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 Blessings in the midst of lbd difficulty 
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Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post Blessings in the midst of lbd difficulty
My heart breaks reading the recent tales of ER visits, delusional episodes, sleepless nights, falls, and capgras. Nevertheless, I have gained so much inspiration and encouragement from posts celebrating the small victories which present themselves, often unexpectedly, in the daily challenges and sadness that often characterizes lbd family life. These are the bright spots that sustain us and give us the fortitude to continue this difficult journey with our lo's.

As the holiday season peaks and winds down I hope that we can continue to share our blessings with each other. That being said:
I am so grateful that my mom has had 3 good days. Maybe the combination of seroquel and ativan is working, or maybe this is just the proverbial up before the lewy down. She has slept through the night, been awake mostly during the day without extreme agitation, has not been aggressive or overly angry, has followed and engaged in conversations with minimal confusion, and she has smiled and laughed. She even patted her hospital bed, invited me to lay down, and let me snuggle. She let me kiss her nose and call her "my little mama" without glaring back or saying, "I'm not your mama!"

Even though she was grilling chickens on her blanket and worried that the fire would go out, at least she wasn't roasting a pig in her bed as she was over Thanksgiving. Who knows, maybe there will be a cooked goose under the blanket on Christmas Day!
:lol:

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Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!


Tue Dec 21, 2010 9:32 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Blessings in the midst of lbd difficulty
:lol: Thanks for the chuckles, Deb!

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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.


Tue Dec 21, 2010 9:36 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Blessings in the midst of lbd difficulty
Keep that fire stoked, Deb. That way YOU won't have to cook the roast for Christmas dinner! LOL I'm glad you got to see your mom smile and laugh, as those things seem to just about stop. When they do happen once in a while it is like a gift to those who witness it. Just a couple of weeks before my dad died he was joking with the hospice nurse. She had never heard him joke before and said how nice it was that she got to see a glimpse of who he had been. Enjoy it when it happens, 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.


Tue Dec 21, 2010 9:41 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Blessings in the midst of lbd difficulty
Deb,
Yep these are the times we want to keep near and dear to our hearts with our LO's, I am glad you have had an up 3 days , I can only hope it will continue for you!

Keep us posted on the goose if it appears !!

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Irene Selak


Wed Dec 22, 2010 4:10 pm
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Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post Re: Blessings in the midst of lbd difficulty
Thanks for the encouragement and well-wishes. We are currently cherishing each lucid moment. Mom sat in the kitchen in her gerry chair last night while we made fudge. This is a long standing tradition that I did not think could happen this year. My sister and I were delighted and thankful! We'll even cherish the cooked goose if it arrives!
I hope other members will have some good news to share during the final hours of the holidays!!
Merry Lewy Christmas!
Debbie

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Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!


Thu Dec 23, 2010 1:30 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Blessings in the midst of lbd difficulty
Debbie, I am so glad you had some good days to savor over the holiday season.

Coy has made fruitcake every year since I've met him. The year of LBD onset, 2003, he said he didn't want to, and then changed his mind at the last moment. I found that the pull-out breadboards make a work surface at a good height for wheel chairs and, with my constant supervision and help, he made his usual huge batch. He was very proud to give them to family and friends, who were amazed to receive them that year. He has continued each year. It always took two days and my constant supervision, but it meant a lot to him. This year when I asked, he said, no, he didn't think he would do it this year. I just accepted that. I was very, very grateful that it got to be his calm decision and not another thing that was removed from his activities against his will. After all, when you are in your 80s you shouldn't be expected to keep doing what you started in your 30s if you don't want to, right?

Good days and bad days are just part of the package. Here's hoping that we all see a lot good days in 2011!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jan 02, 2011 6:04 pm
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