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Joined: Wed Nov 23, 2011 5:56 pm
Posts: 2
Location: Nebraska
Post Nebraska
I am new to forum and fairly new to LBDA but not new to the illness. Knowledge is not my problem but my loneliness is. IMy husband was him officially diagnosed on 2007 although we knew it was likely LBD in 2006. I have known my husband for 40 years but only married him in 2005. Shortly thereafter I started seeing his impairments that had been masked by other health problems that were being poorly managed. We got his health care straightened out just in time for the news that he had LBDA. It has been heartbreaking for me but you all already know about heartbreak.
I work full time and have someone come in each day 9-3 to keep his sense of independence so he can visit friends, go to bookstore and his appointments. He has a high sense of awareness, Aside from the memory issues he has had a decline in balance and mobility.
Look forward to being in touch with others.

Fri Nov 25, 2011 5:02 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Nebraska

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

Sat Nov 26, 2011 3:17 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Nebraska
Welcome! Glad you found this forum! Hope you find it supportive.

Have you read the book, Life in the Balance, by Dr. Thomas Graboys? His wife found out after she married him about his LBD which he knew about but hid from her. It was a very difficult revelation for her but she apparently adapted to the situation. He continued his cardiology practice for some time after his dx [!], an interesting account and confession. Anyway, if you haven't read it, you might find it interesting.

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.

Sat Nov 26, 2011 10:13 am

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Nebraska
welcome.. glad your finding your way around.. hope you find the forum as helpful and informative as i have..

i sure understand the loneliness... hubby sleeps 16 hours a night , and is very quiet when awake... real conversations seem to go in circles... miss so many things i had waited to do at this age, but try to compensate with lots of hobbies and activities at home.. but its just not quite the same as a giggly day with the gals..
thinking of you~~~


sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..

Sat Nov 26, 2011 11:38 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Nebraska
I think the loneliness is very hard for the spouse caregivers to deal with. You might look into whether there's an Alzheimer's caregiver support group where you live. I think face-to-face support groups can be very beneficial.

Sat Nov 26, 2011 3:23 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Nebraska
Welcome to the LBDA forums and I agree support maybe very helpful for you, there are no LBD support groups in NE but as mentioned I am sure there are other dementia groups around, My sister lives in Omaha and she just asked for the Info packet from our Association as they just had a resident enter the nursing home where she works so I know there are other families around. Loneliness is a hard thing to deal with but at least you are getting away from it a few hours a day, there are so many here that don't get a break at all, its hard on everyone all the way around !

Good Luck finding soome support !

Irene Selak

Sun Nov 27, 2011 12:51 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: Nebraska
Welcome to the forum!
Have you considered a local hospice as a place to seek out others coping with caregiving? They often offer classes.
Social support can make a huge difference for you.
Take care,

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Wed Nov 30, 2011 2:03 am
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