My DH and I have taken numerous trips in the 26 years that we have been married. Before AD we always kept a trip diary - we have filled over 10 volumes with our adventures. This past year we took one trip only - flew from TX to IL, rented a car (I did all the driving) and drove around IL and MI for 1 week to visit family. My DH was fine on the plane and in the car. However, he became more confused as the days progressed and by the end of the week was totally disorientated. I was very stressed out - probably more so than he was). When we returned home I vowed "never again". Now I am rethinking this issue. Do I try for one more trip or just give up?! What have been your experiences with traveling with your LO? I am guessing that he is at stage 5 with ALZ.
My DH is nowhere near Stage 5 - in fact, he is still very "early on". However, I made my last trip one year ago today. Prior to that, the last 3 trips, I said I'd never do it again - but kept trying. It didn't get any better. So, no more traveling for us. It seems they all react a little differently though with the travel issue. Maybe try a couple of overnight trips only and see how he does? Mine doesn't do well on those either - so quit that also.
My DW is in stage 6. Our last overseas trip was in Sept. 2006 to northern Italy. She did well on this trip, but it was obvious that such long trips would not work. In the fall of 2007 we took a bus trip to Quebec, which left from our apartment building. There were more problems on this - she fell twice, necessitating a trip to the Quebec Emergency Room - so we decided on no more trips. She is now to the point where even a local day trip is getting difficult. Today we went to the Jackson Laboratory in Bar Harbor. As soon as we finished lunch I took her to the bathroom, but was too late. She had already had a loose BM in her Depend, and I didn't have a spare one with us. I cleaned it up as best I could. Some of the tour involved walking. She has always been a walker, but today she continuously complained of pain in her back on walking and wanted to sit down. I guess no more trips that involve any walking.
This is an issue with me too since most of my family is far away and I want to keep up the visits. I think DH is stage 4-5. We have just come back from a trip and I found that it helped to SIMPLIFY. Instead of visiting both son in PA and Mom in Ohio, which always was our routine, we had just ONE destination this time. Christmas will be a double bill again, because I booked that so early, but we're going to fly instead of drive and arrange for airport pickups. Instead of taking metro & train, I engaged an airport shuttle service to pick us up at home, and bring us back home after the return flight. DH was VERY worried about whether the driver would find our address, but I knew he would not refuse to get in the van, and I was right. (Last time we set out on a trip in the car (it was July and he was still driving) he simply refused less than an hour into the drive, turned around and came home. There went my weekend with friends).
Even so, Former soulmate, I recognize what you say about disorientation. I found it quite disturbing to see how confused he was by the end. My brother drove us to the airport and my mother rode along. When they dropped us at the curb and we said goodbye and went into the terminal, DH was furious at my brother for "abandoning" us. (I had done an internet checkin and there was absolutely nothing DB needed to help us with) It took me about 15 minutes to convince dh that we were in the right place, that our flight was today, that we were on time, to keep him from storming back outside again, leaving me to cope with two bags. Finally he said "Do you think we could really fly back to Holland today?" and then agreed to go through security. Security at Detroit airport: he had forgotten about having to take off shoes, watch, etc, and I was flustered by that time and forgot to remind him. He had not put all his stuff in the container on the conveyor belt and set off an alarm. They kept him aside while waiting for another officer to scan him and he was panicking, until I told them he had Alzheimer's and needed attention, then they took care of him right away but he was furious. The airport personnel were really very good. Our routine upon getting home after an overnight flight is always to take a bath while the house gets back up to temperature, then try to stay up all day and go to bed at the normal time. He was OK with the bath, but then was convinced that it was bedtime. I told him it was 8 am and look how light it is outside, but he smiled a bit sheepishly and climbed into bed. I got him up for lunch. Now he went to bed at his usual time (9pm) so I hope he sleeps the night through tonight. I can't give up travel, at least not yet. Have to find ways to make it work. I can't IMAGINE not going for Christmas, but . . .
I wonder - with all of the confusion on the trip - if you remembered to bring back your infamous Jello?? Isn't it funny, something we take soooooo for granted, is a 'treat', on foreign soil..(or home soil to you). Friends of ours who worked for Kellogg were in Algeria for a few years. The most enjoyed treat there was Kool Aid! The locals absolutely loved it. She'd bring cartons of it with her and even the Customs people would get excited when they saw what she had to "declare".
I brought to the top some of the previous travel discussions for you.
The kind of loose rule is - if they get agitated, wander, can't sit still, and can't handle change in routine, it's time to quit the travel. It is undoubtably stressful for us, but just imagine how upsetting and stressful it is for them.
We are off to friends in Florida on Monday. We're cruising from FTL and one of the stops is Costa Rica. Only reason we are going is DH's sone lives in Costa Rica and is meeting us at the ship. This is absolutely the last... I know, I say it every time, but this is the last. he's so confused at this point and of cours hygiene is a major concern, so I've had it. It took me a while. We are traveling with dear, dear friends who will be helpful on the ship, and in their home, but you can just expect so much. But you have to make the decision yourself. Believe me, you;'ll know.
As long as we go to the mountains or somewhere without a lot of other people, we do fine. He does, however, have problems with over activity. Such as when his brother and his brother's wife have a "tif" out camping. This causes him to get really adgiated. I could not imigine taking him for a long trip. It would be no fun for me or for him.
We are going to the mountains with brother and wife for the first week of hunting. Taking the pull trailer rather than our cabin tent. I put my foot down this year. It's fine for just us but the tents cause undue stress when his brother goes. DH has to do way too much to help them and it isn't fun. I guess that my point is that I use the "fun factor" for just about everything we do with others. If it is fun, then do it. If is isn't going to be fun, then don't do it. If traveling with you DS is still fun for you, even if it is hard, then keep doing it.
We are getting to the point where it is so much better and enjoyable with it being just the two of us...and our two pups. Good company.
The last time we travelled was two years ago. He has angry quick mood swings. I was driving as he can't drive anymore. He got mad at me and started screaming, cursing at me - wanted to jump out of the car. I was afraid to stop to eat or go to the rest room. When I finally did stop as I couldn't wait any longer, he disappeared and I didn't see him for about a half an hour. I decided that I could call 911 if he didn't show up. But that was the end of our excursions outside of walking distance from our house. I can't take him on any public transportation as it would be too stimulating for him and he would start his stuff. Our world is very small. Thank goodness we had done a great deal of traveling when we were younger as those days are gone forever for us. Cruises are out as gambling has become a thing with him with the AD. Always tight with his money before. Like Chris R said - you will know
Traveling stopped very suddenly for us. If you can still travel you need to get to the big trips as soon as possible because it might all end quickly.
We did our last driving trip when he was still driving. Because he did all the driving if both of us were in the car, I haven't been on a highway, except for a few doctor's visits, for 5 years. So I didn't start just taking up with our going places as the driver.
We can't go on the bus to my daughter's home in New York City for two reasons. I don't think he could handle the bus. And there is no place in her house were I could take him to quiet down. Her house is tiny and when we have been there in the past there has been too much going on for me, much less for him.
I've been quite interested in reading people's comments/observations about their travel experiences. This year we took a road trip that followed basically the same route as one we did just a few years ago. While I personally enjoyed the time away and we had good weather, i was also dismayed at the change/decline in my DH's experience of the trip. His stamina for travel was definitely reduced. In the past, vacation trips have always been a highlight for him. This year our trip didn't bring him much pleasure. He was happiest on our final day when he knew we were returning home. Joan's post where she mentioned "agitation, wandering . . . can't handle change in routine" basically summed it up. It kinda hit me between the eyes to realize how much his capacity for traveling had changed . . . and I wondered how much we'd be able to do travel in the future. He'd like to do a repeat of an out of country trip which would involve air travel but I'm nervous about doing that as I don't think he could handle plane delays anymore. He doesn't have much stamina for travel beyond 2 or 3 hours at a time and then needs a major nap. Meals have to be regular or things come unglued. Thankfully he is happy with local jaunts----a morning trip to something nearby etc. But that isn't the same as going away for several days.
I thought that this year -- my DH's first year on Exelon -- he would remain stable and we could do some travelling. It hasn't worked out that way. A long weekend with kids and grandkids in a cottage in a park, another long weekend hiking with friends, one transatlantic trip to see my Mom, that's it so far. We have a rather complex Christmas trip planned and I'm already tense.
So far the cruises work fine for us. Since I don't have my job to go to or half a dozen things to do at home, I have much more patience dealing with DH. I have been asking for a table for two tho.
We went on cruises and that was good, but now she gets agitated in a new place. Even visiting a friend at their house she starts picking at her clothes. We now use our travel trailer and go places in it. We went to Florida for 3 weeks this summer and it worked well.
I realize now that our last trip, a cruise, worked out as well as it did because it was a cruise. And Carolyn, he enjoyed the other three people who were at our table during that trip. But they were the same three people every evening, which helped.
This has to be an individual choice. Each of us knows our spouse and how much help we have to give them. I've spoken at length on this subject, so I won't add more here, except travel is over for us.
We're trying a short cruise after Thanksgiving and I'm hoping that the meds he's been on since the last cruise will help with the problems that made me think we'd have to stop travelling. I'll let you know how it goes. Yes, a table for 2 has worked well for a long time, as he has no interest in socializing with new people. I've learned so much this year and think I'll be better to handle everything without being upset and expecting too much from him. He feels at home on cruise ships, having spent several hundred days on them, so it's not as if he had to adjust to a totally new environment, like hotels, etc.
Oh, boy. Yes. With this disease when something stops it stops FOREVER. Will I ever travel again? Maybe. But never with my husband. Will I have a social life again? Probably. But never as part of the couple that was him and me. Those things are over. FOREVER.
I think I'm the only one who doesn't like cruising. The last one with my husband was a nightmare. Why they didn't put us off the ship I will never know. He raged on endlessly. I took my family on a cruise without DH last year and I still didn't care for it. Did a windjammer cruise and got caught in a hurricane many years ago and thought it was fun. Several years ago we did go on several European river boat cruises that worked out well. Only 74 out side cabins so not a lot of people to contend with. Meal seating is open so you can decide on the mood of the moment. Boat docks directly at most stops so transfers are easy. Once on the boat the guides took care of all the logistics and paperwork. Might be a good option for some folks.
Quiet stuff only, I think. We've had a few nights in motels, in the process of college-shopping with the youngest kid, and Jeff often wakes up multiple times in a strange location and needs help locating the bathroom and the bed. So it's not a restful thing for me, especially knowing that I've got 7 hours of driving to do the next day.
I think he can still enjoy it, and I'm planning on some sort of travel for when the boy goes to college next Fall, but it's going to have to be restful and low-key. Lots of nature, driving broken into shorter bits, no crowds. Disney World is definitely out!
Wait a minute, Nora. Your post confuses me--you LIKED BEING CAUGHT IN A HURRICANE???????????? Clearly, you don't suffer from sea sickness! Two years ago we were on a dinner cruise in Budapest and passed by several of the riverboats--they looked great. I would love to do that at some point--it would be great for me since I'm a lousy sailor and the rivers are calm.
The man who was going to buy my house last summer (but didn't) is an AVID European River Boat Cruiser. He's going to do the Danube at Christmastime. He said big ships are not for Singles, but on Riverboats in Europe, lots of the passengers are over 65 asn single and he has a blast!! He LOVES them..books them two at a time in advance, he said. I think I'd like the Vienna and Sound of Music cruises...Apparently the Christmas on the Danube is more fun than staying home at Christmas would EVER be.
marilyninMD no I do not get sea sick and did enjoy the excitement of the storm. Once you drop the sails a windjammer just heels over and stays that way. The deep keel really helps steady the vessel. Only problem was getting a full cup of coffee. Everything was slanted and even the pancake syrup slid off the pancakes. There was a good reason for deep rails on the table tops.
I am going to China with my DH and have a terrible pit in my stomach about whether I'll manage everything ok. I suspect this will be our last trip except to family. He is barely verbal and no trouble so far but wants to go. Again I'll be even more alone not as able to talk to my support people while trying to minimize his problems to the others in the tour group. Do you ever get to enjoying the travel or is it always worry and dread?
Hope you have a great trip, abbygail. Do it if you can. For me, it was way too much stress and for DH he never regained the ground he lost on trips. I was always worried and stressed, so no more travel for us.
My sister in law, whose husband is, er, strange, although not I believe categorized as having dementia (they live on the other coast) has taken her husband on various European tours, the kind where everything is done for you. She says the other tour members have been very helpful and kind to her husband. He's pleasant and can walk. She's a nurse. If he wants to go and you want to take him, I'd make very sure you have trip cancellation insurance where you can cut the trip short when you want. If he's not a wanderer, not incontinent, you might be able to make it work, although in the sense of a vacation being a relaxing time for YOU, it won't be. I wouldn't worry about trying to hide his condition from the tour group as long as he doesn't have diarrhea at the dining table..! (my husband, just going to Maine last summer, enjoyed the whole thing mightily. CHina would be far more of a challenge - no Depends available, for instance!)
One of my friends took his AD wife to China a few years ago and prepared very well...he packed very lightly for himself so that he could bring plenty of Depends and wipes for her needs. Also her meds had to be crushed and he took along plenty of the individual packages of applesauce so that he could use that to get her meds into her. She was about a Stage 5 at that time and my friend is a very patient man.....I thought he was nuts at the time, but he did it.
When DH started to have problems while traveling, which we loved to do, the last four overseas trips we took (cruises and riverboat cruises), I invited our daughters to accompany us. One is a nurse. So no major problems.
However, the last two times we flew to Florida (just the two of us) he got away from me, and security had to find him wandering away. The daughters both work and could not take time off.
So now we don't travel. I tell everyone to travel when you can--don't wait too long.