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 New to the site...59 year old mom in late stages of LBD 
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Joined: Thu Dec 14, 2006 2:35 pm
Posts: 1
Post New to the site...59 year old mom in late stages of LBD
ok, I am new here and I know I will post often but I wanted to just put a little intro out there and meet you all. I am 33, a mother of a toddler and my mohter we thought has had Alzheimers for 7 years. This is what the nueroligist always said, but we did know that she was diagnosed with "Dementia" since Alz is not diagnosed until death. Well as of recent the seizures were getting worse, she has been rapidly declining and her general doc was just not able to handle her anymore. I did not know where to turn so I called my local Alzheimers Assoc. on Long Island and they referred me to the most wonderful doctor of Geriatrics that specializes in dementias. I can not believe we did not find her years ago, but I am so relieved to have found her now. My mother is incontinent, has a full time wonderful caregiver and needs most things to be done for her. She now needs assitance walking, this is new and she will still feed herself now and then. We are in the advanced stages, but her wonderful caregiver still gets her out, today they were in the mall and had ice cream. The new doctor said we should only expect 6 months to a year left for her in her medical opinion. My father does not want to believe this but I think it is accurate. I understand losing the ability to eat is one of the major factors with LBD (I have read alot today). I am a teacher so research is my forte. This disease has just been so hard on our family for the last 7-8 years and I need it to end. My father sees it differently. I am trying to raise a family and it is so hard to do when you are grieving the loss of your mother for so long. My mothers mother had Alzheimers (so we thought) for 15 years and she too was young....(60-75). I thought for sure I was at risk, but now I am reading that LBD is not genetic. I still think she has a combo of both diseases, but we will never know for sure until an autopsy is done. I think this is enough info for now, any feedback would be great!!

Cheryl D
59 year old mother in final stages of LBD

Thu Dec 14, 2006 7:41 pm
Hi Cheryl.
Welcome to the LBD forums, I am glad you found us and I am also happy to hear you are reading all you can about this dementia, it's your best defense, I know this has to be hard on your family as it is on most families. Join us often! :)

Sat Dec 16, 2006 9:37 pm

Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
So sorry to hear your family has been going through this for so long. And even more tragic that it started for her at such a young age. I can only imagine what the last few years have been like for you all and your Mom. It sounds like you did have a little luck with finding someone to help with your Mom. Good caregivers are difficult to find, and a blessing when you have one.
I hope your Mom's doctor referred you to hospice. My Mom is not quite to that stage, but we had hospice when my Dad passed and they were wonderful. They might be able to help your Dad understand and accept what is happening with your Mom. They are an amazing resource for families losing a loved one.
Keep in touch, my prayers are with you and your family,

Sun Dec 17, 2006 2:14 am

Joined: Sun Dec 03, 2006 12:51 am
Posts: 31

I sympathize with you. My mother is only 71 in the late stages of LBD. Caring for her and thinking about her has consumed my life. I have three children, two in college and one in high school. I feel as if I have checked out of my youngest daughter's life. I'm either at the nursing home with Mom or half way listening to what my daughter is saying when I'm with her. When my Mom cared for my grandmother we were all grown with our own families. We were old enough to help her. My friends can't possibly understand what I'm going through because you can't imagine what it is like unless you have been through it. They just keep asking, "How is your Mom?" How do you answer a question like that? I just say, "She has good days and bad days". They don't want to know the real answer, "Every day my mother is getting closer and closer to death. It's like a knive turning in my heart. She smiled at me today though and responded when I said I love you so I guess it was a good day." Do you think people could handle that? No, they can't. Hang in there. You are in my prayers.


Wed Jan 10, 2007 3:14 pm
Hi Cindy,
I know what you are going through is very hard , I know I have been there and done that, I feel like for the last 3 yrs of my Husbands life my son who is now 15 just sat on the out skirts of our life, I had my Husband home and the care was great and the exhaustion was more than one could bare most of the time, but now that it is all over and I am a full time Mom my son faired well after all, yes we deal on a daily basis that my husband/His Father is gone but we are trying to get on with our lives , but often I wish I could have just enjoyed the time we had left wih him more so than worrying when he would die, I know this is a tall order when you are living it. Just some thoughts for you! :)

Thu Jan 11, 2007 10:52 am

Joined: Sun Dec 03, 2006 12:51 am
Posts: 31
Irene, I am sorry for your loss. As hard as this is on me as a daughter, I know that it is 100 times harder for my Dad. This is his wife, his soul mate of 53 years. God bless you and your son.

Sun Jan 14, 2007 2:19 pm
Hi Cmiller,
Thank you! It is also hard on you and you may think it is harder on your Dad and it maybe but I think it is hard on all involved, Strange thing that always comes to mind is the day we were married 35 yrs ago, "Till death do us part", I think for me it meant when we both died it never crossed my mind that one would die befor ethe other! Juts be supportive for your Dad he needs you now as his world is falling apart! :(

Sun Jan 14, 2007 4:08 pm
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