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 Need some Feedback 
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Need some Feedback
I guess I need some feedback. Getting ready to go to Las Vegas, then Laughlin, NV, for bowling sweeps. For those who don't know, this is a competition at the end of a bowling league's season where each team and person competes for a monetary award. The money collected during the year pays out place money for league play and award money during sweeps. When I started the league, my LO had quit bowling due to a shoulder and bicep injury. He had already been experiencing several LBD symptoms, but none too severe. I had expected that he would go with me. He's gotton worse over the past year, but not so much that I can't leave him alone when I go bowling for three hours. I've been in a couple tournaments during the year requiring I be away most of the day and in those cases, I've had my son stay with him, mostly for my benefit. He claims he doesn't need a "babysitter." I arranged to have someone stay here and take care of our dog, but was concerned that perhaps I just needed to arrange someone to stay here to take care of them both. My sister is available for the first two days and my son is available the last day. So, I told my LO that there was an alternative if he was anxious about going to Vegas. In all our married life, he's been unable to make a decision. All the trips, vacations, major purchases, and so forth, have been decided by me. I discuss, he says he had to think about it, a week later I try to discuss again, then later again, and again, and again. Once we get into it, whether it's a vacation trip or a new appliance, he joins the party and enjoys himself. He just never commits. Well, I tried to get his feelings about this upcoming Vegas trip and I get nothing. Just a worried face. With Lewy involved, it's even worse, as it's very difficult to reason with a Lewy, discuss pros and cons, and the like. My concern is the crowds, the noise, etc. The only time we'd be separated is during bowling and he could stay with the other spectators. If the noise got too much or he felt too much anxiety, we could go back to the room when bowling's over. (The whole prospect is scary for me too, plus it would be nice to get away.) He did say he never thought he'd find us in this position, me wanting to go off to Vegas for four days. He said if it was him, he'd stay home. Well, that's not an option for me nor do I think it's fair for him to expect that ---but I have to remind myself that it's Lewy talking. I told him he's going with me, but now I'm having second thoughts. He seems to be worse in the last few days and I wonder if it's not the stress of looking forward to this trip. I don't know if taking him to that environment is the right thing to do, even when I know he really would like to go.

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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.


Mon May 21, 2012 9:37 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3339
Location: Vermont
Post Re: Need some Feedback
It sounds like you have gotten to the point where you have to be more like a parent to your LO than a partner. It also sounds like you know what will probably be best for both of you, so just make the decision and stick with it. You are very lucky to have people who are willing to come in and take care of your LO while you are off taking care of you! I wish you much success in your bowling tournament, and try to get some R & R while you are away. Let us know how it goes. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon May 21, 2012 9:46 am
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Need some Feedback
Thank you Lynn. An update: We go to physical therapy for him this morning. Whenever he knows he has to be somewhere the next day, he gets up earlier than he needs to and thinks he's got to rush and get going. I told him he could go back to bed if he wanted. It was 6:30 a.m. and he normally sleeps until at least 9:00. He said we were called to breakfast. I said we were home. He said he heard it on the loud speaker. I said he was probably waking from a dream. I kept telling him we were home. He finally went back to bed saying we've seen everything around here anyway. (???) This doesn't bode well for me taking him with to Vegas. My sister said she would go to Vegas too and bring him back home if he started having problems. She lives about the same distance from Vegas as I do, only from opposite directions. That sounds like a good plan. God Bless Her.

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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.


Mon May 21, 2012 10:53 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Need some Feedback
One thing I learned some time ago was to never tell my husband he was going anywhere until right before it was time. They seem to obsess about appointments, trips, etc.

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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.


Mon May 21, 2012 11:24 am
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: Need some Feedback
Pat....I do the same, never mentioning any appointment, errand, or visit until just before we need to leave or before the visitor is arriving. It is amazing that all of us do "little" things to make life easier and make our LO less anxious, and until someone else mentions it we don't even realize. Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Mon May 21, 2012 12:21 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Need some Feedback
Pat and Caro, what a great idea. I keep four weeks worth of "calendar" on the fridge. It's the dry erase type where I can change or add to it. He really depends on that just to #1, see what day it is, and #2, know what's going on. He may be reaching the point where I can gradually just erase upcoming events as the knowing in advance has become so stressful. I don't know why I didn't think of that. Thanks.

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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.


Mon May 21, 2012 2:55 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Need some Feedback
I was going to suggest that you ask someone to come with you to watch over him and help him as needed, and then I read that your sister is going. Perfect. I'm just glad he gets to go. I can't take my mom anywhere anymore except possibly a short day trip unless I have at least one other strong person to help me lift her. I had expected to keep her active until the end, but I was surprised by how quickly she's declined. I just wish I had one more weekend at the coast with her, but it would be too stressful on both of us now.


Tue May 22, 2012 11:54 pm
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