Tuesday, July 29, 2014

Dad's Existential Question Cycle

Question Cycle Booklet
Photo by Pam Stephan
Dad has been living with dementia for at least 8 years now. He has an awareness of his loss of memory and it does bother him. Before he retired, Dad worked as a civil engineer, doing highway design. That means math - lots of numbers: calculations, formulas, checking and rechecking. He worked on interchanges, overpasses, underpasses, on-ramps, off-ramps, frontage roads, easements, drainage plans, damage and repair estimates.

Dad lived by numbers. He was my math coach, my domino teacher, the one who introduced me to geometry and the man who taught me to sharpen my pencil with a pocketknife and an emery board. Dad did beautiful drafting work, precisely done to scale, long before computer-aided design. His handwriting reflected his early training, squared off and almost as consistent as a typeface. Dad appreciated mathematical accuracy! He was somewhat disappointed that I struggled with all flavors and varieties of math and was upset when I actually flunked Algebra 2 in high school.

Eight years ago, when Dad moved in with us, he could still reel off the value of Pi out to 13 places past the decimal point. He knew the address of all the houses he had built. While at my house, he could tell that he was not in Ft. Worth - where he and Mom had lived for 75 years. He liked to keep his checkbook register and read his calendar for upcoming events. When he flipped through a photo album, he easily named people in the pictures and even told me a bit about them.

Three years ago, my father started asking a set of repeated questions. It is a common symptom of dementia's progression and suggests a decline in his frontal lobe function. That's  the clinical explanation. Let me give you the down-home, boots-on-the-ground side of the story. As Dad's memory fades, he can no longer identify Mom in old photos or even in more recent photos. We went through many old albums before we found one that he recognized and it went back to 1946 - about the year they met! Even so, he could not remember her name! Why is that so major? Because she is the person he misses every day, all day long. These days, he isn't always sure if he is at his house in Ft. Worth, or at my house, 250 miles away. Often when he asks me where we are, I just reply, "We're at Home." He can't tell you his address. He can't manage his checkbook. He can't remember how to sign his name some days, other days he does just fine. This feels very weird to him. The person that he is, at his very core, knows that some serious deterioration is going on, but can't explain it, because of the memory loss.

Dad's Question Cycle Booklet

He has developed a set of existential questions, which he cycles through many times each day. It is very like a ritual, in that he almost always repeats his questions in the same order. These repeated questions address the basic facts of his new life in my house. Dad's question cycle is so reliable that my sister Phyllis and I collaborated on a small booklet that he can flip through to get his answers. I update the book as needed, or when it becomes tattered and stained.

Right now, the booklet cover 6 questions. Dad usually finds some reassurance and comfort from flipping through the book, but sometimes it upsets him. That's when I resort to distraction and redirection. They tell me that magicians use those same techniques. I don't have the makings of a great magician, but we can usually break the cycle if I try hard enough.

I came up with the order of his questions by carefully listening to him go through the cycle. Once I had memorized his routine, I wrote up the answers - one per page - and made up the booklet. Here's how it reads:
  • We are in (Pam's city). You have been here 8 years.
  • Mom passed away 9 years ago in Ft. Worth.
  • Phyllis was with you when Mom passed away in Ft. Worth.
  • Pam read Mom's obit in the paper 1 year after she passed.
  • You cleaned out the house in Ft. Worth and moved in with Pam 8 years ago.
  • You sold the Ft. Worth house 1 year ago. Your stuff is moved in to Pam's house.
Most dementia caregiving websites I read up on suggest that a caregiver keep their answers short, sweet, and relative - not specific, not numerical, not depressing or sad. I tried that. Yup, but in Dad's case, that didn't help. He is still a Numbers Guy. For him, comfort and reassurance comes from having the numbers clearly stated. He likes to say that he is a realist and he wants accurate answers.

Having a Memory Flash

On good days, after he has eaten well, played dominoes well (that means winning), been useful, and feels very secure, guess what? He will sometimes recite the Answers to me - instead of the Questions! Dad will actually tell me whole story, in order, with accurate numbers. We have recited his question cycle so many times, and it means so much to him, that somewhere in his brain, a copy of the Question Cycle Booklet exists!

Just hearing him do that once in a while makes me feel like I have done some good. Being a consistent caregiver takes commitment, and patience, and creativity. Sometimes it also takes a good cry alone behind a door. But when a Good Day comes along, it makes the clouds roll away and both our hearts are content. At least for a while, and that's enough to treasure.