This Insidious Dementia
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Traveling with a dementia parent to a place they know and love doesn’t always go the way you want it to. Our yearly trek to North Carolina ended up being very stressful for me and most likely for Mom as well.
As I am writing this, I am in the mountains of North Carolina thinking about my mom (more about her here), who had dementia, and our years down here. This is a story of how insidiously dementia affects the brain.
Back story
Many years ago, my mom and dad bought into a timeshare place in North Carolina. Yes, they got suckered into a presentation and gobbled it up hook, line and sinker! But I gotta tell ya, family members still enjoy going there. They sure picked a pretty place.
My Mom was born in Mississippi but from stories she told me, her family spent some time each year in the summer near Gatlinburg, TN. Mom LOVED the TN/NC area of the country. I think for her, it was like coming “home.”
Making Preparations
There were years that Mom and I came down here after Dad passed away and we didn’t have any problems. It wasn’t until she traveled further down the dementia road that taking longer road trips got harder.
As I was packing for our week stay in the mountains (about 7 years into her dementia journey), I gathered some things that I thought would be good to have along for mom. Paper, markers, tape, dry erase board, and a couple of night lights.
There are several floors in the units leading to either bedrooms, bathrooms or a laundry closet so I figured on making signs for the door ways to lessen her confusion. The dry erase board I used to tell her what day it was, what was planned that day and how much longer we were staying.
The night lights I used to light up the hallway and one for the bathroom in case she needed to get up during the night.
Reality
So, the signs, the lights and the dry erase board did help. But something happened that I wasn’t prepared for at all.
One year, after driving all day to get to NC, we pulled up to our assigned unit and unloaded the car. Shortly after grabbing a bite to eat, Mom asks, “When are we leaving?” I totally wasn’t prepared to answer that question and my off the cuff response was that we just drove 10 hours to get here & I’m not gonna turn around and drive back home. That answer wasn’t the right way to go about it. I tried to soothe her but she was clearly agitated.
I was so scared she was going to walk out of the unit sometime during the night or try to find my keys and drive away. I managed to hide my keys and purse that night. A quick text to my brother to call and talk to Mom helped sidetrack her for a while. Long enough to get her to bed that night. Thankfully, she settled in and was better the rest of the week.
The other year, mom and I got down there with 2 of my brothers due to arrive later that evening. They couldn’t get there fast enough as far as I was concerned because Mom started doing the same thing. She wanted to go home and was worrying about who was left behind. This was the time period when she was concerned about who was taking care of the baby.
This was the stuff that I wasn’t prepared for. I didn’t know how to respond in this kind of a situation.
Being on vacation, I didn’t have enough “tools” in my pocket to distract Mom. I didn’t have a photo album to pull out to distract her and she wasn’t interested in watching TV. It was getting dark so I didn’t really want to drive her around the property, plus I was afraid I wouldn’t be able to get her out of the car back into the unit.
Was this sundowners syndrome? It could have been. I don’t know. I wasn’t familiar enough with the term to know what to do at the time.
The fact that she was down in an area of the country that she’s always enjoyed apparently didn’t have any impact on her at that point. That’s just so sad.
This is just another example of how dementia so insidiously takes away the memories.
tips for traveling with people with dementia
Here are a few tips –
Plan
Recognize the signs of anxiety and agitation and know strategies to reduce them (which I obviously didn’t know or have any)
Plan some more and have a backup plan
Stick with the familiar (I did and see how that turned out!)
Be patient
Be ready with diversions
In my case, I had planned and I stuck with the familiar (it was a place that Mom had been to many times) but I wasn’t ready with the diversions.
Be Prepared
My advice to you fellow caregivers, is to be prepared if you’re traveling with a dementia parent or taking your loved one away from what is familiar.
Be ready with ways to divert or distract your loved one with dementia. Have a diversion ready that you can pull out and distract them to settle them down when the agitation starts.
Consider whether or not you think your loved one can handle it. Will they become agitated?
Do you or will you have someone else that can help you if your loved one does become agitated and you can’t settle them down?
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