Need some opinions and points of view on this. We have always been frequent travelers. However, this past year I have questioned whether the time has come to give up the type of travel we have always done. My main reservations are: increased mood swings; concern about behavior problems if there are any glitches regarding flights, unexpected events, etc; no respite for me during the trip. The last big trip we took was fall 07--3 weeks in Eastern Europe--DH was great. (Better than at home.) However, the disease has advanced a little since that time--I certainly wouldn't attempt more than 1 week away from home now. He attends adult daycare 5 days a week--not sure if I want to give that up, even for one week! DH does all ADL's on his own, would enjoy the travel experience while it is happening--probably no memory of it aterwards. Not sure what it would accomplish for me--our normal routine is probably more restful.
MarilyninMD How about trying a short weekend trip to try out how well it goes over. Less stress on you, and will let you know how he will handle. Otherwise it might be time for you to travel alone. You will find that you need that time alone, to give yourself a break from it all. Only you will be able to tell if traveling with him is going to work. Best of Luck! Robin
Robin--Travel alone would be great, but I have no one to leave him with the disease has not advanced enough for me to put him somewhere for respite. Mary--thanks for bringing the thread ttt--I'll read it.
Strangely, travel was one of the first things to "go" even before DH was Dx'd. That's what made me suspicious that something was wrong. We had always traveled. All of a sudden he just couldn't handle it. Still can't. As long as we are home; and routine not broken much, he is pretty much okay most of the time. He was Dx'd 2003- and has not declined much since. Still can do most everything for himself, except I choose his clothes if we are going out - he also developed color-blindness. He stopped driving on his own - said his reflexes weren't good enough to drive! I've tried short day trips which are okay - but not overnight - anywhere.
Marilyn, if you can wait until after February 15th for our answers, Joan, myself and others can tell you how our husbands did on the Caregiver Cruise! (February 9 - 14 to the Caribbean)
Our last trip was to England in 2007 was fine, except coming home by plane through Dallas with a too long delay (8 hours after a flight that had begun 12 hours before). I can't relive that experience right now...it's in the discussions somewhere...he got upset, wanted a hotel room, walked off from us, and it took the security police 5 hours to locate him. However, he's a totally different person now, and my 46 year old daughter and I think we can redirect him and all three of us have a great time. AND we've seen that there will be covered in case of any delays! <grin>
My wife and I gave up travel after a trip to Italy in the fall of 2007. She did OK on that trip, but now I would be afraid of losing her in the airport (she goes right through security, while I have to be wanded due to artificial knees and shoulder) One time she came out of the ladies room and turned the wrong way, walked the entire length of the terminal and was walking back when I finally found her. The other problem is use of the ladies room. She is now to the point where I try to go in with her to make sure everything is OK (one time she tried to flush her Depend down the toilet. Boy, did that make a mess). This can't be done in airports, etc. unless they have a "family" rest room.
We are planning a 3-4 week vacation in Missouri visiting our son and famly. Plan on flying non-stop to St. Louis. Son will pick us up and drive us to his home near Branson--about a 4 hour drive. DH will probably be OK with the plane trip and the car ride if we stop and get out--trade seats, etc. The only thing I'm really worried about is that he will get antsy being away from home. I don't think he will understand what "3 weeks" means. I think we'll just play it by ear and 'hope for the best.' So far, he hasn't been unruly in public. He still uses the bathroom by himself. I'll let you know how it all turns out. It could be great. It might not be so great.
We have just returned from a 2 week cruise. We went with friends, who are a big help. We have done lots of cruises, but this one was lots of work for me. Packing took 3 days. The plane trip was uneventful, but I have to watch carefully that DH doesn't loose anything or forget it on the plane.Once on the cruise ordering from a menu was a problem for him. In the buffet line I had to help him decide what to get. For some reason he developed a lot of thirst. No water fountains. He did find the water and iced tea table in the buffet. We had to find restrooms on every level. He seemed to have anxiety about the tours, so we did not do any. We did explore a few places on our own as long as there was not to much walking,saw movies, danced, saw great entertainment. We had great weather, good friends and enjoyed most of the cruise. Coming home, we had to get pre-board passes so I could keep up with him. I know this was our last cruise and will travel again only to visit family. The day after the cruise, seeing the suit cases in the bedroom, he asked me if we were going somewhere. Today, he told me he doesn't remember the cruise.
I could have written exactly what Vickie did. Travel was the first thing to go. Before he was diagnosed we took a trip out of state. He was confused the whole time, started pacing and seemed in a daze. This was when I first realized we had a real problem. As soon as we got back to familiar territory and back in his regular routine, he was so much better. He was diagnosed two weeks after that. It seems that some can travel without problems but others can really get messed up.
I have not posted for some time but thought I would share our experience in traveling to the south of Italy. We traveled with a seniors tour company so everything was arranged by them including limos to and from the airport. Problems started in the plane with my husband struggling to open the washroom door. Luckily it can be opened from the outside and from then on I always went with him and stood outside the door. He found the long trip and changes of planes in Rome very stressful and said he would never do it again. It was a night flight and of course neither one of us got any sleep. The first evening was awful. As soon as we sat down to dinner he started to shake and said he can't stay. He was served his meal in our room. The next day he was more relaxed and we joined the others in a tour of the town where we were staying. From then on as long I was always within his sight he managed quite well. Fortunately we stayed in the same hotel and took day trips so no packing up and sleeping in different places. The interesting thing was that prior to leaving he was reverting back to Italian in his conversations but when we arrived in his home province where I was convinced he would get right back into his dialect he would only speak English! I was able to tell a lot of our fellow travelers that he has AD and most were supportive. Some ignored us which at first was hurtful to me but I decided it was not going to spoil our holiday. The highlight for my husband was being able to have a short visit to his hometown and see the house he lived in 55 years ago. His comment was" the door is different!" I was on edge most of the time and had stomach problems as a result but I don't regret the trip for a moment. We were on the go nearly every day, enjoying the rugged beauty of this part of Italy and its friendly people. We even did a day trip to Sicily which was a highlight for me but exhausting for my husband. This will have to be our last overseas trip but I'm so glad it turned out as well as it did. There has been a little more confusion since we got home and jetlag is still a problem but I'm sure that will pass. He has hardly mentioned the trip and seems content to be back in his familiar routine. Hopefully something of the trip will remain in his memory and if not, at least he enjoyed himself while experiencing it.
Inge, I am so glad your trip turned out well and you got to go. Thank you for telling us about your trip. We are no longer traveling even in the states because dh has passed the point of "being a traveler".
There have been several travel comments recently on another thread and it has prompted me to ask a question so thought I'd bring this thread back up. I had hopes we could make a few more trips before things get too difficult for DH, but the trip we took a few weeks ago really seemed to wipe him out and even possibly "set him back" somewhat. We went to Europe (our first time) and spent two weeks on a cruise down the Rhine and Danube. It was great having the same room each night and a familiar dining room, and Dh really seemed to enjoy himself, even the walking tours. We both were exhausted after the flight home, jet lag and all that . I was okay within a few days, but he has spent an enormous amount of time in the rocker with his eyes closed and has not done anything useful without prompting until the last couple of days. He seems better so I am hoping he is returning to the kind of routine and semi-involvement he exhibited before the trip. I wonder how much is physical fatigue and how much is trying to cope with a return to routine and responsibilities. (He has a few rental units he insists on "managing" by himself.) The first two weeks or so were pretty scary and I was telling myself that another big trip would be a bad idea. I am wondering if anyone else has seen this kind of effect with a spouse and if it turned out to be a permanent decline. DH is already talking about how we should plan another big trip in the next few months but I am really unsure.
try some smaller trips closer to home and see how he does. you will get a feel if he can or cant. when everything is new and strange it seems to wipe them out phsycially and emotionally. i wouldnt agree to a big trip unless you see he does the easy closer to home ones well. divvi
Our single WORSE part of travel and/or just leaving home for a few hours centers on 'going to the restroom'. Behavior can be handled, but not public restroom visits.
We did a 3 day trip about 3 hour drive time to and from. Both daughters were along. I had booked the Hotel a couple months ago before his recent set-back. The trip was really for me as I knew he wouldn't enjoy anything. I had a great time and this was my first vacation for several years because I was caring for my Mother. He didn't really enjoy anything. Really sad. He was good and no unexpected problems. We did go in a local small resturant for lunch. It was very crowded and he wanted to leave before we were finished eating. Actually, he got up and was going - with or without one of us. I think the crowd was the problem. I have a large house rented for 3 nights near a ski resort and our whole family is planning on going. It is about 4 hours away. We will take turns staying at the house with him. My DH is in severe stage. (early)
Crowds are often the problem. Our IKEA recently had a special deal for three weeks: breakfast (already cheap at one Euro) was half price. The place was jammed every morning. For us it was awful. I was really glad when the special offer was over. At airports, part of the problem is that there is no way to avoid the crowds. In restaurants we usually don't stay if it's crowded. I can see his unease and just suggest leaving.
My husband and I always travelled together. He made all the arrangements and I made sure all clothing was clean to pack. Now that I travel alone I appreciate all the work involved. It's not much fun going through all the motions alone. This morning I am packed and ready to fly to the west coast to meet some cyber friends for the first time. At least I am meeting up with my daughter and SIL along the way. Now you all behave until I get back!
Nancy B, Regarding restroom visits when out with my husband, what I have done recently is to go into a washroom for the handicapped with him. They are nice and large. If that is not available I have taken him into the ladies with me in restaurants where the washrooms are out of the way and there are not several stalls. If he has to go to the men's I see that he is very confused and I usually step inside with him and quickly leave once he knows what to do.
Inge, On the trip home from Longboat Key Florida (Sarasota), I never saw a 'specific' bathroom for Handicapped people. We tried the beautiful parks along the FL highways, and a few Convenience Store/Gas Stations. They worked out the best, because I'd just explain to the check out clerk that he needed help ..and since they were one toilet restrooms, I could. It was hot as heck, and we had his dog with us, so if I left him in the car, he could suffocate,.. and I couldn't leave the motor running with the a/c on - "steal my car, please sir!".. so I was in a panic. Usually, the panic included poop trousers and I'd always have to buy a bottle of cleaning liquid like Mr. Clean from the market. I swore NEVER AGAIN...but tried it anyway with a 2.5 hour trip to Austin. Same thing happened again. I'd stop on the hour...but it was usually 5 minutes too late. I will now swear NEVER again.
One demented man, one dog who loves to run away when we're in new areas -- nope.. not going to do it. I was the one that was wiped out after each experience...and he'd be fresh and clean, the dog would be happy (and exhausted from his run) and I'd be a wreck..and having to drive on.. I asked myself, who is the demented one?
Pris, I believe Foster was showing early signs of the disease in the late 90's. His personality changed, he was a mess! We lived in the Bible Belt of South Carolina, and his language became worse than any "sailor's". He couldn't order a cup of coffee without using profanity or making a sexual comment to the waitress (figuratively speaking). He was so different from the Southern Gentleman I married in 1991. He was having multiple TIA's, and the doctor felt that might be the cause of his irrational behavior, (which I hated to even bring up, it was so embarrassing to me).. Then we moved to Galveston..because he wanted to live on a beach. Built a lovely home on the beach and he began to fall. Doctors thought he had Parkinson's, with some Parkinson dementia..and -of course - the stroke history. Then he wanted to move back to the east coast. When we got there, he began to have massive intestinal hemorrhages..causing him to go into shock and not know anything or anyone for 24 plus hours, - so they blamed the blood losses plus the Parkinson's plus the Mini Strokes. All diagnoses were visual, no radiology, no specific blood tests. So..to answer your question.. Final diagnosis was around 2004-2005 (I think)..and aggressive treatment began in late fall of 2005..and early 2006. But all of the above is part of the disease. You don't wake up one morning with Alzheimer's. I understand most people have it for 5-8 years before they are diagnosed. If they had been diagnosed earlier, perhaps the Aracept/Namenda treatments would actually make a difference in delaying the progression of the disease.
You're so right Nancy, about them having the dsease long before being dxd. looking back I can remember so many times, odd behavior and getting lost long before I ever thought to bring it up to the doctor. And I thought I pointed it out early, but not early enough, although it has been a long time since diagnosis. but the books say they can live 20 years after dxs.... holy cow.!
Just got back from a 10 day trip to the Mediterranean region. All went well and DH had a great time, even being very sweet when one day I was stricken with terrible sea sickness in Santorini, Greece! I learned a lot on this trip and will post more about it when I wake up, right now I'm on Italian time!
Going through my husband's files and papers is giving me something of a clue as to how his mind was deteriorating. He retired in '85, at the age of 60. Said he was going to do consulting but never did - he had felt pressure at work so maybe even then there was some mental disarray. He worked on many projects on his computer involving typesetting or mathematics but over time his ability to unravel them got worse. By 2001 or 02 he was starting to be confused by, say, daylight savings time (remember the "Bush" change which started very early). That's when I started to notice him being irrational. He had taught logic, including to me - and he became illogical. Which gave me a clue something was going on - but he wasn't diagnosed until I think '07, by which time he really couldn't cope well at all.
Nancy I had no idea of all the hell you went through in the last ten years. OWWWW!
I am mostly new to posting. I am planning a trip with my DH overseas thinking it might be the last. I am so worried about handling the money, security, remembering everything myself. Even though we are doing a tour, I know he will enjoy it but can I. Marilyn, I'm also from Maryland and would love any pointers.
Thanks Nancy. Looking back I now realize that the illogical thinking, cognitive failures and "episodes" of anxiety and anger were part of the disease. Wish I'd known so I could have gotten a DX much sooner, especially to have had him on Seroquel. We're going to try another trip, first since meds, after Thanksgiving, with as little confusion as I could think of.....just a limo ride from Sarasota to the port in Tampa for a short 7-day cruise on a small ship he's familiar with. I can handle the memory stuff, but not the angry confrontations that occured several times earlier in the year or the inability to follow sequential directions. We gave up land travel awhile back, but he's spent almost 350 days on cruise ships in the last 6 years and the layout of the ships we sail on are pretty much the same. In other words, he feels very much at home on a ship, so I'm hoping this little trip works out. Especially since I've now accepted the fact that he doesn't want (nor is he able to) socialize with new people. There's no way he can keep up with any in-depth conversation and he'd rather avoid situations like that. This is a trip to see if the angry behavior has been controlled. It has here at home, so I have hope.
PrisR., Are you going on the Legend? We're going on her November 15th. Step-son is driving us over - if he doesn't forget. I'll start reminded him two weeks ahead. I already have a back-up.
No, we'll be on Holland-American RYNDAM on Sun. Nov. 30. We take HAL an dPrincess, especially Princess becuase we've reached Elita status and get all sorts of great perks, like free laundry, free internet, etc. Ding RYNDAM because it leaves out of Tampa and I don't have to worry about the return Cruise Connection bus when returning from Ft. Lauderdale. His impatience while waiting for the bus to get there is something I can do without. Where do you live?
PrisR., We live in Bradenton, We've taken the Cruise Connections bus down south several times and yes, it's a pain waiting for it to come on the return trip. This is our first time leaving from Tampa. Be nice not having to leave so early in the morning.
Abbygail--Sorry it took me so long to respond to your post. I'm just not myself until the jet lag is gone!
Re your comment "I know he would enjoy it, but would I." Here's my answer--yes, it is a lot of work for one person to take care of EVERYTHING. But in reality, that's what we do at home anyway. Depending on where you go, the money issue isn't so bad--you can use credit cards as much as possible (Capitol One doesn't charge exchange fees); you can use ATM's for cash; and if you are on a tour, I would tell the tour company and your guide about what's going on. I'm sure they would be as helpful as possible. I am determined to give my husband as many opportunities to travel as I can, before the ability to do it disappears. I think it is a great diversion for him, and although he doesn't retain any of it, he enjoys it in the moment.
Please look at the thread "Cruising With My AD Spouse". Also, where in MD are you? Tell us more about your situation, if you want to.
I believe the one BIG issue that affects traveling with groups and abroad is incontinence. A tour group cannot wait while we clean up poopy pants and public restrooms are different in France and Italy than around here. I cannot imagine standing in line to go into the small restrooms, manned by a bored attendant sitting in a chair with 3 sheets of toilet paper to pass out... and a bowl for tips next to her. I hope those of you who can travel, should. Keep those memories alive.
I agree, Nancy, that bathroom issues will put an end to real travel. Interestingly, on this trip, bathrooms were actually more accessible to both of us simultaneously, because of the abundance of unisex setups. He doesn't need help from me, but I had more of a comfort level when I could keep him close by while I was using the facilities.
I'm in Silver Spring. My husband is newly retired and still drives short distances. I am working full time. Just adjusting to the complete change in our long term plans--like traveling freely. I figure the tour will at least give me someone to talk to. He doesn't talk much anymore and sleeps quite a bit. I am not through the lonely part yet--lonely and anxious with a pit in my stomach waiting for the next thing I have to handle.
There are so many adjustments--but you will get through it. Working is a good thing--it will give you another outlet and respite from caregiving. I was 6 yrs retired when my husband was dx, on a gov't pension that would be reduced if I earn a decent wage, otherwise I would have considered going back to work, if for no other reason than to give my life some "normalcy".
abbygail, if your husband is still driving NOW is when you do your traveling. The reason is that if he is aware enough to still drive safely, he is aware enough to make traveling possible. Do it NOW.
Susanhere ... if you're still reading postings, I'd be interested in learning what you decided to do. Are you planning another trip? We also took that lovely European River Cruise ... 2 years ago. In fact, it was my wife's confusion during that trip that led me to bring her to a neurologist shortly after we returned! i had seen some distrubing signs for a year, but on that trip, wow ... she was just mixing up recent events all the time.
Anyway, we just returned from a 16 day trip to South America. We had 2 more major trips already booked for 2010 but have already cancelled the one to Australia/New Zealand. I'd like to also cancel the other one, but my wife REALLY wants to go on that one (Israel/Egypt/Jordan) so I agreed that we'd take that as our last major trip. We'll still travel ... but from now on, only by car. During our recent trip, my wife exhausted herself each morning and evening trying to find things in our hotel room ... whether it was a comb, her meds, a hat, whatever. She was always leaving things on the bus or in restaurants. I was stressed to the max because I was trying so hard to concentrate on where she was putting things so I could remember to tell her when she'd forget. Airport waits, and airplane trips, were very difficult. She was getting confused/lost when it came time to use facilities, etc.
I've read all the postings here and, obviously, everyone must do what everyone must do. As I said, we'll still travel ... lots of driving trips to Canada we want to take ... and to other places. But I think that travel by plan is over after the next trip ... and long trips anywhere are forever gone for us now.