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 Devastated by LBD 
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Joined: Fri Oct 15, 2010 9:25 pm
Posts: 9
Post Devastated by LBD
Hello,
I've been lurking here for over a year now and finally decided to write in. My father has been officially DX with LBD for about 1.5 years now. For several years before that he had memory issues...nothing major, just a bit forgetful or would have trouble thinking of a word while talking etc, and he had been having sleep disorder problems for decades and saw a sleep therapist/took meds for it. Last October he had a major hallucination episode that was quite scary. We began really looking into things at that point. His primary doctor insisted he was fine! While researching I came across LBD and just knew that was what my dad had. We took him to the Penn Memory Center where they confirmed what I already knew. Dad seemed to do ok for the first year...he would still have hallucinations or try to wander at night b/c he didn't think it was his house...and he was always very paranoid that someone was in the house. His hallucinations were not nice ones, he always envisioned something terrifying. Everytime he would have a drop, it seemed to come out of nowhere and one day he was at whatever level he was at, and the next day he had this major decline. Just two weeks ago he had a major decline. He went from being able to walk, eat, talk etc, to being incontinent, couldn't walk, wouldn't eat, barely drinks...he was admitted to the hospital and they put him on Haldol, which from what I've read could be causing a lot of the walking issues--he's stiff as a board! He only eats a tiny bit of jell-o and popsicles now. They have sent him home on hospice but strongly encouraged my mom to place him in a care facility...but she brought him home b/c the only place that would take him wtih the LBD diagnosis was 1 1/2 hours away. Now he lays in bed and keeps his eyes closed most of the time. It's extremely hard to understand him when he talks b/c he's so quiet and is usually talking about things we don't understand. He seems to be hallucinating again. I'm not sure if he knows who we are or not. I think he knows who we are even though he seems to have no idea about where he is or what is going on around him. He also does some silly things like pull the blanket over his head...no idea what he is doing when he does that, I think he thinks he goes somewhere.

I just can't believe this is my dad. Even though he really had symptoms for years, ever since the diagnosis the decline has seemed to happen so suddenly. There is no way to know how long he has left, I know, but does anybody have any input compared to what your LO has gone through? The hospice nurse told us she thought 2 months, and at the rate he has declined recently, I fear it could be less if it keeps up at this pace. For his sake I guess that isn't a bad thing, but for me I'm just devastated. Thanks for listening.


Sat Jun 30, 2012 10:43 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Devastated by LBD
Is he still on Haldol? If so, I would suggest trying to get him off of it ASAP. My husband had a very similar reaction to Risperdal in 2008 and I thought he was a goner. Discontinuing it, he was able to get back to baseline and he is still alive today and able to swallow and talk a bit. He was walking until last year. He does well on Seroquel. Maybe you could suggest to your father's doctor that he could try it instead of Haldol, which is often a dangerous choice for LBD.

_________________
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.


Sun Jul 01, 2012 12:53 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Devastated by LBD
It could be that your father is within a few months of dying but it could be that he's having a reaction to medication that could be reversed or it could be that he's had an irreversible reaction to medication. I think the only way to know is to stop medications that we know are bad for LBD (such as Haldol), and see if there's any improvement. Even then, it may be hard to know.


Sun Jul 01, 2012 2:07 am
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: Devastated by LBD
My dad had a severe reaction to haldol also. Became stiff as a board, couldn't walk - all the symptoms you mention. As soon as he was taken off it, he improved immediately. It took him a while to return to baseline, and improved slowly, but I would definitely suggest taking him off it immediately. Again, like the others, seroquel is the one that works best for Dad.
Good luck,
Ger x

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


Sun Jul 01, 2012 9:46 am
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Joined: Fri Oct 15, 2010 9:25 pm
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Post Re: Devastated by LBD
Thanks guys...yes, he's still on the Haldol. I am not his primary care person...my mom is. I told her about the Haldol, and prior to me telling her about it she had asked the doctor if he thought the meds caused this decline and the doctor said no, but I am not convinced the doctor knows much about LBD. They haven't changed his Haldol...but I'm not sure if she asked them about changing it given how upset it made her when I brought it up and since the doctor had already told her he didn't think the meds were causing this. I'm torn because if changing the meds back could bring him back to baseline, I want that for myself, but I don't think he would want it...I just don't know. If we brought him back to baseline (if that were possible), it would prolong the inevitable but could give us more time with him. He only eats jell-o and popsicles now and barely drinks. My mom keeps trying to get him to take sips of some vitamin infused drink. He has only put out a few drops of urine today (he has a catheter). I'm so nervous...I don't know how I'll cope if/when he passes.


Sun Jul 01, 2012 7:02 pm
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Joined: Fri Nov 05, 2010 11:30 pm
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Location: southern cali
Post Re: Devastated by LBD
so sorry for what you are going thru.. i cant imagine how scared you must be...

reading the above and reading the forum for years, most times i think the ladies on here, that live in the trenches, are more up to date than many docs., especially the ones unfamiliar with lbd... if you feel this doc is not understanding about lbd.. is there a way to get a second opinion from some one more familiar .??? i understand your concerns about dragging out the inevitable too, tho.. sounds like a few of the ladies above, have had many good years with their loved ones, once the halodol was removed... a doc more knowledgeable with lbd, might be able to help you both, with that decision.

wishing you strength..
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..


Sun Jul 01, 2012 8:46 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Devastated by LBD
Its good that you have come out of the lurking mode to get some support, I always feel bad for what I kind of consider the 3rd party and by that I mean the person not making decisions its hard to know something is bad for a person yet you can't convince the caregiver of it.

The one thing that alerted me in your post is when you used the word "sudden", it is almost always something like a medication or illness that caused the sudden part.

As everyone else here has mentioned probably stopping the haldol would be best and if your Dad is in bed and seems to be comfortable why does he need Haldol ? I would think that is a drug that is used in an emergency type situation.

I wish you and your family well !~

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Irene Selak


Sun Jul 01, 2012 9:41 pm
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Joined: Fri Oct 15, 2010 9:25 pm
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Post Re: Devastated by LBD
I think I might have my mom read these responses. I know she is trying so hard and is having such a rough time of things too, and I worry that I'll upset her, but then I struggle with the "what if". I asked her what the Haldol was for, and she wasn't sure why they were giving it to him. I think the Atavan is the better thing he's getting right now, because when he is extremely agitated it calms him down. It's hard because I know he was losing a lot of weight before the med change, so I guess you would say he was going down hill a bit before it, but the more drastic things definitely started after the med change. I live 8 hours away, so I wasn't here to see exactly how the changes took place, so it's hard to know. I know he was up all night before, and always tried to leave the house. It is so hard to be so far away and not be able to help either of them. I drive back all that I can, but I just wish I could move them out to where I am located. It's definitely bittersweet being the 3rd party that's for sure! I feel like all I can do is offer help and try to gather information, but it just isn't enough. :(

Couple of questions...when referring to baseline, what exactly does baseline mean? In this case would it mean back to how he was before the med change? Or is it how he was when this all began?


Sun Jul 01, 2012 10:01 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Devastated by LBD
Baseline = how he was before the medication change.


Sun Jul 01, 2012 11:42 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Devastated by LBD
Quote:
sounds like a few of the ladies above, have had many good years with their loved ones, once the halodol was removed
Well, not good years, really. But years. And I would not have done it any other way. It's a tough call, though. :cry:

_________________
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 Jul 02, 2012 1:04 am
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Devastated by LBD
My husband had a bad reaction to Ativan, sent him over the edge, he had no clue about reality, no one med fits all. Good Luck, the meds are like a crap shoot, win some, lose some, it's all trial and error. I think your mom needs your input, even if she doesn't follow it, it's food for thought.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Jul 02, 2012 5:02 am
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Joined: Fri Jun 19, 2009 11:23 am
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Post Re: Devastated by LBD
Dear Avasmommy
I too spend a lot of time lurking in the background these days. Thats because our life has gone from a really bad place, to a place that is liveable. My husband is one of those that Lewy didn't sneak into our lives but just jumped in feet first with really, really bad things. Hallucinations, cap grass and most of everything else that can happen. My husbands primary physician also said medications would just prolong the inevitable. I couldn't settle for that. I was told to go home, get our affairs in order and look for placement. I did go home and get affairs in order, but will not look for placement because I want him home. I realize I may have to change plans someday but for now our life is still worth living this way. It was rough at first. Medications were trial and error, but thanks to this forum I had support to get husband stabilized. We do still go to the same primary doctor but now he listens to me and believes me. Its been three years now and I would say my husband is still able to function fairly well, as long as I am with him. I struggle daily to remind myself of the positve things in my life, instead of what I am missing.
Mary


Mon Jul 02, 2012 11:09 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Devastated by LBD
[quote="avasmommy"]. It's definitely bittersweet being the 3rd party that's for sure! I feel like all I can do is offer help and try to gather information, but it just isn't enough. :(
quote]


Believe it or not you are helping, I know it is hard for you to see right now, I do hope you are able to show some of these replies to your Mom.

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Irene Selak


Mon Jul 02, 2012 11:44 am
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Post Re: Devastated by LBD
Dad had a good moment today where he actually smiled, but he also has had not so good moments. He had a fever this morning and mom had to give him some tylenol. he spit out the tablets, so I ran to the store and got Children's liquid and mom was able to get him to swallow it by squirting it in his mouth with a syringe. They told us b/c of his catheter that he would probably get an infection eventually. It might be a blessing if he gets one and it takes him as long as we can keep him comfortable through it. He always told us that if he got this (because his sister died of it and he saw what she went through) that he would want to go out in the woods on a fall day and sit under a tree and end it. I know he doesn't want to be like this. My poor mom was so upset this morning when he had the fever and thought she was his mom.

What is cap grass? I hadn't heard of that one...but we may have seen it without knowing what it's called. Thanks for the support! It's so nice to know there are people that understand.


Mon Jul 02, 2012 12:25 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Devastated by LBD
Fever is another symptom of neuroleptic malignant syndrome, along with the stiffness, etc. NMS is caused by drugs such as Haldol in persons with LBD or PD. You can do a search on it. My husband got it from Risperdal, as previously noted.

Capgras Syndrome [or Delusion] is a phenomenon in which the spouse [or other close caregiver/family member] is thought to be an impostor. My husband had this off and on for about three years. There were not only two of me, the real wife and the impostor, but also two houses. It's strange and can be extremely frustrating. It is listed here on the LBDA information site under 'delusions': http://www.lbda.org/content/treatment-behavioral-symptoms-when-consider-antipsychotic-medications-lbd.

_________________
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 Jul 02, 2012 12:34 pm
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