Expecting the unexpected with dementia

While certainly my dad’s death did not come out of the blue, his sudden decline did catch my mom and I off guard. From most of the accounts I had read about Alzheimer’s, patients seemed to usually experience a slow, but steady decline. For my dad, his overall health took a nosedive over the course of just a few fateful days. He would never recover.

When you have a loved one suffering from dementia, you have to adjust your expectations greatly. While at the nursing home, my dad suffered from repeated falls and had to have a catheter placed because he was having difficult urinating, but he also had a great appetite and was fully ambulatory. He stayed in this fairly stable condition for several months, and mom and I adopted an uneasy new sense of “normal.”

The last photo of Dad and I together, July 2011.

There was finally an opening at an assisted living facility much closer to my parent’s home, so dad was to be transferred there on Nov. 1st. In mid-October, my mom went to see my dad and he bumped her as she was talking to one of the nurses. He was fairly alert and totally ambulatory. He had a doctor’s visit that day and did well there. My mom had lunch with my dad and he ate everything on his plate, and had some of mom’s food as well. She felt like it was one of the best visits she had with him in quite awhile.

On Oct. 26th, I had talked to the staff at the facility he had been at, to thank them for their care. I clearly remember the update the nurse gave me that day: Dad set off the alarm when he tried to leave the unit, but she was able to coax him to take a walk in the facility’s garden by giving him a lollipop. And he had a huge bowel movement that morning and they had to put him in the shower to clean him off. In the alternative world of Alzheimer’s, this is considered a good day. While the pessimist in me had doubts about the move, I held out a bit of hope that things would go well and mom would get to visit dad more, which would have meant so much to her.

But alas, it was not meant to be. On the day he was transferred, my mom and the director of the facility he was being moved to went to pick him up. He was asleep, more like knocked out, and had to be helped into the van. He supposedly had a bladder infection, and then was diagnosed with pneumonia. He spent the last two months of his life almost exclusively in the hospital. If there is one thing that this disease taught me, it’s to expect the unexpected around any corner.