Caregiving Pivot #3 – The Last Normal Year
This is the third of a series of stories about the turning points that reshaped my life as a caregiver.
When Normal Still Felt Normal
Normal is a strange word in dementia. After the memory testing, life still looked and felt like the life we already knew. We had a diagnosis — vascular dementia or Alzheimer’s — but nothing felt urgent. His sisters had Alzheimer’s, so accepting the possibility felt almost familiar. My husband Uno understood what was happening. He didn’t like it, but he didn’t fall into despair. He was still himself, and that steadiness made me believe we had time.
A Tender Trip to New York
After receiving the testing results, we headed to visit his sister in New York. Niagara Falls was pretty cool to visit on our way. Lots of people, but a big place to roam, explore, and be in nature. Comforting. His sister was in a nursing home, and her husband visited her every day with a devotion that stayed with me. Uno brought his guitar, and when we sang for her, she lit up. I am sure we sang “Quiet My Soul,” “Here I Am” and “Amazing Grace.” Her husband said he hadn’t seen her that bright in a long time. On the trip I remember repeating things, reminding him of details, but it wasn’t unpleasant. My brother‑in‑law didn’t notice anything unusual, and I let myself believe maybe things weren’t so bad.
A Year Full Of Life
Looking back, we did so many normal things that year — camping, family gatherings, long drives, even a 2½‑week trip to Finland to meet relatives we’d first connected with in 2016. We drove to California and spent a week with my brother, visited a cousin, and kept up with our usual rhythms. Driving still felt normal — 2,000 miles in three days requires two drivers. Even the house remodel didn’t feel too difficult. It even felt normal.
Arizona became our winter rhythm. In 2018 we had spent a month in a condo and then moved to a casita for two more. Evenings on the western‑facing patio became our ritual — watching the sun drop behind the ridge, talking about nothing urgent. Life felt familiar and steady. So when 2019 came, returning to that same ridgetop casita felt like choosing comfort.
In 2019 the plan was to stay two months; we stayed away almost four. Our house was being renovated, and honestly, it was easier not to be there. I worked full time from the casita’s second bedroom, juggling hotspot limits and hoping the connection held. I worked full‑time on an East Coast contract while living on Pacific time, up early and done by mid‑afternoon. Uno helped the owner, visited friends, picked rocks, and went places with people he knew. We played music together often, with my keyboard and his two guitars.
We flew home twice and navigated the airports easily. I booked first class when I could, and he loved the extra space and the calm of being first in line. It all looked normal. But underneath, the new normal was already forming — quietly, steadily, one small adjustment at a time.
Learning New Patterns
Memory changes were there, but subtle. I learned how to respond differently, to stay steady when things felt slightly off. I practiced how to:
• affirm his feelings
• redirect gently to avoid disagreements
• think ahead so small things didn’t become big things
• repeat myself with a practiced, cheerful voice — sometimes three or four times.
At the time, I didn’t call it caregiving. I thought I was just being patient.
The New Normal
That’s when normal keeps shifting, but you don’t always recognize it happening. No drama. No panic. Just a year of breathing, living, and being thankful for each other. Waiting for the next shoe to drop but not feeling like it was imminent. A gift. A year. The early stages met with the quiet, steady rhythm of daily life. When I look back, it was a quieter year, yet so much had really changed. Those early days weren’t too bad. In fact, they were still good. We didn’t know yet what 2020 would bring.
If you’d like to know why I’m sharing these caregiving stories, you can read the heart behind it here: Why Write About Caregiving.
If you know a caregiver, or someone who loves one, you’re welcome to share this. The New Normal can be hard to describe, and sometimes a simple story helps someone see their own.