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 traveling 
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Joined: Mon Feb 04, 2008 7:47 pm
Posts: 32
Post traveling
I would like some comments, experiences, etc. about traveling with your LBD loved one. We have always loved to travel, and have continued to do so, however before we leave, my husband has always had exaggerated symptoms. By that I mean the complaint of dizziness is more intense, shaking is worse, memory is worse. When we get on the road a lot of this gets better. Last weekend we went to Dallas and visited family there, he did very well and his obsession with sex decreased, he went to bed early (6:00), but carried on descent conversation, and enjoyed our family. This was to be a test trip, however all this week he sleeps most of the time, seems weaker, shaking is increased. This trip is to Mich. to visit our children and grandchildren who live there, also to revisit friends and places where we lived in the past. The thing I am wondering will this possibly make him weaker? We plan to take our time, as I am the only driver, this one will be longer than any taken to this date (3 to 4 weeks).
Any comments will be welcome. Wilma 74


Sat Sep 12, 2009 6:34 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Wilma,
It takes our loved ones a great deal of energy to keep up appearences when in the company of others, so I am willing to bet the fatigue is largely due to that, I would travel as long as you can and with a long trip such a 3-4 weeks, hopefully he will settle so.
Good Luck and travel well!

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Irene Selak


Sat Sep 12, 2009 6:43 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Wilma,
We also loved to travel, we did fly to FL the last 2 years and had issues both years, but I was able to deal with them. I've decided, at the moment, that we will do 2-4 day trips but stay in New England so, if need be, we can get home. I think if I were going to visit family I would be more likely to venture out a little further. Enjoy today because we don't know about tomorrow.
Take Care,
Gerry


Sat Sep 12, 2009 8:41 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Travel can be very wearing on the LBD person. The symptoms you describe are typical of one with LBD while traveling. They seem to do better in their own familiar surroundings. My LO would get very confused when staying in a hotel. Dementia symptoms were much worse. One of the last trips, we came home the very next day and cancelled the rest of the trip. I do hear of many that do well also. Its very individual.

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Dianne C.


Sun Sep 13, 2009 12:49 am
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Joined: Tue Jun 09, 2009 11:11 pm
Posts: 117
Location: Tucson AZ
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Yes it is so individual! two years ago we went to colorado and almost from the moment we got into the car he didn't have a clue where we were going. He thought I was a chauffer but did give me kudos for good driving and wondered how I knew so much about him. This year we went to San Diego (we live in AZ) for a few days and it wasn't w/o trouble but looking back was glad we went. I just keep thinking maybe this will be the last time. They do get very disoriented elsewhere and when we were among family in chicago 1 year ago, he had a couple outbursts but for the most part did well.It's just very hard to travel if you are doing it alone, take a lot of talking to myself to prep me for the worst. Some days were very bad. Have no expectations and if he has a good day you won't be disappointed.

I am not as brave as you are on going for 4 weeks, but you know better the situation.Plus how long does it take to get there? My husband had the hugest obsession with sex too and I can sure empathize with that. Fortunately after he had a huge episode and was put on meds, this all faded. The meds take a lot of that out of them.He also get's weak, shaky and exaggerated symptoms too when he knows an event or special outing or even church day is coming.

I hope you have a wonderful time.
Lori


Sun Sep 13, 2009 1:12 am
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Joined: Wed Oct 08, 2008 10:30 pm
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Location: Henderson, Nv.
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Allow yourself plenty of time...in case he has some bad days...which would allow you to rest in one place and help him to reorient himself. Don't know his bathroom situation but I took the portable urinal with us everywhere in a travel bag so as not to embarrass him and to protect his dignity. We had to stop every two hours, sometimes more. I stopped to eat at restaurants that he remembered and liked. Hotels for us were the biggest problem. He would get very agitated and nothing seemed to help. I think it may have been because he would not know where the bathroom was and the room arrangement itself was not familiar.
I give you a lot of credit for taking a long trip...you are a good strong person. The memories will be lasting ones. Do your best, have lots of patience and enjoy yourselves. Wishing you a safe and happy trip.

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Dianne C.


Sun Sep 13, 2009 11:12 am
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Joined: Fri May 11, 2007 12:54 pm
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Our loved one would be all excited about going on a trip, but when the time came for us to leave she would panic and think that we were taking her to the psych ward. Sometimes we could convince her that we were not going to a psych ward sometimes we couldn't. And the times we did get her to go somewhere, she would be exhausted when we got back from working so hard to put on a good face to the world.

Joyce K


Sun Sep 13, 2009 7:29 pm
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Joined: Fri Jan 23, 2009 4:11 pm
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Location: N Calif
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Last fall we drove to our daughter's home for Thanksgiving- 10 minutes after we started GW asked" Where are we going" ,"Why are we going there?", "Are you sure we're on the right road?" "do you have enough gas?" "are we almost there?" etc all the way for the entire 7 1/2 hour drive. he would not even try to relax or sleep just kept eyes on the road and repeating those questions the whole way. even thru the lunch stop. The trip home was almost as bad but I did stop for lunch and let him sleep in the car in a cool shady place for about an hour mid way. I will not do that drive with him again.
We moved back from our paradise in Hawaii 6 years ago. Went back to visit for the month of Feb every year since -but no more. It was OK as long as we had the same apartment each year- but the last time he did not remember it- and he couldn't be left alone- even for me to play tennis on the court 1/2 block away - I hired a local caregiver company to send people to stay with him. also had to find a portable toilet with raised seats with armrests & a shower chair (I now have 3 sets of these equipment stored with family members in different states) It is also very difficult to assist him in an Airplane lavatory-- Had to do it with open door--trying to block public view as much as possible. The last time we were sitting at our daughter's home and GW's sister was sitting beside him, he anxiously asked, "Who are all these people" . Sister was shocked !!! I realized right then that taking him from his comfort zone is not fair . We will let all family and friends come see us from now on. I have also relieved myself from the stresses of making sure every detail is identified and perfect. However, I am beginning to explore short respit trips, thanks to a very able carehelper.

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Di


Sat Sep 19, 2009 6:26 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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I've read all the loving and caring thoughts so many have for their loved ones, especially for their husbands. I do love Frank, give him a hug and kiss and tell him I love him when he gets up and when he goes to bed. So often I remember I never say it during the day. I never yell or get mad, a bit frustrated and I'm sure he gets that. I spend so much time following him, cleaning up the mess he made, changing his wet clothes because he didn't call for me to help, helping him shower and dress & undress, redressing him because he thought I told him to change etc & etc. You all know, but you still seem to have that special, loving time. Frank was a plumber and frequently thinks he needs to make repairs, so I'm usually two steps behind him when he heads to the basement trying to tell and show him it is as it should be. Well I've sputtered enough, at least I gave my sister a break tonight. I shall TRY to express my love through the day, between all the cleaning up, I don't want to look back and have regrets. Caregivers, I salute all of you!
Take Care,

Gerry


Sat Sep 19, 2009 10:12 pm
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Joined: Thu Sep 10, 2009 2:29 pm
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Location: Marco Island, FL
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Oh, Gerry, your post really hit home with me. I, too, have deep love and show love for my dear one, but It's a full time job, isnt' it, following a Lewy patient around and either dealing with disaster or preventing it. Patience is a new and necessary trait for me now, and I"m working very hard to incorporate it, but there are times I have to work pretty hard to keep the crabby lady at bay.

Right now we're at the 12-18 month old stage. You can't let them out of your sight for a minute, they haven't quite mastered balace, aren't potty trained, need help dressing, eating, and don't contribute to the household at all except for the winning smile, which, when it happens brings peace and joy.

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JoAnn

"It's not what you look at that matters, it's what you see.".....Thoreau


Sun Sep 20, 2009 8:13 am
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Joined: Mon Feb 04, 2008 7:47 pm
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I appreciate all the posts. We have had to scrap the trip plans, as his delusional thinking and dreaming is getting becoming more intense. He is extremely focused on what I am doing with the neighbor, and tells all the family very graphic in what he tells the family he sees. I am thankful he has not started telling other people what he sees. Seroquel has been started, and we are 6 days into treatment, without seeing improvement. I know it may take at least 2 weeks, but the doseage was increased today to 25 mg. twice a day. The shaking has increased, and seems to have begun having trouble swallowing. He does know us all, but he has but one focus, and that is hard to deal with as he has gotten angry and threatened the neighbor. He actually didn't, but in his mind he did. We are trying to figure how to keep us all safe.
Wilma


Wed Sep 23, 2009 9:58 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hang in there and stay strong. If he is having delusions about you and the neighbor nothing will change that...in his mind...it is what it is. My LO accused me of inappropriate behavior with our best friends husband...good friends of almost 30 years. He even called him up and told him that. How embarrassing! But thank goodness, good friends understand the illness. He also suspected me and a neighbor (whom I don't really know except to say hello to). I tried to ignore it the best I could. I understand how difficult it is for you.
Thoughts and prayers to you.

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Dianne C.


Thu Sep 24, 2009 5:15 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post traveling
Hi to anyone interested.
A while back I asked your opinion if I should go to Florida with my husband. Most of you said we should, so here we are in Florida.
We made the trip back to Florida by plane and trankfully everything went perfect. He was looking forward to the trip and has behaved really well. He likes our apartment. I think because it is so small and he likes that smallness, and we have been doing this every winter for 14 years now.. Same place with our own belongings.
We are walking outside a couple times a day. The only thing I have noticed, when we meet neighbors on our walk, he will take my hand and almost run so he doesn't have to talk with them. Funny how slow he walks at the airport and how fast he can go if he doesn't want to talk. We will be celebrating Christmas alone and that is ok with me. I don't want to put him through the same thing as Thanksgiving.
We will stay in Florida until the snow stops in Wis or if he starts to need to see his doctors in Wis. The doctors all gave us their blessings and said we can talk on the phone if I have problems.
Just thought I would check in with you, now that I have my computer up and running.
Happy Holidays
Mary


Sun Dec 20, 2009 12:19 am
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Joined: Tue Jun 09, 2009 11:11 pm
Posts: 117
Location: Tucson AZ
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That's wonderful news! I am amazed also that when they need to go somewhere or have it in their mind to get there how fast they can go, but when I want him to hussle, it's like pulling teeth!
Lori


Sun Dec 20, 2009 12:27 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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I'm so pleased that your trip went well, enjoy Christmas and have a happy, uneventful New Year.

Happy Holidays,
Gerry


Sun Dec 20, 2009 1:22 am
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