave me permission to post her summary of her visit. Just visited Lynne. She seemed happy to see me. She was quiet but responsive to questions and laughed a little. We looked through her photo album and she seemed to enjoy that. I’d say she seemed much quieter and in an interior space than when I saw her a month ago.