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Traveling with Alzheimers spouse: Is confusion expected?

Posted by moea @moea, Nov 16 12:47pm

My husband has Alzheimer's disease (mild) and we are finally approved for short term travel after completing 18 Lecanemab infusions. We will need to return for his next infusion in a week. He was looking forward to getting here but is more confused than ever. This is a location we travel to every year for a month or so and it is familiar. I am getting frustrated and hoping this is not the new normal. He recognizes that he has more confusion. Has anyone else experienced this? Any advice would help. Thanks.

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ktcosmos | @ktcosmos | Nov 25 1:12pm

We took one single-overnight trip to Phoenix (just a hour and a half from home, where we’ve gone a jillion times) late in the spring that was quite difficult. Spouse was continually confused, could not keep track of his personal items (though they were right there), etc.
Then in late July we took a 6-day road trip with one of my sons that was fantastic. This involved air travel and then daily driving and a new hotel room every night, all to places unfamiliar to him.
For both “adventures” I did extra contingency planning and don’t know why the outcomes were so different.
I traveled for a few days once without him since his diagnosis. I spent a couple weeks lining up all kinds of help at home during my absence and he did fine. I think I prefer that scenario to traveling with him at this point. Makes me sad though.

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Sue, Volunteer Mentor | @sueinmn | Nov 25 6:00pm
In reply to @ktcosmos "We took one single-overnight trip to Phoenix (just a hour and a half from home, where..." + (show)
Profile picture for ktcosmos @ktcosmos

We took one single-overnight trip to Phoenix (just a hour and a half from home, where we’ve gone a jillion times) late in the spring that was quite difficult. Spouse was continually confused, could not keep track of his personal items (though they were right there), etc.
Then in late July we took a 6-day road trip with one of my sons that was fantastic. This involved air travel and then daily driving and a new hotel room every night, all to places unfamiliar to him.
For both “adventures” I did extra contingency planning and don’t know why the outcomes were so different.
I traveled for a few days once without him since his diagnosis. I spent a couple weeks lining up all kinds of help at home during my absence and he did fine. I think I prefer that scenario to traveling with him at this point. Makes me sad though.

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@ktcosmos We never know what will work. When my Mom has memory issues post-stroke, we took her cross country to stay with her sister, on a familiar route. One hour, she would be totally with-it suggesting shortcuts. A while later, she would be asking us where we were going, and asking to go home (800 miles away.)
We found traveling only in daylight, discussing the trip and destination every few hours, and keeping a regular meal schedule, really helped.

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ranch | @ranch | Nov 26 10:53am

My wife has dementia. We are both in our mid 80’s. In June I took her with me for a Boat trip in Europe for 3 weeks. It was similar to taking a puppy with you. We have been all over the world together and I thought this would be our last trip together. She is now in a facility for dementia patients. I know it’s a Lot of trouble to take them, but you never know when that is the last you will be together.

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mm180 | @mm180 | Nov 27 7:33am
In reply to @mike862 "@mm180 I completely relate to your issues. My wife has Lewy Body and is generally apathetic..." + (show)
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@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?

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@mike862
I haven’t had to start going into the restroom with him yet, but I don’t think that is far off for us. It sounds like you have hit upon the best solution and if you get any strange looks I would just quietly say, “my wife needs my help” and most folks will likely be understanding.
Staying home is definitely the easiest option from a logistical standpoint. Having friends visit at your home instead of traveling to them might be a good option?

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