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 Devastated by LBD 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Devastated by LBD
avasmommy,
Does your mother agree that your father would not want to live with dementia, assuming he does have a dementia that is not reversible? Does she agree that if he is having some reaction to Haldol that could be reversed that she'd rather not try to see if that's what's going on?
Robin


Mon Jul 02, 2012 12:43 pm
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Joined: Fri Oct 15, 2010 9:25 pm
Posts: 9
Post Re: Devastated by LBD
I think Dad has NMS. He has so many of the symptoms...the confusion (though he was of course confused when the decline began, it is markedly worse and all day everyday rather than mostly at night now), sweating, fever...though the fever isn't too high, 99.6-100.4 range, ridgedity, worsenting tremors, coughing without being able to get up what he is coughing on...

I had mom read the posts yesterday, so she saw the info on the haldol. We talked about it, and she did get upset that perhaps she isn't doing the right thing...she asked if we should take him off it, but that led to a discussion of what dad would want, and we all agree that he wouldn't want this. He keeps telling us now even in his confusion to "let him go". I don't know what he means by that...sometimes I think he just means to get away from him, but other times I think he means to let him die. If we try to remedy this and stop the meds, it prolongs his suffering, and he has specific medical proxy that directs no antibiotics, no IV, no resusitation, no anything that could prolong life. After reading more about NMS online, it states that stopping the meds is necessary of course, but that they need to be admitted to the ICU and have things done...all of which would go against his proxy. What do we do???


Tue Jul 03, 2012 7:41 am
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Joined: Fri Oct 15, 2010 9:25 pm
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Post Re: Devastated by LBD
robin wrote:
avasmommy,
Does your mother agree that your father would not want to live with dementia, assuming he does have a dementia that is not reversible? Does she agree that if he is having some reaction to Haldol that could be reversed that she'd rather not try to see if that's what's going on?
Robin


Hi Robin,
Yeah, Dad has told her the same things that he has said to the rest of us about not wanting to go through what his sister did. she also was with him when he wrote his proxy. After our talk yesterday, I think she feels it is better to leave him on the Haldol and if it brings about the end that is better for dad...but I know she like the rest of us are having a hard time with it. I have moments where I'm ok with that b/c I believe it's what he would say to do, and then I have moments where I feel it is not right at all...like we are determining someone's fate. I know it's not my decision either way, but mom looks to us for support, and by supporting that decision I am in a way making it. This is the hardest thing I have ever dealt with!!! What a cruel disease, not only does it break your heart, it also takes you to a place nobody should ever have to go.


Tue Jul 03, 2012 7:47 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3362
Location: Vermont
Post Re: Devastated by LBD
If your dad has clearly stated, prior to becoming very ill, as well as now, that he does not want his poor quality of life prolonged, I think you will all make the right decision according to his wishes. Big cyber hug - it is a hard place to be, BTDT. 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 Jul 03, 2012 9:49 am
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Joined: Fri Oct 15, 2010 9:25 pm
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Post Re: Devastated by LBD
The doctors have been asked and they say it isn't from the meds. They say this is what he needs to be on b/c it keeps him calm and not jumping out of the bed that could hurt him. Nobody is trying to assist him in killing himself, and certainly nobody is trying to kill him. We are trying to balance what the doctors say and what dad would want. Thank you for taking a place that was supposed to be supportive and understanding and completely negating that. My dads medical proxy clearly states he doesn't want any life-saving interventions to be done, so if he has NMS, he wouldn't want it treated. We are just trying to figure out how to care for him. That includes trying to reach out to the LBD specialists that live nowhere near here and are on vacation until next week. we are doing the best we can and I personally think you are such an ass for your comment. We are not going to murder my dad, and we are also not up for torturing him either, thank you very much. I guess I should have remained a lurker...my mistake for thinking this was a place where people understood this disease and the awful decisions that go along with it.


Tue Jul 03, 2012 9:57 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Devastated by LBD
I am glad you are not a lurker, and I hope you don't stop coming here. You have the support and understanding of many others on here, so I hope you don't take the comment from one and apply that thinking to the rest of us. You really are in a tough spot and I have had to be in the same place before as you are now. I hope you can ignore comments that are not helpful, hard as that can be. 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 Jul 03, 2012 10:06 am
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: Devastated by LBD
My heart goes out to you and your family. I think you all know your Dad best and you know in your gut what is right for him and for you. Whatever your decision, difficult as it may be to make, remember you are making it to help your father, not to hurt him. You would not be here if you did not care. It is a decision nobody should have to make. I was in a similar situation last year, and it is heartbreaking. No matter what decision you make you will have regrets, but always, ALWAYS remember you are doing it out of love . God Bless and stay strong
Ger xx

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


Tue Jul 03, 2012 10:24 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Devastated by LBD
It was a cruel remark. You are in a difficult position and doing the best you can. God bless you and your family! And please stay on the forum. You have many more supporters than detractors here.

_________________
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.


Tue Jul 03, 2012 10:28 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Devastated by LBD
Please don't judge everyone here on the forum by just one
and I want to say I am sorry for such a cruel remark.
Please hang in there and let people here try and support you as you are going through this very difficult time !

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Irene Selak


Tue Jul 03, 2012 11:00 am
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Joined: Fri Oct 15, 2010 9:25 pm
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Post Re: Devastated by LBD
Thank you all...I will stay. I definitely felt like running away, but you all have shown me that this is the kind of supportive place I thought it was. Thank you!!!


Tue Jul 03, 2012 11:07 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Devastated by LBD
I am glad that you want to continue to join us as we really can be a group of helpful people for the most part, sadly some o usf forget what it was like when we first started out and not knowing or understanding ceratin things with the illness, if you want to learn more, many of will try to help direct you !

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Irene Selak


Tue Jul 03, 2012 11:26 am
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Post Re: Devastated by LBD
I think I forgot to hit post after writing one out, so I'll try again. I just wanted to say that I should have mentioned something else that lends some light on the situation. When dad stopped taking his meds after they switched them and started having all the incontinence issues etc, they took him off everything for about a week to see if he would turn around and get better, but he didn't. He only got worse. Ripped out his foley catheter several times and kept trying to jump out of bed etc. his agitation was through the roof, so that is why they started him on the haldol at the low dose. tHat is why the docs say they don't think it's hurting him or causing this and only think it's helping b/c he is so calm on it now and is even sleeping through the night. They also said it's really possible the fever is a UTI since he's got the catheter and had to have it reinserted so many times due to pulling it out.

Anyway, at this point the positives to him being on the haldol seem greater than the possibility that it's harming him, especially since the docs don't think it is. he seems peaceful for the first time in over a year. We're waiting to hear from the dementia specialists that are on vacation until Monday. I'm just trying to work this out in my head, and am looking at all possibilities. I've shared everything with mom too. Thank you all for the info and support. We'll keep loving on him and trying to figure out the best thing for him, because that is all we care about is his well-being.


Tue Jul 03, 2012 11:37 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Devastated by LBD
As I said in my PM, we all stumble through this nightmare doing our best and the outcome is never good. Please know that you have our support and that we care.

_________________
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.


Tue Jul 03, 2012 11:50 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Devastated by LBD
I see that the one who made the offending comment has removed her post without explanation, rendering the subsequent posts redundant and confusing. :roll:

_________________
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.


Tue Jul 03, 2012 11:18 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Devastated by LBD
I didn't see the comment but can figure out that it was cruel and inappropiate. Any disease that causes dementia is difficult to treat, it's trial and error. We won't know WHAT it was until after they pass,and only if they have arranged for brain donation, then it's after the fact. Frank was on a med that was on the "do not use" list but it seemed to work for him, I think. When we watch a loved one decline, there are so many emotions mixed with the responsibility and decisions that must be made, we do the very best we can. Don't second guess a dicision, it was made with LOVE.
I would have been lost if not for this sight, if you're not in the thick of it, you would never understand the challenges we face(d). All the best to you and your mom, please continue to read and post, it's a life line that will help you maneuver through the path.

Fondly, Gerry

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


Wed Jul 04, 2012 8:38 am
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