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On the road with Alzheimer’s

On the road with Alzheimer’s


Carol Noren Johnson of Florida has been writing an inspiring, personal and compelling blog about caregiving for her husband with Alzheimer’s, who recently passed; here is a post from a road trip they took last year.

“When you travel with them, you notice more how the disease is affecting your loved one.”

We headed north to visit my younger brother, the rocket scientist, his wife and his extended family in Huntsville, Alabama. We rented a car because it didn’t make sense to use our gas guzzler which has over 200,000 miles now. The trip can take only one day, but with an Alzheimer’s husband who would be impatient I drove a day and a half each way staying at a hotel each leg of the trip.

I went to Avis to arrange for the car. Priceline had reserved a $12 a day car for us. You could fit one piece of luggage in the $12 car and so we were upgraded to a more expensive car ($35 a day)–a Ford Taurus. It took some adjustment for me to use this car, but even my husband liked it. For example, I didn’t know how to turn the volume down at first on the trip to Huntsville and how to plug in my iPhone for our playlists. When it came to buying gas, I had to have help.

On the way to Huntsville I entertained my hubby by asking him to shell peanuts for me. We also talked and I was able to use playlists on my iPhone. On the return trip, however, I knew how to turn the volume down and use the plug in for the iPhone thanks to the smarts of my sister-in-law. We listened to a variety of music on the radio and on my playlists, and talked repeatedly about our dog Ziggy. I let my husband choose the subject of conversation because it works out the best this way and I don’t get his comments–Carol, you aren’t making sense.

While at my brother and sister-in-law’s home, we also spent three evenings with my niece and nephew and their families including three delightful children. We went to Unclaimed Baggage in Scottsborough where I spent a total of $10.44 on a dress and a scarf. We saw the movie “Quartet”.

Hubby had many repeated questions for me while we were gone:

Are we in a hotel? (We stayed at my brother’s home.)
What are we doing here?
Is our dog in the kennel?
What does our home look like?
When are we going home?

Questions such as these, asked over and over, are pretty standard for this stage of Alzheimer’s, and hubby didn’t have his printed schedule on the trip, because he would be with me and I wasn’t sure what would happen each day.

I let my husband choose the subject of conversation because it works out the best this way.

Hubby lost his cell phone at a mall and security did see a local relative to call, my sister-in-law, called her and my brother went to get that cell phone. On the trip back home while I stopped at McDonalds to get hubby to take his pills with food, I went to the rental car to get something and hubby forgot where I was. He used his cell phone to call me, getting my sister-in-law instead of me. She told him I must be around there somewhere. He must just press TALK when he calls me and usually I am the last number, although this time it was the sister-in-law.

At my brother’s home I made hubby’s coconut oil/dark chocolate fudge and I realize it does calm him down. I just packed coconut oil, dark chocolate and two ice cube trays and then made it at our destination as I have described on this blog.

As we traveled in Alabama I noticed signs of recession, with shops closed. However new Dollar General appeared in small towns along HYW 231.

Other changes. The price of gas dropped 20 cents as we entered Alabama. On the way home it was even 2 cents lower than that until we got to Florida. None of this phased hubby. Place as well as time has less meaning for him. Alabama has radio and signs protecting drivers from distracted driving such as texting while driving, whereas Florida’s signs emphasize the “Move Over Law” protecting officers parked by the side of the road.

Highlights of the trip included relaxed time chatting with family, going to church, beating my rocket scientist brother at Checkers at Cracker Barrel restaurant, and having raps videotaped by the niece and nephew who say they are putting it on YouTube under a rapper name they have chosen for me.

Hubby seems very contented at home now. Things are predictable to him and hubby is more predictable to me. I’m so glad I got to see family and that we took this trip.”

Carol Noren Johnson has been a school teacher and writer and most recently has taken care of her husband who passed away June 23, 2014. They tried to live their life as normally as they could, including taking trips and camping.  She continues to blog at where she recorded her caregiving experiences with her husband who was diagnosed with Mixed Dementia. 

This lovely woman, Gay Finkelman, sent us this great note:

Thanks Carol Johnson for the warm and informational write up about your trip with your husband last year prior to his death. You are providing such a great service to loved ones having to experience these Alzheimer’s behaviors. Your candor and devotion to being a helpful partner is refreshing and helps prepare spousal caregivers when the time may come for them to deal with day to day issues. God bless you.

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