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 Learning about Lewy 
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Learning about Lewy
Those of you who are caregiving for early or mid-stage loved ones with Lewy Body Dementia, I need to ask this question. Have you been discussing the progressive nature of the disease with your loved ones? Have you had discussions about where it can lead? I had tried early on to discuss some of the ramifications, engage John in plans for our future, encourage him to make known any wishes he may have in regard to his sons (all our sons are grown) and so forth. These discussions have occurred in the context of events of the moment, where they seemed to fit with what we were discussing or doing at the time, never forced or brought up out of the blue. He's resisted any of this type conversation which is understandable. Last night while watching a taped episode of Boss (he actually wanted to watch this series and has enjoyed it up until now) the character who plays his daughter in the show was emotionally upset and said, "he's going to die soon anyway, he has Lewy Body Dementia." John sucked in some air and said, "Is that what's going to happen to me?" I muted the TV and we began a discussion about Lewy, what I shared based on all I've learned so far though not too specific or graphic. It was very hard to try and be truthful, yet sensitive. I tried to interject that everyone is different, the disease is unpredictable, and we have to take one day at a time. Learn what we could face and be prepared by knowing what resources are available, but try to live each day fully. I told him I am learning as much as I can to ensure he has a good quality of life for as long as the Good Lord gives us. I reminded him that no one knows how many breathes we'll take in our life. I told him that his disease may never progress further than it is right now. He's 77 years old, who knows what will happen in the next 10-15 years. Bottom line, this was a very difficult conversation. I think previously, he was in denial and probably still is. We talked about getting angry, sad, all the steps of grieving that should occur before acceptance. We were getting ready for bed and I said if he wants to talk more about it in the morning, we can look at some information together and get some sense about what we may be facing down the road. He's still very concerned that LBD is contagious. I want to know how others have handled this. Is your spouse (or other loved one) interested in this information, curious about the disease, able to process the sad facts? John's "executive" function was near the first thing to be affected but he can and does continue to carry on discussions about daily life events. He may understand some of what I tell him, though misinterpret some of it later when he's thinking about it. I don't want to keep things from him if he asks, nor do I want to give him all the more to obsess or "stew" over. So much of his worry he keeps to himself. I know there is no "right" answer but I would really like to know if others have had these conversations and how their loved ones responded.

God Bless us all,
Terri

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


Wed Oct 17, 2012 1:50 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Learning about Lewy
Terri,

This is a tough one. My mother was diagnosed with LBD when she had not been in the mid-stage for too long. The attending neurologist spoke with me, not her. So I got to explain to her.

Have you ever heard that in explaining the birds and the bees to children, it's best to start out with some basics and then let the child ask questions if s/he wants to know more, instead of overwhelming the child with information? That's kind of how I approached LBD with my mother. I told her that she had a progressive neurological disease. She asked if it was going to get worse and I said yes. She asked if she would know that it was getting worse and I said only up to a point, and then probably not. She was satisfied with that much information and never asked anything more. Occasionally, she will become upset by her progression because her memory is failing or what have you, and I remind her that she has a progressive neurological disease that affects her memory (or whatever) but again, she never asks anything more about it.

It is sad and difficult to think about these things, let alone discuss them. Good luck!

Julianne


Wed Oct 17, 2012 2:45 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Learning about Lewy
Denial seems to serve two purposes: One, it shields the denying family members [or friends] from the pain of sad information; Two, it helps to absolve them from responsibility and assistance. Although our family members were in early denial, most accepted the diagnosis/prognosis after a while. What was very disappointing was that some of my husband's 'friends' more or less ignored him once they found out. Oh, they would sometimes send a quick e-mail but always had an excuse not to visit. At this point, it probably wouldn't help but he would have been cheered by their company a year or two ago. :cry:

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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.


Wed Oct 17, 2012 3:53 pm
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: Learning about Lewy
Terri, Julianne, & Pat....It appears that I am going through some/all of what you just posted. Questioning how much to tell, how much information does Norris understand or really want. Since Norris dx of Parkinsons 14 yrs ago, we have always referred to the downturns and symptoms as part of PD and its progression. Then when the "people who sit around our house" appeared a couple of years ago he began referring to them as his Parkinsons people. He had been aware of the possibility of hallucinations with PD. His loss of executive functions and cognitive changes came quickly after that, and when the Dr. gave an official diagnosis of PDD/Lewy Body Variant last year (which was the first time I had ever heard about it), Norris was probably beyond early/mild changes so doesn't really understand the "lewy" term. He does get mad when he can't find words, finish sentences, remember jokes and will say "damm Parkinsons".

So, I find it better to refer to it that way....we do talk about the changes Parkinsons is making, because his balance, movement, getting out of chairs is getting much worse even with the PD medications. He seems comfortable with that term but doesn't ask about details or the future.

Pat, like you said, friends do drop away.....he doesn't seem to miss them now, but it would have been nice if they had visited before.

There is no denial any more. I think I was in denial as to the reality that he was developing dementia. I attributed the changes for a long time to PD, and I gradually began doing more and more for him, helping him with the activities of daily living, when the diagnosis came it was a big slap of reality for me. For Norris, as I said, he listens to the doctor talk about the dementia but anymore he either doesn't really understand or tunes it out and doesn't ask questions anymore. It is sad, but most of the time he seems content. :cry: Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Wed Oct 17, 2012 10:59 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Learning about Lewy
terri.. this is a tough one isn't it??? so many choices we have to make and hope and pray we are doing the best, for our loved ones.. and if not we back track and try something else and then realize there is no right or wrong.. and what works one day, doesn't the next....

in the beginning, i read some where, not to bring it up.... so i didnt .i was very uncomfortable talking to the docs, when they asked questions.afraid i would hurt him.. or his reaction to the info??!!. but realized by time we got outside, he had already forgotten the conversations.... when he gets down, about not being able to drive, or work, or, or, or??? we have small discussions.. but he doesnt seem to want to know, any more than that.t when we did the trust.. we had to get more involved, i did play it down a bit tho,... he seemed to handle it and forget it...

there are times he realizes hes struggling with memory issues, he will make a sad.. im losing my mind, kinda statement... and then its over...

i like the idea julianne ,mentioned above, about the birds and bees talk.. and i guess in a way, that is what im doing.. im letting him lead me.. hes never asked about the future, or if this is going to get worse??

is it unfair not telling him???. i hope not... i wonder what would be different if he knew??? most heavy conversations are lost to him , by the third sentence... so i guess ill keep going down this path. till i see a sign that tells me to make another turn...with fingers crossed...

good luck terri... i hope any or some, of this helps or works for you...

it sounds like you are doing a great job....

please take care...
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Last edited by cdw on Thu Oct 18, 2012 2:07 am, edited 2 times in total.



Wed Oct 17, 2012 11:02 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Learning about Lewy
I apologize for misreading your post, Terri. You were referring only to denial on the part of the Lewy LO, not other family members. When my husband was still able to comprehend these things, physicians [and I] told him about the nature of the disease and he seemed not to accept it. So I decided that I would shield him from it whenever possible. Obviously, the line had to be drawn regarding driving and other activities but we even switched neurologists because one was overly blunt. While I may have preferred the blunt, forthright approach, my husband did not. It would seem to be an individual thing.

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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 Oct 18, 2012 12:37 am
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Learning about Lewy
Thank you all for your kind words and advice. There is something for me in each reply. I do like your approach Julianne. He never brought it up yesterday. Of course, I did get him to go to the bowling alley with me so the day was busy. If he asks about it, I will tell him the truth in as much detail as I need to satisfy his question. Then let him lead me from there. Pat, I understand about the friends too. As I've said, and read, before...one day at a time. Advice I gave him too, tackle each issue as it happens in the best way we know how.

God love ya'll,
Terri

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


Thu Oct 18, 2012 9:29 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Learning about Lewy
Terri,
In our situation my husband was first DX'ed with Parkinsons and several yrs later the LBD and he was told but I actually think at that point he couldn't wrap his brain around it as he always referred to PD. So I am thinking each situation could be different !

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Irene Selak


Thu Oct 18, 2012 11:08 am
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Joined: Fri Apr 06, 2012 10:19 pm
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Post Re: Learning about Lewy
irene selak wrote:
Terri,
In our situation my husband was first DX'ed with Parkinsons and several yrs later the LBD and he was told but I actually think at that point he couldn't wrap his brain around it as he always referred to PD. So I am thinking each situation could be different !

That is exactly what happened with my Dad. My Dad has had LBD for at least 7 or 8 years since he was first diagnosed with Parkinsons but he was only officially diagnosed with LBD 6 months ago and it's now much too late to explain it to him. I just tell him that his parkinsons confuses his brain.


Fri Oct 19, 2012 10:45 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Learning about Lewy
I think this sort of discussion really is dependent on many factors and varies so much from person to person. My dad went from pretty independent living to totally dependent and very ill overnight. The only thing that I really told him was that something was going on in his brain and that his doctors were working hard to figure out how to help him, that I was keeping in close contact with them. That seemed to satisfy him. He was already so depressed and angry I didn't think details about such a degenerative disease would help him, so I tried to give him info. but spare him details that would make him feel worse. I hope this helps. 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.


Fri Oct 26, 2012 10:19 pm
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Joined: Sun Dec 02, 2012 8:57 pm
Posts: 20
Post Re: Learning about Lewy
Pat, I read your book over the weekend. It was filled with information that I needed to hear. I caught a little hint of possibly your son being in denial. I might have been wrong. But my daughter totally is in denial. I just posted to Practical Caregiving Tips about the episode that we had tonight. Thanks for your description to your son about being trapped in a basketball game. that is exactly how I feel. I read it to my daughter a couple of nights ago. All I want her to do is just be there and just listen. Not to tell me that she can't tell anything is wrong with him and that the doc doesn't know what she's doing. Again, thanks for a wonderful book. Patsy


Sun Dec 30, 2012 11:16 pm
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