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.
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!
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.
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.
What would you like to do for vacation?