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 New Member from Ireland 
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Joined: Sun Mar 04, 2012 1:46 pm
Posts: 3
Post New Member from Ireland
My Dad has LBD and is in what I think are the final stages.

He was first diagnosed with Parkinson's and then in early 2009 he was re-diagnosed with LBD. He has been confined to a wheelchair since Jan 2011 and until early Feb of this year he lived at home with my Mum. At that stage he was doubly incontinent but could still manage to eat and drink himself and his speech while sometimes slurred was understandable.

In early Feb he went into Respite supposedly for a week to give my Mum a break but when she came back to collect him she was told he had a Chest Infection and that they would keep him there a little longer. He was then transferred to hospital and diagnosed with Acute Aspiration Pneumonia. He is now on his 3rd course of anti-biotics which finally appear to be working. He has lost a lot of weight since Feb and was not a heavy man to begin with. He has an IV for fluids and anti-biotics and a NG tube for feeding. He spent weeks without being able to speak at all but now has regained some of his speech.

The Drs seem reluctant to give a prognosis or even an idea on what to expect from here and my Mum is not coping v well.

I don't know what to expect.

Thu Mar 29, 2012 10:33 am

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
Post Re: New Member from Ireland
O, I'm so sorry to hear of the challenges you are facing - but you have found the right place to get great information for caregivers, support, and kindness when little else will help. I'm fairly new here so still learning from these kind friends. Welcome, though, and hope that your path will be easier soon.

Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.

Thu Mar 29, 2012 11:17 am

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: New Member from Ireland
I, too, am from Ireland, and this wonderful community has kept me sane when dealing with this awful disease. They are a great source of comfort, advice and understanding. They have all at some point 'Been there, done that'. Feel free to email or pm me at any time,
Ger xxx

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

Thu Mar 29, 2012 11:39 am

Joined: Mon Feb 14, 2011 10:22 pm
Posts: 194
Location: Portland, Or
Post Re: New Member from Ireland
Hi and welcome to the Forums. This has been so helpful to me and I'm sure it will be to you, also, as we all have been there at one time or another. At Christmas I thought we were losing my mom, but since the end of January she has been doing great! She sleeps a lot, of course, but cognitively she's done a complete turn around. I have no idea how long this will last, I'm just enjoying it while we can! I hope you are as fortunate as we have been. Good luck and big hugs!

Ellen 60, caregiver for mom Marion 82, dx LBD Feb 2011 died April 11, 2015

Thu Mar 29, 2012 11:44 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New Member from Ireland
Welcome, and I am so sorry for what you are all going through. I'd suggest you do a lot of reading on this forum - as you will see there can be vast differences between our LOs with similar diagnoses.
I hope your dad has an advanced directive and has talked with the family members about his wishes if he were ever in this sort of situation. If he hasn't, and he has lucid times, this would be something I would want to talk with him about so you know whether he'd want aggressive treatment, given the disease he has and the state of health he is in, and what he is likely to face in the near future.
Knowledge is powerful and may help you and your LOs through these rough times. I hope you have lots of support as you help your parents through this. 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 Mar 29, 2012 12:18 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New Member from Ireland
Welcome to the forum! This is a place where we can learn, listen and share our tears and heartaches.

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 Mar 29, 2012 12:32 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New Member from Ireland
Sorry to know what you and your family have been through for the last couple of months. It sounds stressful for everyone.

Thu Mar 29, 2012 12:49 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New Member from Ireland
Welcome to the LBDA forums, I am sorry you had to find a place like this but glad that you did ,in the world of LBD there really are no expectations as each person is so different, no one really knows what around the next corner, I say take each day for what it brings and go from there.

Good Luck and I wish you well in this very difficult time in your lives!

Irene Selak

Thu Apr 05, 2012 10:47 am
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