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 First time to post... 
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Joined: Fri Aug 17, 2012 8:54 pm
Posts: 2
Post First time to post...
Hello. My name is Amy. This is the first time I have posted anything but i have been on here for a while. My mom was diagnosed with lewy body dementia in 2008, however we think she may have been suffering from this since 2005. Just a little information about my mom. For the last two years she has been mostly bed ridden; only getting up to use the bedside potty. she would try to talk but mostly nothing ever made a lot of since. For about a month she got to where it would take two of us for her to use the bathroom. For a week we could not get her to hardly eat or drink. She was beginning to be less responsive also. On Wednesday she was admitted into the hospital for dehydration. Friday morning the dr told us she had contracted pneumonia. After this diagnosis the dr said there was really no reason to treat the pneumonia. She was released this afternoon and coming home with hospice. I am sitting here at her house as i write this waiting on the ambulance to bring her home. Now i guess here is the question i have been trying to avoid since Wednesday........Is this the end? Are they sending her home to pass away here at home? The dr never said anything directly but would just say there was no reason to treat her for anything. Can her see something that we are not aware of? I know this disease is so hard to determine and have answers for but if anyone can help it would be greatly appreciated. Thank you so much.


Sat Dec 29, 2012 5:48 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: First time to post...
First of all, welcome to the forum! I'm so very sorry you have to be here but glad you found us.

Yes, it does sound as though they sent your mother home to die in familiar surroundings among family. It may be the 'end' and it may not. My husband has been at death's door several times from medical conditions [C.diff, renal failure and sepsis] but rebounded with treatment. However, he was not as advanced in the disease as is your mother. In my opinion, it is a blessing that her doctor has ordered Hospice, a great source of help and comfort for the patient and the caregiver.

God bless you! It's a sad situation and we have all suffered mightily under Lewy's reign--those with Lewy and those who love them.

_________________
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.


Sat Dec 29, 2012 7:49 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: First time to post...
So sorry you're going through this. It's so very hard to answer your question when so little is known about your mother and her medical treatment history. It does seem strange that the doctor would say there is no reason to treat her pneumonia without telling you much more than that. Has she been followed by specialists, such as they are, for LBD since diagnosis? Has she been on medication, e.g. Namenda, Exelon, etc.? Have other forms of dementia been ruled out, such as the one that is the result of fluid on the brain (I forget what it's called)? I'm not a doctor and I know I'm just reaching but you sounded like you wanted some suggestions to give you a little hope. Has she had bad reactions to antibiotics? I know my LO can't tolerate some of them. Pat is right, though. It's so hard to know as everyone is different. If her time is near, comfort and love are the best medicines for her right now. Please keep us informed and I'll be praying for you.

Blessings,
Terri

_________________
Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Sat Dec 29, 2012 11:32 pm
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Joined: Fri Aug 17, 2012 8:54 pm
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Post Re: First time to post...
First of all...thank you both for your answers. I know its not easy to give definite answers but i do appreciate any input. As my mom was diagnosed almost 5 years ago at the Mayo clinic in Florida, she has been followed by a neurologist and tried many medications. As of last night when hospice came in to admit her, she has been taken off all medications per her doctor except for morphine to make her comfortable. We are a very close family and we are all loving her and comforting her as much as we can. Again, thank you for your responses. Anything is appreciated.


Sun Dec 30, 2012 11:49 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: First time to post...
Dear Amy,

Welcome to the LBDA forums and I am glad you have been reading several years s I am sure some of this is familar to you but sadly when it is our own it is very tough dealing with it. As mentioned before we never know when it is their time to go. I am glad you have hospice to help along this final path. We are all for you if you need us !

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Irene Selak


Mon Dec 31, 2012 12:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3315
Location: Vermont
Post Re: First time to post...
Welcome Amy. I'm guessing that since you have been on the forum for many months now, you have done a lot of reading about our LOs experience in this disease. It is always sad to lose a LO but I hope you can take some comfort in knowing that she will be released from the raveges of this awful disease. The symptoms don't get better over time, they only become more and more debilitating. Being at home and surrounded by LOs will be comforting for her, and make sure that you and the others caring for her get the support you need as well. Take care, and stop by often. 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.


Mon Dec 31, 2012 3:35 pm
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Joined: Mon Dec 31, 2012 7:28 pm
Posts: 10
Post Re: First time to post...
My name is Pam. This is my first time to post. My husband is 59; recently diagnosed, but the doctor believes symptoms were around before the official diagnosis in November 2012. He does not work or drive. Actually, he was fired from 2 jobs; we now know that the problems are/were related to LBD. He was a machinist/toolmaker. We live in Michigan, and had a large snow fall. He is petrified of falling since his balance is not good. He hides a lot of things from me. I know this will be a great resource for us all because we must rely and help one another in order to cope. My best regards to all the members on the foum.


Tue Jan 01, 2013 2:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3315
Location: Vermont
Post Re: First time to post...
Welcome Pam. You may want to start your own post on introductions or in any topic area where you want to discuss something. Sorry for your need to be here but it's a great resource and place for support. 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.


Tue Jan 01, 2013 5:45 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: First time to post...
Dear Pam,

Welcome to the LBDA forums, a place no one wants to be but glad they find us when they do. I hope this can be a place of great help and comfort to you over time. As you post if you try to post your comment or question in the area that best fits you comment more eyes will see it !

Good Luck!

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Irene Selak


Wed Jan 02, 2013 10:10 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: First time to post...
Welcome Amy and Pam.

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Wed Jan 02, 2013 9:28 pm
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Joined: Sun Feb 09, 2014 2:18 pm
Posts: 8
Post Re: First time to post...
treewest1 wrote:
So sorry you're going through this. It's so very hard to answer your question when so little is known about your mother and her medical treatment history. It does seem strange that the doctor would say there is no reason to treat her pneumonia without telling you much more than that. Has she been followed by specialists, such as they are, for LBD since diagnosis? Has she been on medication, e.g. Namenda, Exelon, etc.? Have other forms of dementia been ruled out, such as the one that is the result of fluid on the brain (I forget what it's called)? I'm not a doctor and I know I'm just reaching but you sounded like you wanted some suggestions to give you a little hope. Has she had bad reactions to antibiotics? I know my LO can't tolerate some of them. Pat is right, though. It's so hard to know as everyone is different. If her time is near, comfort and love are the best medicines for her right now. Please keep us informed and I'll be praying for you.

Blessings,
Terri


I'm new here and did introduce myself yesterday. As far as the antibiotics go, my husband and I both have a living will in which we both stated we do not want to be put on antibiotics. I'm rethinking his response, although the living will was signed years before LB. If he gets any kind of infection, it could mean the end for him. I'm torn because his wishes are not to be put on antibiotics, but if he even develops a UTI he won't be put on antibiotics.

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My husband Ray was diagnosed in Oct 2011 with LBD and passed away on Feb 28, 2014. Rest in peace my love


Mon Feb 10, 2014 7:53 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3315
Location: Vermont
Post Re: First time to post...
Jammies - that is a tough one! My sister and I had a lot of angst about that with our dad who had LBD. Despite the fact that he had an AD that said no antibiotics, shortly before he died he developed an infection in the pressure sore he'd had for over a year. I relented and let them give him antibiotics because I felt that dying from an infection was probably going to be very painful and just horrible. So I saw it as a comfort med as well as a life-saving drug. I don't know if we made the right decision, but it felt like the right thing to do at the time, even though it probably prolonged his "life" as it was a bit longer. You'll just need to do the best you can do in making that decision and then don't feel guilty about it, whichever way you go. There is no one answer and no easy answer. All the 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.


Mon Feb 10, 2014 8:16 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: First time to post...
My husband's directives had to be made out yearly after he was unable, as required by home health and nursing facilities, so it was my responsibility to fill it out and the physician's to sign it. I opted for antibiotics depending on the situation. He had antibiotics many times for bladder infections and skin infections. I guess if he'd had advanced pneumonia with no hope of recovery, we would not have opted for antibiotics.

_________________
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.


Mon Feb 10, 2014 8:23 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3315
Location: Vermont
Post Re: First time to post...
I think I'd have done what you did for Derek, Pat. It makes sense to me. 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.


Mon Feb 10, 2014 8:35 pm
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Joined: Sun Feb 09, 2014 2:18 pm
Posts: 8
Post Re: First time to post...
LTCVT wrote:
I think I'd have done what you did for Derek, Pat. It makes sense to me. Lynn


I have the option to change and the more I think about it the more I believe I will change it tomorrow. I would feel terrible if he passed away due to a UTI or a skin infection. I honestly don't think he was considering those things when he checked them on the living will. I was just so confused today, not wanting to go against Ray's wishes.

The form I had to fill out at the hospital was a Pennsylvania Orders for Life-sustaining Treatment. It is basically a form that confirms what Ray had stated in his living will. I have come to find out that a living will taken to the hospital and placed in his file isn't enough. A doctor must first give the order, which to me makes no sense. If the patient signs a living will and it is in their file, you would think that would be enough.

_________________
My husband Ray was diagnosed in Oct 2011 with LBD and passed away on Feb 28, 2014. Rest in peace my love


Mon Feb 10, 2014 9:22 pm
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