Contemplating a long car trip with Alzheimer's disease wife. Good idea or not?

Depends on if she is continent for one thing. If not I wouldn't do it. Three days is a long time to be on the road. ALZ people don't do well with change. My Mom was always ready to go after an hour. Would wife really enjoy it. Or would all the people overwhelm her.

Someone mentioned on this sight that a parent got the door open while they were moving. My thought was put her in the backseat where you can put the child guards on for door and windows.

Depends on how well she accepts change in her routine and how far she is in the progression of the disease: needed assistance with dressing/eating/restroom, incontinent, supervision/direction to get around, etc. Have you taken a long distance trip recently?
Before being diagnosed with Lewey Body dementia, my father enjoyed traveling eight hours to another state to see my sister. In early stage, after traveling four hours to see his grandson and family, he wanted to go home shortly after arriving and refused to spend the night - something we had agreed upon before starting the trip. That was the last long distance trip we took.
In mid-stage, he became combative and tried to open the car door while traveling down the freeway to a local doctor’s appointment. We were both extremely lucky that I had a caregiver in the backseat to help me, where he rode from thereon! In mid-winter, he was pouting because we had to go to his doctor’s appointment, so he laid down on the sidewalk in front of the building, refusing to enter! Ahhhh, the memories- not funny then, but I chuckle now when reminiscing!
So, after considering these things, you can make an informed decision on your most recent experiences. Would it be better for her to stay behind so she can maintain a routine and feel safe? Would she enjoy being in the midst of large groups and a lot of noise, participate in activities or conversation? Would she know/remember many of these people, or be overwhelmed because she can’t remember them? What would she feel more comfortable doing?

You are the best person to answer that question, because you spend most of your time with her - observing her. You know how well she behaves among strangers (she probably won't remember any one at the reunion) and how is she when staying in strange places? My Mother for one would be totally confused. Does she show signs of sun downers (agitation and confusion around sundown or late in the afternoon)? Does she do well in crowds, around loud music and lots of movement? Does she show any signs of paranoia? When taking my Mother for long car rides, she gets nervous and wants to know where I'm taking her. Telling her helps, but only for a few minutes. These are just a few of my thoughts based on my experiences. You'll probably receive several replies and consider them carefully. A 6 day trip can be a long time for someone with Alzheimer's. Good luck and have a safe trip!

I suggest getting someone else to travel with you, maybe another woman. Dementia patients can have unexpected reactions and when traveling you do not always find the facilities you expect. Having someone to accompany your wife to the restroom while you pump gas and pick up some bottled water for the cooler can be very helpful.

Thank you all for our answers. She is not incontinent yet. Sundowners yes. Eating so so. You are swaying me to the no go side. I just feel so bad that she is missing things in life. One last Hurrah as it was. I will find respite care for her. Thanks again.

Most rest stops, the larger ones will have "Family Bathrooms" so you can go in with your wife. Sam's Clubs also have Family bathrooms. So going into a bathroom is not a problem usually.
The worry I would have is the Hotel and since you have a door alarm that would solve the wandering.
I am just wondering about the reunion.
How well will your wife do with all the people, the noise, the confusion and the late nights?
I know with my Husband he did much better if we kept a pretty strict schedule as to when he ate, when he went to bed. Going off schedule seemed to throw him off the next day. And if you have almost a week of "off schedule" how will she do?
Is this a reunion for her or for you?
If it is for you I would suggest putting her in Respite for the length of time you will be gone. You can fly so your trip would actually be shorter. I think you, after you get over the possible guilt that you will feel, will have a better time. You will not have to worry about your wife in a crowd, you will not have to worry if she will try to get out of the hotel room, there are a lot of other worries that will be eliminated.
If the reunion is hers will she actually benefit by attending the reunion? Will she know the people, if she is at all aware will she be embarrassed?

The trip for family and friends..if you do go to the reunion is it possible to leave her with family while you attend the reunion? If there is a small group of people that say they would love to see "Mrs Cpldutch" you might arrange a get together at a local breakfast spot and all meet for breakfast or brunch one morning. IF morning is a good time for her, it might have to be an afternoon if later in the day is better for her. Only you know when is her best time of day.

I hate to say it but no matter what you decide to do you will always have second thoughts. If she gets up set while you are there you will think you should have left her home, if she gets up set at home you will think she should have been with you.
As the facilitator of one of my support groups always says..."Don't should on yourself" You make what you think is the right decision at the time, just like you always made the right decision when it came to all the other decisions in your life. It was the right one at the time. Forget 20/20 hindsight.

A long trip for me driving with my LO in the car was about an hour. It was for mandatory things like medical appointments, but, I would never do it otherwise.
People are different, though. Perhaps, she would enjoy it. It's just that my LO and other dementia patients often get easily disoriented in new places, overwhelmed with lots of noise and strange people. The people may appear strange to her if she can't remember who they are, so, it's embarrassing and scary to them. What if your wife doesn't recall some of her old friends and family members? I'd consider if this is really something that she might enjoy or not. I had to remind myself to think of what my LO would enjoy with her new reality and not what she used to like so much.

I suggest you should only contemplate taking her with you if you can get some other close friend or family to go with you. Things can get out of control easily and you will not be able to manage it alone. I have been in those shoes. The hotel stay was a nightmare, I did not have any door alarms. My wife made me sit in the lobby of the hotel until 2 am because she was waiting for her husband to come back from a meeting. You know logic does not work.

If you decide to go, take all sort of items like coloring, comic books, video player and related movies along (whatever she enjoys doing). Also do not forget her favorite snacks. Road side food is usually not healthy and she may have a problem with digestion or other reasons.

She is not incontinent you say, but the start of incontinence is always unannounced and a big surprise in the most unlikely place. So better be prepared. Take along many change of clothing because soiling clothes is very easy.

Take along all the relevant medical information and enough supplies. You may end up staying longer than you planned. There is a lot more to consider, but that is a different subject to discuss if you eventually decide to go. In your shoes, and going just the two of you, I would not do it. But you maybe much more adventurous than I am.

Good luck.

Would she have fun at this reunion? Is she capable of being in large crowds with noise without getting upset? Would she interact? Or are you just afraid of leaving her home while you go? If its a 3 day drive, and things go “south” as they say, remember it’s another 3 day drive back home. You know your wife but if you have an inkling this might not end well, and that’s why you’re asking, I wouldn’t do it.

You have definitely made the right choice not to take her. My wife and I had made a music festival trip to New Orleans for (22) years in a row. Two years after her AZ diagnosis I thought she would enjoy a shortened version. It was a disaster. Our usual hotel was frightening to her, no sleep, episodes of yelling “We have to go home right now” at 2:am, etc. It wasn’t her fault-she was just out of her comfort zone. Even now, (6) years later, she loves to ride in the car but the limit is about an hour, round trip. She too has tried to open the door, etc. Get help for her and go to the reunion alone. The time off will benefit you greatly.