Travel with Alzheimer’s patient

Posted by beckboop13 @beckboop13, Aug 13 10:03am

My son would like us to visit him, but I am afraid to change things that are going well at home with my husband who has Alzheimer’s. I would like hearing from anyone’s experiences with this.

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@beckboop13 It depends! Was your husband a good traveler before Alzheimer's? What stage is he at? Do he and your son get along well, and is he comfortable in your son's home?
We are in the midst of a visit with my cousin who traveled here with her daughter. Having spent a week with her this winter, I advised her daughter to bring her to my home, where she has stayed many times, and I would invite friends and family, in small groups, to visit her here where she would have her own room to retreat to if overwhelmed. Daughter elected to take her around to other towns, relatives for 3 days and now tells me it has been too challenging. I am afraid she will arrive here later today and be exhausted, and want to sleep through our planned visits.
On the other hand, we camped for a week with one of our best friends when his dementia was quite advanced. He really enjoyed sitting by the fire, watching the kids and listening to the conversation. But he had spent his entire retirement traveling hither and yon with his wife, with us, and other friends.
So, if you rely on a specific schedule to keep your husband stable, maybe ask your son to come to you - even stay somewhere nearby and visit a few hours at a time. If you feel you can be a little flexible, go to see him - but don't overschedule.
PS This isn't my "first rodeo" have dealt with family/friends with memory issues most of my life. Everyone is different, and you know your husband best, so don't be talked into anything you know is going to become a problem!

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Everyone is different, but I gauge decisions on potential issues. What will we do if Daddy has an episode?

Factors that I consider are mode of travel, accommodations, access to medical care and backup support.

Daddy loves to take road trips for an hour or two, but the last two times, he was confused when we returned home. He knew the directions to where we went and gave me the best routes, but later at home said he didn’t know where he went. It took several hours and a pill to settle him down. We now are reconsidering long drives.

Imo, unless you are well acquainted with this condition, you don’t fully appreciate the challenges. They think it’s about memory, but it’s so much more. Sleep disruption, bathroom issues, sensory problems, emotional outbursts, confusion, etc.

Some people do well on trips though. Best wishes on your decision.

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@celia16

Everyone is different, but I gauge decisions on potential issues. What will we do if Daddy has an episode?

Factors that I consider are mode of travel, accommodations, access to medical care and backup support.

Daddy loves to take road trips for an hour or two, but the last two times, he was confused when we returned home. He knew the directions to where we went and gave me the best routes, but later at home said he didn’t know where he went. It took several hours and a pill to settle him down. We now are reconsidering long drives.

Imo, unless you are well acquainted with this condition, you don’t fully appreciate the challenges. They think it’s about memory, but it’s so much more. Sleep disruption, bathroom issues, sensory problems, emotional outbursts, confusion, etc.

Some people do well on trips though. Best wishes on your decision.

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Thanks for your input. I would have another son with me to help on the travel part. And he would have support while visiting.

The last trip we went on was two years ago to Colorado and it seem to make a negative change in him when we returned home.
I know it won’t be easy, because it is not easy, just being in our house, but I don’t complain much, so no one knows but me. It would be nice to go back home to visit, but don’t want to go backwards. Thanks again. My husband is 85 and it is diagnosed as severe Alzheimer’s.

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@beckboop13

Thanks for your input. I would have another son with me to help on the travel part. And he would have support while visiting.

The last trip we went on was two years ago to Colorado and it seem to make a negative change in him when we returned home.
I know it won’t be easy, because it is not easy, just being in our house, but I don’t complain much, so no one knows but me. It would be nice to go back home to visit, but don’t want to go backwards. Thanks again. My husband is 85 and it is diagnosed as severe Alzheimer’s.

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You matter. If your husband is 85, I assume you are no spring chicken either. Go back home to visit because your life is important too and as a caretaker it would be good to have your cup filled. I'm sure you are running on fumes as are we all. I may have written this before on this site, but it is worth repeating and helped me get the resolve to move. My friend told me: D will be confused in Santa Cruz; He will be confused in Cloverdale (where we moved). You will be happy and you matter. Change is very hard on ALZ patients; and surely not easy on anyone, but it was well worth it. I encourage you to take your trip home. There may be a time in the future when you can't travel yourself. Do it now. You can tread water anywhere; why not do it with friends and family to support you even for a short visit.

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@beckboop13

Thanks for your input. I would have another son with me to help on the travel part. And he would have support while visiting.

The last trip we went on was two years ago to Colorado and it seem to make a negative change in him when we returned home.
I know it won’t be easy, because it is not easy, just being in our house, but I don’t complain much, so no one knows but me. It would be nice to go back home to visit, but don’t want to go backwards. Thanks again. My husband is 85 and it is diagnosed as severe Alzheimer’s.

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I would lean strongly towards telling your sons, "Dad is past traveling, with his age, and how much his disease has progressed, I fear it would create a crisis when we get home. Please come here."
Also, I strongly urge sharing with your kids how difficult it has become for you - you have limits to your strength and ability. Perhaps describe a typical day - all the accommodations you must make, all the behaviors that occur in 24 hours, even the difficulty you face if he is incontinent. How would they feel if the way they found out all of this was due to a crisis? You fell ill, and they came and found out how hard things are.

If they are caring kids, maybe they can even figure out ways to make things easier for you - respite care in your home a few nights a week so you can sleep, grocery or meal delivery, housekeeping, cooking and/or laundry help, even coming one weekend a month to handle all the "little things" that get away from you.

Please, please let them know how things really are these days! My grandfather fell trying to care for my Grandma, and we almost lost them both. That's when we knew he needed help - he had been hiding it for 2 years. My parents ended up flying to Texas, selling their home there, and bringing them back to Minnesota.

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Ah, to stay or to go. A few years ago, I moved heaven and earth to visit my girl and my girlfriends, who are also ancient, in other states for possibly a last visit. It was a logistic tour de force. His family, my family, hotel bills for those who drove us, and dovetailing of his care for a period with his daughter so I could see my friends. During this adventure, my daughter's house was home base, but I knew by the time I would get on to my friends, she would need a break. Believe me, there were maps and schedules along with detailed instructions for a colostomy change. But it gave an opportunity for my family and his family to bond in a common goal. And the trip went off seamlessly. Would I do it again or something like it, maybe? - On the first day and every day after, before rolling out of bed, my LO asked me where he was.
When he went for his daily walk, we put an address in his pocket and alerted the neighbors. Despite the confusion, he had fun. And I got to actually be in the same room with my daughter and laugh with friends I thought I would never see again. It took him about a month to get back to normal. It took me about two weeks. He was 92, and I was 85. -- Well, it is two years later, and we are working through a UTI and maybe a resurgence of cancer. I am glad we took the opportunity when we had it. It was hard work, but living the lives we all live is hard work. -- My daughter and her husband have a home in Palm Springs, CA, that I see only in cell phone photos. Years ago, I started a travel file with info on flights from our Michigan home with an overnight stopover in Chicago with a mandatory stay for us in a hotel near the airport, and then the final leg of the flight to Palm Springs on the next day. All have agreed that three weeks is probably the sweet spot to recuperate from travel and confusion. It is something on the bucket list. Will it happen? I do not know, but with planning, I know it is possible. What I can't predict is if we will hold together long enough for us to achieve it. But it is something to aim for. -- Each of us knows our limits, as each of our situations is different. Think of the pitfalls and plan to avoid them or make them less impactful. When I think back on all that went into pulling off our trip, I am amazed it happened. But I have a memory worth gold for the effort. GloRo

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