Traveling with spouse who has dementia

Dee/Dave

I’m new to this group and I have a question.  We’ve been invited to stay with friends in FL for 2 weeks.  Will the change in environment make his dementia worse?  Has anyone noticed this?

June45

Welcome Dee/Dave. In short, the travel shouldn't make the dementia permanently worse, but it will certainly seem worse while you are traveling. When out of their familiar environment, the PWD will often be more confused than normal and behaviors that you haven't seen before might appear. But a lot depends on how far along in the course of the disease your spouse is.  Once you are back home, the PWD usually returns to their "normal".

Ed1937

Welcome to the forum. Sorry you have reason to be here.

It is not uncommon for PWD to have much worse symptoms when they make trips, such as vacations. They thrive best in an environment that remains the same. But there are people who handle it pretty well, especially in the earlier stages.

Rescue mom

There are a couple of questions about travel with a PWD on this forum right now and in the caregivers forum; people have shared a variety of experiences you may find interesting. The thread titles are pretty clear, I think, about trips, vacation and travel.

Many, including myself, saw their LO with dementia be/get “worse” on a trip, in new surroundings. My DH was very fearful and nervous, and needed much more help when away from home. There were so many things he could do at home, but could NOT do away from home. (Lots more details elsewhere). He did not do well away from home, not at all, but when we got back home, he was back to “normal.”  And we’re travelled extensively before Alzheimer’s.

Some others said their LOs enjoyed at least parts of the trip. The people who had most success with travel seem to have had other people along to help with caregiving. My trips alone with my DH were too exhausting to me (plus hard for him) to be worthwhile. It was much easier when friends and family were there to help, not just with dressing, eating, not getting lost, etc.—but also to distract him and give him more company than just me.

But the friends and family absolutely need to know the situation, and what’s involved. Willingness to accommodate the needs of an Alzheimer’s patient on vacation, and for how long, can vary enormously.

I’ve said before  I wish I had known beforehand how likely it is for a PWD to have worse problems when away from home. Silly me assumed if he did (whatever) at home, he could do it in a vacation home. That was VERY wrong. Not all have such difficulty, but many do.  If I’d been better prepared for that in advance, it may not have been so bad.

Dee/Dave

Thank you for replying.  Our home does seem like his safe place and I certainly don’t want to get him upset.

Dee/Dave

Very good to hear that he should return to “normal”, but I also do t want him agitated or feeling lost while we are there.   I’m just so afraid to make the wrong decision.

Dee/Dave

Thank you.  I’m not sure we are in the early stages.  I’m not sure what the stages are.  I had him to a neurologist in Scranton, he absolutely hated him and refused to go back after 3 visits.  So not sure what stage he is in.

Dee/Dave

Thank you so much for your input.  It certainly makes me think I have to really consider everything involved, travel etc.

June45

If you google "7 stages of Alzheimer's", you will find several resources. I like the one our hospice uses...FAST.  It is simplified and it is geared to those with Alzheimer vs. other types of dementia.

June45

Dee/Dave wrote:

Thank you.  I’m not sure we are in the early stages.  I’m not sure what the stages are.  I had him to a neurologist in Scranton, he absolutely hated him and refused to go back after 3 visits.  So not sure what stage he is in.

If you google "7 stages of Alzheimer's", you will find several resources. I like the one our hospice uses...FAST.  It is simplified and it is geared to those with Alzheimer vs. other types of dementia.

caberr

Dee/Dave, this past April, my husband and I went to FL for the month.  He did need help with dressing (which he doesn't need all the time at home) going to the bathroom at night because he would be confused as to where the bathroom was, getting confused as to where our bedroom was (I brought a gate for the top of the stairs s). 

But my cousins were across the court, my brother and his wife 20 miles away and friends came down for a week.  This was a huge help for me during the day and it was a huge plus for him.  My brother took him out and my cousins and friends were with us at the pool and beach.  We also did day trips which we all enjoyed. 

He  especially liked being with my brother without me.  He needs a break from me as much as I need a break from him!   Spending time with friends and family helped us both. 

When we got home he was able to do all the things he could before we left.  I was happy we went and to be honest miss the help I got while away.  

I say go while you can and enjoy!  Best of luck! 

Dee/Dave

Thank you so much !

eaglemom

Welcome to the message board Dee/Dave. You will find a wealth of information here. On the top of this page click on solutions. I will bring up a menu of items for you to click through and read as need be.

Home is where our LO's always feel safest. It is where they are as comfortable as they can be. Any change in the environment can upset them. You never know how your LO will react until you travel. Will you be driving? Flying? Traveling and rest rooms can be problematic IF you've not thought it through before hand. You'll need to walk them to the restroom. And wait for them. If a "family" restroom is available, have them use it. 

Make certain you try to structure your day as closely as possible to your day at home. Routine routine routine is best. Also those your visiting need to know about the situation. Just so they aren't caught off guard. Your LO might be a little more 'clingy' to you until they feel comfortable - or not, you just never know.

Think it through and let us know what you decide. As far as what stage, your LO can be having symptom's from several stages at the same time. Some physicians have changed to the 3: mild, moderate, severe. Knowing what stage they are in really isn't important to me. Knowing they are safe, loved and happy - that's what's important.

eagle