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 First RV Trip in a Year 
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post First RV Trip in a Year
My hubby and I went on our first RV trip in a year, first since his diagnosis. I've been doing all the driving since November, 2011, so on this trip, I drove the RV. We took it slow, going from our home in Victorville, CA, up U.S. Hwy 395. Our plan was to be gone a week. During the drive, things went pretty good. He didn't sleep much as I'd thought he would, so my worries about him grabbing out in his sleep did not materialize, thank God. His hallucinations appeared to get some worse. Once we stopped at camp for the night, he did ok. We experienced his usual confusion as to time and place, he kept asking what day, where are we, etc. I just kept repeating myself. Each day though he would ask if we were going home. He exhibited the same restlessness at night as he does at home and we found ourselves turning in earlier than usual. Sitting out during the day, watching the lake (Topaz Lake), and the surrounding hills, he would see people, kids, "tractors?" and other stuff that wasn't there. I would look and nod in all the appropriate places. Sometimes I would suggest that he was seeing all the bushes and interpreting them as we sometimes interpret the clouds in the sky. He was ok with that. In fact, since his diagnosis, he's been very much aware of the fact that he is hallucinating and having delusions much of the time. I find his willingness to discuss it comforting in some way. We made it up to Reno and camped at a casino RV resort. It was very nice. Walked to the casino, played around awhile, my eyes constantly on him of course. He had to go to the bathroom and I waited near a bank of slot machines at the restroom entrance hallway. I didn't realize that there were two exits from the men's room and he got lost. He found me just as I was planning to go looking for him. He took the wrong turn when he came out. It scared him somewhat and he wouldn't leave my side after that, which was ok. Each evening there were issues, but all were manageable. He did say each day he wanted to go home, but come morning, he was willing to continue north. From Reno, the plan was to head home, at the same leisurely pace. Rather than take it slow, I drove the entire way stopping only for lunch and to walk around and stretch our legs. His hallucinations, delusions, and overall discomfort were getting worse. It seemed that while we were engaged in an activity, he was fine, but once we parked or once we got on the road and his role was to kick back comfortably and relax while I handled everything, that's when he would be really restless and confused. The trip home was stressful in that he complained the entire time wondering where we were going. He claimed he had never been on that particular road before. He wondered if it was the way to get home from Las Vegas. I told him we weren't in Las Vegas. I described to him each town we would go through, pointed out each camp spot we had stayed in on the way north, described the times we had been on the road before and what we were doing along the way. He didn't settle down until we were 35 miles from home and he began to recognize his surroundings. I had pushed the envelope with him and felt he needed to get back to his familiar surroundings. Once home, he has settled down again into his regular routine, which is to sleep during the day mostly, putz around the yard, feed the turtle, pull weeds now and then, and watch TV. He tells others of the trip and has overall good feelings about going. I'm not giving up on the travel, but I think our next trip will be to a closer campground we have visited in the past. If an occasion calls for us to travel farther, I will plan to take a family member or friend with us. I know it's important to keep our LO's engaged and active, but this travel seemed to be a hugh stressor and contributed to increased symptoms. I am grateful that he can still travel as I know many of you are caring for LOs that can't get out of bed any longer or who need help with the smallest of activity. My hope is to continue to offer him the most of me while he can still participate. I'm open to suggestion from anyone who has tried to travel for enjoyment with their loved ones and how you handled or compensated for the symptoms that invariably showed up along the way.

Best regards and God Bless everyone,
Terri

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Fri Aug 10, 2012 12:10 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: First RV Trip in a Year
I can really relate! During our last RV trip in 2008, my husband complained the whole time, always thought I was driving too fast even though I went the speed limit [I might add that the trip was his idea and against my better judgment]. He would awake while it was still dark and go outside to use the campground rest room [don't ask me why he couldn't use the one in the RV!] and get lost and I would be out with a flashlight looking for him. I'm sure we aroused plenty of suspicion! :lol:

While we were in AZ, he got very sick, physically, and required several hospitalizations and his Lewy got worse each time. :cry:

Since he is in a SNF, I took a four-day RV trip last September. I haven't been out of town since and plan to take the dog in the RV to visit my mom, sister and my best friend. It will be about a week and I'm worried something will go wrong while I'm gone but I'm really looking forward to the break. Next month, I hope to take a 4-5 day RV trip around the Olympic Peninsula. :P Sometimes I feel guilty about planning this but my whole life is centered around visiting him at the SNF each day and I know I need a change of scene.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Aug 10, 2012 12:30 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: First RV Trip in a Year
Pat, I wouldn't feel guilty for two seconds. You are completely devoted to Derek and as we all well know, it takes a lot out of anyone to be a devoted CG. We all need some "me" time. I am glad you can take some RV trips on your own and get a break. Enjoy!!

Julianne


Fri Aug 10, 2012 1:06 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: First RV Trip in a Year
Thank you so much, Julianne! :P

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Aug 10, 2012 2:50 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: First RV Trip in a Year
Pat,

I find myself planning my future alone RV trips in my head. We bought a new, smaller coach (2011) and it's so easy to handle. I do need to find a very small dingy though as having alternate transportation is important I think, especially if you are traveling alone. That way, if something happens, you can always go for help in the car. My husband's and my ideas of trips are quite different. He has always dreaded when I plan a long trip, either in miles or time away. Once we're out, he's calmed and mostly enjoyed the experience. Now that Lewy has joined us, it's more of a challenge for both of us. I locked both the regular lock and the dead bolt when we were at camp as I didn't think he'd be able to figure out how to get out. He has always been one to use our facilities rather than the public ones, so on both those counts, though he did sleep walk one night, he never left the coach. Lucky me. My idea of an RV trip is a lazy trip across country, stopping whenever I want, visiting friends or family along the way when possible, and just getting back home when I want or when weather dictates. I don't know if I'll ever have that chance and just thinking about it makes me feel so very guilty. I love my husband very much and would go to the ends of the earth for him, but knowing where Lewy might just decide to take us is very scary and I have to face the possibility that I will one day be on my own. In the meantime, I will try my best to get him out now and then as he too needs the change of scenery. He will be stuck here one day, but not just yet. When you leave on your trip, know that if he were able, he would cheer you on completely knowing that you were taking the time to care for yourself so you can return better able to care for him.
God speed,
Terri

_________________
Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Fri Aug 10, 2012 3:31 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: First RV Trip in a Year
Thank you, Terri! I posted a picture of my setup in the 'Off-Topic' section. It has always been my dream to just live in my RV and roam around as long as I am able. Only the Lord knows if this dream will ever be realized but I can hope.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Aug 10, 2012 4:49 pm
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