Hello everyone I am new here but already love this site. My husband John is 61 with cognitive impairment and memory impairment due to TBI. Has been struggling for about 4 years. He will be retiring from the pastorate at the end of August because of his condition. Was looking for a place to get wisdom concerning how to deal with all that being a spouse in this situation involves when I landed here!
John's brother and sister-in-law have offered to take us on a cruise to Alaska at the end of September. John's problems are similar to what I would think of early stages of AD. He's not argumentative or combative. He just forgets a lot, gets disoriented, asks me questions about when this is going to happen and whether he did something. Gets a lot wrong. Doesn't do well in stressful, fatiguing or "busy" situations. I worry about him in the airport. [flying from Indiana to Seattle]Also about being away from his doc. He occasionally has seizures. There will be e-mail access but no phone.
What are your thoughts? Have you tried something like this with your spouse?
chrisS, Welcome. My husband has AD and we have been on several cruises since his diagnosis. We travel with another couple which simplifies things. The main thing on a cruise is to relax and not try to do everything. Also, someone should be with your husband at all times so that he does not get lost. On air travel, I always explain to the gate agent that my husband has a disability and has to pre-board and I must go with him. So far, that has solved a lot of problems. Since your husband is in early stage, I think you would enjoy the cruise. We always get room service in the morning. Good Luck.
Welcome ChrisS! as you will find we are a friendly group-(usually:) who gives lots of good advice/handson tips/ and lots of listening when folks need to sound off about the ordeal of caregiving for an AD/dementia spouse. there are various threads and topics on traveling with AD spouses here with good input for you. i will try to find it and bring to the top (TTT) for you =i hope you join in the lively discussions and will find lots of new friends here who know exactly whats ahead and have walked the walk and will rewalk it with you anytime you need some help along the way. we have our 'veteran warriors' who have lost their spouses and are here to encourage you newbies and offer sound advice from their own experiences as well as many of us who are still int he rights of passage on this journey. some of us are entering end stages aswell. everyone needs a listening and helping ear for support. divvi
welcome ChrisS ,I took a plane with my dh in early ad , it was a awful, he got confused tried to lock me in the bathroom, a man was walking by and calmed him down, I had to go and tell the girl at the gate he has alz. she made sure we got on the plane first, he then calmed down, I was afraid they wouldn`t let us on the plane, but then like they say if you see one ad you seen one ad, they are not all alike, your dh may do just fine it is hard to say. others will come alone and give advice I know alot of them did vacations with loved one
If you tell the ticket agent or the people at baggage check-in at the airport that you need a wheelchair, they will send one with a agent who pushes it. (That's their JOB! and I tip them $5.00 usually) They assist your DH through the Security Check In, which is quicker and easier and stay with him . Even if he DOESN"T need the wheelchair to walk, do this, and it will be so easy. They will stay with you until you reach the gate and also meet you at the end of the flight with another agent w/chair (Remind your flight attendant before you land that you will need a wheelchair. There is always a medical staff on the cruise, and our trip was wonderful. He chose to stay in the room (earlier stage) and look through the balcony door at the spanse of water, which he loved. We took movies that played on the DVD in the room and everyone had a wonderful time.
Hi & Welcome ChrisS, Sounds like a wonderful trip. Since his brother & sister-in-law are also going, I would think at the stage you mentioned he was in, he would be fine. I would just recommend a familiar face always staying close to him. My husband is stage 5-6 & I would take him on a vacation if someone else was going to help.
Off the subject, however, I noticed you said, you were leaving from Indiana. Do you live in Indiana? I live in Kokomo.
The only problem I face on trips alone with my DH is using public restrooms. He'll wait too long, stay in too long and I stand outside and worry about what is going on. He usually has a wet spot when he comes out. I believe he gets confused about where to stand his cane etc. when using public facilities... If a man is along, this is not a problem.
i just took my DH on a cruise to Alaska out of Seattle. First, I don't recommend the Norweigian Pearl. Their food was subpar, as was their service. I have had good experience with both Royal Caribbean and Celebrity, both of which have ships going to Alaska. With all of the hubub about the swine flu, there are more cruise options to Alaska than usual. Second, the cruise to Alaska is definitely mellow, with wonderful scenery at every turn, and is very smooth (almost all in protected waters that were sometimes as smooth as glass. Third, there are excursion options that can fulfill some of your LO's dreams. For example, my DH always wanted to go on a floatplane (he loves water and flying) so we took the Misty Fjords float plane (a definite must do unless you or your LO gets motion sick) - they had headphones with cool music and the views were spectacular.
We all have LOs who don't have long to live and if we can fulfill their dreams and one of their dreams is to see Alaska or go on a helicopter, float plane, river raft, or other similar things, then I say go for it!
I will say that, for me, it was personally very difficult, but my situation is different. My DH had no trouble with the airport, taxis, buses, cruise ship, or any other aspect. We did stay in our cabin more than we would have "before," but that helped my DH be rested for the excursions that we did. I strongly recommend a balcony if, for no other reason, to give you a place to escape while staying close. It also allows you and your DH to enjoy the scenery more.
What made my trip with my DH so hard is that he has Lewy Body Dementia with SEVERE REM sleep disorder. I knew he moved and acted out his dreams, which is why we haven't been able to sleep together for over a year (almost 2 years now). But I came prepared ... I thought. I brought his VPAP (think external respirator) and portable oxygen generator, extension cord, ear plugs, and so much more. Once we got settled and I figured out how to rig up the equipment and be able to move around the room, I thought we were "good to go." We would have been except that my DH talks in his sleep, he moans and groans, and sounds so very sad. The ear plugs I got were good, but they can only block so much. I wound up with 7 nights in a row with little sleep (even though I had Lunesta, Xanax, and ear plugs).
Even with the trouble and the personal heartbreak, I would ABSOLUTELY POSITIVELY recommend going on vacation, especially if you can fulfill even one of your LO's dreams of a lifetime.
chrisS: Every AD spouse is different, but based on my experience, I would encourage you to do this while you can and if you have help, which it sounds like you do. My DH was diagnosed with EOAD in Jan. 2006 at age 53 and actually traveled on his own for @ 2 years since he had to retire and had the free time. Then in 2008 we took several trips together, including one last August to Paris, with my father and his wife (both healthy and in their 70s) going with us. My DH looked forward to it because we were also going to visit a good friend who lives in Paris now. We took everything at his pace, and I did need everyone's help, but we had a great time. Since then, we've taken three airplane trips and each has been harder, and we planned to go on the caregiver cruise in Feb. but I cancelled----so I am SO SO glad we went to Paris when we did, because this summer we are only doing a driving vacation, and I have help going with me on that also. I have always been proactive in telling the airport personnel about his diagnosis, and everyone is very nice and helpful, as are the flight attendants. Also, BUY TRAVEL INSURANCE. Bottom line, if you have help and your DH wants to go, try it, because you really don't know when it will be your last time for a trip of this type. Good luck and be sure to let us know how it goes!
Welcome to my website. You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 3 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great new section on informative videos. Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. Log onto the home page daily for new blogs; news updates; important information.
As for travel, there is an excellent blog that gives all the information you need. Copy and paste this link -http://www.thealzheimerspouse.com/travelwithadspouse.htm If that doesn't work, log onto the home page - www.thealzheimerspouse.com, and click on the "previous blog" section on the left. Scroll down to #41.
ChrisS--I would recommend that you go on the trip. Since my husband's dx we have taken a Mediterranean Cruise on our own, traveled to Eastern Europe with relatives, done a number of trips in the states, and plan another Med cruise this Oct (fingers crossed on that). I find that it's not so different than being at home--I never leave him alone here anyway. Actually, my husband really enjoys traveling and is happier and less moody than when we are at home. Of course, it is logistically more work when one person takes care of everything, but it is worth it. Didn't do it before, but I think we will preboard this time. I would love to use the wheelchair option Nancy described above, but he would never go for it--he's 64 and very healthy otherwise.
Nancy--Sounds to me like it's time for you to take a deep breath and go into the men's room with him. Others here have described what to do--just explain to the other "customers" why you need to be in there. I think we could use a humorous thread on this subject--Phranque--are you out there?
Yep...The best way to handle any traveling is to take me along.....I will provide 24 hr care, as long as the trip isn't to Florida....And yes, I can assist him if he needs to go to the rest room...and if the travel is exotic, I become an even better caregiver...
I think you joined our group AFTER our caregiver cruise in February. There will be another one to Alaska in September 2010. I cannot imagine going without having you with us to keep us laughing.
What I would not give to be able to go on that cruise...Financially, it will be impossible. Physically, I am not sure I could take my dw , because it now takes almost two people to be with her when she is out of the house...We are trying to plan a trip to Maine to visit her brothers, but unless I can take an anesthesiologist along, I am not sure I would make it..She has a habit of getting agitated, and jumping out of the car, or running and hiding....and it is always when I am preoccupied with something else (such as driving), and usually in the middle of rush hour traffic where I cannot pull over...But, I do take many cruises on our ship and I am there in spirit..
Hi Chris, Don't know if I am stating the obvious but.... When at the neurologist last month I mentioned that we were planning a trip to South America to visit some friends and he immediately turned to my DH and asked if he was wearing a medical alert bracelet. This led to a discussion and later to research on my part, as my DH refused to wear the bracelet or necklace. The MD insisted that traveling through unfamiliar places presents lots of opportunities to get lost. I found something on line that consists of a small metal strip which my DH can put around the band of his watch which says "medical condition, card in wallet" I ordered this and extra cards so he can have id at home, away or anywhere. I think it is a good idea. Any body have any suggestions about getting through the process of airport security without much problem? Sue
WOW! Thanks for all the great insights. It's good to know there are real people out there who have done these things. M friends are great but they haven't "been there". Even I don't know what to expect. From the info I got and after talking to john we are going to do it. We will go at our pace and do what is least stressful for both of us [I'm not much of a socializer]. And maybe we will both takes something to knock us out on the airplane [I don't like flying]. I e-mailed his doctor in Chicago for his ideas on the trip and his short, succinct answer - "do it"! By the way Kadee, we're from South Bend. Thanks everyone! Chris
Phranque, I think you should be hired..under the "entertainment category" on the cruise. I just wonder if you are a shy guy in person. You're funny as heck on line.
I'd hesitate to take medication to make me sleepy on the plane with my DH. You have to be on your toes at all times, and there's no guarantee it will have worn off when you arrive. I remember, however, one of the flights we took when we had to bring our small dog along. (We were moving from GA to TX). The vet sedated the dog, the MD sedated DH, and no one thought about the layover in Atlanta enroute to Houston. I had a husband dead asleep in a wheel chair and a dog that looked almost dead in his carrier. I was frantically pushing a wheelchair while pulling his carrier (like a carry-on bag) behind me. But, everyone is different. I just seem to find myself in these situations more often than most.
Crusing is the best thing to do with partners with limited abilities. So many ways to have a great time with so little hassle. Truly a wonderful time..every time!
We aren't quite empty nesters yet but have managed a few holidays on our own during the last few years. Both of us were looking forward to this time in our lives when we could travel without children/teens. Had several trips in mind. Am discovering that most of those won't be happening . . .
Think I posted on another topic about last year's experience traveling. Not great. The previous year we'd decided on a specific road trip and DH got frustrated looking online for accommodation so I took over and found places. He also changed his mind about some of our travel plans so we reduced activities considerably. Last summer, in an effort to avoid the pre-trip planning hassles, I decided on our itinerary. Discovered on day 1 that hubby couldn't manage well without his regular nap. Mind you, he insisted he'd be fine. Day 2 resulted in a meltdown (at a relative's home). He did have a nap (late though). Next day----no nap. Next day we were driving 4 hours-----turned out that was too long and I lay awake that evening wondering how we'd manage to drive home. Hubby was grumpy most of the trip. Happiest on the last day of our trip. Chatted and was in cheery spirits. He was heading home to familiar surroundings and more regular routines and he was glad. So different from vacations in the past when he anticipated and enjoyed our times away and was reluctant to be returning home.
(Decided to add my comments as I was interrupted while typing the above and sometimes if I take too long typing, I can't always post successfully).
I thought long and hard about future holidays. Hubby still likes the idea of going away but is reluctant to commit to any plans. I came up with a few ideas for this year but he wasn't keen about any of them. So I decided to not push anything and in the back of my mind, thought we could always do something fairly close to home later in the fall. I also was planning a getaway weekend mid summer . . . DH expressed some interest in coming along with me but I figured that wouldn't happen and I'd book my ticket and have a few days away. Only problem was something unexpected came up a month ago and as a result it wasn't possible for me to get away.
A couple of days ago one of our grown children asked if I'd like to go on a three day trip with her. Sure, says me. That triggered something in hubby-----when were "WE" going to get away and where were "WE" going to go? So for the past 48 hours he's been obsessed about booking something. Let's go here. Let's do this. Let's go there. I feel badly for vetoing most of his ideas but either the plan involves more travel than he can handle or too many time zone changes or too many travel connections etc. Plus the past few months have been extra busy for me and knowing how hubby responds to changes in his routine (not well) which in turn affects his sleep at night (more restless) I'm definitely wanting to keep things very manageable. Go somewhere not too far away, stay at same place and REST. It would be much easier for me to get online and organize a trip myself(for both of us) but at some level, at least for right now, he thinks he should be doing it.
Any suggestions on how to handle someone who still has a need to be part of the planning but is losing the capability of executing realistic decision making? (Hubby is undiagnosed but likely FTD which would explain much of what I've written above).
rachelle, where are you from? My computer says you posted 4 hours ago. It is now 8:30 AM in Maine, which would mean you posted sometime around 4:30 AM in the Eastern time zone, even earlier farther west. Or are you in Europe?
Hi, chrisS. Other than the seizures, you're describing a situation very similar to where I was with my wife a year ago. At my 1st support group meeting last year, I mentioned how my wife and I had traveled a lot in retirement and we had trips planned for a year and two in advance. A very wise person said to me that if there were any major trips we still wanted to take, we should take them NOW. Excellent advice. We were able to take a wonderful trip to the middle east 5 months ago but had to cancel an already booked trip for this fall because I realized that would be too much for her. Be prepared for your husband to leave items in hotel rooms, restaurants, on buses, etc., becoming easily disoriented, unable to remember details about what you're doing when, and where, etc. Long airport waits may also be a problem as well. BUT ... I'm so glad we took this last trip 5 months ago because we couldn't do it now. She has declined too much since then. The days of our major trips are now over, although I'm still hoping we'll be able to take a driving trip to Canada next summer. (We live in NY.) So take that trip, Chris!! Consider helping your husband pack (be sure to double check your packing list with him!!) so YOU can locate things when he can't. Try to live out of the suitcase or, at most, one drawer in your room. The more places he puts his stuff, the more opportunities to forget where his stuff is. Eyeball everything you can when he moves about so if your husband asks where things are or says he forgot to pack this or that, you can show him where things are. Make sure someone is with him at all times, and scan restaurant chairs, hotel rooms, buses, etc. before leaving to make sure he has everything with him. And YOU should hold all his meds ... that's the one thing you can't afford to lose!! Most of all ... ENJOY!! You never know if this may be the last major trip you'll be able to take together ... so enjoy it to the fullest! Alaska was out first major trip after we retired. You're gonna love it!
My wife and I have traveled in our various RVs for many years and last year made three trips (one for about six weeks, one for five weeks and another for two weeks). She did very well and enjoyed those trips. This year we made one two week trip in our motorhome . She enjoyed some of the things we did (one being a family wedding in Montana), but slept most of the time and couldn’t do anything to help as on past trips. So travel now while you can!
I've decided we're past traveling because it's too stressful for me to enjoy because I have to pack for him, keep track of every little thing, etc., etc. He is easily confused and gets angry when I try to help. This all equals no enjoyment for either of us. Even day trips aren't worth it--he sleeps; I drive. He says his legs hurt to much to walk anywhere; he doesn't comprehend much of what he sees (museums, zoo, etc.). So, again, home it is.
Our last trip was quite an ordeal. I did all the driving (which I hate) and DH was not able to even hold a map in the right direction. Once we arrived he didn't want to go anywhere and I was a prisoner in a lovely time share with nothing to do.
Our last trip was a nightmare. We went to Virginia Beach with his family. He tried to get out of moving vehicles, left our hotel room and got lost while I was in the bathroom and generally made it a pretty miserable trip for everyone.
My DH and I have been on several cruises in the past two years. Cruising is my favorite thing and when his neuro stated to me that if we were to travel it would be best to go to one location and stay in one hotel so he had the same bed to sleep in every night. He also stated that a cruise would be the best because he could adjust to the surroundings better if it wasn't something different every day. The neuro was right, so we now have a 14 day cruise planned for Hawaii in Oct. I hope he doesn't decline much in the next couple of months. My DH loves to travel and I just hope we can continue this for a couple more years. Furthermore, we are spending down our assets so he can qualify for medi-cal if it is necessary....so trips is the only way I can think of to do that.
We always loved cruises also. I think Jean handled them very well. He always stuck with me like velcro which helped. He's in a nursing home now but I have a lot of happy memories. Once in awhile, I'l bring up the subject of cruises with him. He acts like he remembers. Who knows.
Marsh----we live in the Pacific time zone. I was up very late last night. Needed quiet time to unwind. We'd been out in the afternoon and hubby didn't get his usual nap yesterday and evening was getting out of sorts. But determined that we should book something NOW. He started to lose it and I eventually managed to encourage him to get to bed. Not easy though. I then finished off a few things and decided to look on the message boards for ideas/suggestions.
JudithKB----Your husband's neurologist's suggestions re travel and holiday were exactly the conclusions I came to after last year's vacation experience. I realized we needed to limit actual travel time and stay in one place. I thought a cruise would work really well especially as there's the bonus of meals included (no need to look for restaurants everywhere while traveling). Plus hubby could nap each day. And I think he'd like the bed on a cruise . . . last year's trip he complained about every bed he slept in. But when I suggested a cruise (more than once) he didn't want to go on a cruise----no reason why & no alternate suggestions until last couple of days when he's been coming up with a variety of ideas. Most he has decided against in the past but right now he feels he could handle anything. Hence my dilemma having to tactfully come up with reasons why such and such an idea wouldn't work and saying it so he doesn't feel put down.
I think he is starting to get it . . . I have told him (several times over of course) that I want to go somewhere nearby and stay in one place and REST. That's truthful for a trip that we take together. I could manage a trip further away with more activity (although also time to rest) if it was just me but I am not prepared for a repeat of last year's holiday. So now we're looking at places within a 3 hour drive from us (do-able). So long as we book somewhere that has a bed hubby finds comfortable I think things will be okay. And plan our day's activities so he naps every afternoon. But if he isn't happy (with bed or with being away) we're close enough that we could come home early.
If anyone does go on a cruise and if you are concerned about your spouse getting lost, I noticed that on the last cruise we did they have bracelets (basically for children) that can be used and if you can't find the person you are looking for the cruise ship can locate them immediately via the bracelet. Does anyone know if these are available to the general public for use?
That's a wonderful idea. I wonder how we could find out. Our last cruise was 24/7 togetherness, as the ship was laid out a bit differently than ones he was used to and he didn't think he could find his way back to the cabin by himself. I spent a lot of time out on the balcony while he napped a whole lot. Luckily my little netbook could be used in the cabin. We get free internet on Princess and it was a lifesaver.
We went on a cruise when DH was in early stages and it was lovely. SO glad we did it then. So go for it, whatever you can!
This summer I found he could handle a two hour drive with no problem. This was a vacation at a resort hotel sponsored by the Dutch Alzheimer Association with wonderful care included. Caregivers could leave anytime and go swimming, walking, bicycling and our spouses were cared for. There were also lots of activities for caregivers and "special guests" together. DH responded very well to the constant enouragement and participated in things he hadn't done for years, like bowling. I don't know if these vacations exist anywhere in the States but it was ideal for us at this stage (Dh is stage 5-6). I also enjoyed the interaction with the other spouses and have been emailing with a couple of the younger ones.
After a visit to the US in May I have decided not to subject DH to airports, airplanes or extended family visits anymore. He is staying at his day care place when I visit my Mom in October and then again at Christmas. It will be the same place where he will be placed if it is necessary in the future (and of course, if this all works out OK).
Well, here it is a month and a half later and still not booked. Had yet another dynamic come up that meant we couldn't leave until middle of this month. I suggested waiting until early Oct (accommodation rates go down then) but DH wasn't agreeable to that. But now it looks like it will be Oct due to a variety of circumstances. Fine by me as I'd like to get caught up on a few things at home (was a very busy summer).
I have vetoed several ideas . . . feel badly doing so but on the other hand, I'm not prepared to do something that I know isn't realistic. Wish sometimes that choices weren't so limited by what is going on cognitively. It's almost bittersweet thinking of going away. I want to and hubby wants to but at the same time travel and holidays won't be as we'd anticipated for this stage of our lives.
For what it is worth: My husband's neuro told me some time ago that a cruise was the best vacation for my dh. It was best because he would be in the same room, same bed, etc. every night and same over-all surroundings on a daily basis.
A vacation where you stay in only one place ... an extended visit to a particular city, for example ... is another good alternative to a cruise for the exact same reasons. It is SO important for my wife to have that familiarity each morning and evening ... staying in the same room at the same hotel each night offers the same advantages as a cruise. Even then, however, expect confusion as to where things are. We've been on both kinds of trips within the past year, and each morning/evening it was ... I can't find this or I forgot to pack that or I don't remember where I put my this or that. BUT still a lot better than when on a tour where you move from city to city every few days. Won't ever do that anymore ... WAY too stressful for ME, as well as anxiety-producing for my wife.
We took a quick weekend trip last month. My DH woke up the first morning in the hotel room and did not know where he was. It was only when I reached over and put my hand on him that he stopped being scared. I felt so bad that he was even worried about where he was. By the time we got home he was so tired. It was a fun trip. I did all the driving and we had no fights. I think a trip where you are in the same place in the evening is a great idea, I can see where it would help so much.
Well, we've finally figured out dates for WHEN we will get away. Also for WHERE we will go. Not too far . . . a 3 hour drive. Any longer would be too much. Haven't booked actual accommodation yet as one place that looks good doesn't offer any refund at all if we couldn't make it. There's lots of other accommodation available in the same area so we're going to wait to book until closer to departure time. Hoping the place we'd like is still available but if not, we'll just book in at another place. I wasn't comfortable with the idea of losing $$$ if something came up and we couldn't get away. We've had a few things come up this year (ie unanticipated hospitalizations of family members) so I'm aware that things can come up when we least expect. We're currently waiting for some test results from a medical test for hubby. Actually, it is me that is waiting to know if all is clear or not (not "we"). Hubby didn't connect that the dr. had picked up on a problem and therefore was sending DH for a test. We should hear back this week. I decided no need to worry hubby unnecessarily so have kept quiet about the possibility of follow up if the test results show something amiss.
JudithKB, I would so liked to have gone on a cruise this year. Easy to book. Easy to get to and once aboard ship, unpack and just rest and enjoy the cruise for a week. No driving . . . no meal preparation or different beds each night. But hubby totally refused to go on a cruise. He recently said he'll go on one next year. But who knows if he'll remember agreeing to that or not? Mind you, he said that in front of family members so maybe they'll hold him to it.
So we are planning to do what acvann suggests-----an extended visit to a nearby tourist town that is in a nice location and offers enough activities that we can choose to do or not do depending on our energy levels. I will be quite content to read and relax and REST so if that is all hubby wants to do, I'll be happy! A few day activities or a soak in the hot tub or some outdoor walks will be good too but not necessary.
Good luck, Rachelle! I don't think we'll ever fly anywhere anymore, especially if we cannot get a non-stop ... too difficult for her to pack for airplane travel, too stressful for me in airport waiting rooms when she needs to use the bathroom, etc. When we do take long car trips (our son and his family live nearly 800 miles away and we drive out 3x/yr; takes about 14 hours) we now take our time getting there. She sleeps late, so we can't get on the road until 10 a.m. and by 5 p.m. she is tired and we stop for the night. Used to drive out in one day; then 2. NOW we leave in the afternoon of the 1st day and drive for about 3-4 hours; next day's drive is for 7 hours; 3rd day's drive is about 3-4 hours. But ya know what? I'm just glad we can still travel, because I know we won't be able to take even these car trips for too much longer. Our other trips are now to places that we can reach in 1+1/2 days of driving, or roughly 500 miles, and then ... just as you are thinking of doing ... we stay in one hotel the entire time, do one daytime activity each day, enjoy meals at the local restaurants, and enjoy the hotel pool and hot tub. And lots of TV and reading! Enjoy your extended visit!
I don't know how long it will be before we can't do anything together anymore. I know that I can't go somewhere with a friend or by myself because it will upset him so much afterward that it isn't worth it. So, unlike last year when he wouldn't go anywhere, this year, with the help of Seroquel, he's ready to go. But, it will be a driving trip, spending 2 days in one town we're familiar with and loving it, and 2 days in another town 1-1/2 hours away. He's looking forward to it. We'll see what happens. Since adjusting his meds, he's much easier to handle. Thank God the meds are working. The anger he had before I adjusted it upward was not easy for me to take. The last couple of weeks have been good ones; he even took me out for dinner one evening last week. I'm pretty confident he'll be fine on the trip, as long as he's in a familiar place.
I spoke too soon. DH is changing his mind about dates to go away. He's mentioned to someone that we probably were going away in 4 days!! When I thought we'd agreed end of month. He spends so much time fretting about when and where we'll go that it basically takes away the anticipation of getting away. Been like that last 3 years.
Reading through the last 3 posts made me suddenly realize that years ago our children had more stamina for longer road trips (when they were youngsters) than hubby has now. No wonder I am feeling some disappointment that so many trips we'd planned to do on our own (once children were grown up) aren't going to happen. I hope we can at least manage a cruise together next year. Three hours driving is about his limit. Overnighting en route would be okay IF beds were super comfortable for DH. But can't always guarantee that.
I'd hoped to visit extended family on my own next year but not sure that hubby could handle me being away very long. Maybe if I can work out a schedule of friends and local family to each take a day with him??? But deep down, I don't think that would even work.
Rachelle - I would tell him that you are leaving on _____ this date. If he doesn't like it he can stay home and you will go alone. Tell him reservations have been made and money is non-refundable. You are going to wear yourself out trying to keep up with when he wants to go. The last week my hb has been asking me when we are moving and I keep telling him the date. He has a calendar right by his chair that he crosses off the day and has the day we are moving circled. Problem is he forgets what the red circle means! He has even gotten to the point where he gets up in the morning and starts packing things up (we live in a motorhome).
You have to stick with the dates no matter what he says. I doubt he will stay behind.
Rachelle: Your hd sounds like my husband regarding our finances last week. One hour it is one thing we should do the next minute we shouldn't do it that way. This went on for 3 days last week until I was ready to commit myself to just get away from him. I finally realized...it isn't like it use to be when we made joint decisions...just one of us can make a decision now and it isn't him...it is me....I told him I was in charge and would be making all financial decision now and in the future and if he didn't like it then leave and let someone else take care of him. This is very difficult to realize your dh probably can't even remember sometimes what decisions you have made regarding a trip. I am convinced that telling my husband I WAS IN CHARGE AND I WAS THE ONLY COME IN THIS RELATIONSHIP NOW THAT COULD MAKE DECISIONS...was the best thing I have done regarding his illness.
I just came back lfrom a road trip out of state. I know it's the last vacation we will take as he is stage 6. It took alot of planning and a friend from the east coast who flew out to join us. Without the friend and my daughter's help it wouldn't have happened. It became a family get together with grandkids, and an aunt and uncle too. We took alot of pictures particularly since we knew there would be no more of these trips with my spouse. I knew it was not going to be relaxing as I drove and coordinated everything, but the trip was still worthwhile. I think you have to accept up front that traveling with a spouse with memory issues is just not a relaxing thing to do.
Thought I should update you all----we actually did get away for a week. Lovely weather with lots of sun. The plan to go nearby (not long to drive) and stay in one place (same bed each night) was definitely the RIGHT choice. Hubby did well and at times I even wondered if I was imagining the cognitive problems. But then he'd say or do something that would bring me back to reality LOL! But overall the calmer slower pace-----with no scheduled activities or appointments and minimal interactions with other people-----definitely helped DH function better. There was little to rattle him and I was with him all the time (not needing to run out to do errands or work etc). Made me realize that if our daily routine could be kept to that same level of calmness, he would probably cope better. But reality is that we can't totally isolate ourselves from life.
One of his family members told our daughter the other day that her dad seems to becoming more childlike/childish each time family member speaks with him. Family member is grieving at the loss of deeper connection she used to have with hubby. Finds conversations with him are surface and mostly one sided (her initiating talk or asking him questions).
We (DH and I) went out for dessert recently before attending a performance. Arrived at restaurant and hubby became immediately anxious . . . I think because of the noise of conversations around us. Was very worried about the time . . . that we'd be late for show. Wanted to leave. It was all I could do to calm him and get him focused on what he wanted to eat. He LOVES desserts so I was unprepared for this reaction. Anyhow, I explained to our server that we needed to get to a show so server got dessert to us very quickly. (We actually had plenty of time but hubby didn't think so). Dessert came very quickly and DH gobbled it up as fast as possible (he usually is a slow eater). Guess he really was anxious!! I made a mental note not to suggest going for dessert ahead of something in future. The pleasure of enjoying the dessert was rather ruined. Plus other couples nearby were all in animated conversation with each other----a direct contrast to us. Hubby sitting there anxious, not saying anything and me trying to initiate some conversation. (The show was good though so still a nice evening out. Not something we do very often so I'm glad we can still enjoy an outing like that occasionally).
Rachelle, the anxiety about arriving too late sounds very familiar to me. My dh had this for a couple years and we were always early for everything -- sometimes HOURS. Now he no longer has any sense of time or about where he is supposed to be next after this. Wherever I take him is fine, whenever makes no difference. Makes things easier in a way. But no --- I would not have chosen for this change.