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 New - my 54 year old Mom has LBD 
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post New - my 54 year old Mom has LBD
Long story short - my mom had some mild cognitive decline (which really was only noticeable to my family and I in retrospect) until the Sunday before Thanksgiving when it was like she fell off a cliff. She pretty much became a vegetable (sorry for the crude-ness but really it's the only way I can describe it). We had no idea what was wrong with her and the doctors had no clue either. Went through every medical test imaginable - MRIs, PET scans, a ridiculous amount of blood tests, epilepsy studies (she is epileptic), 3 spinal taps with no conclusion. Finally, after ruling everything else out and noticing areas of atrophy on an MRI of her brain consistent with this disease we're left with a diagnosis of dementia with Lewy bodies. At first we couldn't get her to eat, she was barely conscious, and we didn't know if she was ever coming back to us. It was the worst experience of our lives. Somehow she has gotten back to a point where she is pretty functional. My dad took her home on Christmas Eve (needless to say we celebrated none of the holidays this year) and they're doing their best to cope and live as normally as possible.

My dad will be her primary caregiver but I worry about whether he'll be able to go through another fluctuation like that. Now he has to run his business, work full time as much as he can, run the household, and care for her and my 92 year old grandma. I'm 27 and I have two brothers who are 25 and 30. I would be the most helpful (usually the case with the only daughter!) but I live halfway across the country. I know my brothers are doing their best to help my parents in their own ways but my older brother has a family and my younger brother has some struggles of his own right now. It breaks my heart that they are left to deal with all of this on their own but I know that if I were to ask my mom she wouldn't want me to move back home, she would want me to follow my own path, not tag along behind her's and my dad's.

I apologize for rambling a bit but I don't know anyone else in the world who has any idea what we are going through except for, I imagine, those of you on this forum. Thank you all in advance for your stories, your advice, and your support.

Jamie


Sat Jan 30, 2010 4:27 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
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Hi Jamie - so sorry you are in the position of having to join this LBDA community, but it is good that you are reaching out. There are so many wonderful caregivers as well as a few people who have been diagnosed with LBD on this forum.
I joined a couple of weeks ago and have found an amazing community here - lots of great people and a ton of valuable information.
My dad had a very sudden decline last summer. He was getting frail and his memory was a little affected, then he suddenly couldn't do anything after his last fall at home. (He's also a lot older than your mom - he's 88) But, despite his age he had been living at home independently just prior to his hospitalization, rehab, then assisted living. I won't continue with his stuff here - it's in a lot of other places on this forum. Just want you to know this sudden loss of mobility and mind is a very common theme here.
I hope you can get your dad and brothers to join this forum for support, suggestions, advice, whatever they want or need.
Have you had, or can you have a family meeting to try to lay out what the most important issues are right now, and how they can be taken care of? Even if it is a conference call, I think I'd start there once I had more info. about the progression of this disease, if you haven't done that already.
You may want to try the chat line too. Some people go there for support, advice, venting, etc.
Take care of yourself too, Lynn


Sat Jan 30, 2010 4:44 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Jamie,
Sorry to hear about your mother's diagnosis and your family situation. Is there any way some or all of the kids could pitch in to hire caregivers for your mother? Does she by chance have long-term care insurance that would pay for this? Can she be placed in a care facility?
Robin


Sat Jan 30, 2010 5:15 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Welcome to the forum. It's a tragic disease and I'm sorry your mother is afflicted with it. My heart goes out to all of you. You will learn a lot here and you will find support and encouragement.

I totally agree with Robin's suggestion. Your father is going to need hired assistance, even if it means everyone in the family must pitch in to help pay for it. God bless all of you! --Pat


Sat Jan 30, 2010 6:30 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Jamie, Welcome to the LBDA forums and I am sorry for your need to join in but joining in what will help you right now, I agree a family meeting is probably in order to try and lay the ground work for some in home care, do your parents belong to a church, often they have people that can help out until things get sorted out!
Good Luck with all of this!

_________________
Irene Selak


Sun Jan 31, 2010 11:03 pm
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
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Thank you all for your welcoming words and advice. I'll talk to my dad and see if he wants to have a family meeting about everything, that's a good idea.

Honestly, he is in denial a little bit because she is really almost normal right now. There is a part of him that doesn't want to believe the diagnosis (and I completely understand it. It's almost an impossible reality to face for all of us), even the neurologist was saying that she hopes she is wrong on the diagnosis. For right now I think he's just trying to get back on his feet as far as working goes and learning how to run the household. My mom has been helping a lot - she has been cleaning and cooking on her own (my brother keeps an eye on her just in case). Not cooking every day but she has surprised my dad and made a few meals on her own. Most of the time she helps him cook. The only noticeable thing that's abnormal is that she doesn't always know what to say if you ask her a question and she'll laugh instead. I talked to her the other day and she sounded pretty happy. It only took her 3 days to get back to where she doesn't wet the bed anymore (which is nice considering that getting her to put on a diaper was absolute hell on earth).

My dad does have a person he can call when we get to the point where we need someone to be with her full time (once my brother eventually moves out on his own) but at this point there's no reason to put her in facility. She's too functional and would be so miserable anywhere else but home. Plus, I'm sure my dad doesn't want to let her go yet, she's just too young and she's been doing really well.

Thanks again everyone.


Mon Feb 01, 2010 5:02 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
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Jamie - as long as she, your dad and your brother are functioning well, I'd be hesitant to put her in a facility too. You'll know when it's time, I think. Things can go very downhill very fast with this disease, so if you are prepared with "what if" plans ahead of time, it will be less scary, disruptive and frustrating. Just knowing someone who can come in part or full time once you need them is a big advantage at this point. Getting to know facilities (and getting on a waiting list) is something I'd try to do now, too. Some places have very long wait lists, and if your mom's name comes up and she isn't ready to go at that point, I know some places will take the next person and leave your mom's name near the top. That is stuff I'd want to know ahead of time.
All the best in dealing with this. Lynn


Mon Feb 01, 2010 5:33 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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I encourage your family to hire a part-time helper now. This person can cook, do the laundry, whatever. This person can keep an eye on things and when more care is needed it'll be easier to ramp up this person's hours because everyone will be used to her.


Mon Feb 01, 2010 6:28 pm
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