Long distance travel, tips?

CatsWithHandsAreTrouble

Hello all. Late July is my mother's family reunion and I would like for her to be able to go as she had another family reunion last month and she talked about it for a whole week! Mom personally didn't know half the people there (it was her maternal grandparents' family) but the fact she could tell me about a one day thing for a week and be happy about it, I would like to give her the chance to have a similar experience. However, this next one is out of state and a 9 hour drive.

I've tried doing some planning/research and I'm getting somewhat conflicted answers; travel is okay if planned out OR not to do it at all. I'm really hoping that it could be feasible for her.

I think she might be somewhere in the mid stages of AD and one of her neurologist has said that she shouldn't be left alone, if this is of any insight; I don't know what context is applicable so let me know if you need more info.

If she does go, my dad will mostly be taking her and he's not the most patience of guys but does care deeply for her. I'm worried that even if it's feasible for her to travel, it might be too stressful for him. I myself am going separately with my sister who prefers minimal interaction with our parents. Though if dad's not up to taking mom, I might have mom come along with us, but that'll be last resort to respect my sister.

Tl;dr: mom (pwd) has family reunion 9 hours away out of state, is traveling possible or practical?

Nerdyblond

Hi CatsWithHandsAreTrouble.

Is she requiring a lot of things like medications, adult diapers, a walker...etc? If that is the case then I would say that traveling would be impractical. However, it is only a 9 hour drive. She might be okay. Plus there is the issue of risk. Is she unsteady? Can someone stay with her the entire time? If she falls does her insurance cover her in another state?

Basically, be prepared for whatever is likely to happen to your mom based on what you have observed with her. No "what if's", just "in case".

CatsWithHandsAreTrouble

Thank you Nerdyblond! Definitely didn't think about insurance coverage out of state, something I'll add to my list.

She has no mobility aids and generally gets around fine so long as you point out uneven ground or steps and is also a little wobbly when tired. I personally am very mindful of that but I'm not sure about others watching her.

Dad likes to do his own thing and let her do her own things when they're out at parties, but makes sure she eats and drinks. I wouldn't mind staying with her during the event to look after her when need be. I'm not close to anyone really so I don't mind missing out talking to the others.

She doesn't wander off but I've been thinking about signing her up for that safe return thing I've seen mentioned on other websites, just in case. Also been thinking about packing a day bag with snacks, drinks, extra clothes, wipes, just in case.

Rescue mom

I’d be concerned about Dad and how well he handles 24/7 caregiving out of town. Don’t assume she will function like she does at home, or even as she did months ago.  Many PWDs lose abilities and do not function nearly as well when away from home.  She might, but many do not. They need a lot more care and attention, more things done for them, and it is seriously exhausting for a sole caregiver to be “on guard” 24/7.

ButterflyWings

Welcome Cats - You can search on "travel" or something similar for lots of threads on the same topic.

Will they be driving? Staying in a hotel? There are some good tips for those situations as well as flying. We still do road trips (stage 6d) though they are not very often now, and I have to be prepared to change plans at the drop of a hat. (Basically, no plans at all other than get from point A to point B safely, however long it takes. Or cancel plans altogether, which I have done many times in the last 1.5 years.) 

We traveled out of the country twice in stage 4 or early 5...it was the last time for that but glad we went. Our 1st int'l flight after diagnosis, we were visiting another couple who knew DH's impairments so we were all keeping a watchful eye but still had a few omg moments. The 2nd trip just 7 mos later to a small resort was a disaster. Missed international flights, lost items coming through customs, DH out of sorts...he had declined significantly and I really should not have been flying internationally with him alone by that time but didn't know it until we were in the middle of a hot mess. Both trips could have been so much worse though. I was very prepared, even for the mishaps, and very lucky. Most of the preparation came from advice of members here. 

I hope the reunion goes well -- great that she enjoyed the first one so much! Suggestion: if dad is "impatient" with DM already he probably should not be the main caregiver on this trip. Just saw Rescue's post and I agree. Sounds like he needs a break perhaps. Understandable if he is her main caregiver 24/7 at home. Good to give him a respite if you can. But traveling can be done with lots of enjoyment for the PWD and you as well. Good luck to you.

CatsWithHandsAreTrouble

Oh, thanks Butterfly! Totally slipped my mind to check for previous threads. I'll start poking around the site., I was just anxious for a response...

Just for some clarity to others, dad doesn't care for her 24/7. Four of us take care of her throughout the day and week. I didn't mean to imply differently, my apologies. Dad will not be alone with her the whole day, just for traveling if they go. Dad loves car rides and enjoys mom's company. Dad just sucks at planning for mom so I wanted to get a head start so he isn't caught off guard, or if he is, I can assist him better. 

Perhaps I'm jumping the gun, I don't know if they'll even be going. Just wanted to start planning in case she goes, or if there's any other traveling in the future.

JJ401

9 hour drive means stopping for bathroom and food. I suggest someone travel with them. Unfamiliar highway rest stops are prime sites for confusion. Some have family rooms, but many don’t. Mom might need help with unfamiliar fixtures. Don’t assume that since Mom uses the bathroom fine at home that she can do so on the road.

Nerdyblond

Those are great ideas Cats!

GothicGremlin

If you end up checking previous threads, you might find one by me. I took my sister on an international trip when she was early stage 5 -- it was a bucket list trip for her and I wanted to enable that. So glad I did - she still talks about it. I'm also glad that she doesn't remember any of the bad times (of which there were a few), she remembers only the good times.

It was not a vacation for me or my s.o.  - yet, tough as it was, I'd do it again.  Logistics are everything. Like, if you fly, call the TSA traveler line. Tell them that you're traveling with a PWD. We did that and were able to make a reservation for security. We had a dedicated TSA agent who walked my sister through security.

I did a 10 hour drive with her when she was stage 4 and had no problems. I planned that one out to within an inch of its life too. I knew where the rest stops were, the gas stations, which food to pack or stop for, etc. It made life so much easier for my sister. Now that we're at stage 6, and she's in memory care, I can barely take her to the doctor's office.

So ... timing is important, gauging how your mom is, what she is capable of doing, what might upset her, so many things.  I agree with everything JJ401 says.

harshedbuzz

CWHAT-

I probably wouldn't do it unless your mom is in the earlier stages. That mom needs "care" from family members suggests this is going to take a village and it doesn't sound as though your family dynamic supports that easily.

Taking a PWD out of their comfort zone requires proactive preparation for Plans A-E and vigilance to recognize when things are about to go sideways. Many PWD seem to progress one full stage when removed from their own home and routines. With caregiving not your dad's superpower, this could be a miserable experience for them both. 

There's a member on the Spouse/Partner forum who is planning a similar trip for a grandson's wedding with more family support than you seem to have. It might be helpful.

Alzheimers (alzconnected.org)

HB

HSDaughter

Just adding my two cents about unfamiliar bathrooms.  Public bathrooms are all different!  Some have the automatic toilet flush, some do no not.  Soap dispensers may be automatic, or not.  Towel dispensers....wave your hands below, or in front of the dispenser, or turn the wheel on the side, or pull down with both hands..  Put your hand under the faucet to make the water come on, but not too close, and if you move your hand away, the water cuts off.   No knobs to turn the water off and on.  Toilet paper may be hard to unroll from the dispenser tacked on the wall.  Handicap stalls may all be occupied.  Floors can be wet if cleaning crew is understaffed.  The list goes on and on!  A nine hour trip will certainly mean several bathroom stops.

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CatsWithHandsAreTrouble

Thank you all so much for your added input! I am very thankful for the precautions you've said to me about the travel. 

Perhaps traveling by car is out of the question, someone earlier mentioned flying, maybe that would be better since it'll cut back some time traveling. We used to fly a lot pre dx but of course, there's no telling how well she will handle things now. She also is claustrophobic which now that I think about it might make the plane ride a little more challenging.

Thank you Gothic for sharing your experience with traveling with your sister, that is very good insight. I also appreciate harshedbuzz suggesting another thread with similar inquiry.

Lots to think about. Thank you!

mommyandme (m&m)

My thoughts are she should fly, hopefully with another female for bathroom help.  If driving is going to happen, I’d take another female for the same reason. Thinking also that the shorter travel time with flying could help with the transition so everyone’s not exhausted/frustrated by the time the party starts. 

Your dad might still enjoy his road trip with you or your sister?  You all could get some quality time too, maybe?

I hope it goes fantastically! Let us know.