I'm a tad more awake now after much caffiene, so I'd like to post about the cruise we came back from last night.
Since Steve's dx 4 years ago, we have taken several big trips, but this was by far the best we've taken. We took a Royal Caribbean cruise out of Venice (7 days), added 3 nights pre-cruise. I think it was more successful, frankly, because I am in a better place emotionally now, and although he requires more assistance than in the past, I am used to giving it.
This time I took a letter from our neuro., modeled after the one on this site, and I showed it to people when appropriate. Just having the letter with me gave me a little more confidence that I could handle any touchy situations, if they were to arise (they didn't). For starters, this time I told our travel agent about his illness--I don't know if this was the reason, but she was able to get us a free upgrade from a junior suite to a grand suite. The best part about that was that we were provided concierge service, which I would recommend to anyone in the caregiver role. Several issues arose during the sailing, and the concierge bent over backwards to resolve them (noise in the bar area above our cabin, renting a tux last minute when we were invited to dine with the Captain, sent a bottle of champagne for Steve's birthday, reconfirmed our flight, made dinner reservations, etc.). My feeling is, if you are traveling alone with your spouse, you have enough to do on a daily basis without adding in navigating the hassles that come with travel. Yes, it is more expensive to stay in a cabin with this service, but bottom line, it's worth it.
Another change I made this time--I hired a driver to take us and pick us up from the airport. When we go to Europe, we usually fly from Philly, which is a 1 1/2 hour drive. I decided that anything that makes the whole thing easier for me would be worth it, and as it turned out, our flight leaving Venice was late, there were strong winds, and the flight took over 10 hours. I was so glad I didn't have to drive home!
I hadn't given any thought to the physical demands of the places we visited, something I will do in the future. Right now, Steve has very minor coordination issues, and is in great health (other than the AD) so he was able to navigate all the steps in Venice, walking on cobblestones and marble all over, considerable up and down stone steps in Dubrovnik (Croatia) crawling around in the ruins in Ephasus (Turkey), constantly stepping in and out of small boats while they were rocking, etc. I daresay that in a few years from now, this type of trip will be too hard for him. It's quite a different mindset for me to develop, since we have always traveled as "young" and healthy people, in good shape physically. To my great relief, when I was miserably seasick in Santorini (Greece), he was as sweet as could be and fell back into his old role as my caregiver!
The whole time, I deliberately slowed the pace of the activities, and also, used room service extensively for breakfasts and lunches. Even so, we managed 5 shore excursions, went to two shows on the ship, and went to the dining room for dinner all but 2 nights. We ate at a table for 2 in the dining room--that way I could cut up his food, butter his roll, without others observing closely. When we ate at the Captain's table, I ordered things that were easy for him to eat independently. My husband had a ball, was cracking jokes and mixing well with people, and I was so glad that I decided to take the plunge.
P. S. Due to the noise problem, the cruise line gave us a 50 percent credit of the cruise cost, so it looks like we'll be going again!
Congratulations, Marilynn, that sounds wonderful. What a good deal you got!
I can really back you up on hiring a driver to the airport. I did that for a trip last week and will be sure to do the same whenever we fly. It was a great stress-reliever and worth every penny.
Go to the home page, left side, to the travel section. Click on it, then scroll all the way down once that section comes up. I emailed the wording I needed to our neuro, and he also added that Steve presents as much more intact than he actually is, but if he becomes confused, I can easily orient him. I think it was especially helpful because he has EOAD, and people just don't "get it".
Marilyn thats wonderful you had a really nice cruise with DH. sometimes you just have to try to see how well they do! too bad you were sick in the most gorgeous of all the ports Santorini. save that for another voyage:) divvi
I know, Divvi, but I may just have to be content with looking at pictures. We got off the bus at Fira, did get to see a little of that. But we never got to Oia, at the top of the mountains. I tend to have motion sickness easily and even if the seas hadn't done me in, the bus ride to Oia may have!
So glad to had a great time. I second the going the extra bit for a suite with the help. We have always gone on Oceania and had a penthouse suite with butler service. We have been fortunate to get in early for better prices..great travel agent! Last November I couldn't have managed without that service as Garv would get the cabin TV screwed up all the time. Our "guy" was so patient with him. We also ate dinner in the cabin a few times..beautifully done by our butler.
Marilyn, I am so happy that you had a good time! Thank you for sharing! We had a suite and butler when we took my husband on the caregiver cruise in February. Couldn't have handled it otherwise. The nice butler brought breakfast every morning to our balcony. It was heavenly!
I want to take that cruise that you just took - AFTER. My list keeps growing. I'll have to live to be 95 and in VERY good health, and have a good income to do all that I want to do AFTER. It is what keeps me going in NOW. <grin>
Forgot to say above that the only thing I'll change next time is to try to fly first class. Going to get to work on having some air mileage restored to our accounts, so that something can be worked out. In earlier years, when we traveled more frequently, DH always managed upgrades. Sitting in the airport on the way over, he still wanted to "talk his way" into first class. I was impressed that his old habits on this resurfaced, but I had to keep reminding him that we had already checked at the counter and first class was full! This trip cemented the impression that I had of his personality in the middle stage--it has returned to the way he was pre-dx--easygoing and happy. For those of you whose spouses are still in the early stages--there is hope that your "old spouse" will return and isn't gone forever.
Sounds like a great cruise! Mary and I took three cruises while she was still able and they are now great memories. I hope you took plenty of pictures because they help preserve these good times. On a personal note, were you and Steve in the young onset group at the Alz Assoc in Timonium? If so, you know Mary and me.
Yes, that's us. I've always wondered if you were the same couple--how are you doing?
Re the pictures, I did take a few, but also bought many postcards and plan to do a scrapbook with all the mementoes, etc. I had to keep telling myself that not losing Steve was priority #1; priority #2 was keeping up with the guide(s) on the excursions; priority #3 was not falling or having him fall on all the uneven surfaces; priority #4 were pictures!
Yes, we are the same couple. I remember the last night when Lisa asked for a volunteer to collect the feed-back forms and Mary and Steve both volunteered. You kind of commented, under your breath, "Great, the two who are least able to remember what they are supposed to do." That about summed it up.
It's been a couple of years, and Mary has deteriorated pretty far. If you recall, her communication was about nill when we were in the group. She is now unable to follow spoken instructions and is generally unable to help with her own care. I am looking into assisted living but have not made any commitments yet. I was going to post something about all this on the web site, so I won't go in to it now.
It's good to hear about your successful cruise. I envy you.
I am so interested in this thread. We are taking a family cruise on Norweigan Star from Seattle to Glacier Bay in July. We will be celebrating our 60th anniversary and we are taking our entire family. I gave everyone a year's notice and sent them each "save the date" cards. Everyone RSVP'd and are looking foward to it.
It seems to me that a cruise with the family would be rather 'easy' for DH. And for me.
Any tips? I'd sure appreciate any words of wisdom.
Bob--So sorry to hear about Mary's deterioration. I will keep an eye out for your postings on the assisted living. Thanks again for contributing the sample travel letter--it was such a good thing to know about.
Mawzy--Your cruise setup sounds ideal--since you will have family aboard, be sure to take breaks from caregiving and let them tend to your husband. One thing I've noticed, I'm more tired after coming home this time than in the past. I think it's because at home I have an inhome helper and daycare to give me breaks; on the trip, it was 10 days with no chance to completely relax.
Mawzy, I make sure I always hold Dh's hand when going anywhere. With all the people on board, it would be so easy to get separated. I almost paniced once when I got on an elevator and the door started to shut before he got on. Thank goodness he got in o.k.
I started taking my dw on twilight cruises in a rowboat...At dusk, we row to the middle of the lake, then she swims back for excercise.... She loves it and says that the only hard part is untying her hands and getting out of the burlap bag......
Phranque, if you are going on that cruise in feb with your wit and humour you will have all the ladies at your table in stitches! good for you, so many of us need some laughs and enjoy your humour:). divvi