Traveling With a Dementia Loved One

Sunday dinner after church
with brother, hubby
and Kenny pictured at
Grandmother's House
Restaurant in
Owens Crossing, AL

Kenny, hubby and myself went to northern Alabama to visit my brother and his family. We started out on a Saturday, March 7th, with Kenny sharing the driving and the load of caregiving for my husband and came back on Thursday, yesterday. This year we drove straight through both days. In March of 2013 my husband and I made it a two-day trip each way. See HERE. We didn't know Kenny then, and hubby had not gone downhill as much as this March.

We woke in our own bed this morning. I started unpacking suitcases. What are those suitcases for? hubby wanted to know. He had forgotten about our trip.

Freshly groomed dog

We just got back from being at my brother's house in Alabama, was my reply. Hubby got a quizzical look on his face. Later today we picked up our dog from the kennel.

Wear and Tear on Hubby. While this trip was wonderful for me, it was hard on hubby. He had a calendar with the daily events on it, but let me know I didn't make sense. At times he was angry with me, but I have learned to stay calm. Bathroom issues came up--where was it and would he get there in time. This was not his home, the place he is used to. However, my brother and sister-in-law's home does have a convenient elevator that was so useful for my husband. He did fall Sunday morning, but was okay when Kenny and my brother got him up from the garden.

Family. I had a couple of goals for my time away. First and foremost I wanted to enjoy my family, and that did happen. Who knows when I will be able to see them again? Several nights my niece and nephew came over to my brother's home along with their families.  Kenny interacted seamlessly with my family who really came to appreciate him.

Activities. At times Kenny stayed with my husband while I did things with my family. Kenny stayed with hubby while I heard a special violin concert by a four-year-old, daughter of my niece and her husband. Another highlight was hearing my nephew teach an adult class Wednesday night at his church while Kenny was with my husband.  One day  Kenny went off sight-seeing with our car, and hubby missed Kenny. I was able to get a lot of sewing done that day. I wanted to be able to sew on a quilt of my husband's grandchild's and I was able to finish the patched front side with my sister-in-law's sewing machine. My time at home is so limited and getting to sew on an important project was such a delight. When this quilt is done, I will post in here.

YouTube Raps. This is the niece and nephew that made me MC AC The Rap Lady on YouTube. My nephew recorded three more of my raps while I was there, and my niece showed me how to use iMovie to post raps on You Tube. Together we posted "Cell Phones". Now the ball is in my court to put up more raps. It will be hard work, but my niece and nephew really do not have time to do this. I have the computer now that has iMovie. Can an old lady such as myself learn iMovie?! Hope so!

Honor. Early in the time away on my iPhone email I realized that my book, Getting Off the Niceness Treadmill, had been reviewed by a favorite author, Aimee Byrd, HERE. What an honor! I posted posts of her book on my theological blog earlier.

New Fellowship. A special highlight of the trip was the fellowship I had in a ladies Sunday School class at my brother's church. The teacher had read my book and the ladies wanted to hear me rap as I had last March! I did that and essentially the leader let me teach the class. I did have Scriptures ready. I shared prayer requests for my husband, my dissertation on caregiving and the rapping channel. Then they shared prayer requests with me. We will keep up with one another. Tuesday morning while Kenny was with hubby, my sister-in-law and I had breakfast with most of those ladies (there are seven in all whose prayer requests I have added to my prayers). Then my sister-in-law and I went to an estate sale where I found a bird house for Jake's collection.

Prayer. Pray for Kenny as he has medical issues coming up. Pray for my other sister-in-law in California who had surgery today. Prayer is such a special privilege and I am excited to have seven ladies in Alabama who now pray for my requests in their southern accepts and MC AC prays for them as well.

Road Trip With an Alzheimer's Husband



Road trip with an Alzheimer's loved one.  

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.

Our dog was dropped off at a kennel and Sally and Jake took us to Avis at the Tampa International Airport. When I was not visible to my husband while he was watching our luggage, it was great to have our friends with him. 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:

1. Are we in a hotel? (We stayed at my brother's home.)
2. What are we doing here?
3. Is our dog in the kennel?
4. What does our home look like?
5. 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.

My rocket scientist brother works for a subcontractor at the large Redstone Arsenal and on Saturday he took us to see the nicknamed "Pentagon South" building he is moving into. We had to show IDs to get through the gate to the Arsenal and hubby and I handed my brother our driver's licenses. When It came time to get give our IDs at the gate, my brother could not find the driver's licenses with a thorough search of the car. Now hubby is so good at putting things away. Finally hubby checked his wallet and sure enough both of our driver's licenses were here! We all laughed including hubby, who still has his license for identification but chooes not to drive any more.  

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 MacDonalds 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.



Not open

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.



Alabama Choleus, herbs, Breathless Blush Euyphorbia, and Hot Water Ble Lobelia

One place that was not closed was Pat's Secret Garden in North Ozark, Alabama. I have noticed and stopped at this garden shop for years on my travels to Alabama from Florida and it didn't show signs of slowing down at all and I bought the above plants. Pat herself told me to put the plants I purchased in the trunk and a day later when we arrived home they were fine, ready for my areas 8 and 9 projects at our home. Pat has a secret garden open April 15th to May 24th in case you are in the neighborhood.

Getting home we first picked up the dog, drove home and unpacked. Sally and Jake came over. Jake spent time with hubby while Sally followed me to the airport to turn in my Priceline "bargain" rental that totaled $344 including taxes and other charges for six days; then Sally brought me home while we talked for the whole ride about our husbands and the past six days we both experienced.  

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. So glad I got to see family and that we took this trip.

Kinds of Memory, Christmas Travel and Home

A day before we left on our trip hubby and I were at Cracker Barrel, the restaurant/gift shop. We are seated. DH excuses himself to go to the bathroom. He isn't coming back to our table at Cracker Barrel. I go looking for him. He thought I was shopping. I bring him to the table. He is surprise that we had been seated. He doesn't remember.

DH recalls going up in a plane with Jake. I do not recall that, but have heard both DH and Jake discuss their plane trip. How do two Alzheimer's men have the same memory that Sally and I know never happened?!

Both men see that the other one is going downhill.

“Time is change; we measure its passage by how much things alter.”― Nadine Gordime

If you have Alzheimer's. however, time is so present and memories are so fickle and subjective. There may be a few recent memories, but not accurate short-term ones. Long-term memories start to become fuzzy.

I do capitalize on recent memories when I tell hubby that it is 7 am or 7 pm and time to take our pills: Sweetheart, you wouldn't want me to take your pills like I did when I landed in the hospital, so let's both take our pills NOW.

For the Christmas week we had the pleasure of flying to his son's home in another state, and enjoying family and their extended family including two great grandchildren. I became my husband's one constant as we were away from home. He even asked his own son who that son's mother is, forgetting that she is hubby's first wife.

I made daily sheets for him to remind him of what was happening and to let him know when we would be returning to Plant City, Florida. Even so he needed many reassurances from me. Sally and Jake took us to the airport and they would pick us up from the airport,

One morning on our trip he woke me asking Where is here? I explained that we were at his son's home. Although he became somewhat oriented to the lovely three story home where we stayed and he had often been before, he forgot that we had a bed and bathroom in the basement.

He said he would go downstairs.

"No, sweetheart, you need to go upstairs," I reminded him.

When he was on the third story watching TV with his son in the media room, he called me on my cell phone to see if I was anywhere around.

"I am right below you--the next story down," I reminded him. Often DH then responds that he is just checking to see if I am kicking and breathing. He wants to find out if I am kicking and breathing at our own home as well.

We heard a noise in the middle of the night and I remarked that I didn't know what it was. He said it was just the noise of an elevator. Now there was no elevator in the three story home where we were staying--but I didn't correct him.

On the trip we had wonderful hospitality and all the comforts of home. I gave DH a daily schedule and kept his clothes and toiletries where he could easily find them. But for DH, it wasn't home, confirming that Alzheimer's patients are so dependent on their spouse/caregiver and their own home.

Alzheimer's Husband Travels by Himself

Hubby wanted to know again and again if I would take him to the airport and if I would pick him up. Repeatedly he wanted to be assured of this and repeatedly he noted how he would miss me. Of course I would miss him as well, but my family had arranged a cruise for me as respite time and DH was to visit his son and family out of state and meet his two new great grandsons (ticket thoughtfully paid for by his son). That son would drive several hours to an airport so that his father wouldn't have to transfer planes.

Yesterday hubby wanted to go with me on errands. The Alzheimer's loved one always wants to be with us.

"But the lawn isn't mowed," I reminded him. Now hubby will always try to arrange it to be with me, and has a tendency to put off mowing the lawn.

"I don't have any gas for the riding lawn mower," he objects.

I show him where there are other gas cans full of gas and I leave on my errands. He calls me on my cell to again say there is no gas so he can't mow. I tell him again where the gas cans are. He calls me on my cell to say I don't have to come home, because he found out there is plenty of gas. Sure enough when I get home the front yard is mowed and half of the back yard as well. The job that he has conveniently put off is 2/3 finished.

It was his turn to pray last night when we went to bed and he holds my hand tight. Thank you, LORD,  for this wonderful opportunity of our vacations. I often remind him of things to pray about, although he amazes me when he prays--how grateful he is and what he does remember.

Ready to fly today. Ziggy, our dog, is ready for his vacation also, only he thinks in his canine mind that he will go with us as he did when we camped on Memorial Day weekend. He is dropped off at the kennel.

We get to the airport ahead of time to arrange my walking him to the door of the plane. See here. Hubby and I have lunch at TGIF (not at all sure of the Weight Watcher points in a Cobb salad). We proceed through the security check points, me with my prearranged pass printed today easily because I had made that trip to the airport. I got body searched because of the wire on my bra, but somehow they didn't notice the sharp knife in my purse that I had gotten for free at Sams last week.

When hubby is ready to board, I give him a kiss and later text him (he may not know how to retreive the text). His cell is turned off. There is a picture of our dog, Ziggy, on his cell, which I think he will look at and then maybe retrieve the text.

It felt like I was a parent sending a child off to college. I knew the trip would be great and he could be with his family and meet two great grandchildren he has yet to meet. But I needed to pray more.

I went to the airport chapel and commited this week apart to the LORD. I know that the break for me is much needed, even though my husband doesn't understand respite time and we have only called it our vacations arranged by thoughtful family. LORD, help me not gain 10 pounds on my cruise. It is so hard to lose when you are older.

Just before posting this his son called to say that DH has safely arrived, minus his shaving cream which was confiscated. Thank you, LORD. Now it is time for me to finish packing for my cruise with my sister-in-law.

Here are links on traveling and dementia patients:

Taking Trips

Traveling with Dementia

Ask Alex: The Automated Answer Lady at United

Talking to United Airlines is like talking to a hubby with dementia. You have to repeat things often. As a couple we minimize this by having a clipboard list of the day's events, but when we are out and about hubby asks repeatedly where we are going. I am very patient. It is not his fault.

However, when I brought the following United Airlines dialogue on the Internet to my Alzheimer's Association support group yesterday, we were all in stitches. The dialogue has been edited to take the United Airlines links out and I have put some of my dialogue with the pictured lady Alex in red.

Alex: Hi, I'm Alex, your united.com guide. I've been designed to make your time on our website as fast and efficient as possible. Just type in a question, keyword or phrase below and I'll take you to the information you're looking for.

You Asked: My husband has stage one Alzheimer . .

Alex: I'm not sure I understand, please try rewording your question.

You Asked: Can I walk my husband to the door of the plane because he has beginning dementia?

Alex: I'm not sure I understand, please try rewording your question.

You Asked: Where do I call to get my question answered?

Alex: I can answer many questions about reservations, but you can find additional contact information when you select the appropriate topic on this Web page. View Page

Here's More:

Contact Reservations

Contact United Customer Care

Contact MileagePlus by mail or phone

Baggage Resolution Service Center

You Asked: Contact United Customer Care

Alex: If you would like to provide feedback on a recent travel experience, use the form on this Web page. If you would like to contact United regarding future flight reservations, select the Contact Us link below. View Page

Here's More:

Contact us

You Asked: Contact United Customer Care

Alex: If you would like to provide feedback on a recent travel experience, use the form on this Web page. If you would like to contact United regarding future flight reservations, select the Contact Us link below. View Page

Here's More:

Contact us

You Asked: This has not been helpful, Alex

Alex: I'm sorry that I'm having trouble answering your questions.

Here's More:

Contact us

You Asked: I need to walk my husband to the plane door.

Alex: I'm not sure I understand, please try rewording your question.

You Asked: After the security check, I am not sure he actually will get on the plane. Please provide information on an assistant.

Alex: The Transportation Security Administration, U.S. Customs and Border Protection and the Department of Homeland Security work together to ensure the safety of customers, civilians and the United States as a whole. To view regulations and procedures specific to these agencies, please follow the links below.

Here's More:

Transportation Security Administration

U.S. Customs and Border Protection

Department of Homeland Security

You Asked: This is not my question. I need medical information.

Alex: I'm not sure how to answer that. I understand simple questions best, can you try asking that in a different way?

You Asked: Help! My husband might get lost flying by himself.

Alex: I am not positive that I understand what you are asking, please try rewording your question.

You Asked: Whom can I call?

Alex: I can answer many questions about reservations, but you can find additional contact information when you select the appropriate topic on this Web page.

You Asked: phone number needed

Alex: I can answer many questions about reservations, but you can find additional contact information when you select the appropriate topic on this Web page. View Page

You Asked: I have been trying to do that. My husband has dementia and I want to walk him beyond the security gate to the point where he actually boards the plane.

Alex: There's more than one answer to your question. Please select the topic below that interests you.

Here's More:

Boarding procedures

Security information

You Asked: Boarding procedures

Alex: Generally, uniformed military personnel, customers traveling in a premium cabin and Premier Access customers are invited to board the aircraft along with customers with disabilities before general boarding. Once pre-boarding is complete, United Economy customers are invited by boarding group. Boarding groups are assigned based on your row. Customers seated in the back of the aircraft board earlier than those seated toward the front of the aircraft. Once assigned, your boarding group will appear on your boarding pass.

You Asked: Boarding procedures

Alex: Generally, uniformed military personnel, customers traveling in a premium cabin and Premier Access customers are invited to board the aircraft along with customers with disabilities before general boarding. Once pre-boarding is complete, United Economy customers are invited by boarding group. Boarding groups are assigned based on your row. Customers seated in the back of the aircraft board earlier than those seated toward the front of the aircraft. Once assigned, your boarding group will appear on your boarding pass.

Here's More:

unitedhub.com boarding zones

Boarding passes

Premier Access

Travel documentation requirements

When to arrive at the airport

You Asked: Security information

Alex: The Transportation Security Administration, U.S. Customs and Border Protection and the Department of Homeland Security work together to ensure the safety of customers, civilians and the United States as a whole. To view regulations and procedures specific to these agencies, please follow the links below.

Here's More:

Transportation Security Administration

U.S. Customs and Border Protection

Department of Homeland Security

You Asked: Boarding passes

Alex: We have several options available for customers to get their boarding passes during the check-in process. You can go paperless with our Mobile Boarding Pass option, print your boarding pass from your personal computer, have it faxed to you or even print them at an airport kiosk. If you are within 24 hours of your departure time and are ready to print your boarding pass, select the Online Check-In link below.

You Asked: Goodbye


Alex: Goodbye.

Then I called the main airport, pressed zero as my option and found out that the way most airlines work is that we caregivers need to go to the actual desk at least two hours ahead of time and explain this to someone. I am going wayyyyyy ahead of time--days before--to talk to someone at United in person.