I recently posted "traveling and dealing w/ear popping". I have had our vacation trip to hawaii scheduled since last year - its the "special place (Koolina, Oahu thus my online name)" I described was one of the last places we went to the year DH was diagnosed, wrote the living will and talked about his last wishes. This past Jan, DH took a sharp turn for the worse to a point we thought we were going to loose him. Yes, for some reason I felt if we could pull through it we would make one last trip to our special place. So here we are and a few people are asking me if I am really going to do this and what if??????? This is what prompted me to post the question about the ear popping too. I am afreid to ask the Dr if I can really pull this off because I have a feeling he will tell me I am out of mind. Does anyone think I could be dillusional in thinking he really cares or will even be just a little fun for him? I swear everytime I bring it up he seems excited about going. Or maybe I am being selfish for wanting to go and know there would be no way I would go without him (ie, leave him with respite as my sister recommended). Anyone have any thoughts on this????
I would offer that the folks around you seem to be suggesting you should not take him or if you go go without him. i checked your first post and you mentioned 6yrs into the disease and issues with aggressive behaviours. that would not be a good mix on a long flight in close quarters. if since then you have his behaviours in control and hes mild mannered and calm i would then say it depends on how long he would be able to sit in a plane without issues. its always a good thing to get that 'last trip' in if you can manage and theres still comfort for you both. if he is beyond enjoyment then maybe you are doing it for yourself alone. i did it on our last trip to cancun. i took him knowing he wasnt up to it and he got sick from the food. and was not at best about being in the sun and heat during the day. i made the trip with my BIL/SIL and without them along i doubt i could have managed him. it was not a real vacation after all for me having to be attentive to his every need and upsets. you could wind up with the same a not so happy trip unless you know for a fact he is shape to go with you and capable of enjoying it-if on the other hand you think so, i wish you all the best and have a great stay.!. divvi
I understand your wanting the trip and understand you both made plans for it. You will have to make the decision yourself about taking him. No way could I take my dh on a trip to Hawaii. I have been debating with myself about renting a 6 BR vacation house in the Poconos for a week or less this summer and inviting our 3 kids and families. That is 5 hour drive. Today he was too tired to go to Mc so I went myself and brought his coffee back to him. Now one of our daughters called this evening and is worried her dad won't get to see his sisters one more time. 2 hours away. She wants to take us Sunday to visit them. I had planned on doing it after school was out and she is afraid he won't be able then.
I told her we would decide in a couple of days. Good Luck and if you go I hope you enjoy the trip. Lois
We are planning a similer but much closer trip for September and I am equally concerned. Mayb e one big difference is that we will have both grown kids with their 6 kids and 3 other from family. We are renting a condo, 3BR on G ulf near Corpus Christi. Worried abut Carol but feel we will have enough help to spread the care around. I need the break and there is no place like the beach. We went 3 yrs ago and Carol brought back nothing but bad memories which she has now forgotten. so it is somewhat selfish for whole family and definitely for me. I plan to sit on the porch and watch the sea gulls float around for as many hours as possible. Praying for no huricanes like Katrina, Rita or Clara. but there should be a lot of families with children and that should make LO very happy.
It is 4 months away so I hope stage 7 holds off at least that long.
I have to agree with Divvi. I realized that my DH cannot even wait in a closed examination room for 30 minutes, and there is no way he can be on an airplane. The airports begin the aggravation - security etc., and then once you are in the plane, there is no guarantee you won't have to wait extra time due to mechanical difficulty, weather on the other end, etc.
I know my DH has no feeling of fun or excitement, in spite of him agreeing that it would be nice to go here or there. They cannot take heat, long walks, unfamiliar surroundings, etc. Our friend who is a doctor said many elders are injured on vacations because they are unfamiliar with the room/bathroom etc.
If it wasn't so far (Hawaii) I might not be as worried, but that's a long time over water with NO stops!! (Hopefully!)..
Think it over...and make your decision with your brain and not your heart. It's really not fair though......darn it!
Our son and daughter-in-law lived in Hawaii for 3 years. We visited them for 10 days every summer that they lived there. It was before Sid showed any signs of AD, and before his diabetic neuropathy made his foot so bad that he could barely walk. He walked fine through all of the airports. No wheelchair needed. I have to tell you, this is NOT a trip I would take with someone with AD, especially since you mentioned your husband was at least stage 6. We lived in the Boston area at the time. That was 12 hours on a plane. It was so bad, that the following years, we flew to California, stayed overnight, and then flew to Hawaii.
The change in routine, the confinement, the airport congestion and confusion, the hotel - You have to make your own decision. I can only give my opinion, but I would not do it if I were in your shoes. Sorry.
We just took a 4-week trip to visit our son and his family in Missouri. We got through security in Seattle just fine. The problem was in Denver where we changed planes. He was being as cooperative as could be expected but it seemed very confusing to him.
Right up until the shuttle van came to pick us up he said he wasn't going and I couldn't make him go. Some of you will recall I was getting a bit stressed (to say the least).
We made it ok. We had a nice time. He seemed to enjoy himself and we got home ok. I do not think i will be making that trip or another one like it unless I have someone else with me.
He's in stage 5 (I think). Hawaii is a very long trip. Maybe he could have a sleeping pill or a sedative sohe will be relaxed during the flight.
My best of luck to you. May I ask why you don't want to leave him at a respite?
We just returned from a one week trip to California and I won't do it again. It was ten hours from Michigan to LA with flight transfers, layovers and shuttle; and just navigating the air-travel system was exhausting. I found that repetitive questioning increased dramatically on the trip. Where is our stuff (luggage)? ... Where is our place (hotel)? ... Where are we going? ... Where are we eating? ... When are we eating? ... Why so late? ... Do they have bathrooms here? ... etc, etc. Not fun!!
I'm concluding that DW needs a familiar environment and familiar routines to keep her on an even keel.
danielp, I have also found that a familiar environment and familiar routines keep DH on an even keel. Traveling really messes him up.
Koolinagrl, I think it really depends on how important this trip is for you. You may decide it's worth the chance you'd be taking. Then, again, it may be so disappointing that you would wish you hadn't gone. Hugs and best wishes, whatever you decide.
I'm sort of in the same situation. DH does not travel well at all (no rages-just totally confused and hard to deal with and take care of). My 91 yr. old Mom is in a NH in FL - haven't seen her since last summer and swore that was the last trip I would take with him. My son is in So. FL, on the national transplant list for a kidney and pancreas. I SO want to be there when/if that happens, but know that I cannot take DH when it does happen. I'm torn in two. No family here to help. He isn't ready for day care or any extra help, as long as I am around. I'm his safety blanket, I guess.
Guess I'll sort it out and do what I know is best.
mawzy, thanks for your feedback (and everyone else too!). Alot of guilt involved with this whole issue and respite has come up. i just dont think I could be away from him for 2 weeks; I think I would be more stressed out due to the guilt and wondering if he is ok. At least if he was with me and even just sleeping or cursing, I would be happy to know he is "ok". I do have 2 caregivers traveling with me and family meeting us the following week. And yes, I was loading up on antivan and ambien just before I really had to stop and be real. Our resort is condo-like with kitchen and all amenities of home so its not as confined as a typical hotel room. We will also be traveling in First Class so he will have a reclining chair too. So, I did the best I could to prepare all this time. I feel like I am doing the right thing and like bille need the break from work. But is it the right thing to do for him is what I am struggling with. Thanks again to all for your thoughts!
Vickie, if he's not ready for day care etc maybe you could try sitting him down and saying how much you want to see your son.. what does he suggest? can you hire a "housekeeper" who is really a CNA to come in several hours a day? Do you have an emergency contact in a friend (or your lawyer) that you could use as backup??
Thanks, briegull. We have had the "talk" several times. He honestly wants to go but in the past, when we get ready to go - he gets really sick - everytime-physically sick, so always had to cancel. When the transplants come through (hopefully), I think I might try to find someone that he knows (maybe a guy) to come sleep over. I worry more about him at night than daytime. He takes care of himself with all things so that isn't a problem. But does get confused a lot. Oh, I don't know - it's such a bad way to have to live, isn't it? Thanks for your input.
Be sure to plan for some of his fun things to do on the airplane. My LO loves to look at picture magazines, good snacks, music if he likes to listen,, movies or CD's that you can use in the Condo. Maybe a gooed Bird book so that you can see how many different gulls, pelicans, etc. you can see. I suspect that the airplane time will be the most difficult but maybe an extra sleeping pill would make it easier. Plan for a good time but be prepared to accept pitfalls with out breaking your spirits. Make the good times better than the bad times. Kind of like we do at home. The exasperating stuff at home, we try ot offset with the good times and mainly the Happy times!!! Good Luck. Bill
dear janet - thank you much for the website info. the website is very helpful and i actually feel better that i was able to checkoff 90% of the items mentioned that should be taken in consideration or have a backup plan. after careful thought, i think i am going ahead with the plans. just waiting to hear back from the dr on how to minimize phlebitis (sp?) and any other last thoughts he might have.
again, thank you all for your invaluable feedback and support. i would not have been able to make this methodical decision without you and family support. the risks of making things miserable for him is still there but like bille says, we will make the good times outweigh the bad. i will be sure to report back our journey.
Janet suggested we read the referenced article on TRAVEL. I agree. It is excellent. I printed it out and will share it with my Caregiver friends. I will repeat the web site if you missed it above. It is amazing!!!
http://www.uihealthcare.com/topics/brainnervoussystem/alzheimers.html Thank you Janet for finding that!!!
Vickie - is there any chance that he has a latent infection that crops up when he's stressed? My husband does. Sometimes the doctors have said staph, sometimes strep and obviously those are very different, but he's had it most of his life. Most of the time it doesn't give him any trouble but every few years something will stress him and he'll go to bed sick. Really sick. This kept happening when we were preparing to move - a professor, moved several times.. I had to do all the packing of books etc while he sat in bed and moaned. This when the kids were young.
Now having said that, I don't know any cure that would make him better if you have to travel!
Thanks for that info, briegull. Don't know about any infection that crops up when he's stressed. But...the same year of his dx, we were on a trip and he had to have an emergency appendectomy (appendix burst)- 400 miles from home - in hospital for 2 weeks and we were there for another 3 weeks until he was able to ride in a car for me to get him home. Now he thinks everytime we go away he'll end up in the hospital and has said so. So...I think it's psycological - but he does get physically sick - mostly stomach stuff and bm's.
No..I don't think there's a cure for this - just one more thing to endure. And the sad part is - he does so well otherwise and we could be traveling. Not to be I guess.
Just wanted to let everyone know we are back from "the trip - our final journey". Surprisingly, we had no problems with the travel to and from. I took all the precautions as planned and things could not have gone any better; no screaming or rage outbursts from ear popping. When we arrived in Honolulu after an 8.5 hour plane ride, DH was as happy as could be about making the trip. In fact, he was alert during the whole trip and did not have to give any sort of calming meds during the 2 weeks there. We really felt a connection and that he was grateful for honoring his last wishes. Prior to the trip, DH (stage 7) was 99% wheelchair/bed bound; during the trip he walked around the condo like nothing and only needed the wheelchair for long walks and was even hard to keep him seated in the wheelchair.
So the moral of the story: I do believe I captured something in his eyes all along, I felt we needed to do this - my gut was telling me how important this was and that it was part of the "final journey". The gut was telling me to go but my brain was telling me I was crazy.
Before heading off to the airport we sat near the oceanfront and DH talked nonstop (in his jibberish language) but through it all I believe he was thanking me for all the preparation and work I had done to get us there. That alone was worth it for me - that I know that he knows I did something for him. I am proud to admit I was not delusional (I even learned how to spell it!)or selfish.