To travel or not to travel, that is the question

Jeanne C.

At Easter, I had planned a trip with my DH to Florida to see my parents (14 hours by car). Decided against it bc I wasn't sure I could manage it (and him) on my own. My sister and I are currently discussing a drive down together with my husband and her teenage boys. Pros: my sister and her boys are great with him, she's a nurse, and obviously I wouldn't be on my own. Con: worried about how he'll respond to something outside of his routine for an extended period.

He's stage 5ish with FTD. I'm going to get his NP's opinion but I'd greatly appreciate your thoughts.

PookieBlue

Jeanne,

My DH can not really do anything without my direction and I would still take him by car on my own on a 5 or 6 hour trip to visit family. Only you are most familiar with your DHs outbursts, ups and downs. If I had the support of a sister and teen boys, I think I might even venture a 14 hour trip. I just don’t think Dementia should have such a strong hold on our lives that we get alienated from our families.

harshedbuzz

@Jeanne C.

This is quite an offer your sister is making but my gut would be against it.

If your DH is to a stage where you can't manage it, the disruption of his familiar surroundings and routines will likely cause an uptick in symptoms and behaviors to something more like stage 6ish. Your sister and her boys might be "great with him" because he showtimes when they're around.

You could probably do this safely with the help offered, but the entire endeavor will be about him. If this is truly a visit that's just about family maybe that's OK. But if your sister stays behind to help you deal with new behaviors while her kids go on a side trip to Disney of the beach that would be sad. Similarly, if managing DH means you can't spend some girl time with your aging mom that would also be sad.

My advice would be to place your DH in respite and make the trip to see your parents.

HB

Ed1937

Jeanne, while I agree that making the trip could have it's benefits, my personal opinion is that the potential cons might not make it worth the effort. I'm sure if things went the way you hope, it would be nothing short of great. But you could have some real problems, and wish you didn't try to do it. And if he did slip further in progression, there is no guarantee that he will come back to baseline when he gets home. That is quite an unselfish offer from your sister. Please let her know how much you appreciate it.

JJ401

Random thoughts

That’s five people in the car. Is the car large enough for the five of you to be comfortable on the trip?

Are the teens older or younger teens? Helper caregivers should be on the older teen side.

The teens are comfortable with him in his normal setting. How comfortable will they be accompanying him to men’s rooms along the way (if there is not a family rest room available).

14 hours — one day or two? One day is a long trip. Trips can be disorientating. If you do two days, him wandering out of the hotel room could be a concern.

Like you, I would not do it alone, but with your sister and older teens, I would carefully consider it. A few months ago I probably would have gone with a sibling help. Now I would not. Only you can decide. But, I am learning that if I am vacillating about something, it’s usually better not to.

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GiGi1963

I don't know how the drive would be but I have had negative experiences while away with my DH and my son and family. In privacy of our room he would be angry and mean at times but showboat with group. New bathroom is a disaster! I would rather stay home than go through it again. Take advice of respite and enjoy yourself. I'm sure you deserve it.

SDianeL

Jeanne, I have experience with travel with my DH, 78, Stage 5 with ALZ-Posterior Cortical Atrophy. Last Christmas we took a trip from FL to AL. My daughter drove. It didn't go well. I was mentally & physically exhausted by the time we returned home. He didn't eat hardly anything on the trip screaming that he wasn't hungry. I was worried he would get dehydrated. He didn't have any grasp on the time. When we arrived, he sat on the sofa and complained that he didn't know how to work their TV. He didn't interact with any of the relatives. He doesn't remember their names or their relationships to me or to each other. If I said anything to him, he became angry & agitated. Getting him to eat & take his pills was a nightmare. He's a diabetic and he has to eat to take his insulin. He was loud in the hotel rooms. What I have found with my DH is that the more I can keep a routine the better he is. No more trips for us. I don't even take him with me anymore to local family visits.

GG06

Another angst inducing dilemma. Consider the advice you would give us. I have a feeling you would say we know our loved ones best. I think that, along with the input of your husband’s NP, will give you your answer. Hugs to you Jeanne.

Jeanne C.

Thanks everyone.

I think @JJ401 said it best: I am learning that if I am vacillating about something, it’s usually better not to.

I'm not going to go. Once I have respite care in place, I'll consider a trip.

My sister and her boys really are good with him (they come monthly and usually spend the weekend). But the risks everyone pointed out plus the stress I was experiencing just thinking about it make this a case where it's just not worth it.

Ed1937

Jeanne, I think you are making the right decision. Set up the respite, then go and have a great time.

Quilting brings calm

You are making the right decision. We moved my mom home when she was in the throes of an undiagnosed UTI ( not for lack of trying to get it diagnosed). It was a 12.5 hour drive without meal stops. we had an overnight in a hotel - with her in the bed farthest from the door and a chair under the doorknob. I went to the bathroom with her every time and my spouse would then watch her while I took my turn. She thought we were lost and driving in circles and she was anxious and talked non stop. She opened the truck door at highway speed because she wanted to take her dog for a walk( we got stopped before she got any farther than opening the door). It’s not a trip for the faint hearted.