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 Pixie from Australia 
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Joined: Thu Apr 19, 2012 9:05 am
Posts: 3
Location: Blue Knob NSW
Post Pixie from Australia
hello all

I live in Australia in the hills of the Border Ranges. It is called the Rainbow Region - great communities working towards sustainable living. People call us hippies - hardworking, intelligent, people prospering in sustainability :mrgreen:

My Mummy was diagnosed with LBD a couple of years ago. The doctors knew so little; trying different drugs to see what happened. As you would expect she didn't react well. Eventually they managed to find medication that had some positive. By that time though she had moved into a nursing home [not my preference] but immediately had trouble working out what room was her room - right place, wrong floor. She is now in what I refer to as the 'final' ward.
She has now lost the use of her legs and thus the brain has also forgotten about having to process urine and so they have put in a catheter. She is also having difficulty swallowing so is being given thickened drinks and pureed food.

I hope she does not have to endure this state for much longer; I love her so much my best friend.

File comment: Val, my gorgeous Mummy
photo 2.JPG
photo 2.JPG [ 37.19 KiB | Viewed 2489 times ]
Thu Apr 19, 2012 9:32 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Pixie from Australia
Pixie - that is lovely that you posted the photo of your mom, your best friend. I know just what it's like to hope for the suffering for a parent afflicted with this disease to be over before they suffer even more. It is so difficult to see the declines. I hope she is kept comfortable. Do you have such a thing as hospice in Australia? If so, have they evaluated your mom? Welcome and so sorry for your need to be here. 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 Apr 19, 2012 9:37 pm

Joined: Thu Apr 19, 2012 9:05 am
Posts: 3
Location: Blue Knob NSW
Post Re: Pixie from Australia
thanks Lynn. She is well looked after in a high care wing of a good nursing home. There are resident doctors who liaise with the patient's personal doctor and specialist nurses plus all the equipment eg lifting frames. She is a three hours away which means a 6+ round trip plus visiting time which is restricted by the driving time. We are going up to see her on Monday and will stay overnight so we can see her again the next day.

It is possible this will be the last time I will see her physically. Unfortunately, neither my husband nor my health are very good and travelling is extremely exhausting. A visit takes weeks to recover from. It is worth it as the one thing with LBD is that the person has more recognition. I find this is also the cruellest part of the disease too.

Her kidney and liver funtions are low and two weeks ago went from fine to almost dead with an urinary tract infection. She is DNR but being Easter she was rushed to regular hospital and she was treated as any other patient and given antibiotics and put on drips for fluid and nourishment. It is hard to know where to draw the line with those things.

peace and happiness

Thu Apr 19, 2012 10:17 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Pixie from Australia
What a beautiful picture of your Mom. Welcome to the LBDA forums and I am so sorry for your need to seek out such a place, I do hope you can find comfort here within the many words from so many people who have been a part of this forum.I do wish for peace for your Mom's final days and I am glad she is getting good care !

Irene Selak

Thu Apr 19, 2012 10:31 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Pixie from Australia
You have a great ability to describe people and take photos! It's a gift. Your mom is lovely.

Thu Apr 19, 2012 10:35 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Thank you for sharing your lovely mother with us! God bless you both.

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.

Thu Apr 19, 2012 11:53 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Pixie from Australia
It looks like your mother is surrounded by special things. She is beautiful. I'm glad you found us, and though your story is sad, we'll be glad to share 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 Apr 20, 2012 12:41 am

Joined: Thu Apr 19, 2012 9:05 am
Posts: 3
Location: Blue Knob NSW
Post Re: Pixie from Australia
thanks :)

Fri Apr 20, 2012 12:51 am

Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: Pixie from Australia
Your mother looks beautiful. I am sorry you and she and all your family are having to experience this lousy disease. Safe travels to you Monday and I hope you have a wonderful visit, with moments to treasure.

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

Fri Apr 20, 2012 9:28 am

Joined: Tue Aug 30, 2011 1:42 pm
Posts: 110
Post Re: Pixie from Australia
Beautiful mom - touching description! Thanks and you will find a lot of support here. Great group of people with wonderful information.


Sat May 05, 2012 2:16 pm
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