Hi all, I read alot here and get lots of advice - but don't write too often. Since I am about to pull my hair out, I thought I better vent and ask for some info. We just got back from a cruise which was very overwhelming for my DH. He did ok but seemed disengaged most of the time. Ever since we got home he has gone downhill by a great deal. I almost thought he was having a panic attack the night we got home. He is extremely anxious, scared, more confused and disoriented and follows me everwhere. He says he is scared and walks in my shadow wringing his hands with a worried look on his face. This is all new behavior for him. I know from this website that trips, surgeries, etc. can cause a downhill slide, but I am wondering if he will bounce back or is this slip to a another behavior of AD permanent? Can anyone share their experience with me? He did have a Dr. appt. and I asked for something to help him calm down. We got xanax, but it has not helped much. He had switched his antidepressent from Wellbutrin to Trazadone and I did notice that the Trazadone did not help, so we have switched back to Wellbutrin.
I feel bad for him - it must be a horrible feeling, but the continuous anxiety and shadowing me all day is driving me crazy. I know it is the disease, but I am losing my patience. Thanks for listening and any advice.
We had a trip to Las Vegas and the Grand Canyon in May. As you said, it was hard on my DW and she was disoriented for about two weeks after we got home. Things are better, but like everything, some days are better than others. You can never measure how much has been lost from one experience to another. For example, yesterday I worked in the yard for several hours and she seemed to be doing alright in the house by herself. She did mention that I was working for a long time, so she was uncomfortable by herself. Today, she was shadowing and I was afraid to go back out even for a short period of time. At one point, she went out the door and "took a walk". I heard her go out, so I watched to see if she was turning around and coming back, which she didn't, so I cut through the yards across the street and caught up with her the next street over. This is behavior that she hasn't done since the first of the year. There is no telling what will upset our dear ones.
It is disappointing to plan a trip in the hopes that our loved one will enjoy themselves before the disease prevents them from doing so and then the trip was not enjoyed, was too overwhelming and put him in such a tizzy! Last trip like that for us. We will try visiting his parents which we do as often as we can, but we still have a young on in school so that is limited. All I know is that I need a vacation alone. I will be praying for more patience with this season of behavior and be thankful for the things that he can still do himself.
I have one on another discussion about when we went to Germany for three weeks. It was a good while until she calmed down from that one. That's when I knew we had a problem. This was right before our Dx.
I still loved to travel, but had a funny feeling about traveling alone. (now this is right after our Dx.) I took my DD and her family, and we all drove to New Mexico for a vacation. The first night in the hotel, she cried and wanted to talk to my DD. She confided to my DD that she was sure she was pregnant! Yes, she's 58 and already through menopause, and I am vasectomied! talk about weird. I found out later that there have been others whose AD wives have insisted they were pregnant, even when it was impossible.
Huge whoops! Just what I don't want to hear about is bad cruise trips...I'm so fearful that this isn't going to work,but am committed now at least for the $$ part. The one good day, one bad day thing just scares the #*&%$# out of me. He wants to plan travels and feels good about it now, but..four months from now?? I know, try it and see if it works..one day at a blah blah blah...guess I have looked forward to this trip for so long, I am willing it to work. Not too sure that happens anymore.
I tried to look up previous discussions but could not find them. Can you help? Did you have to do any meds to help her calm down? I can't take this for a"good while"! Hopefully my DH won't believe he is pregnant! He has been diagnosed for 4 years now.
My DH's diagnosis was MCI for over a year. We had a trip planned--paid for and all. At the very last minute he just went nuts and proclaimed loud and clear that he wasn't going anywhere and I couldn't make him go. I didn't know he had degenerated that quickly (this was in October--his diagnosis was in August.)
So, like the great wife that I am, I started trying to cancel the trip, get the $$ back, sooth ruffled feathers of the tour director, etc. It took 3 months to get the money back.
In the meantime, I took him back to the Dr. This time the diagnosis was moderate to severe AD. I had no idea MCI was a prelude to AD.
Now he wants to go to Norway. We have belonged to Elderhostle for several years. We keep getting their lovely brochures and magazines. I have to contact them to stop the subscription. Just one more thing.
We went on a cruise in March of this year & my DH did "pretty good"...i took along my mom (nearly 70) and my dtr (24)...both were a bit of help, altho I still did the majority of seeing after my DH. It was very nice to have the staff on the ship take care of our every need...we ate bfast in our room EVERY morning (delivered). We even got off the ship in all ports, did a "submarine" tour, van tour (altho DH got very ill on the van because of no air)...everyone we encountered was VERY VERY nice & accommodating. I would recommend a cruise to anyone, but would recommend having someone(s) along to assist, i.e sitting @ table & getting food for my DH, etc.
natsmom - I am glad your cruise went so well. I had thought ours would also. It was definitely the easier part of the trip as we also had 4 nights of a land tour. If he was not having such a hard time now I would say it had been worth it.
Mawzy -Our last cruise was to see the polar bears in Norway - well Spitzbergen. It is light almost round the clock. As much as I loved that trip, I'd never do it again. My DH didn't want to get off the ship to 'go see' and was very confused about night and day.
My hubby was diganosed a couple of months ago and he told me not to take him on any trip ( we had planned to go Vegas for the past 2 years). He said that he would be to much stimulation first at the airport and then in Vegas. He says it causes something in the brain that will increase the confusion. I asked what about taking him to play miniature golg, he also said no to this. I am noticing he is definitely more comfortable being home in his familiar surrounding, but at 58 he should still be able to enjoy life outside of FTD and doctor's appointment. ANY SUGGESTIONS?
bluedaze I agree with you. My husband has always been a loner. This has not changed since AD. I used to worry that he needed more social activity and more exercise. I worried about not doing my part to keep him healthier. Somewhere along the line I realized that in his own way, he is talking to me loudly and clearly. He is most happy at home and less confused.I try not to think about what he "could or should" be doing. I took him on one long weekend trip a few months ago. We ended up staying in our room resting with me running out to get food and snacks. I can do that at home. since your husband is telling you this.. I would go with it
My DH never goes anywhere. His comfort zone is at home in his recliner.He is not nearly as far along as some others on this website, but that was one of the first things that happened, he withdrew and didn't want to go anywhere. Last week he had a dentist appointment, at the last minute he got "sick" and wouldn't go. I had to reschedule, so tomorrow I'll give him some Xanax and hopefully we will get there. So sad they seem to be ok and then something happens and you know they are not ok and you are not crazy. I don't post very often but read everyday.
I am so glad for this discussion. I was planning on a trip for DH in Oct. Didn't know where we would go but was thinking of several things. We went on a cruise to Alaska in May and even though he did very well and loved the cruise he has been going down hill since.
Cruising was our passion and we went usually every yr. we went 3yrs ago was our last trip. southern caribbean -went with Bro-inlaw/sisinlaw -DH did very well i must say and seemed to enjoy it all. it was a bit of hassle taking care of his every need and tryingto shower him in that tiny bath! then dressing him for dinner/etc. we didnt do any structured tours so if he got tired we just came back to the boat. my suggestion is go if you can but DO have someone along who can look aftr them for you so you can have some free time as well, too soon you will know its too late. i am glad we had the opportunity to go one last time. divvi
Our last cruise was through the Panama Canal. What a disaster. Hubby raged at everyone. Wouldn't even look at the locks as we passed through. I was afraid we would be put off the ship and told to make our own way home. This has happened to unruly people before.
thats another moral issue i dealt with on a cruise. you really should have someone along,in a real emergency if something happened to me, my DH would be lost and unable to even put on a lifevest or get to his musterstation or anything or even TELL anyone if i got sick. i had issue with mentioning his AD on the ships passenger info due to them maying denying him passage due to his illness. they do ask i think if there is any medical condition they should know about - i never said anything but had lot of agony over the whatifs. thats my it was a great comfort to have my sisinlaw there in case. divvi
Every bit of info helps...thanks again. Right now he is totally self sufficient..admitedly, a tad slow doing things, but still very aware and has mellowed a lot temperwise. He is on Prozac which for FTD his dr. thought was the best starting place, but it takes an entire month for it to show if it works??? Right now he is still confused at times and can't remember names of things, and does most of the things mentioned in all the strings for his level...but...that's now not November. I have decided to go for it, and cancel at the last if needed. I have wheelchairs meeting us at every airport to get from gate to gate. Now....about eating dinner in Barcelona at 9:00 PM ...oh well, can't have everything. Hope they have good room service.
With AD, nothing is a guarantee. DH can be anxious to get out one minute, and anxious to be home the next. Functioning reasonably one minute, and unable to do something simple the next. I'm more the one with fear of taking him anywhere. I could drive an hour to go somewhere he wanted to go only to have DH wanting to go home, or simply too confused or nervous to realize where we were, and what to do there, and NOBODY enjoyed it.
I hate it, but I DO NOT EVER make plans to go far from home with DH. He is still way too together to have sitters, but wants to be with me. This hampers me in the simplest of ways. We live somewhat rural, so when I go to town I used to spend a few hours doing several things like errands, shopping different places, and scheduling appts all on the same day. Now, if I have to cart him along I too often have to come home before getting half of my tasks done. So very frustrating.
I am sad about it, but I can only read disaster into making any kind of travel plans with DH. That is why I had to loosen the umbilical cord somewhat and be happy that my two teens each had opportunity to do some travel for a few days with their friends. They have missed out on so much over the past few years.
Thats exactly it, New Realm. I was posting about going to San Antonio to see our grandson participate in an athletic event. We spent one night. Even though DH wanted to go and managed fairly well, it was stressful for both of us. The effort it takes to DO those things or GO places is has become the main consideration now. I have had to arrange for an early flight BACK from a trip he insisted that we take to the Smoky Mountains to see Fall Colors.. He's never been a traveler and never been 'inspired' go anywhere but for some reason he was 'stuck' on seeing the leaves.
We were in a resteraunt somewhere in Tennessee. He saw leaves outside that he wanted and insisted that we go buy garbage bags and come back to get those leaves. It was raining. When I told him that we couldn't do that right then, he got disgusted and that was it for the rest of the trip. He was not interested in anything further and ready to come home. Nuff said.
Kathi, do not panic just because most of the posts on this thread are about bad travel experiences. There are a number of other threads where people have posted very successful trips with their ADLOs.
Since my husband's diagnosis of moderate AD three years ago, we've traveled several times. We spent a long weekend in Monterey CA (his favorite place in the world), which he loved and keeps saying he wants to do again. (I did have to hang onto his belt in the airports, or he would have disappeared on me in seconds, that part did confuse him.) We'll go again once I've gotten out from under the current mess of my company heading into the toilet.
I've also taken him along on a couple of business trips. One was to Montreal, where I was speaking at a large symposium ... we spent as much time alone together, doing quiet things, as possible, but he seemed quite happy even at the symposium itself, and chatted with people waiting to talk with me. Another was to visit two companies in two different cities on the east coast. I scheduled an extra day for resting in each city. Again, aside from being confused in airports, he seemed fine, and did well in the meetings at the companies.
FTD, I'd agree with bluedaze and Anita ... I would NOT have taken my husband along if he'd said he didn't want to go. He used to travel extensively for his work, all over the world, and he wanted to go with me. When the time comes that he expresses reservations about going, we won't go. Period.
Last Spring I signed up for a bus trip to Quebec, leaving from our retirement home. A good friend of ours is also going with us and can help take care of DW. But now I am wondering if she can do it. She gets very tired by the end of the day, and is constantly trying to figure out what is going on. At supper last night with daughter and son in law, we were talking about the beach party and sailing we had done that afternoon. DW commented that she wished she had been there - no recollection of having been there. I think what I will do on the bus trip is wait until the last minute and then decide. If we decide not to go, I am sure we will have to lose the money, particularly since the trip is only barely up to the number to make it break even. Also, she obviously will have no memory of the trip, so it is primarily for me.
JudithKB - Wasn't Alaska beautiful? This is where we cruised and the weather was great. I am glad your husband enjoyed himself. I am not positive mine did and he has made it clear he never wants to go again. I think all the airport travel did him in. You mentioned that your husband has been going downhill since. Do you mind sharing more details? My DH is more confused, disoriented and has said he is scared. He does not want to leave my side. I had heard this could happen, but wondered if he would bounce back. Alice
Alice: Yes, Alaska was beautiful and a wonderful trip. My Dh's decline since returning is mostly his anger and language problems. Also in his ability to understand TV programs and conversations. He has had two bad spells of anger that kind of scared me. I have been told that my DH is moderate to severe..he is only 61 with EOAD. But, I have also been told by another medical person that he is only mildly disfunctional. He is also very depressed. I am so confused regarding where he is because he seems to go from different stages all the time and to different degrees...that is why I am afraid to plan another trip with him. I have no one that could travel on a trip with us.
JudithKB, the stages are our guide, however not set in stone. A lot of the different steps of the different stages appear at different times on each individual. My husband has never shown the rage and violence, but can only speak a few words, and shuffles his feet like a 90 year old. He sometimes get confused when you try to give him a direction but at other times he's almost "with it" for an hour or so. It is really weird. From what you are saying, if he were to have medication for his depression, you might think you could handle him. It is still a while yet before our Caregiver cruise, so you may want to get some medication for him and see how he does with it before deciding one way or the other, and also you can talk to Patrick and see what he says when it gets closer.
Alice and Judith, we went on the Alaskan cruise with 4 day pre-cruise beginning in Fairbanks and going by rail to Talkeetna, then bus down through Juneau to the ship and loved every minute of it! Alaska is such a beautiful area, and the towns were well maintained and flowers were everywhere! I loved all the animals we were able to see as well.
This morning before I could get my bathrobe and slippers on, DH asked me 4 times if I'd slept good. I answered 'yes' each time. On the 5th questioning, I snapped back "yes!" I put the tea kettle on and he came up and asked me again. It's been that way all day. I'm so ashamed of myself for snapping at him like that.
I am in the process of hiring an elder attorney. We made our wills & POA in 1995 and had them reviewed just about a year ago--the day DH was diagnosed with AD. Ironic, isn't it. Since then, several people have suggested an Elder Attny. So, that's what I'm doing.
I'ts a lovely day here today--sunny, not too warm (72) and a slight breeze. I need to keep myself uplifted and in a good spiritual place. I read the little offering by Imohr (title: How life is measured....) Wonderful. Take a look at it if you haven't already seen it.
Will wonders never cease? I made 3 phone calls and have an appointment with an attorney who specializes in elder law at 10 a.m. Wednesday (July 30). Bring DH with you and all your papers. $35 for the first 1/2 hour consult. We'll see what I need to do to make sure all of my ducks are in a row. Wish me well. For some reason, I'm rather nervous. Don't know why.
Mawzy, The $35.00 boggles my mind. The attorney I have charges $350.00 an hour. The first consult was quite a bit longer and cost me $525.00. The next one on the Medicaid part was $1,200.00 plus $525.00 for the Wills and POA's and Living Wills. For the attorney to do them I have to send a retainer of $2,000.00 and I know that there will be more on top of that!!!!
I may be in "la la" land. The $35 is just for the first 1/2 hour to see if we want to hire him. I have NO idea how much he charges an hour. Perhaps the lawyer will bankrupt us before a NH and medical bills will. Who knows.
OK Mawzy, this is my 3rd attempt! I will try to remember to click on "Add your comments" this time.lol. The lawyers I have dealt with have normally broken down their hourly fee by the half hour or quarter hour. If your lawyer is running true to form that would mean his hourly fee is $140.00. If that is the case don't let him get away:-O. Good luck and I hope he can help you through all the legalese.
Mawzy - Praying that all will go well for you on Wed. :)
Marsh - Do hope you'll be able to go on the bus trip...and it would be okay if your DH didn't "remember"; just the fact taht she was with you & did enjoy it @ the time will be a memory that you will have forever...perhaps you can also take pictures, and that would help her "remember". Y'all need to go for "you", if you can.
Mawzy -- lots of lawyers will do an initial consultation for free, typically half an hour, sometimes a whole hour. So the $35 probably has little to do with hourly rates once someone decides to retain the lawyer, it's just a way of not charging you full freight until you're sure this is the lawyer for you, while at the same time making sure you're interested in retaining a lawyer, not just getting advice for free.
I understand why you'd be nervous ... it just makes things a little too real. I'm sure everything will be fine, the lawyer will come up with some very helpful suggestions for you, and you'll be glad you took this step.
I explained that DH has AD and should I bring him with me. Yes! Do bring him. We don't want to exclude DH from anything while he is still able to comprehend what's happening. I don't really know how much he'll digest but we'll see.
Thanks for your encouragement. I'll let you know how it all turns out.
My husband likes to be included in things like that. I think he understands a lot of it at the time, but then of course loses a lot before we've even left the office. But I believe one of the reasons he trusts me is because I always ask if he wants to participate. (I even took him along for meetings to set up the conservatorship. At first, the attorney was appalled, but she settled down when she saw how he behaved.)
My husband goes along wherever I take him and he listens and nods when I answer. He trusts me as I have trusted him. He knows I will take good care of him. Our 47th anniversary is August 26th. I wonder if we'll make it to 50.
Mawzy, My husband went with me the second time we went to the lawyer because she thought he should be there to understand what she was explaining. He did understand quite a bit but afterwards asked me to clear some points. The papers we got in the mail about the Wills etc. he didn't even want to look at. I think some things are just too complicated for him to understand. He will have to go with me when these things are done so he can sign them. Fortunately he still able to sign his name.
When my DH and I went to our eldercare attorney, he did very well. I reviewed everything with him very carefully afterwards, multiple times at different times of day to ensure I continued to get the same answers. At the time, I think he understoond what was being asked of him and what he wanted. There was only one change to his will and everything else of his stayed the same. The bigger changes were to my will and DPOA as I had to take him off of them. That was a kick in the gut too - more affirmation that he was never again going to be the way he was.
Mary, When did you go on your trip? It sounds just like ours. Wouldn't it be crazy if we were on the same one at the same time! We arrived in Fairbanks on July 8th and arrived on the cruise ship (Princess) on July 12th. I really enjoyed the cruise more than the land, but I did enjoy the beautiful scenerey on the train ride. Alice
I'm just remembering a mother and daughter on our cruise through the Panama Canal. They were doing it in memory of the husband/father who died of AD before getting to take the trip he talked about. Maybe we should set up another cruise for those of us who could never now go on the Caregiver Cruise - for that time when we are alone. I'd love to meet folks from this site...
We were on the Celebrity Alaskan Cruise 3 years ago. I remember it vividly - we went horseback riding and dog sledding, and gold mining.... I look through that scrapbook a lot!
Starling, you are right - last summer WAS a milion years ago...
I took a trip with DH last month to Texas and we went to Sea World with one of our Daughters and her family. He has taken Namenda since March, and I noticed a big change in him, for the better. I could not travel with him before anymore. But the trip went well and I was told by his Doctor to take advantage of it while it lasted. So we will take more trips, short trips to be on the save side. He enjoyed the shows at Sea Word, but forgot about them soon after.
Carma: May I ask what stage your DH is in?? I am considering another trip with my DH but he has gone down hill since our last trip in May....so I am just trying to figure out what I should or should not do.