Road Trip(2)

JDancer

My LO and I will be taking a two day (12 total hours of driving) road trip in a few weeks. I'd like to hear about road trip experiences. My husband does not have bowel/bladder issues, yet. He will be unable to assist with driving or navigation and will likely lose track of where we are. Please share all experiences, even if your LO is at a different stage.

Ed1937

If I were you, my only question would be "What would happen if I became sick or otherwise unable to handle things?". Is it possible someone else could go along with you? My wife also could not help with navigation. If she gets a block away from our home, she'll likely need help finding our house to get back home. Local trips only for us, although she has other problems too.

Rescue mom

Regarding our last road trip, I wish I had known what I learned afterward: expect their behavior and/or ability to decrease hugely, when traveling. Afterward, I was told that’s a general “rule,” not always, but very often, and to at least be ready. I was not, not at all. 

My big mistake was that I though DH with Alzheimer’s would be able to do the same things he could do at home—get a drink, find and use the toilet, carry a bag from car, etc.—and I was very wrong. I knew he could not drive or navigate (or do many other things) and I knew I’d have to do all that myself, as well as pack. That was OK, I could do that. 

But all the “new” things he was unable to do just because of not being home, absolutely gobsmacked me. 

We only drove a few hours away, stayed in one place, in a small suite, for 3 days. But he could not step outside without being lost, he couldn’t “find” the kitchen area, toilet, lights, or refrigerator, or water faucets. Could not find his clothes in the one closet and one dresser. Etc. He could not remember where he was supposed to be, or go. He could not get a banana off the counter. SO many things he did at home, but not away.

He could not carry a small bag from car to room (or after leaving store, etc.), he would just put it down and walk away. He could not get from car to room alone (or anywhere). Lots of other things, too many to list, I never imagined he could not do.

He knew he was having problems —which he rarely acknowledges—and would get upset. On the way home he said he never wanted to travel again. (From a person who has travelled extensively in several continents).

I personally was exhausted and at rope end, physically and mentally, after 24 hours. I would never travel alone with him again because I simply cannot physically do everything that had to be done for him. It was a nightmare. I did not know before how much it would be. It was NOTHING like he is at home.

OTOH, some don’t have those issues, and all goes as expected. Be sure he always has ID on him with other contacts, you never know when accidents can happen to you, and he could well be upset and unable to help. There were past trips when I got hurt or very sick, and hospitals required. If that had happened on this trip, it would have been a disaster for us both. He could call 911 at home, but not in new place.

JDancer

Taking this trip- driving from Bloomington, IN to Savannah GA with a stop in Atlanta- with my DH will be much like taking it by myself (I think), which I would not hesitate to do. I will have to make all decisions, etc. Am I missing something?

JDancer

Thanks for your input, Rescue mom. On our last trip I made sure he carried ID, phone numbers and a very simple map I drew. Perhaps being together in a strange place will help me evaluate his current condition. I know he has declined during that last year, but it's so easy to be in denial.

During the last year, we took a few overnight trips to nearby state parks and they went well.

Rescue mom

Once we got back home, my DH was fine. He could do, and still does, things he could not do on the road. It was “just” being out of familiar surroundings that caused a huge, albeit temporary, loss.

I have travelled by myself several times since. I’m ok with that, I can do for me. But the added responsibility and physical work of keeping up with, and handling all needs, of a second person, was far greater than I expected. If he was like that at home 24/7, the family agrees he would have to be placed.

Rescue mom

If you’ve already recently been away overnight and all went well, seems like this trip should be OK too! Congrats for you, I admit to being envious. But since he’s been ok away recently, seems like he should be ok with this one.

Rescue mom

Lordy, Atlanta traffic requires not just nav help, but a whole different level of consciousness! It was a horror even when we were functional. But sounds like you can handle it. Vaya con dios!

JDancer

My friends live in the ATL suburbs, so I hope to avoid the worst of the traffic. I was in Louisville a month ago and traffic, in general, seemed light, from COVID I think. I hope I find the same in ATL.

Lynne D

I have taken a couple of driving trips with my DH, and it is trying. A couple of things I learned:

Never stay anywhere that does not have an ensuite.

Bring night lights and keep the place dark at night except the bathroom.

Expect there to be lapses.

Keep eating and sleeping on schedule.

Plan on being needed more than usual.

I am finding that the extra work and worry may not outweigh the need to be someplace different for me. My DH has anosognosia, and would never accept that he has a problem, allow sitters, or stay with others while I get respite.

Joe C.

Our last few road trips were pre-covid and involved overnight hotel stay. Things I remember driving from Massachusetts to Florida were the constant “are we there yet?” questions before we even got through Rhode Island. I dealt with this by have her favorite music on to help keep her mind occupied. Another issues was restroom stops, I needed to wait outside the restroom with wipes because I know she would not remember to wash her hands and sometimes not properly zip up her jeans. When we arrived at the hotels I had to make sure I brought everything in when we checked in because if I had to run back out to the car for something, DW would be frightened at being alone in an unfamiliar location. I carry am “I am a caregiver” card with me always that has emergency contacts in case I am incapacitated.

HSW

Pre covid, DH wouldn't wait for me outside the rest area bathrooms, we couldn't get him to get out of the car to go inside a restuarant for dinner. Once he took the car keys out of my pocket while I was sleeping and went out for coffee. He was unable to find his way back to motel. After that we used an alarm for the door and brought the coffee pot with us. Noises from other people bothered him and he had to reminded that we were camping or in a hotel.

Last year we did a trial run in the camper at a local park. First night was fine other than reminding him we were camping. The second night he refused to relax or remove his boots to go to bed. He didn't fall asleep until 3 am.