Should we travel?

brupt30

My DH has been diagnosed with MCI although I suspect that he is further along in the process. He has always been close to his sister who lives several states away; and her husband passed away recently after a difficult battle with ALS. His sister is hosting a "celebration of life" open house at her home in a few weeks in lieu of a funeral service. My husband really wants to attend, but also has an irrational fear that others in his family will make fun of him due to his "affliction" (as he calls it). This fear surfaces periodically with no way to calm him, but then he becomes rational again and wants to go.

I think that this may be the last time that he can see his siblings in one place, since they are all aging with some health issues, so it seems like the "right" thing to do (and they would be very supportive). However, it will be a very long trip and I want to be sure that he is not overwhelmed. I'm not sure that there is a right answer here, but needed to vent and ask for opinions from this thoughtful group.

Timmyd

My approach with my DW is was to continue to travel until I have a trip where I spend the most of the trip wishing I had not traveled. So we traveled, it was not always enjoyable or easy but we did it. Our last trip was the one where I spent most of the trip wishing we had not gone. I recall so clearly how miserable and stressed I was for most of that trip and yet months later I feel grateful that we went. It is a very strange and contradictory feeling.

My opinion is to really think about going. Fear of embarrassing or awkward situations was big in the first few years after diagnosis. I am not bothered by that stuff anymore. The strange thing about travel is that how I feel about it depends upon when you ask. If most of the time when you think about the trip, you want to travel, then you should go. We have been through some really difficult situations during travel with TSA, cancelled flights, public bathrooms etc. At times it really sucked but none of it was a threat to health or safety. You rise to the occasion and do what needs to be done. Along the way you meet some of the kindest and most caring strangers. It certainly ended up being a lot more memorable than just another day the couch.

BPS

I think that it would be a great trip for both of you. There will probably be people there that you will never see again. The only thing I might do is to talk to his dr about some as needed mild anxiety medication just in case he gets stressed. Enjoy what you can Other will understand if there is some issues and if they don't, don't worry about them. Enjoy your trip.

sandwichone123

I last traveled with my spouse pretty far along in Stage 5. We went on a cruise, and there were things that went wrong (I trusted him to do too much of his own packing), but I was glad we went. I said it felt more like caregiving that like a cruise, but my friend said, yes but it's more like a vacation than like work, which was true.

If you can take a couple more days driving or book a direct flight, those are ways to decrease anxiety. If there's a hotel chain you're familiar with, that can also feel better. My dh started having trouble with more than 3 people pretty early on, so you might want to have a plan for seeing the whole group for the formal event, but otherwise keeping groups quite small.

You know his family. Do they make fun of people?

SDianeL

if you go be prepared for changes in him. The last trip I took my DH made him very anxious. He didn’t eat much and complained the entire trip. They are better in familiar surroundings and a routine. My daughter said don’t worry Mom. If it doesn’t work, we can turn around and come back home. We didn’t have to but it was very stressful.

ImMaggieMae

Do you have any relatives or close friends that could travel with you? An extra pair of hands or two could make it a lot easier.

harshedbuzz

@brupt30

This is always a really hard call to make. You're wise to think it through.

One factor is your DH's stage of progression and how that impacts him. If it's been a while since he was diagnosed, it's likely he's moved beyond MCI. If he showtimed during his evaluation appointment, it's like he's beyond what the doctor thinks especially if he has significant cognitive reserve he's likely further along. If it was a first appointment with neurology or one with a PCP, they may not have been comfortable with a dementia diagnosis waiting for follow-up at a 6- or 12-month appointment to go there. TBH, you live with him and probably know his stage better than any professional. This matters because many PWD will function at a level below their normal baseline when removed from their home and familiar routines; a PWD might be at stage 4 at home but stage 5 in a hotel or home of a sibling.

Presentation matters. Dad in the early stages had no social filter. He said and did inappropriate and suggestive things to servers and younger female family members he didn't quite recognize. He told conflated stories that could have resulted in an arrest. He routinely said the quiet part out loud. He did this at the viewing of a long-time friend of the family which was very upsetting to his family. I think he forgot, in the moment, why he was there and went into party-mode. If he's generally suspicious at home, you might see an uptick in agitation if he believes people to be talking about him. You might even see paranoid confabulations about growing up with these people.

That said, this might be a great opportunity to see his family. How does he do with groups of people? Dad did great early on at his 80th birthday party— he was the center of attention. A few years later, we scaled his party to a table of 6 and it was fine. But a few months later, when it was mom's birthday the same table of 6 was too much for him. He lambasted me for not inviting his brother (who had been laser focused on him at his dinner); he couldn't keep up with the conversations, felt left out and became agitated. If you go and it seems larger groups aren't a good fit, you could pivot to seeing 1-2 people at a meal or during a drop in visit.

What I would suggest would be a practice run. Make a weekend trip to a hotel an hour away and see how he does. If he enjoys it and copes easily with the change, you can feel more secure in going forward. If he doesn't, you may be able to tweak things by traveling with an extra pair of hands & eyes to make it happen.

HB

annie51

If it were me, I would opt to go for it. Travel in the earlier stages is doable but just means that you should be prepared for a pivot if needed - for my DH and me it was worth it, especially the last couple of family visits. I had the same approach as Timmyd described: “My approach with my DW is was to continue to travel until I have a trip where I spend the most of the trip wishing I had not traveled.”
DH and I loved traveling and I miss it terribly now that we’ve stopped, but now even an half hour car ride is stressful so waiting in airports, change in routine, needing to constantly watch him, makes it way too stressful.

Let us know what you decide!

jfkoc

I would plan on going knowing that you might turn back or leave at a moments notice.

cavenson

I vote with the people encouraging you to go. You've listed good reasons to take this trip. (1) DH wants to go. (2) He has always been close to his sister and will be able to see all of his siblings together. (3) You know that the fear that his family will make fun of him is irrational. They will be glad to see him and supportive. (4) Even if he is past the MCI stage, he is still considered early stage. The main negative is that it's a long trip, and I'm assuming you'll be driving. Can the trip be broken into two days, and/or can another family member ride with you? If he becomes anxious, calm him down the same way you do at home. This past September, my DH (Stage 4) attended his granddaughter's wedding 8 hours away. It was an enjoyable experience—so glad we went! I'm betting you and DH will both be glad you went.

Joe C.

I traveled quite a bit with my wife right up till about Stage 6 and I have never regretted it. Sometimes thing were challenging and towards the end I had other family members travel with us but I am grateful for the good times we had and rarely remember the challenges.

blacksparky

My wife and I decided that we would take a long weekend this week. We live in California and are now visiting my DW family in Colorado. She is in stage 6 of this EOAD journey. Yesterday out of nowhere she had a seizure and we spent the day at emergency. First time for a seizure. We fly back tomorrow and am hoping everything goes smoothly. I’m thinking that any future travel probably isn’t going to happen.

CindyBum

I would definitely do it if my DW were still diagnosed with MCI. Now in Stage 5, she just cannot handle it.

Lilydaisy

Yes, each of us our own set of circumstances. My DW and I are driving to CO this summer from WI. We lived there awhile and she loved it. She may not remember it for very long but she will be "in the moment" when we are there. We will have shorter driving days. If it gets to be a problem we can turn around.

I like the comment suggesting to keep traveling until you are on a trip you wish you hadn't taken, as long as there is an exit strategy.

Best wishes.

Anna2022

We stopped international travel early on, soon after his diagnosis of MCI. We stopped because my DH was unable to wrap his head around the itinerary and would ask repeated questions over and over, often accusing me of planning the trip without him. In truth, he had been involved in every decision but he forgot things day to day. He was also losing mobility, and was a fall risk early on. As someone else said, it became heavy lifting for me so we stopped planning those trips. Friends and family were unable to travel with us though that would have helped a lot! He has asked about international travel up until a few months ago. - he has no insight into his limitations. Instead, we have traveled instead to a vacation property in an adjoining state. We travel by car and he enjoys the ride. However, in 2023, while at this property, he fell, fracturing his back. He was in significant pain for months and we delayed our return home until he could travel. Last summer, we went again and he was fine during the drive but started asking about going home after a few days. So, things are VERY fluid and we take it day by day. Just realize that that whatever you decide, its OK to change plans at the very last minute. Good luck!

hiya

If you both want to go, I would go!!! I would, however, let people know not to ask questions about dementia and just treat him as normally as possible. If he feels somewhat confident, things may go ok. If it doesn’t, you tried. Prayers for a good trip.

ALCB

I'd go if I were you. Something similar happened with my family, we got my grandmother to go and she loved it. Someone on this site posted a photo of cards that she had to discreetly inform people that her husband had dementia and to be patient, so you could try making that.

Wishing you good luck.

Lgb35

we travel still. DH has a diagnosis of MCI but I think he is more like stage 4 or early 5. When he stresses about get togethers and feel “stupid” I tell him don’t worry about people’s names just talk about things you feel comfortable with.

brupt30

Thanks for the great feedback…I'm so grateful to have this community to turn to. I think that we will probably drive and take our time getting there…as others noted, allowing for flexibility is key. Flying is much quicker but the level of detailed plans and potential for mishaps is too overwhelming for me. He's really obsessed with the trip; asking me each day the same questions about the dates, times, and who will be there. I am somewhat wary since his siblings are known to "roast" each other (although the intensity has gotten much milder over the years). I will probably have a conversation with each of them prior to the trip to ask them to be especially nice!

JJ401

A road trip, my opinion, is easier than flying. But, there are still possible difficulties to think through.

Is there another male who can travel with you? I found my biggest anxiety was at travel restrooms. They often have two exits and I was always afraid DH would exit the other door and wander off. Another person to sit with him while you use the facility is very helpful.

Hotel? Get one of the portable door locks. You don't him wandering into the hall instead of the bathroom while you are in deep sleep.

Have a plan for if he gets overwhelmed. Is there a room you can retreat to with him? Would getting in the car and going for a short ride reset him?

Think it through as much as you can, be as prepared as you can be, and be ready to roll with the unexpected. Seeing family is important.