Traveling with Alzheimers spouse: Is confusion expected?

When my husband had mid-level Parkinson's dementia, we tried to travel several times, by car and airplane. It was really difficult. He got agitated and we cut our trips short.

I have read around here that some people with cognitive decline or dementia travel well, but that has not been my experience. My family members did not travel well and even a short drive from home could cause confusion, agitation, and disorientation. It seems those with mild impairment fare better.

Hopefully, the treatments will be of help. But, I think preparing for things to progress is reasonable. My dad had Alzheimer’s and it developed slowly, but my cousin’s was rapid. The adjustment is challenging, imo. I hope you have support.

@celia16 My husband is much more stable at our home as he has a good daily routine. This trip made me realize that I need to consider getting help so I can have time to myself. Thanks for your response.

@raebaby Thank you!

My husband is going for his 6th infusion and he's telling me he's been dizzy, a bit disoriented.
You've made it through 16 that's great. We haven't travelled as I've been worried about being up in an airplane, and long travel in a car, isn't so great for my husband with his mild MCI.

I'm sure your husband has been getting an MRI; I'm told before the 17th infusion, as well as MRI's in the early infusion stages. Hopefully, that will give you some insight as to those amyloid plaques.
Best, Karla (thanks for sharing, as it lets me know what others are experiencing with lequembe.
I'm sure you called the doctor about his confusion......especially after 16 infusions.

In January this year I took my wife back to where we spent our honeymoon (south Florida) and even though she recognized many of the places, she still wanted to go home every night. She was also very confused because our lab (Norm) was not near her (He's her shadow) and she wanted to see him. It will be the last trip we ever take but that's fine. I'm happy as long as she is with me (even if she doesn't know me most nights ❤️). Good luck on your travels

I’m not going to travel with my moderate phase dementia husband anywhere farther than 1 or 2 hours away from home. That way we can turn around and be back in his familiar place if he starts to get agitated about where he is at. He doesn’t seem to want to go anywhere unless I suggest it. Traveling with him is nerve racking for me, not knowing how he will be able to process the changes in scenery. We are fortunate to have traveled extensively before his diagnosis so I don’t feel like we are missing out on anything.

I haven't traveled overnight to any locations with my spouse for a year - he has Parkinson's and Lewy Body Dementia, and also vision impairment (legally blind) from glaucoma. The trip a year ago was a car trip about 250 miles away and 2 nights in a hotel and then a drive back. He was very enthusiastic to go, however, he was disoriented while we were away from home on the trip and really struggled to participate in any activities. He naps most days from 2-5 pm, and sleeps from 9 pm - 7:30 am. It really doesn't allow for much time to do activities even if he does want to participate. It was also a lot of work for me, since I had to do all of the planning, packing, driving, moving luggage, etc. It was really not enjoyable for me to have him along, which is sad to say, because we used to enjoy traveling so much together. We take day trips (about 2 hours away and then back the same day) currently, but these are a long days for him and being out of his routine seems like it will be fun, but it's a very tiring day for him. I can't even imagine what it would be like to try to navigate a crowded airport with him, so I have decided that we have taken all of the trips together that we are going to take. I will take some trips on my own while I can still leave him with others to help him. I enjoy traveling to see friends and family as well as sightseeing, but I can't enjoy myself when he is with me. This is a sad realization for me.

@mm180
I completely relate to your issues. My wife has Lewy Body and is generally apathetic about traveling anywhere. But we still travel up to 4 hours to see friends and I have put her in a diaper a couple of times to avoid any accidents on the road. She finds it embarrassing even though you wouldn't know she had it on. But it still effects her mood and happiness.
She can't use the toilet by herself and I have started a list of places we can stop for restrooms where I can accompany her in to assist. Problem is in the South there aren't any family restrooms on the road. I've started just taking her into the men's room with me. That can get you some funny looks and it's not always going to be a one holer when we stop. The restroom issues is one of our biggest obstacles to our traveling.
How do you handle these situations?

@mike862 I'm Scott, and I know every patient and their situation is different. Here's an option of what we did. In my wife's case, I explained to our family and friends that, for her well-being, it would be necessary for them to make the trip to see us, rather than my wife and me traveling to see them.

Those who couldn't do that, we used FaceTime, etc., for our visits.

As I said, just what worked for us.

Strength, Courage, & Peace