Pick Your Battles

FTD can be seen as an "umbrella" of dementia's -- all affecting the frontotemporal lobe, but with slight variations.  For Mom and Nanny, theirs' started out with Primary Progressive Aphasia-- and therefore effected their speech first.

For others, their speech may be fluent at first, but behavior is impacted.

The below story is not about my mom, but I felt it was worth sharing.  Someone on my online support group posted it the other day and so I am following suit and pasting it here.  It originated from the AFTD newsletter.

Bottom line -- regardless of what variation of FTD or Alzheimer's other another dementia - our loved ones are still there...just be patient, they are there.....

Pick Your Battles

by Susan Eissler

I was in an MRI waiting room in San Francisco and noticed a couple across the way. I said to myself: "That man has FTD!" I couldn't tell by looking at the man, but I noticed by the way the wife was behaving. Her body language showed her to be "mother" rather than "spouse," even though they were the same age. She was alert, on duty: he was totally relaxed. I saw myself in her.

Gradually, we caregivers take charge. Part of the stress is that all our waking hours are spent guiding and protecting. But one of the many lessons I learned was to "pick my battles."

My husband Bill had a focus in life: to help others...to reach out and uplift people. His mantra was: "It's not a problem, it's an opportunity."  His favorite activity, from the onset of FTD symptoms, was to hand out amusing and inspiring stories he had copied from the Internet or from the small magazine called Bits and Pieces. In itself, that was a good activity.  But the aggravating part was that he handed these out EVERYWHERE we went to EVERYONE we met. In the beginning, I was embarrassed and sought to thwart him at every turn. At one point, we were going to a fancy cocktail party, and he wanted to carry his briefcase around so he would have plenty of copies! But gradually I backed off because I realized that this activity brought him much satisfaction and that no one was offended or embarrassed except me.

I learned to relax and let him "do his thing," unless it would have been disruptive. "Disruptive" was wanting to hand the priest a story as we entered church at the last minute and the procession was beginning down the aisle. "Disruptive" was walking the third time around a high school track and wanting to stop the SAME person again for an encouraging word. "Questionable" was handing the security agents at the airport a photo of a large very orange orangutan instead of a photo ID, when the sign clearly said "No jokes please!" (I was positively mellowing at this point.)

Every day, Bill went to the grocery store and every day he brought his latest story to present to Frank the butcher. It didn't matter if Frank was up to his elbows in fat and gristle, Bill would have gone right in through the employee only doors. But the staff knew his routine, so they would alert Frank that Bill had arrived. Frank would come out, patiently listen to the story and take the time to enjoy it with Bill. On Memorial Day, Frank gave Bill a card with a note that read: "Dear Bill--It's a rare privilege when two people with different backgrounds can find and enjoy similar passions. Thanks for your trivia. Good luck and God speed. --Frank"

Another time, we were in a restaurant for breakfast. The place was packed. The waitresses were stressed. Finally, a waitress came over to take our order. (I tensed up--busy waitress--Bill will want to share his story...) Bill handed her the story and explained that it was hers to keep.  She thanked him and took our order. Later, while we were eating, she came out and threw her arms around him. She said she had been having the worst day ever and that he had made her day with his wonderful story.

We say that FTD takes away the humanity from a person in many ways. But Bill struggled to make the world a better place until the very end. I just had to learn to let go and pick my battles. In the end, that blessed us both.