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 traveling with lo 
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Joined: Tue May 08, 2007 8:10 pm
Posts: 27
Location: NEW YORK
Post traveling with lo
My mom and I are originally from Arkansas which is about a 24 hour drive from Buffalo, NY where we reside. I have been toying with the idea of taking her home to see her last living sister before she declines further. She has not been there in about three years. Has anyone taken on this type of venture with their lo. She does have dellusions, capgrass, and most times does not know Im her daughter, but she knows(most of the time) that i am someone she trusts and recognizes my face. I guess my fear is the change, she probably would sleep most of time in car, but when we have to stop in hotel that is a concern that she wouldnt settle. Any suggestions/comments/thoughts? She is prescribed clonazapam every eight hours if needed, but so far we have only had to do the one at bedtime. Any thoughts are welcome! Thanks.

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Hanging on


Mon Jul 09, 2007 10:36 pm
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Mary:

We've had better luck travelling with Cal since he started taking Provigil, which is the very opposite of a sleep medication - it keeps people awake. It's sorta cutting-edge in LBD care, but it seems to keep people from having as many delusions - like the one we had where Cal was convinced his son, Jon, who was driving, was trying to do something bad.

Try a couple hour-long rides around town after a few days on Provigil and see how it goes.

E

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Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Mon Jul 09, 2007 11:35 pm
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Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
Post traveling with lbd
It is difficult for someone with LBD to travel. We get confused, restless, upset, angry, combative. There may be problems with urinary incontinence. I know I can't handle long car trips anymore. We've have to drive to Little Rock (we live in Fayetteville) a few times for testing. We have to go again really soon. I hate those trips, and so does my wife. I feel for her having to put up with me. I have to take an anti-anxiety and a boost of Seroquel for those trips. But even so, I sort of flip out sometimes. You've asked for advice, so I'll give it. I think such a trip is ill-advised. It'll be too hard for your loved one. And will she even appreciate the trip? Will she even know her sister, her hometown, the local Dairy Delight where she had her first date? Will her sister be able to handle it if she doesn't know her? At this point in your mother's life, the least amount of change and upset the better. Would it be possible to bring her sister to see her instead?

I do want to be sensitive to your own feelings and needs. The pastor in me really feels for you. I wonder if this is a trip you need to make for yourself? Your mother's memories are a part of you. And as your mother fades, so does a part of you. Maybe you could take a trip down memory lane in your mother's place? Maybe bring a camcorder, take photographs, talk to people from your mother's and your past?

Just an idea. I guess I'm just saying that you need to take care of yourself, too.

Randy


Mon Jul 09, 2007 11:48 pm
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Joined: Wed May 30, 2007 12:09 pm
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My mother hates long car trips. She has trouble getting in and out of cars. A LOT of trouble! Also she has bathroom problems and finds it difficult to use public restrooms or even bathrooms at relatives homes. Those would be the problems we'd face if we traveled with mother.

Randy,

Mother is on Seroquel. I am not sure if it is doing any good yet. She has been taking it for about 19 days.
Can you tell me how it makes you feel or helps you? Her hallucinations are an on going thing and her capgras with dad has never let up and is really a BIG problem.
Thanks for any input.

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#1daughter

Caregiver to 84yr. mother w/LBD & 83yr. dad w/PD


Tue Jul 10, 2007 12:48 am
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Joined: Mon Mar 12, 2007 8:29 am
Posts: 69
Location: uk
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Our Mum always loved holidays, having family all over the world encouraged alot of mediteranean trips and also a couple of trips to Australia. This is one thing she REALLY misses. She asked my husband a few days ago to take her on a break somewhere, just to get away...we're now planning a mini break in a holiday park. My SIL and her family are also coming along as support will be necessary.

The whole trip will be planned like a military operation and we'll have to have lots of bathroom stops. I think as long as your Mum's happy to go and you take support with you, you should be ok.

The suggestion about taking long car rides before deciding is a good one and I think maybe we'll try that out to. But then the UK is alot smaller and we can be in a resort in an hour...

Good luck
~Dawn


Tue Jul 10, 2007 4:33 am
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Joined: Tue May 08, 2007 8:10 pm
Posts: 27
Location: NEW YORK
Post long car trip
Thank you all for your input. At this point ,I guess the reason for the trip was a way for my relatives to say goodbye to her while she can still communicate, albeit sometimes not logically. She talks alot about her sister. We do not have so much problems with incontinence and bathroom trips at this point. Actually she is pretty mobile still. She does get quite stiff when sitting for long periods. We have been on a couple of daily errands (running my kids here and there) where mom has been in the car for a couple of hours, more or less, and the problem has been confusion about leaving someone behind, who is already in the car, (capgras confusion) With the Provigil advice, how long does the stimulant last on yourtfather? Does it wear out in time for him to rest at nite? I wish I had done this last summer, but life happens. To RWGraves, you are very articulate,hope not to blunt, how have you managed to keep your wits about you? Thank you all again for taking the time to post.

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Hanging on


Tue Jul 10, 2007 7:26 am
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Location: Seattle, WA
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Provigil's effect isn't like stimulants like caffeine or amphetamines - it's a very subtle wakefulness/vigilance-promoting effect. Cal's ready for bed when he's ready for bed - around 8:30-9:30. He sleeps the sleep of the dead until the urinary problems catch up with him. What we've eliminated is the 20 hours a day asleep - and no more catnaps! He's really so much more awake and aware - our neurologist, who hadn't heard of using Provigil this way, is insanely impressed.

Cal takes it at 8AM with a hit of a quick-acting/quick-disappearing amphetamine to get the day going - Provigil takes about 2-3 hours to reach peak blood level. I've taken it for jetlag, and have not noticed delayed sleep - I get in bed when I'm ready, and I'm out like a light in a few minutes. In people with narcolepsy, the original target for Provigil, it's not known to increase nighttime sleep latency (how long it takes to fall asleep) substantially.

It's safe, well-tolerated, and you'll know in a few days if it's working. I'm not the only person here who thinks that Provigil gave them back the loved one they knew.

Eric

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Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Tue Jul 10, 2007 2:05 pm
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Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
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There's a lot of good advice here. A couple of you have asked me questions. First, about the Seroquel. I take 600 mg per day, after the evening meal, because night times are the worst for me. I tolerate Seroquel very well. I don't notice any side effects. It does have a mild sedative effect, but that's a good thing for me. It helps me sleep. It controls my hallucinations quite a bit at this stage. When I am off it, I have a lot more hallucinations and delusions. Some of them are every bit as bizzare as the things I've read here. But Seroquel doesn't stop every 'spell.'

As to how I keep my wits, I don't really. I have some very strange behaviors. My poor wife Tamara has a hard time convincing me that my hallucinations and delusions aren't real. She has to hide the car keys. There are times I 'space out' and just sit and stare. I don't respond to people, even my own kids. Tamara has to literally take my face in her hands to get me to respond sometimes. But at other times, like now, I feel fine. I think if I had to I could write a sermon or visit at the hospital, teach a class, perform with a band, work on my novel . . . anything I used to do. I feel like myself. But that could change at any time. I'm not exaggerating to say that by the time I click on 'submit' I might forget that I have written this. I've gone back and read some of my posts and wondered if I had actually written what I did. I only write here when I feel normal.

What I wonder is how my wife keeps her wits.

randy


Tue Jul 10, 2007 9:36 pm
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Joined: Fri Feb 16, 2007 6:13 pm
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Location: Fayetteville, AR
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This is an addendum to my post above.

I said I felt like I could do anything I used to do. That's not exactly true. I have a lot of physical problems that never go away. I fall a lot, so I have to walk with a walker or a cane. I feel fatigued almost all the time. I have trouble finding words all the time. I get choked on saliva frequently. It's embarassing to say, but sometimes I have problems with incontinence. I'm 41 years old. Two years ago I was coaching my daughters' soccer team. I could play basketball with my kids or lazer tag with the church youth group.

For me, these physical problems are just as hard if not harder for me to accept. In so short a time I've become an old man.

Randy


Tue Jul 10, 2007 9:43 pm
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Joined: Wed May 30, 2007 12:09 pm
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Dear Randy,

Thank you for answering my questions. You are a great help!

LBD has taken a lot from you, but it cannot take away the beauty of your heart ,mind and soul. You are indeed a very special person.

God bless you

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#1daughter

Caregiver to 84yr. mother w/LBD & 83yr. dad w/PD


Tue Jul 10, 2007 11:58 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Randy wrote:
"I wonder how my wife keeps her wits."

She loves you madly, that's how. She would do anything to keep you safe, unafraid and comfortable. When she touches your face to get your attention, it is also giving her the desperately needed physical connection that reassures you that you are still you. She keeps her wits knowing that you marvel about the fact she is keeping her wits. She wants to make you proud and keep your children feeling secure and connected. She wouldn't trade the time you have had together in order to have this cup pass her. She is so sad for what you are having to endure that she feels she has the easy part. And, it all comes back to the fact that she loves you madly. In the moments when you can remember to, touch her face ... she'll understand.

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Renata (and Jerome-in-Heaven)


Wed Jul 11, 2007 4:29 am
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Joined: Thu Jan 18, 2007 11:38 pm
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Hi I took my dad on the very same trip before he was diagnozed and before things became too hard. All I can say is that it was a difficult trip - I'm glad I did it but it was still difficult - he had wanted to go back to see his sister and brother this past October and I was going to take him but things went south and now that is no longer possible. I understand your wanting to take her back but what might work best for all involved would be to get her sister to come there if possible. They could visit, maybe for the last time but it would probably be a lot less stressful for both you and your mother.

Kani


Wed Jul 11, 2007 9:23 pm
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