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 New from Texas 
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Joined: Tue Apr 12, 2011 1:54 pm
Posts: 1
Post New from Texas
Hi, my 65 year old husband and partner for close to 45 years has reached the severe stage of LBD. He spent his career as a kind and brilliant journalist and professor and amassed a lifetime of amazing achievements while being a loving husband to me and devoted father our two daughters (now also professors). At the time he was first diagnosed (5 yrs ago), my mom had come to live with us because of a mild dementia (thought to be caused by stroke damage and possible Alzheimer's).

Husband quickly deteriorated and became much worse than Mom. Mom is 90 now and still functions pretty well. Husband needs constant care, supervision, and help. We're a couple of hours from the Houston Medical Center so we have access to great medical minds. That has been helpful.

It has also been helpful to Find the right combination of meds to help him cope with his terror, and anxiety--but also to help family and helpers cope with his paranoia, nighttime "sleep calisthenics," and his plain old bouts of cantankerousness!! It's not easy is it? Of course, as soon as you think you have the meds worked out, things change and you're at square one again, right?

It is terrifying to not know what is next. To always feel out of control. We have a team of caregivers (me, my sister, and two terrific CNA aides). We plan, we schedule, we follow careful routines, but husband somehow sneaks out an unlocked door. We find him in the turn lane in the middle of traffic. I look back in my life and wonder where this came from. This was not my plan for retirement. What the heck?

Husband calls LBD LewyDewy. He's probably right. That darn LewyDewy!! FooeyLewyDewy!

Mon May 09, 2011 11:22 pm

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: New from Texas
Welcome to a wonderful community who will be there for you in the tough times, (and the good ones too - we have laughs too) with great advice and always sympathy and an ear to listen. These wonderful people have saved my sanity many a time. God Bless, and come here often,

cared for Dad who passed away on January 28th 2013 R.I.P.

Tue May 10, 2011 4:24 am

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: New from Texas
I also welcome you, this forum is my life line. Your story is very familiar, it's a long bumpy road with so many detours, it's a challenge to keep your head above water. Post often and all the best to you and your family.

Take care, Gerry

Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.

Tue May 10, 2011 5:28 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New from Texas
Welcome, and I hope you come here often for support, info., to vent, whatever you need. We are all either in the midst of helping our LOs or have seen the journey through to the end, so we can all empathize with your challenges. All the best, Lynn

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 May 10, 2011 8:16 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New from Texas
I welcome you to the LBDA forums, this is a place of comfort and a place to learn and share.

I hope you can learn to not worry so much about the tomorrows as this is so unpredicatable of an illness, Glad you have a great medical resource and meds are stable.

Just try and find some small joy in each day and take it one day at a time!

Irene Selak

Tue May 10, 2011 10:33 am
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