TRAVEL CAUSES DISORIENTATION

lazymom05 · May 5

My LO is 64 with a diagnosis of EOAD. He is progressing faster than anticipated. Everyone is saying 'travel / do things / take them places'. But what I have discovered is there is a huge price to pay. Halfway through the 'experience' I see him start declining mentally. I can see it in his eyes and the disorientation begins. It takes several days for him to get settled. Thankfully he loves being at home so that helps a lot just to keep him somewhat stable. It is bittersweet. Bitter because i know he wants to do things, but it is so disruptive to his mental state. Sweet because he loves being at home and I should accept that and be grateful.

blacksparky · May 5

We took our last cruise December of 2023. My wife was diagnosed with EOAD at 53 in October 2023. I tried to do the same thing as you have tried and it was so much work for me to try to keep her focused that it ended up being our last trip ever. She is more happy to be at home with a set daily routine now. I wish I knew about her Alzheimer’s a few years earlier as the doctor who diagnosed her said that she had Alzheimer’s for several years. Looking back I now there were definite clues but we had no idea because she was so young.

lazymom05 · May 5

It is so true. What is best for them is just to have a settled routine at home. A place they find safety and warmth. The years before the diagnosis was so difficult. As I look back, I see all the signs, but the veil had not been lifted. I am grateful that I make it through those difficult years as he was 'hiding' his memory issues. Now he is so sweet/kind/loving since the veil has been lifted.

Chas/Judy · May 6

I find the same thing.

Jeff H · May 8

Travel is very "iffy" with Alzheimer's. My DW's mother who lives in Florida also has Alzheimer's. She wanted to visit my DW here in Indiana. So, they tried to drive up here. It was a disaster. They got to Tennessee and had to turn around because my DW's mother just wanted to go home.

I find the same for my DW. I've been trying to get her out by taking her out for breakfast (or anything) but she just wants to be at home.

I have accepted that, and she is comfortable just being at home.

sandwichone123 · May 8

My dh and I took a last trip that had been originally scheduled for Spring 2020. When we planned the cruise, dementia was not on the menu, but by the time we went, it was more caregiving than vacation for me. He couldn't dine in the main dining rooms because he didn't have patience for the process—we had to eat every meal in the buffet. He got lost once when he left the room alone, but there was no place to go, so I found him. He packed for himself and forgot important things. Still, it's a memory, and I'm glad I have it.

Maru · May 8

https://alzconnected.org/discussion/75965/travel-causes-disorientation

Same experience here. DH's AL jumped up a notch almost from the time we got into the car. On the other hand, if you can get a family member to come stay with your LO , you can travel. One of the spouses in my support group does this every year.

rplourde50 · May 8

Yes, it's iffy. My DW can't even find the bathroom in a hotel room when we're on the road. It takes constant "babysitting" and almost isn't worth it.

True North · May 12

I learned that traveling to a location at a much higher elevation can have a huge impact. I had no idea that could make symptoms so much worse until it happened.

caregiving daughter · May 12

You are a wise person. What you describe makes it so hard on caregivers when others offer advice, even if it comes with, "I'll take them out". What the person offering to help doesn't see is the two days following of anger and resentment and anxiety. I even had a relative who offered to host my mom at her home and indicated she would drive her back to memory care. Half way through the time period, she called and said she could no longer drive my mom home, and would send her with someone else. Obviously I dropped what I was doing and ran to get her. I can't tell you the hardship that created all the way around.

elainechem · May 14

My hubby was forced to retire at age 59. My daughter made the comment, "You should travel." Yeah, right. I already knew that wasn't possible. He was more comfortable at home. I did take us on some road trips to visit our baby granddaughter who lived in a neighboring state. That was completely exhausting for me. I had to do all the planning, packing and driving. I had to make sure that he went to the bathroom, dressed and ate. Plus, he never really understood our relationship to "that kid" as he called her.

It was worth it for me to see them, but it wasn't for my husband. I couldn't leave him home alone and I couldn't afford to pay anyone to care for him.

lazymom05 · May 14

https://alzconnected.org/discussion/comment/272389#Comment_272389

My husband's daughter just announced she is pregnant with twins. His first grandchildren. BUT she lives halfway across the states from us. When she announced to us I have to admit i was so sad. It was such bittersweet news. Sweet for him / bitter for me. NOW i have to manage that also. There is NO WAY we can fly / travel to there to see the kids. And it will be so difficult for her to travel with twins. Thankfully she is aware and is understanding but it doesn't change the sadness.

Lilydaisy · May 17

We had a difficult travel experience this weekend. I planned to go to an area we both really loved. But the 4 hour trip there was filled with disorientation and the length of the drive. Going out for dinner created continual worry about our dogs back at the resort. She couldn't seem to adapt to a new location. So we came home early and she seems relieved. I have canceled 3 short trips there later in the summer. In hindsight, maybe I was wanting to make the trip more for me and should have known it wouldn't work. Another door closed.

TRAVEL CAUSES DISORIENTATION

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