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Joined: Sat Jan 12, 2013 11:54 pm
Posts: 1
Post Hello
My 76 year old mother has recently been diagnosed with Lewy body dementia, because I am familiar with this disease having worked in a care facility for 35 years I suppose I am the best person to help her live with her illness.She has been living with us since October 2012 and for the most part things have been OK. I know how to deal with the delusions but it is not easy when it is your loved one.I find myself using reassuring phrases that I say to our residents at work with my mother and it is so odd.Sometimes I feel trapped and I know it is how life is at this moment...I can feel her frustration and it breaks my heart. There are times when she feels she is not ill at all perhaps due to the fact that we do not try to convince her that her delusions are not real,as this is her reality. I am frustrated and saddened that I do not have the support of my siblings,we are truly a dysfunctional bunch who are not at all supportive of each other...and I know just how normal and cognizant my mother appears during phone calls(show-time)It is good to know that I am not alone.

Hello from a small town in northern British Columbia,Canada :)

Tue Feb 05, 2013 2:29 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hello
Hello, Babs! Welcome to the forum. You are certainly correct that taking care of a loved one is a different experience from taking care of patients. God bless you for your care and devotion. Please get the help you need and take good care of yourself, too!

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.

Tue Feb 05, 2013 12:33 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hello
Hi Babs,
Let me welcome you to the LBDA forums, sorry for the need. Your experience will help you in the long run but you are right , it is so different when it is one of our own. When you speak of dysfunctional families aren't they all like that ? LOL Just kidding. Many families have issues and it is always hard when it comes to the parents care.

Please visit us as much as you need , there is plenty of support here !

Irene Selak

Wed Feb 06, 2013 2:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Hello
Welcome, and you sure aren't alone when it comes to family issues re: your LO and their health and care. It's so easy for those not doing the CGing to tell the CGs how to do their job, isn't it? I see this with my friends a lot and it just adds to an already difficult situation. Take care of yourself and you may want to suggest that your other family members read all they can about this disease. Those who don't know anything about it are the most likely ones to try to tell you what should be done and how to do it. Ignorance is NOT bliss in this case! Best, 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 Feb 07, 2013 10:21 am
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