Driving Miss Donnie: How to survive a road trip with someone with dementia

I wrote this blog a year ago when my mom and I did something we’d done our whole lives: We took a road trip to Idaho. I had no idea when we did it, that it would be our last. I’m so grateful for these memories. 

senior-headphone-stuffed-animal

I’m just back from a four day road trip with my slightly demented and partially deaf mother. Think Thelma and Louise with a Perry Como soundtrack. It was a wonderful/memorable/trying trip and here are the things I learned from it.

  1. Plan ahead. This was a trip for her to see her remaining friends and family for possibly the last time. I called ahead and made sure everyone was in town and we were able to see them all, plus visit the old towns, houses and farms of her childhood.
  2. Ask for support. I asked my Facebook friends to pray for safety and patience. This really helped because the conversation went something like this for 900 miles: Mom: “Would you like a root beer candy?” Me: “No Thank you.” Mom: “Huh?” Me: “NO THANK YOU.” Ten minutes later: Mom, “Would you like a root beer candy?” Me: “No thank you.” Mom: “Huh?” Me: “NO THANK YOU”…
  3. Take this opportunity to find out all the wonderful family stories and juicy bits of dirt. When talking about the past my mom is very lucid. I kept her talking most of the way there, to avoid the root beer candy question. I learned lots of lots of great family history now have it memorized after hearing each story at least ten times.
  4. Be sure to plan a part of the trip that is fun for you too! I planned an overnight with an old friend and I also set aside an hour for book research. It really helped to break up all the visiting.
  5. Be prepared to think of this trip as a labor of love. When I kept my mind in this frame of reference, I did well. When I let down my guard and say, wanted to check my email at night and got interrupted every two minutes, Oscar the Grouch came out. Oops, the expression “labor-of-love” is just that: hard work.
  6. Be amazed at the stories people tell. As we visited the relatives and friends, much reminiscing about “the good old days” happened. I felt like I had a front row seat in history. The hard part was that for some, the past was about all they had left to enjoy. Let me tell you, leaving each person we visited was painful. The hard truth that we probably won’t see most of them again.
  7. Pay attention to who fares better. My mom’s family is made up of two kinds of people: Mormons and Jack Mormons. Jacks are people who don’t want to be Mormon’s, mostly because they like to raise hell and drink a lot; at least it seemed to work out that way in our family. I’m not a Mormon but I can attest to the fact that on this visit, the Mormon’s were physically and mentally stronger. Something to be said for clean living!
  8. The “second childhood” thing can be rather enduring. My mom enjoyed finding pictures in the clouds and surprising me by putting on funny sunglasses when I wasn’t looking. A  magic moment occurred during the overnight at my friend’s when the lights went out in her room and the ceiling glowed with stars. She was thrilled.
  9. Bring some old music to make the trip shorter – and a great book. On the way home, mom started cleaning out her glove box. There she found two treasures: her car manual, which provided hours of good reading because when she got to the end, she’d forgotten the beginning and started over, saying “I didn’t know I had a rear defroster!” Second, she realized she had a built in CD player loaded with music! We were serenaded by Perry Como, Elvis and The Sons of the Pioneers all the way home, which was a nice break from talking.
  10. Cherish the memory you made. I learned more from this trip than I ever thought possible. We pulled some long days and my mom never complained once. At every home we visited she was warm, affirming and loving. This is the Mommy I’ve forgotten, the one I missed during the busy years, and the one I rarely see at our weekly lunches because it’s a predictable environment. But four days trapped in a car with someone shows you who they really are, and I loved getting re-acquainted with this Mama. What a wonderful gift. Tomorrow I present her with a photo book full of the pictures we took along the way. I can’t wait.
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2 Comments

  1. I remember the last road trip with my mom. We went to a family wedding in Hawaii. We knew ahead of time that this would be a labor of love (and Mom’s last big trip) but we thought some family members might consider helping. Wrong. It was a lot of work but in the end I think Mom loved it. The airlines, however, lost all information about the special help we would need. At the time Mom could not walk and even sitting would tend to fall to one side. The airlines finally did help and lifted her into the middle seat. (Placing her in an isle seat would have meant falling into the isle.) The one thing we couldn’t figure out was how to get her to the restroom during the long fight. She made it-just barely. I think a “Depends” on a long flight would have been a big help. We were very fortunate to have had a friend on Maui whose wife used to be disabled. He knew where to go and pointed us in the right direction and that enabled us to take several day trips and find restaurants that were wheel chair friendly. The other thing that really made a difference were strangers offering to help. People from out of no where lifted Mom, wheel chair and all over rocks and onto the beach for the wedding. Bathing was a challenge and my spouse went to a Costco on the other side of the island to get a plastic chair for the tub. (There were no handicapped facilities where we stayed and we almost left the apartment for a hotel with a handicapped room. Actually that would have been better in retrospect.) I learned a lot on that trip.

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    • Wow, what a great memory though! I bet she loved it. And now you have compassion for those in the same straights.

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