Nice to hear from you in the middle of your travels. Your statement "The problem isn't so much the trip as that one still remains in the caregiver/attentive role." was so on target with what I was thinking when I was away alone in DC. As I was walking around my hotel room, I was actually thinking, "Gee it feels good to have a vacation from always being "the boss"; always directing; explaining; reminding." I only had myself to remind what to do - it was a well needed respite.
We are back from our trip and I found it to be a disappointment. First of all, the travel letter worked like a charm and got us pre-boarding. In the hassle of getting up with the ticket, our two carry ons and taking Mary's hand, I forgot our two jackets that we wore to the airport. The strangeness of the trip set Mary back considerably to the point where she got confused in the bathroom and later in the trip would get a confused look on hher face and begin crying for no apparent reason. When we got to the Grand Canyon, she got off the bus and just cried and tentatively walked along with me. She became very tentative about her walking and wouldn't do escalators at all. I became very adept at finding the elevators for the handicapped. In short, the duties of caregiver at this level pretty much kill the fun of the trip. I've pretty much decided that this is the last trip, but I am mourning that decision because this is much of what I looked forward to in retirement.
She is still not her old self and has periods of confusion and upset since we've been home. She is getting better and, hopefully, this confusion will abate.
Fran, had it snowed when you went to the Grand Canyon? The day before we went there ( last Wednesday) it snowed 8 inches in Williams and the temperature was 47 degrees. Since we had lost our coats in the airport, the first stop was the gift shop for Grand Canyon Railroad sweatshirts. In other words, if anything could go wrong, it did. Enough said.
I'm so sorry your trip didn't go as you had hoped. Did you write a letter to the airport and see if your jackets were turned in? There are still honest people in this world, and there is always a chance you could get them back. I hope in years to come that you will be able to remember the beautiful vistas that you saw together, and that she was with you when you viewed them when you look back at this trip, instead of the problems you encountered. Our trip last summer was great until the five hour nightmare at the end when he was missing at the Dallas airport after having been up for 24 hours and the last ten without food. I purposely said "never again" as to a trip and concentrated on the fun we had had for two weeks in England and Scotland.
That said, it HAS been a year, and this weekend I'm trying a 5 hour drive to visit a couple who have been our best friends for 35 years. We always played bridge and went on wine tours and sightseeing together, as well as our Alaskan cruise, which was fabulous. Now the three of us will sit around and talk and catch up, while my DH watchs DVDs and smiles and says okay occasionally. I really miss the good ole days!!!!!
Thanks to the advice from several of you, I am taking the letter, the seat belt medical alert, the DVD player and several DVDs for him! Thank you all!
Baltobob - No snow at the Grand Canyon. We were there a few days before you. There were some controlled burns or maybe wildfires so the sky wasn't blue. The most beautiful part of our trip was at the Grand Tetons - snow right down to the highway in places, but the weather was warm and the highway travel just fine. But, I know what you mean about being disappointed. Last October I left my jacket at the Denver train station and am still so mad at myself I refuse to replace it! It seems harder and harder to be the one who has to remember EVERYTHING! I think you are in a stage further along that we are. I am still thinking about going on the AD cruise next winter. It would be wonderful to be in a place where everyone understands. I am just thankful we live in our motorhome and see new places that way, but organized group travel is probably in our past. I am stubborn and hate to give that up... One thing I have done is taken photos and I transfer them from the camera to the computer (it still amazes me I learned to do that!) and I can put them on slide show for my DH to watch. He seems to enjoy it, though I'm not sure he actually remembers being where these pictures were taken. In a few minutes I am going to a Caregiver Group near here where I met women 18 months ago. Hank's daughter is taking him to a nearby sculpture gardens and I sort of feel as if I am out of jail for four hours!
That was probably the hardest part of the trip -- being the one who has to remember everything! As we were on the trip, I began to question whether she is farther along than I had believed and if I was in denial about how far along she is.
Today, she got up before I did and sat in her rocker and cried. Later in the day, she cried again but when we went shopping, she was fine and even laughed at my antics. This is similar to but not as bad as her behavior in November and December after her knee surgery and 2 week nursing home experience. I only hope she snaps back to her normal happy self.
Routine, routine, routine. AD patients thrive on predictibility and routine. Travel throws that way off, and as a result, they generally become very agitated. I don't mean to make light of this at all, but be thankful that your wife cried instead of raged. We had one very close call with a TSA agent one time - Sid decided to ARGUE with him- I thought we were both going to land in airport detention, but I explained my husband's AD situation, and he let us through.
We had another "incident" going through cruise security last January. I managed to make him sit and calm down before we were able to continue through the line.
He always gets upset when, as he says, "I don't know what to expect. It's the unexpected. I don't know what to expect." Only with him, I can see the rage building, and I try to head off a full blown explosion.
When we went to RI in April, he was absolutely happy and perfect because............familiar family; same hotel as last time; same airline; same everything. No problem.
It will take a few days, but once she gets back into her routine, she'll be much better.
Yes, Joang I was so afraid that DH was going to rage at the TSA but gratefully he did not. Normally when he rages it is all directed at me but onlookers sometimes try to intervene on my behalf. I realize that this trip to Las Vegas was probably our "last hurraugh" and tried to squeeze as much into it for him as I could. We have been married for 4 and a half years and had planned to cruise the panama canal and alaska but I see now that with his medial mobility problems and now the AD it is just too much. I have the utmost admiration for those of you who are taking traing trips.
I so wish we had gotten in that one last cruise to Panama. It was one he really wanted to go on. I was all set about a year ago to make the arrangements and he told me he had had a few dizzy spells (probably pacemaker related). If I had gone forward we might have been able to do it in early November (last year) when he was a lot better than he is now.
Starling, I know what you mean. I had booked a cruise to egypt and crete last year, and cancelled because I didn't want to go alone with him.... so sorry I did. He always wanted to go to those two places, and now we wont go. We are planning to go on a cruise to Alaska with my DD and family in August, but who knows. We cruised with 3 other couples in February, but he got sick, and spent most of the cruise in the room ordering room service. Thank goodness I had booked a balcony, or he would have gotten no fresh air at all. We used to travel so extensively, and I think back and say, thank goodness we went then. Fran, we had taken an American Orient Express RR trip from Toucson several years back, and it was terrific. We went to the Copper Canyon, Mexico at that time. The part of my August trip that I worry about is the flight to Seattle from NY. I'd love to have that letter also. I did book business class (frequent flyer miles) so at least we should be comfortable.
PS I find he gets really agitated if there is any delay, like we have to wait on line. He would do it so much better than the government, and he makes sure everyone on the line knows that. Of course, he always knew better than anyone else, this disease just seems to magnify those little personality flaws we used to be able to ignore, and diminishes the ones we loved. scary isn't it./
We had planned to take a cruise for our 25th wedding anniversary this April, but I knew that the change would not make it a fun time so I never booked it. I'm so glad I didn't because our 2 week trip up north to a place we used to live, people we knew, etc. really threw my husband for a loop. He still hasn't gotten back to where he was...not sure who I am at times, becoming very agitated in the house, afraid I'm going to leave him...I can't imagine how he would have been on a cruise ship. One more cruel blow in our plans that AD has made!
FLgirl, When you say that the trip threw him for a loop, I know exctly what you mean. My DW still is not as oriented as she was before our trip two weeks ago. She wakes up crying, was disoriented today in Church ( I had to take her by the shoulders and turn her away from the priest after communion and then she didn't follow me into our pew but went into the one behind ours.) I would never have imagined that this trip would cause a cognative set back. I, too, am disappointed and angry that our trips seem to be over. We are retired, the kids are married and out of the house and normally, we would want to travel as much as possible.
Ditto on all the cancelled traveling. if I am wanting to get away even for a couple of nites i will have to hire the agency aide to spend the time with DH and pay out the kazoo. i still am wanting to make a two nite trip to vegas during the summer with a girlfriend even if i pay. i havent had ever had a free nite away from husband in over 10yrs. ihave to just make myself go. Divvi
I haven't checked back to all of the posts to see if I mentioned this to you, so if I have, I apologize for the repetition. Give some thought to a Caregiver Cruise - just for YOU and maybe a girlfriend. Depending on the State and city in which you live, you should be eligible for a certain number of respite days a year. Call the Alzheimer's Association to find out about respite for your husband in your area. 800-272-3900
Patrick Toal, from the Caregiver Cruises, is coming to visit me in July - he'll have lots of information for me. But in the meantime, click on http://www.openseastravel.com/ and check out the information on the cruises.
I'm planning on going on the one in February 09, and will be giving a seminar on spousal issues. And eating, maybe snorkeling, a little sight seeing, gambling, onboard theaters.
Well, we are back from our weekend trip. I took everyone's advice and had the medical alert strip on the seat belt (by the way-add your health insurance information-it doesn't ask for it, but if you are unconscious, it will help the medics), snacks, and the DVD player with his favorite DVDs. The travel both ways was great! He watched the movies and was content. He enjoyed seeing our friends, but couldn't hold on to the "normal" that he tries to portray around others. I had to follow him when he would go into another part of the house because he wasn't sure what he was looking for. My problem was lack of sleep due to having to change out movies every two hours all night every night. He couldn't work it by himself.
So, for our trip to Houston, I am making certain that the guest bedroom has a 5 DVD automatic changer and a TV connected to it so I can sleep! Having to be on my toes constantly and the lack of sleep has me saying that I prefer that they come to visit us. I don't have to be on my toes as much. I didn't get to enjoy the visit as much as I had hoped. I'll see how he does the next two days. Usually he is in a daze after a visit FROM them, so I expect one after a visit TO them.
I am planning on going on the cruise with Joan in February as well!
I HOPE we are going to be ok traveling. After spending a month in one place, I've put together 8 stops in June to get to our destination in Wyoming. Two of these stops are at Colorado State Parks where my DH's son and DIL are joining us. This is what scares me - today we came less than 100 miles. My DH is very confused at how we got here, where we are, and what we are doing! He doesn't seem to remember that we drove here! He just can't figure out that we are in NEW Mexico - not Mexico! I get first prize for being so patient today - explaining over and over, which all of you can understand I just wish it didn't matter to him where we are, but he frets and frets. His whole life he helped others and now that is SO gone. However, Joan, our dog still sits in his lap! I'm thankful we have a green car that shows up so he can still take her out and find his way back.
I'm very torn right now. We are set for a transatlantic cruise from Barcelona to Miami in November. I have a final payment to make in August, thus the big decision time arriving quickly. Both of us really want to do this, Garv is just assuming we will, but ??? The good thing is it is on a mid sized ship (Oceania Cruise Line) and we have gone on others before so the ship is very familiar. If we can just GET to Barcelona without incident....we are upgraded to Business (he won't travel any other way..being 6'6" is a problem) I think it will be okay. i liken his comfort level to a cocoon effect...and the ship would encourage that, i think (hope?).As someone else mentioned, it is the unexpected stuff that triggers problems...when we were leaving Argentina last time, we were hit with taxes and he blew...with two Argentinian Militia men right in front of us...guns at the ready. i managed to get him calmed, but a bit scary for the moment. With his Cardioinverterdefib implant, he has to always be patted down...more often than not in a different country he has had to show THEM what needs to be done...which he just loves. As long as his humor is intact, it works. All this said, I haven't a clue if we should go. Even with travel insurance, we'd lose a ton of $$$if we cancelled..which we can ill afford now. Oh well!
I have been where you are many times trying to decide if DH can still travel internationally. on another thread you said you think he may need an antidepressant. if so, get him on it now, and have that under your belt so you dont have to start any new meds close to the trip! AD/new meds/sideeffects/travel is a combustive mixture. you want to know he is doing well on his meds new or not before attempting to fly that long and on a ship. i know on the cruise we did 7day caribbean a couple yrs ago the Royal Caribbean had a wonderful hospital so i felt comfortable just in case. i guess only you who is around him all the time knows if he can make the trip comfortably. but just in case you may want to consult his drs since all the other added medical issues on top of AD? they can give you that all so important 'letter' of AD diagnosis if its ever needed to help get him thru the checkpoints etc easier/ if at all feasible i say go for it! there will come a day all too soon you wont be able to go anymore, my DH travel days are over now and its depressing i will have to go without him if i do go again. bon voyage! divvi
We have always loved to cruise. Actually, I find that I have a lot more patience with DH when we cruise. I'm sure it's because I don't have chores to do or get ready for work. He has my undivided attention. We do stay together all the time and I order for him, which I do when we go out here also. He always seems to want whatever I have unless I know he won't like it.
Thanks for your help...he doesn't have any problems yet with daily routines such as dressing, bathroom use, etc. i wish I knew what stage he was..and all those initials? I have no clue what some of them stand for..dumb and dumber here, I guess. It is the unkown and unexpected that sets things off...i will talk with his Doc about some calming meds..and..the letter thing? Never heard of that, but what a great idea!
I must say that since I first started with this forum, i feel better than I have in months, and that is reflected in how I react to Garv. We haven't had a nasty blow up in several days..amazing, if short term. Muchas Gracias
Kathi, two good web sites for any and all acronyms that people use ...
http://www.netlingo.com/
http://www.webacronyms.com/
If there are particular ones that we're using, and driving you nuts, let us know! :-)
Stages, go to: http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp
Baltobob, I think, gave us a sample letter to use, to ward off problems when we travel. I can't find it right off the bat, gotta go fix dinner ... ask Joan for a copy, or let me know if you can't find it and I'll do some more looking when I have time.
Last Feb. I mentioned that my wife and I liked to travel, but could not any more because I was afraid of losing her in the airport. Carewife suggested that I try a bus trip with another couple. Not long after that some new friends here at our retirement village asked us to join them on a bus trip to Quebec, following the route of Benedict Arnold in 1775. We leave Sunday morning (from our village, so don't have to drive anywhere). I don't know how DW is going to do - she has periods when she needs to go to the bathroom NOW. She also gets very tired at times, particularly at the end of the day. Fortunately, one woman friend of ours is also going and will take care of DW when she has to go to the ladies room. She seems to have fun when things are going on, but doesn't remember any of it afterward.
Wish us luck on this trip. It will probably be the last one we can take.
Marsh, you should have a lovely time; it's not too far from your end of Maine. I assume it will be COLD. But beautiful!
The big coaches have toilets in them but they are much too tiny to hold more than one person. I used to sponsor day trips to NYC and every now and again a kid or an older adult would get themselves locked in and not be able to get out. I had to calm them down through the door and coach them about what to turn and how. Is there any chance you can persuade her to wear "astronaut underwear" (i.e., depends) ? Or are they going to be willing to make stops?
marsh, I'm so glad to hear you are taking this trip. I have found that my husband still enjoys travel, and even though he doesn't remember where we are or where we've been, he does enjoy it while we are there. I will not travel alone anymore with him. We just came back from an Alaskan cruise with my Daughter and her family. We went to Vermont with our son, and we look forward to cuising in the Carib in january with friends of 40 yrs. After one experience at the airport in Santiago chile, 2 winters ago, however, I realize how important it is to have support with me. Glad to hear you are going with some friends. It makes the trip less stressful for you. Have a good time.
Chris r...We had an "interesting" experience in the Buenos Aires airport, Santiago went smoothly..we were alone. Our November trip we are alone also, and I am already getting cold feet, but no help available. I'm having airport nightmares around 2:00 AM.
My fear is that he will get lost in a foreign country where people don't speak English, and my cell phone doesn't work. That's what happened in Santiago airport. Fortunately we found him. he just disappeared into a men's room, so quickly, whoosh, and he was gone. and when you are walking toward the gate, you don't always notice right away. When you are with a few other people who are also on the lookout, you have a better chance but they are worse than kids when it comes to disappearing. Nowadays, when we travel, someone always takes the sweep (grin), in other words, he or she catches the stragglers.
chris r I can relate to that totally. Can you get one of those "tracking bracelets" on him, if you don't already have one? I don't know if they work in a foreign country. When my husband was still walking in WallMart, etc. I would take my eyes off him for a second and he would be GONE. Like you said, just like a kid. Used to scare me to death in WallMart.
I am envious of you all, don't get me wrong, I am glad that you still can travel with your spouse and I say go for as many trips as you can now, don't leave out one place you have always wanted to go together. My husband and I did get to go on some trips that we had always wanted to visit after we ret ired for about three years until he became seriously incapacitated with his illness. Howewver, we wanted to go on a cruise which we didn't get to do, and we wanted to take a train trip across western canada. I now read about your plans and envy you because you can still plan and enjoy your spouse with you. Be sure and relate all about your trip when you return so I can vicariously enjoy your fun.
I did get to go on a vacation with my best friend, a widow who is a life saver for me. I would be very lonely without her. It just isn't the same though without my sweetheart with me to enjoy the trip. I would love to be able to go with you all who are going together on the cruise so know I will be eagerly awaiting your desc ri ption of the activities.
I prefer to travel with a seniors group for all the reasons mentioned. That way my husband can go to the men's room with other men from the group. There is usually one kind soul who will keep an eye to make sure he comes back with them. We are planning another trip to Italy in March, all being well. It is somewhat stressful for me but so far has been enjoyable for him. Luckily this tour company does not expect us to be ready for day trips before 9 AM so his routine can stay pretty much the same. What I found during the past 2 trips is that the women were generally more helpful and understanding of my husband's problems. Maybe I'm just too sensitive but I did have the feeling that some couples deliberately shunned us after seeming so friendly at first. I have decided it really doesn't matter if we sit by ourselves at dinner. We will nevertheless enjoy all that this beautiful country has to offer.
Several of you have asked how our trip to Quebec went. Overall we did well. My wife seemed to enjoy it and was right up front when the guides were speaking. She interacted well with the others on the trip, even the ones she did not know. A couple of times I had to ask one of the women to check on her in the ladies room. The only down side occured in Quebec when she tripped over a grating in a market, landing on her face. She got a large gash over one eye (but did not break her glasses). I took her to the local ER (with another person on the trip who spoke French). They took the basic information in about 1/2 hour, but then we sat, with her bleeding, in the waiting room for 5 hours before seeing a doctor (family practice resident) who sutured her up. I was getting so upse by the delay that I asked them to give me a suture set and I would do it myself. One woman there told me to remember that we were in Canada and they didn't have enough doctors. On top of that they charged us $692 for the care. The next day she tripped again over a curb outside our motel room and hurt her arm. I did not want to deal with the Canadian system again, so waited until we got home. I took her to our local ER where she was seen, x-rayed (no fracture), and sent home in 1½ hours. In spite of these falls we both enjoyed the trip and chance to interact with others. Also, the food was good!!!!!
Marsh, I'm sorry to hear of your bad experience with the Quebec ER. I hope the woman wasn't speaking for all of Canada when she made her comments. Some months ago I went to the ER in one of our most prominent trauma centres and though my case was classed as non-urgent I was seen within about an hour after triage. Maybe you hit a particularly busy time. I hope the experience didn't throw you dear wife off too much and am glad to hear you enjoyed the trip despite the mishaps. We will be taking the train to Quebec City in October for a couple of days. I'm a tripper too so will have to watch myself. I hope your wife is doing O.K.
Marsh, glad you enjoyed your trip, i know too how the ER can work there i had to go in Banff on a skitrip with strep throat. ugh, it was horrible waiting so long. glad DW is ok, happy to see you posting again! divvi
Marsh, I'm so glad you were able to enjoy the trip with your wife, even though she had her falls and the horrible experience in the ER. We all have to remember the good moments on the trips now. Thank you for letting us know.
We just returned from a three night visit to NYC to visit our daughter. I am now wondering how much longer we will be able to travel. The bathroom difficulties are getting worse. I had to go into the men's room in the Newark airport because my DH was calling for me. It seemed to happen so fast but he doesn't know what to do, ie pull down his pants and sit on the toilet, etc. At our next stop I was able to find a family restroom. Those are great.
DH is talking about a cruise to Alaska. I'd love to go but am a bit nervous of taking him by myself. He's pretty good but gets antsy and contancerous every once in a while. Our daughter and her husband would love to go with us so I'm thinking of doing that. He also has talked about going to Hawaii but I don't think I want to do that. Too long on an airplane.
We will be going to Missouri about Easter and we're both looking forward to that.
Marsh, I have macular degeneration and really can't see well any more. After your DW's experience, I promise I will be very careful, especially with those concrete bumpers in parking lots. Can't tell you how many times I've tripped on those but have not fallen so far.
The bathrooms are a major problem. Mawzy, I tripped on a concrete bumper, fell and broke my leg. So be careful. I think having someone along would solve a lot of problems for you.
It was always a huge relief for me when my SIL and BIL accompanied us on trips. i felt much comfort knowing they could care for DH if i needed a break and or got ill. if its possible, i say opt for companions to help you out-divvi
We are going to H family reunion tomorrow. It is a 2 hour drive and daughters are taking us. I debated about doing the trip but he wants to go although he said it will be a hard trip for him. He has 4 older living sisters and everyones health is bad. I hope I can keep him from sleeping while we are there. He will not do much interacting.
August 10th is coming too fast...RK and I will be flying LA from Seattle...spend a night at Hampton Inn....then Fly Air New Zealand non stop to Heathrow....then take a limo to Southhampton to board the Crown Princess for 14 days around the British Isles. We are going with our best Travel buddies. But I know the flying part there and back will be the toughest part. I also assume this will be a last cruise. His reaction to the Exelon patch has produced some great reactions...like talking in a social setting and far more relaxed in airports....and no stomach issues at all. We just came back from Tampa...went to grandson's bar mitzvah......home for 5 days...then off to West Bloomfield Michigan for 14 days where my sister and RK's 2 sisters live....busy beyond belief. Grateful for a 5 week respite.....when we get back from the cruise....no more trips come winter and reality sets in. Hugs to all...Joanne K.