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 Hi from a yearlong lurker 
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Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Hi from a yearlong lurker
Hello. I have been "lurking" on the boards for a little over a year. There were some technical problems in getting me registered, then I just let it ride for awhile, then the board was down for a month. Finally I tried again to "get on board" and here I am.
My name is Donna, and I help my dad care for my mom, who has been diagnosed with Alzheimer's, but her fluctuating cognition, restless legs kind of movement during sleep sometimes, and increasing tremors make me think she may have LBD. Neurologist didn't rule it completely out, but for now it's not part of her official m.o.

Today is Mom's 81st birthday, and it's been pretty good. My aunt (Mom's younger sister) and her 4-yr-old grandaughter came by with a cake for lunch. Mom's been napping for about an hour since they left. I work full-time (well, it WAS full-time; they cut us back to 32 hours a week 2 years ago, which actually has been a blessing since I started helping with mom).

Mom was showing some signs of dementia, and both her mother and grandmother had dementia, but she was catapulted into full-blown problems in January 2010, when her lung collapsed after an attempted needle biopsy of the lung. What a ride 2010 was as we adjusted to our new reality. The combination of aricept and our being better at living with mom has made 2011 better, though Mom has slipped physically. The spot on her lung has grown, though not as fast as one might expect lung cancer would. It has now been 2 years since they first saw the spot. We decided to let whatever happens with the spot happen. Mom does get short of breath more easily than she did a year ago, and she is more shaky when she walks, but she is less anxious generally, jovial more often.

I am 51 and single and moved back in with my folks last August. I am blessed to have a job that offers me whatever flexibility I need to help out with Mom, though this year I really haven't had to stay home extra at all. My Dad, 79, has been a trooper and is really the primary caregiver. My sister, 56, lives about 20 minutes from us, and is super supportive too. She is my only sibling. She has 4 grown kids, all of whom live here in the metropolitan area. We are looking forward to the arrival of the 5th great-grandchild in mid-October.

Well, that's my story. I have followed the journeys of so many of you, learned from you already, and am happy to be able to join the conversation and walk alongside you. Mom's been awake for a few minutes. Evidently we're in a school building this evening (she retired from the school district and frequently we are spending the night in a school building :)

Thanks for listening.

_________________
Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.


Fri Sep 23, 2011 6:31 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Hi from a yearlong lurker
Welcome, Donna! It is good to have you among us in a more visible way.

Even if lbd is never officially part of the diagnosis, if the symptoms seem to fit then being here among other people dealing with similar symptoms makes sense.

We've spent time in train stations and hotels (without leaving the house). When Coy was hospitalized, that was a high school. Interesting, isn't it?

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


Fri Sep 23, 2011 6:38 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3331
Location: Vermont
Post Re: Hi from a yearlong lurker
Hi Donna - I'm sure your dad appreciates all the help you are giving. It's great that you don't seem to have the sibling issues so many of us have had. It's a hard journey, but there are many people and much info. here to support you as you continue down this road. Hope you stay involved in the forum now. Lynn

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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.


Fri Sep 23, 2011 7:59 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Hi from a yearlong lurker
Welcome Donna, If you've been reading for a while you know there are many wonderful caregivers who share concerns and laughs, I learned so much and have used this site as a life line. Good luck to your mom and dad, they are lucky to have you and your sister.

Take Care,
Gerry

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


Last edited by Gerry on Sat Sep 24, 2011 7:35 am, edited 1 time in total.



Fri Sep 23, 2011 9:25 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Hi from a yearlong lurker
Welcome Donna, since you've been lurking for while, you know that this board has been
a God send for me and I hope it will be for you, too!
Ellen

_________________
Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Sat Sep 24, 2011 12:23 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Hi from a yearlong lurker
Welcome Donna, I'm just repeating whatever the others have said, but it is just so true. This community is a life line, and has saved my sanity time after time. Keep in touch with any concern - there is always the best advice and support here,
Ger x

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


Sat Sep 24, 2011 5:21 am
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Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: Hi from a yearlong lurker
Thanks for the warm welcome. My sister rallied the troops (her kids) to call Mom last night for her birthday. Hopefully Mom will be up for going up to my sister's on Sunday afternoon. She loves, loves, loves being around the great-grandkids. Thanks again for your welcome and kind sharing on this board.

_________________
Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.


Sat Sep 24, 2011 9:33 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hi from a yearlong lurker
Welcome Donna,
I am glad you decided to join us and not just be a lurker, sounds like your parents are very lucky to have a caring loving family, so many families don't have that ! Good luck on this journey! Bumps and all !

_________________
Irene Selak


Sat Sep 24, 2011 10:25 am
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