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Joined: Thu Mar 04, 2010 1:43 pm
Posts: 1
Post heartbroken
My dad is only 68 years old and has LBD. I doubted it for awhile, but now I'm really sure of it. We saw his neurologist (who is very compassionate) and he is now on hospice care. His MD name is Dr Ralph Round and is in Denver Colorado. He is fantastic if anyone out there needs a good MD and doesn't want the run around. We have been on this journey now for over 7 years. It's like a nightmare. My dad is my hero and my bestfriend! I don't know how this did we get here? Sometimes I just watch him sleep and imagine what life would be like if he was still healthy. He would play for hours with his young grandkids who love him like crazy! I already miss my dad.. I read a quote by a man named Norman.."Death is not the greatest loss in life. The greatest loss in life is what dies within us while we live." What a powerful statement. It has given me such strength! Thanks you Norman!!! I try to remember God doesn't give you more than you can handle. Sometimes we just have to lean on him more. My dad lives at home with my mom who is his caregiver. I really worry about her! He just stopped walking about 3 weeks ago and is total care. I live 1 1/2 hours away and just can't be there enough to help. I miss him everyday! I don't know how to do this anymore!!!!! I feel like my heart is breaking!....Daddy's little girl..

Sun Jul 10, 2011 8:56 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: heartbroken
I'm so sorry, Sandra! Yes, this is a heartbreaking disease. :cry: God bless you and your family.

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.

Sun Jul 10, 2011 9:08 pm

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: heartbroken
Sandra, I understand your broken heart, I hope your mom gets some help, it's a difficult disease so your mother needs to take care of herself.


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

Sun Jul 10, 2011 9:45 pm

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: heartbroken
Dear Sandra, this is like looking in a mirror for me. I know exactly how you feel. My Dad is 85, and I know he has had a good long life, and was in excellent health until 5 years ago. I hate when people say ' hes a great age'. Its like it doesn't matter that he is dying and that we will miss him so much. I know people don't mean anything bad by saying it, but it drives me nuts. I read in an article somewhere that it is just as difficult to lose someone of old age as a young person, because you have had all those extra years to love them, and for them to grow in your heart. I'm not saying it is easier to lose someone young, it just sounds like people are trivialising my Dads decline, an its ok to happen, just because he had a long life. Anyway, off my soapbox.
My heart is broken also, and it must be very difficult for you when you are so far away. I started councelling to help me deal with my fear, anguish and heartache. Hold onto your faith tightly, it is helping me too. I hate to watch Dad just lie there and stare at the ceiling, but he has no interest in anything. Up until this weekend we were grateful that he had no pain, but he had a bad weekend. It is awful to feel so helpless. Be there for him in any way you can - through prayer and love. I'll be thinking of you on your awful journey - know that you are not alone. I may be halfway around the world, but I'm on the same path,
God Bless,
Ger xxx

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

Mon Jul 11, 2011 6:43 am

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
Post Re: heartbroken
Dear Sandra,
My heart aches for you, too! And you are right, it does not matter how old your parents are, it is a heartache to see them suffering and a great void in your life to lose them. My mom is turning 95, and my dad, who is her primary caregiver, is 95. I know we have been blessed to have them with us, and relatively healthy, so many years. And I'm lucky that they are nearby, as is my daughter with her family, so we can see each other and help every day. I'm lucky, also, that my mother's course so far has, if anything, enhanced her sweetness and love of family. Yesterday I brought my 2-year-old granddaughter over to see my folks, and watched her climb into my mother's lap with a pile of books for her to read. And I wondered if she will remember this, and took a picture to remind her someday. I know her 7-year-old brother will remember his G-G and Papa, but Lilac is so small, the pictures may be all we have to share with her. Who knows how much longer they will hang in there? So we are trying to cherish every day, and take pictures, and make as many memories and cherish the best times, and stay patient during the worst times, because 10 or 20 years from now, what will matter to those of us who remain is memories and love. Even if it hurts like crazy right now...

Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.

Mon Jul 11, 2011 12:36 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: heartbroken

Thank you for the suggestion as to the caring neurologist. I'm sure someone will find that very useful.

I hope your father's passing is peaceful.


Mon Jul 11, 2011 1:12 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: heartbroken
I am glad you found the forums to have a place to put your thoughts and comments, I am sorry for yours and the family's situation with your Dad, Sadly life isn't always the way we want it to be and your Dad is young. Some how you will all get through this day by day, my husband was only 64 when he passed so I do understand . I do hope your mom is getting some help. has the family considered Hospice.

Irene Selak

Tue Jul 12, 2011 7:34 am
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: heartbroken
Dear Sandra,
My husband was dx'd in 2006 when he was only 64. It is a terribly heart-breaking disease - so very difficult to cope with and impossible to understand. The fluctuating nature of the disease is crazy-making. I try very hard not to sweat the small stuff and to take the good and leave the rest. Blessings to you and your family.

My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?

Thu Jul 14, 2011 12:50 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: heartbroken
Welcome Sandra. I hope you come here often for support. It is a difficult path but made a little easier when you know you have so many people here who can relate to what you are experiencing, and help you along the way. 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.

Thu Jul 14, 2011 4:20 pm
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