Saturday, August 22, 2009

A Crash Course In Travel

Regret was chief among the myriad of emotions that flowed through me when my mother was diagnosed. There were places she had longed to see her entire life and I was determined to take her to them before her disease progressed. One of those places marched to the forefront of my mind - The Baseball Hall of Fame in Cooperstown, NY. It seemed like the perfect first trip - close enough to home if there were any issues / far enough to feel like a special vacation.

So about three months after she was released from the hospital, we arrived at the Inn where we planned to stay three nights…just as Ma was sundowning.* She walked into her room across the hall from us and instantly had a panicked reaction.

“This place is strange. I feel funny here. I don’t like this room.”

Being the novice that I was (and still am to some degree), I became terribly alarmed. I practically ran to the front desk, explained my mother’s condition, and asked if we could view other rooms to see where she might feel more comfortable. Instead of having her relax for a bit which would have been the most beneficial, I, in my own panicked state, traipsed her from room to room. I couldn’t even stop long enough to listen to Dan who was trying to get me to calm down. Mom couldn’t decide on a new room of course so I picked another that seemed “prettier.” She laid down to rest.

“Dan, what are we going to do?” I asked, crying. “We can’t stay here for three nights. This was a HUGE mistake! I have to tell the front desk we need to leave in the morning.”

“Honey, let’s think this through a minute. We know she is sundowning and she is exhausted. Let’s wait until after supper and see how she is then.”

I stopped to ruminate over that…my mind viewing the next three days through a cloudy crystal ball.

“No, we have to get out of here as soon as possible…” I shot from his arms and headed back to the front desk.

“Wait a second, hon…”

“No I can’t! This is all wrong. This isn’t going to work!” I had to fix this, to get things in order immediately. I needed to squelch the rising need to vomit by taking prompt action.

When we headed out for supper an hour later, my mother was calm and in good spirits. We ate a lovely meal and she and Dan were laughing and exclaiming over the food while I watched her every move like a starved hawk searching for prey. There was nothing to see. She was better, no doubt about it.

The Inn-keeper had been so gracious that I didn’t feel right changing our plans again. We enjoyed that one wonderful day at the Baseball Hall of Fame where my mother read old letters and contracts, viewed memorabilia, and marveled over details about her favorite players.

As we headed home after that one night, my mother said, “This was nice...”

Dan looked over at me, smiled and squeezed my hand.

“...but I’m tired now and want to go home.”

That trip was a crash course in travel with my mother who has dementia. Within two days, she had no memory of having been to the Baseball Hall of Fame. I realized, then, that there was no rush or even any reason to take her to the places she had wanted to visit in her lifetime.

*‘Sundowning is a phenomenon unique to Alzheimer's disease where the person becomes more confused and agitated in the late afternoon and early evening.’ http://alzheimers.about.com/od/caregiving/qt/sundowning.htm

2 comments:

  1. Lisa, I have been reading for your blog for a few days. Thank you for sharing your experiences so beautifully!
    My mother-in-law was just diagnosed with early stage Alzheimer's. We noticed the sundowning phenomenon before she was diagnosed. We did not know what it was then, of course. It should be better publized as one of the early symptoms.

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  2. Thank you for commenting and you are welcome! I am sorry your family has been touched by this disease. I won't mislead you and say the road is anything but difficult. Going to a caregiver's group has been so helpful to me. I learned techniques, signs to watch for, etc. Here are a couple of links that might help you find a group in your area. Also, I would suggest either of the two books to the right of the blog. SO insightful! Good luck and please feel free to email me with any questions or if you just want to vent :-) lisajgurney@gmail.com

    http://www.caregiver.com/regionalresources/index.htm

    http://www.alz.org/index.asp

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