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My daughter said he wouldn't remember the trip, and not to go, I feel like I owe him this trip, even though he is not living every day in reality. I don't know what to do. Take him and hope he enjoys the visit, or not, and regret he didn't get the chance to see them.. We live in Arkansas, and the trip would be to California so it
is quite away from home. However in his present state he believes half of the time that he still lives in California. He also thinks his wife still lives in California. We have been married 45 years and he doesn't know me anymore.
He remembers the past but not the present.

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Do what you think will make him most comfortable. If you go because you think you will feel guilty if you don't that is the wrong reason to go. I like the suggestions of taking a helper with you, renting and rv, looking at pictures before you go and take those albums with you. What if he will not get on a plane to come back? Try again another day? I wonder if airlines would be flexible with changing flights if they had a doctor's note ahead of time. May be worth the call.

The last time my mom was out of town was for one of my kids wedding. Thank goodness I had someone else to care for mom so I could enjoy the festivities. They rented a three bedroom cabin, so everybody had their own rooms. But it did not matter one bit! Mom was roaming around all night kept everybody awake and just wanted to go home.
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Gail, I cared for my husband with Lewy Body Dementia for ten years. We were extremely fortunate to have as his neurologist one of the most respected researchers into LBD in the country. The first time I asked him about travel he said, "Novelty-seeking experiences are therapeutic." Each time we visited he asked my husband if he had taken any trips, had any adventures, etc.

So we traveled. To family reunions. To the Grand Canyon. To Glacier National Park. To visit relatives. To visit good friends. We cruised. We flew. We went by AmTrak. Based on actual experience with a man who had LBD I have these comments:

1) Do it for the experience in the moment. Try to enjoy it hour by hour. Don't necessarily expect that it will build fond memories. If it does, that is a bonus.
2) It is more work taking care of someone with dementia as you travel than it is at home. In that sense the trips we took were never "vacations" for me! They were a nice change of pace and a change in scenery. They were also hard work.
3) I carried little business cards with me that said, "Thank you for your patience with my husband. He has dementia." I only used one of them.
4) In the last year of his life we took our daughter with us. I highly recommend having a helper accompany you if at all possible. It makes a huge difference.
5) My husband got pleasure from anticipation. He might not remember it on his own but if someone said, "I hear that you are going on a trip," he'd say, "Yes! We are going to see my daughter and visit Glacier National Park!"
6) I took LOTS of pictures and picked up postcards and travel materials and he enjoyed looking at these later. It extended to pleasure of the experience for him.
7) You may be surprised that he recognizes his brother from his past, or disappointed that he doesn't. If you have scrapbooks or old pictures it would be good to look at those before you go. Be sure you have some recent photos, too.
8) I wonder if your husband has another dementia besides LBD. Not recognizing people in his life is not typical of LBD. I did not experience that and I'm not sure how that would change things. If he recognizes that you are the kind person who lives with him and takes care of him, then I'm not sure the fact that he doesn't understand that you are his wife would make a lot of difference in travelling. If he has no idea who the heck you are that may prove problematic.

Whether you decide this would be too hard on him with little value, or you decide to take a chance this will be a good experience, don't second-guess your decision. Don't feel guilty either way. We didn't get a guidebook on how to make decisions in this situation. Do your best based on your past experience and your current knowledge, and don't look back and say "I should have make a different decision."

Act in love and do your best!
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GAIL
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Hire a professional driver to take you in an R.V., have a nice trip, stop by the grand canyon on your way. Do loved ones ever wear name tags, or a tag on a lanyard that explains, in what would be his words; This is my wife, we've been married x years, and we live in Arkansas. Her name is: G a i l
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Medical transport could cost $7,000 or more if he needs care and comfort.
What would you like to do for vacation?
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Save your money, invite them, neices and nephews to visit your home. Put them up in a nearby hotel. The fewer that come at once, the better.
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It doesn't sound like a good idea to me, but you haven't given a lot of background either. How old is your husband? How far has the disease progressed? How do you plan to travel? Are you driving? If so, how will you help to toilet him? How mobil is he? Can he handle hotel stops? Ditto on airport transportation --- rest rooms? It is easy for a dementia patient to get anxious in crowds, so airports and bus travel might seem overwhelming. If he doesn't know you so how would he recognize his brothers that he hasn't seen. Invite the brothers to visit you at home. It will be easier to manage your husband to keep him calm.
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With all due respect, I think this would be a waste of time. My Dad has dementia and still has basic life abilities but no short term memory. I've taken him on short trips to the old home place etc. and he recognizes some things and places but by the time were 5 miles away he's asking where have we been, where are we going. It just doesn't stick. He is functioning at a higher level than you describe your Dad, but he gets only momentary pleasure out of these field trips. I would never consider subjecting him ( and me) to a long trip down memory lane.
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If he doesn't know you or other people anymore, I'm not sure why he would enjoy the trip. Things probably look at lot different than the way he remembers them in CA, so I don't see how he would gain anything from that. If it would make you feel good about it, then I would just weigh the risk vs. the benefits.

Is his health good besides the dementia? Would he tolerate the long drive or flight? Is he easily agitated or anxiety prone? Does he wander or could you ensure that you could keep up with luggage and him? Is he likely to pace and keep others up at night. Does he repeat things a lot so that it becomes an issue with other people? Is he likely to refuse to leave when it's time to go? How would you get him back into the car or on a plane if he refuses to go.

And regarding the people he is going to visit. Often people who are not used to be around dementia patients find it quite uncomfortable. After a short visit they may not feel comfortable spending more time with him. Will you be able to handle that and make your own plans without their help of looking after your husband.
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gail, to me the main questions are if you would enjoy the trip and if he would be able to handle it. If the answers to both question are yes, I don't see any reason not to go. My only concern would be if he started acting out when he was away from home. If that won't happen, I don't see a problem with it. It won't matter so much that he can't remember the trip, because he would have also forgotten the same time spent at home. The big question is if you would enjoy going.
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