Traveling is a problem

Care4Hubs · January 22

It has become increasingly difficult to travel with my husband. He gets so confused.

I put everything on his calendar on his phone since he looks at that all the time (not that he remembers after he reads it…)

This past weekend, we were to go watch our grandson play football. We were only going for the day. We had to leave no later than 6:30 am (it is a little over a 2-hour drive). We have done this a few times in the past several months. I got up, showered, dressed, and got my DH up. As I was fixing breakfast, I hear hangers clanging. He was getting clothes out to pack for a few days. I told him we were only going for the day. It took him a minute, but it finally registered. I said I was going to call our son to say we weren’t coming. My DH asked me not to do that. So I gave him 10 minutes to get dressed. He started going through his shaving bag, looking for a second toothbrush…. Ugh. We got in the car right at 6:30…

Before we left to come home, my DH started following me upstairs (I was going to the bathroom!). I asked him what he was doing and he said he was going to hall me bring the stuff (luggage) downstairs. We had no luggage!

When we go to visit my brother (out of state) for a week or two, every day my DH ends up packing his suitcase to come home because he thinks we are leaving.

When we get home after traveling, it seems he doesn’t realize we are home.

Not only do I have to deal with confusion, but I have to pack his suitcase. That also requires that I do his laundry beforehand because he has been hanging up his dirty clothes…. 😑

So I don’t know what to do. I tell myself that I am not going to travel with him anymore (which means I won’t be traveling), but I want to continue to see the grandkids and my brother. It is just so stressful for me. Even though our son lives relatively close, he works and the kids are busy on weekends with their extracurricular activities, so it is hard for them to visit. So it’s up to me to make the trip if I want to see them.

MaryMN · January 22

I'm in the exact same spot and feel my world shrinking as we are able to go fewer and fewer places. It's hard.

My husband also obsessed over the calendar on his phone. An occupational therapist suggested a white board weekly calendar hung prominently in the kitchen where DH can easily refer to it. It is HIS job to fill out the calendar (with my help) because the act of writing down the tasks helps them stick in the brain better. I place a magnet indicating the day of the week we're on and we also have a brief meeting every morning discussing the day's activities. It seems to have helped the calendar issue, at least for now. Might be worth a try. You could also do a daily calendar if you want to get into more detail…breakfast, meds, exercise, etc.

Quilting brings calm · January 22

If you must travel: pack the bags and put them in the car while he’s asleep. Then announce the two of you are going for a drive. Dont tell him you are traveling until he’s in the car. Same when you leave to come home

tonyac2 · January 22

https://alzconnected.org/discussion/comment/264104#Comment_264104

Absolutely! Don’t ever mention when you’re going somewhere. If it’s an appointment, maybe 1/2 hr prior to leaving. They’ll drive you crazy the whole time up until leaving. Plus I think it’s too much stress and anxiety for them.
@MaryMN I agree, my world shrunk as well. My husband can no longer stand or walk, so visiting kids or friends is out of the question as no one has a wheelchair accessible home.
@Care4Hubs, I know it’s not always easy, but try to be patient with your DH and help him with work arounds to things that are suddenly difficult for him. I’ve learned the less my DH knows, the better. Better for his anxiety and fear. I look back on our experience and wished I would have known earlier how to help my DH be calm and have a less stressful environment. I feel like I was the maker of a lot of his stress because I didn’t know any better and didn’t really know anything about dementia. This group has taught me so much, I’m very grateful I found it.

debriesea · January 22

To help take the stress off, try having the mind set that you are traveling with a 2 year old. — You need to do everything.
My DH “packed” his own suitcase. Then I packed what he needed in another.

We are currently a few weeks into a 2 month road trip visiting family and friends in another state, kind of like a last hurrah. I I did everything to prepare and pack the car while he watched TV or slept so he wouldn’t try to get involved.

During our last few months at home he wanted to go somewhere everyday. So I did 1 errand a day rather than be efficient and do them all in 1 day, and occasionally add something fun while we’re out and about. He’s pretty easy going as long as I keep things low key. Motto: “He gets to be right and he gets what he wants.” Anyway, since he always wanted to just go, (sometimes I’d find him sitting in the car) I figured we may as well hit the road. He’s been adjusting fine so far.

I’m prepare to quit if anything starts going south and blessed to have my son and his friend ready to help at a moments notice.
I’m hoping to continue to travel as long as we can but I will now need a flying buddy to help us navigate airports if there is a connecting flight. And my destinations are always with family or friends for support.

I hope you can find a way to continue your travels. We all know there will be a time when that too will come to an end. Address your stress points and see if there may be another way to handle them. Hugs.

RetiredTeacher · January 22

https://alzconnected.org/discussion/comment/264111#Comment_264111

Debriesea, I am wondering how your DH does with sleeping in hotels and unfamiliar places? I have not tried a road trip with DH and am wondering if that is possible. We used to RV but that got harder for me to do everything and he just wants to sit and watch TV or sit outside the RV. I think we may try a half day trip, then a longer day trip. If those go well we might try an overnight. Our world has shrunk so much since this disease has taken so much. We run errands together and go to lunch once a week but other than that we are home. I miss a bigger world and wondering if that is still a possibility.

debriesea · January 22

Retired Teacher,

He’s been doing well sleeping in hotels and at families homes, as he does at our home also. We rarely had a routine lifestyle as we love to travel and took our 2 children with us. That may be why he always wants to go somewhere.

He doesn’t wander yet but at the last minute I considered buying a motion detector for hotel doors. That’s on the back burner for future trips.

I now prefer the car/fly travel over our motorhome as he wants to fiddle with everything, try to use the control panel & gets frustrated with it all.

Give it a try gradually and see how things go. Consider having your first overnighter close to home. I hope you are able to get out there again.

RetiredTeacher · January 22

Tysvm for your response. I am going to plan a day trip then a close overnight. I would love to be able to get over to the coast and see the ocean again together. Ty for the encouragement.

beachwalker5 · January 22

Traveling with my MCI DW last year had its challenges. It involved international air travel with connections, a cruise and then a six day land trip with two days of rail travel. Many episodes of DW misplacing her passport/ boarding pass/ cruise card/ credit cards (she refused to let me hold these items for her). Some episodes of disorientation (walking out of our cruise cabin in her nightgown in the middle of the night to find a bathroom!), inappropriate public behavior (crowding in front of other people during aircraft boarding before our group is called). Also multiple episodes of hyper-anxiety and occasional OCD behavior. When the trip was over, I told myself "never again".

Now reading these postings here, I'm starting to re-think maybe we should still try to do a few more trips (even if she repeats the above behaviors) because her condition could (and likely will) get a lot worse. I think travel is also wonderful source of mental stimulation for her as long as the anxiety doesn't take over. If nothing else, reading this forum has made me realize that these early stage days may still be the "good old days" and I need to be careful not to prematurely postpone happiness….

RetiredTeacher · January 22

I agree Beachwalker 5, Carpe diem. It's only going to get harder and I feel the need to have some fun and make memories together while we still can. Will it be the same as it was before when walked on the beach together??? Well no but we could still sit together and enjoy the sunset over ocean. I need to keep trying until we can't go anymore, as much for me as for him. His mobility is declining so this is the time to make those memories. I need the sound of the surf to help soothe my soul.

Timmyd · January 22

From the time that traveling became more difficult until the time we had to stop travel was almost 4 years. During that time I learned a lot of adjustments that allowed us to keep traveling. Fortunately DW is reasonably cooperative and that really helped.

I took responsibility for all the essential aspects of travel. I tried to let DW do what she wanted regardless of how much sense it made. I tried not to confront her with her limitations, mistakes, or nonsensical behavior. It was easier to play along with whatever her intention was rather than trying to confront and correct her. When necessary I tried to just discreetly clean up behind her to keep things operating. Along the way I tried to pay attention to what worked well, what was not working and to make changes for the next trip. I tried to stay focus on the big picture, achieving the intent of the trip. I did not want to get distracted by each of DW's symptoms along the way. Travel was not as fun as it used, to be, but it was still worthwhile.

Michele P · January 23

https://alzconnected.org/discussion/comment/264141#Comment_264141

You don’t know when the wandering will start. Local police and sheriff departments have Project Life Saver that provides gps tracking watches. They will track you anywhere in the U.S. If you go out of state, you notify your local authorities, and they send the picture and information about your loved one to the local authorities where you are visiting.

annie51 · January 23

https://alzconnected.org/discussion/comment/264218#Comment_264218

This is good advice about mitigating the risk of wandering. With my DH the wandering began without warning - at 1:00 in the morning from our home. It was a panicked 8 hours before he was found. Definitely find some way to prevent this if you’re traveling.

tboard · January 23

It has been a couple of years since we have been able to go anywhere. Up until a couple of months ago I could take my DH grocery shopping but I think those days are over too. I was forced to retire a few months ago so that I can provide full time care. I now understand that my retirement will conisist of staying home and providing care. That isn't what I planned for and had I known that this would happen I would not have spent the last 50 years working so hard.

debriesea · January 25

Michele P,

Thank you for your input on Project life Saver. It sounds great. Unfortunately, my DH has never worn a watch and doubt he would start now. This is what I’m doing now to track him. All my family are on Life360 together so his phone is monitored. I also have a tile tracker on his phone for when the battery dies. He has a credit card size tracker in his wallet and proudly wears a tile tracker clipped to his belt loop, moving it himself when he (rarely) changes pants. It gives me peace of mind but I don’t rely on that completely. I’m still vigilant about his whereabouts and have someone with him when I can’t be.
The motion detector is my next step in case he leaves at night with no tracker on him. I’m looking for one that will have a short delay before sounding off so I have time to deactivate if I go in the area first. It will be used at home, too.
Any other suggestions will be very much appreciated about wandering.

Sunfish47 · January 25

I’m always with my DH, and leaving the house at night while I’m asleep thankfully hasn’t started yet. Guess I’ll need a motion detector for the door at some point.
But I think I need a hotel room motion detector now. We still travel within the state occasionally and the last time we stayed in a hotel a few months ago, I woke up at 5 am and he wasn’t in the room. Got dressed and went down to the front desk and there he was, barefoot in a T-shirt and underpants staring at the desk clerk. ☹️🤣😂

Bobo59 · January 25

I too felt the need for the last hurrah at travel with my DH. We did a cruise with less than 300 people on board. My DH was quick to tell people he had dementia. (I was amazed at how many were curious and wanted to know about this disease.) It was helpful that the staff and many passengers were aware. Although we were joined at the hip, it was nice knowing others had there eye out for my DH if I needed to use the washroom, say. My biggest worry was losing him while exploring different sites. I had a tracker on him but I was still terrified. Nevertheless, I have fond memories of that trip.

jgreen · January 25

https://alzconnected.org/discussion/comment/264431#Comment_264431

🤣🤣🤣

Barbie300 · January 27

Traveling with my DH is exactly like going with a 2 year old like someone mentioned. Once we get to our destination and get settled things do improve. The worst experience then is his constant losing everything, so I’m constantly looking for something he can’t find. Thankfully if we’re in one room, everything has to be in that one room. We go on frequent cruises and this works out fairly well. The biggest problem is we sometimes have to sit with strangers and it is somewhat awkward since they are unaware of his condition. He thinks nothing is wrong with him.

SDianeL · January 29

https://alzconnected.org/discussion/comment/264568#Comment_264568

many caregivers have cards printed up that say their LO has dementia.

jimorrison · February 1

https://alzconnected.org/discussion/75158/traveling-is-a-problem

I can totally relate to your experiences 100%.

Planning and packing for my DW without telling her

My DW packing her suitcase every single day when we are visiting family or friends, thinking it's time to go home

Going thru TSA not knowing what to do at the scanner

Standing outside the women's bathroom at the airport — otherwise she won't find me in the waiting area by the gate

Mixing her dirty clothes with her clean clothes

Staying up late or in the middle of the night

And many other things that throw her off when we travel.

I have decided we can no longer travel. And it's very difficult for me to travel since I am her fulltime caretaker. My kids live in New England and we live in the Southwest. So I am missing a lot of valuable family time!!

I don't think we (as caretakers) are alone in this area.

I wish you the best!

Timmyd · February 2

https://alzconnected.org/discussion/comment/265011#Comment_265011

This sounds very much like my experience traveling with DW. There were a few things we were able to do which made air travel a little easier. We used the TSA cares program to navigate security. Some airports did better than others, but TSA does try earnestly to accommodate PWD if you register for the program in advance. The bigger the airport, the better the service we got from TSA cares. We used companion care bathrooms in the airport. These bathrooms are often in demand so we sometimes had to wait. Also I discreetly handed cards to the passengers near us and the flight attendants letting them know of DW's condition.

We eventually had to give up on air travel, but these tips were useful as her condition advanced.

Traveling is a problem

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