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

Thank you all for your comments. I have decided NOT to take her along and she will be in respite care.

I'm curious to know what plans you have for her while you're at the reunion, since I assume she's not going to it. Seems like a lot could go wrong in 6 days OTR and in a new place unless you're planning on having her be watched by those family members you're visiting while you attend the reunion.

I would recommend to bring someone you trust and able to work with both of you to go with you. I believe it’s a good idea but make sure you have someone to watch her when you need to get something done fast. This would be a lot more relaxing for all of you. Have a good trip and enjoy your reunion.

Honestly, no.
Is this your reunion? Will you be able to "enjoy" your time with your friends the whole time?
If you're going to feel guilty about not taking her on the trip, find a caregiver who is licensed and bonded from a reputable in-home care to travel with you and babysit while you're at your reunion.
You can also place her in a rehab facility for the time period you'll be gone.
It isn't that you're embarrassed having to explain to your friends if your wife is with you, BUT it is harder on her!
Alzheimer's sufferers PANIC, become AGITATED and can hurt themself, you or anyone.
If she's incontenet, will you be attentive enough to help her before it becomes embarrassing for her?
The respite will be good for you.

I would not recommend it as taking her out of her comfort zone can be very hard for both of you. She may ride well in the car but you will be dealing with bathroom issues and motel issues which will be disruptive for her. I also know how !uvh stress you will be under. Not sure it is worth it for her. Might want to think about why she needs to be at the reunion when she probably will not know people nor understand what is going on.

We just returned from a road trip from California to Seattle, and it went reasonably well. We had planned on Amtrak since my wife likes the train. There she has forgotten how to get back to our roomette from the toilet, but it is simpler on the lower level (4 roomettes, short hall, and she would not remember the stairs). Yet the train was cancelled because of the Delta forest fire, so we had to cancel or drive; then I-5 was closed, causing a 6 1/2 hour tedious detour. She didn't know where we were going, but she seemed to enjoy it. She is able to go the restroom alone as long as I am there when she comes out. She doesn't know that we are married (57 years) but thinks I am a nice friend, generally trusts me and lets me guide and care for her. She doesn't wander off (except for once) and behaves while in public. She enjoys going places with me.

So you would have to judge how she would do. Also, you would have to accept that you may have to cancel the trip part way there and return home.

In my opinion, the car trip idea is much better than flying but it won't likely be easy or relaxing for either of you and there are a lot of challenges when traveling alone that could be lessened by having another person along. Do you have a third person to either provide respite care for her at home or to go with you to help with care along the road? Hotel rooms can be scary because they are new and different. Same for restaurants etc. The biggest challenge you will likely face is not being able to leave her alone for the whole trip. She could wander off or seriously injure herself if she becomes frightened when she's alone. Things to consider if doing this drive alone with her is how you will handle it when you need to get gasoline, go to the bathroom, take a shower and even attend the reunion. You can do things to make the trip easier for her like mapping out your trip in advance based on familiar restaurant chains that are similar in every location, mapping gasoline stops at large truck stops such as Luvs, using a hotel chain that has a set room style so they will be more familiar to her as you go along. Bringing things from home to make her more comfortable will help too. I would hesitate to go it alone, but with a lot of work and planning you can probably pull it off.

Is respite care an option? It would allow you to relax and enjoy your time at the reunion, instead of being on high alert the whole time.

I would be concerned about things along the way like restrooms, even if she can manage all that on her own, sometimes the ones at rest stops have more than one door. One opens to the outside, the other to the inside of the building. Not all rest stops have 'family' rooms.

If she is doing okay in her familiar surroundings she may not do as well in strange locations, 6+ hotels/motels is a lot of strange locations. Eating out all the time takes a toll on the healthiest of people, how are you going to make sure her meals are familiar?

If you do go, take a couple things from home that are familiar. Me, I always take my own pillow.

Why is air travel out of question - as a former FA I have seen many in worse shape than your wife if she can still walk & talk -

But respite care is probably the best for all - as this would be the last time these people see her so maybe leave their memory of her as they last saw her not the person she is now -

Then arrange for respite care occationally for you to get a break but also you may need to have her go into care full time at some point & this will tell you what sort of care she deals with best - think of it as research for optimizing her when/if the time comes when she is more than you can handle or if your own health issues become more acute & you need time to heal from an illness or accident -

Many caregivers neglect themselves as they are so focused on their LO but you can trip, fall or another car could hit you - by making these arrangements you are being loving in planning for 'what if' - as they say 'hope for the best but plan for the worst'

If you can leave her with someone or somewhere, they do have respite care for overnights. Enjoy the time away by yourself and don’t feel guilty about it.

I'd advise against it honestly. It just sounds like a recipe for possible disaster. Since Alzheimer's is like a constantly flowing river that can turn on a dime, I'm concerned about a possible decline due to the stress of travel and unfamiliar people and circumstances. Reunions are normally filled with celebratory particulars: shouting, laughter, bright lights, loud music. I just think there are too many dangerous variables that might tip her one way or another. Alzheimer's sufferers need quiet, familiarity and most importantly, routine. I believe someone here mentioned FaceTime'ing this event. I agree wholeheartedly.

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.

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.

I would suggest Skype, Google Hangouts, or Facetime for your reunion plans. If she is taking any medication for anxiety, the trip will be a disaster.

I wish you the best and I'm sure your classmates will understand.

I wouldn't. Too many risks of her wandering off. Confusion would set in.

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.

I took my wife on road trip and learned to stop for gas at small Independent gas stations as I had to go with her to help her in the bathroom. I found the staff were always accommodating to watch the bathroom and most cases they were one seaters only. Rest stops were more of a concern but and I did not go in with her but would ask people to check on her and they were more than willing to help me. I did not have the hotel problems of trying to escape. I even flew with her and got into the airplane bathroom with her which was very tight as I am 6 ft 3in. My response is you know your wife and where she is in her cognitive ability and if you feel comfortable and take all the precautions mentioned-I say go for it-just know you have to have your antenna's up all the time.

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.

Cpldutch, a bittersweet query. It was definitely worth considering. She’s done well in the car, for how long/ distance? The idea of a second female traveler I think would be key for any other travel you decide to try. I also tend to agree that the events themselves may be too much for her anyway.

Hope you do get respite care, and go yourself. If you have the right device, maybe you could hold and record a number of short sessions with her, talking to her about a series of people or small groups so she can reminisce a bit and you can show them when you’re there? Just a thought.

What a good reminder here, to use the safety door lock for our seniors! Petrifying to read some of the stories above!

God bless you, and her.

How will you handle things if you need to stop at a service plaza along the way to use the bathroom - either for you or for her? She may become confused in that type of environment and not know what to do when she goes into a large public ladies room.

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.

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?

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.

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.

Could be a good idea.

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.

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!