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 Is it close to the end - what to expect ? 
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Joined: Sun Mar 04, 2012 1:46 pm
Posts: 3
Post Is it close to the end - what to expect ?
My Dad has LBD - confirmed diagnosis 3 years ago following a mis-diagnosis with Parkinson's.

He is wheel-chair bound, doubly incontinent and is in hospital with Acute Aspiration Pneumonia. He is on IV for fluids and anti-biotics and a NG tube for feeding. He is on Beta-Blockers for his heart and the Drs have said that his heart may give out at any time. He is also at high risk for a Blood Clot and is on meds for that.

He is talking but is hard to understand though he does seem to understand what is being said to him. He recognises the immediate family but does not know the extent of his illness or that he is in hospital. He has lost a lot of weight and is v thin. The nurses are turning him in the bed every few hours to prevent bed-sores. He is not able to sit up anymore.

I don't know what to expect from here. The Drs and Nurses are not giving any prognosis. There is no Power of Attorney. My Mum is making the necessary decisions for now but the stress of it all is getting to her.

I don't know if he will recover from this and go back to the way he was in early Feb or is this the beginning of the end ?


Thu Mar 29, 2012 10:49 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Is it close to the end - what to expect ?
This disease is so unpredictable, there really is no way to know what will happen next. My mom had 2 very serious downturns last year ( one in Sep and one in Dec) and both times I started preparing for the inevitable and really thought her death was imminent, and both times she rallied back. Since January she has been doing so well that I started to think I was crazy and had "imagined" her illness :lol: . She then had a couple of small instances that let me know she still has Lewy's, but all in all she has been remarkably better. She's been going through and cleaning out her dresser drawers and organizing things and has just amazed all of us with her turnaround!
I'm not suggesting that this will happen in your case, just letting you know how very much of a roller coaster this can be. Again, good luck, I hope everything goes well for you and your LO.
Ellen

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


Thu Mar 29, 2012 11:55 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Is it close to the end - what to expect ?
Like Ellen, several times we thought Dad was at death's door, only to rally around again. We now call him 'Lazarus', as he has come back from the brink so many times. You just never know with this disease. My thoughts and prayers are with you and your Mum,
Ger xx

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


Thu Mar 29, 2012 12:03 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Is it close to the end - what to expect ?
If you have hospice services there like we do in the US, I'd think this would be a good time to get them involved so they can give you their assessment and if he is hospice eligible, they will help with his care, give info. to you and other family members, and be of tremendous moral support (at least that was our experience in my dad's final months).
I'd suggest getting a good elder care attorney and going with your mom to see what can and needs to be done at this point since he hasn't appointed a POA. 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.


Thu Mar 29, 2012 12:22 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Is it close to the end - what to expect ?
My husband has also bounced back from near-fatal infections and conditions which we chose to aggressively treat. Whether, in the larger scheme of things, it was wise, who can know? But we do what we believe to be the right thing and pray for the best outcome. Tell your mother to do what she thinks is best.

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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 12:28 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Is it close to the end - what to expect ?
Did your father state his end-of-life treatment wishes early on? Would he want to live in this state, or would he want your mom to let him go?


Thu Mar 29, 2012 12:52 pm
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post Re: Is it close to the end - what to expect ?
This sounds awful Greekmum. My father sounds like he is close to the same situation. He has aspirated a few times though only had a mild infection once. Many years ago he wrote a living will that specifically said he did not want feeding tubes or anything to artificially prolong his life. This has relieved my sister and I from making such a difficult decision. The rebounding that other people here have experienced with their loved ones isn't something we are expecting with our father. It has been a slow deterioration for the last year, with only short windows of lucidity here and there. My guess is that recovery at this point is unlikely, and focusing on making him as comfortable as possible should be the priority, as well as assessing what his wishes would be at this stage as far as artificially prolonging his life. I wish you and your mother courage through this difficult time.

Emanuel


Sun Apr 01, 2012 8:33 am
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Joined: Sun Mar 04, 2012 1:46 pm
Posts: 3
Post Re: Is it close to the end - what to expect ?
Just wanted to apologise for not replying sooner and also to tell you all that my wonderful Dad passed away 10 days ago now peacefully in his sleep with none of us there which is exactly the way he would have wanted.


Thu May 03, 2012 1:06 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Is it close to the end - what to expect ?
Again, my deepest sympathies to you and your family,
Ger xx

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


Thu May 03, 2012 2:10 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Is it close to the end - what to expect ?
I'm sorry/glad to hear of your father's passing. Glad that he is free now from Lewy's clutches and for you that you don't have to watch his deterioration any longer. But I know it's also a sad time for you and your family. My thoughts and prayers are with you all. God bless you!

_________________
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 May 03, 2012 2:42 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Is it close to the end - what to expect ?
My condolences on your loss. I'm glad your father's passing was the way he would've wanted it.


Thu May 03, 2012 2:53 pm
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Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: Is it close to the end - what to expect ?
I'm very sorry for your loss and will be thinking of you, your family, and all of your dad's friends. Take care.

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


Thu May 03, 2012 3:31 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Is it close to the end - what to expect ?
My condolences as well. I hope you find comfort in fond memories and knowing he is no longer suffering from this terrible condition. 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.


Thu May 03, 2012 4:29 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Is it close to the end - what to expect ?
Sincere condolences.

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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 May 04, 2012 1:25 am
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post Re: Is it close to the end - what to expect ?
I'm so sorry for your loss though I am glad for your father that he went the way he would have wanted. My thoughts are with you and your family.

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Sun May 06, 2012 6:39 pm
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