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 To treat or not--to know or not 
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post To treat or not--to know or not
Hello friends,
My Tom has had a downturn. After being treated for a suspected UTI, I again found drops of blood in his depends. His GP (whom I really like and trust) initially thought about an ultrasound to check the bladder and prostate. However, after thought and discussion about what treatment would entail if we did find cancer, etc. he said he would not recommend any treatment (which would probably be painful and might further decrease his quality of life) therefore he didn't see the need to confirm or deny a diagnosis. But, of course, it's my decision. My question is two-fold. Tom is only 63 and while I do believe in a somewhat slow medicine approach, I might be willing to undertake a procedure if he could recover and have a decent quality of life (he is still fairly mobile and strong) for an EXTENDED period of time. I know many of your LOs have had major surgeries and done well--did age make any difference in your decisions?
Secondly, would knowing Tom's complete diagnosis make any difference in how we would treat him for quality of life issues? Thanks, KMP

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Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Wed Oct 19, 2011 10:33 am
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: To treat or not--to know or not
This cursed disease makes it impossible to make intelligent predictions. Every patient seems to have his or her very own special variation. My hb is older than yours, but the neurologist tells me one of the generalizations he will make is that anything stressful will result in deterioration soon thereafter. My hb was still in the mild stage, about 20/30 on the minimental. I found him non responsive and with a high fever one morning. Instinct kicked in, I called paramedics, he spent all day in emergency and two more days in ICU with severe pneumonia. Three months later he has severe hallucinations, is 16/30 on the minimental, and was up four times last night complaining about the people walking through the bedroom (there were none). Tonight he told me his parents, both dead over 20 years, were coming home tomorrow. If I could have predicted this future, would I have let him continue sleeping awhile longer that day? He was only hours from a death that would have spared him much suffering. Probably not, but in future I would authorize only palliative surgery for my hb. But each case is unique, how can we know?


Sat Oct 22, 2011 1:10 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: To treat or not--to know or not
Challenged:

We can't ever KNOW! We can only assess the particular circumstances in light of our particular philosophies concerning life and death, quality of life, suffering and/or prevention of it, active versus passive approaches, etc.

I do think it helpful to work out your own philosophy in your own mind so that emergencies will be dealt with. Because of this forum, nothing that happened to my husband was shocking or unanticipated as possible. I have a strong philosophy of life in general to proact, not react. When he got the pneumonia, I did initially order he be given antibiotics, but quickly changed my mind as it was an appropriate time for his life to end. The more strongly you hold your philosophy, the easier it is to act accordingly.


Sat Oct 22, 2011 1:57 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: To treat or not--to know or not
These are difficult decisions. I guess we have opted to test and treat. My husband has had several surgeries and procedures since having Lewy. If the right anesthetics are used, they can recover just fine and enjoy a better quality of life. Just my humble opinion, of course. I do regret allowing a pacemaker to be implanted in 2008.

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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.


Sat Oct 22, 2011 2:09 pm
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: To treat or not--to know or not
It's the point at which my philosophy of life and death intersects the reality of a dear man who thinks we need to pack the doors of our house to take home--when we are already home; it's at that point that I struggle. He's strong, he's continent, he's just divorced from reality and unable to care for himself. Palliative care goes without saying, meds to quell his strong paranoia, give him the sleep he needs,and slow his decline. Beyond that is an unkindness in his case, each decline is frighteningly rapid and unbearably hard to watch. He would be so appalled if his cognizant self saw this.


Sun Oct 23, 2011 2:27 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: To treat or not--to know or not
Pat, what were the "right" anesthetics? I am so afraid of any kind of surgery for John!
And I agree that thinking a lot about your philosophy in advance of a crisis might help at the time in decision making. I just hope I will be strong enough to let go when it is time to let go.

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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]


Mon Oct 24, 2011 10:46 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: To treat or not--to know or not
Pat, he was fortunate that he was able to use Versed and a local anesthetic in the four procedures he had done. In discussing the problems with one of the anesthesiologists it was concluded that one of the difficulties with a general anesthetic in LBD is that, with intubation, an anticholinergic, like atropine, is given which can have very bad results. I realize that many surgeries require intubation and that would be a tougher call, I think.

_________________
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 Oct 25, 2011 12:06 am
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: To treat or not--to know or not
Hello Friends,
I decided to do the tests--ultrasound, extra bloodwork, etc. The good news, i guess, is everything was normal. The bad news, I guess, is it's all LEWY. I have to admit I was hoping it might be something that would have been readily treatable that would not have been overwhelming. Back to square one...literally.
One thing all this proved was what an arrogant, unprofessional jerk Tom's mental neuro was. Yes, WAS-- I dumped him. (HE didn't return my emails regarding treatment and didn't even return Tom's PCP's calls.) Thank goodness Tom has a good Parkinsons neuro who was able to work him in and immediately started him back on the meds the other neuro had discontinued. I know this will be a long slow process. I'm just hoping Tom might be able to return to some semblance of his old normal (the parkinsons neuro says probably not) so I might be able to continue to care for him at home.
One other thing this episode made me face was my own limitations. In reading many of the posts here I thought I was prepared to make some tough decisions, but getting hit with a true dose of reality certainly clearified my choices. My daughter, who lives nearby, will be going with me next week to talk to a social worker about options. But, no matter what--Tom and all the family will be HOME for the holidays.
In closing, I would say if what your dr. recommends doesn't make sense to you (even if he's well known), don't rush to do it. Get a second opinion ASAP even if it's difficult. It could keep your LO from declining to the point of no recovery. Also, don't let your LO's being physically strong and healthy fool you, (for me) the care is even more difficult. Sadly, time is not our friend......kathy

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Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Sun Nov 06, 2011 12:29 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: To treat or not--to know or not
Kathy,
Glad to hear that there was nothing wrong (other than LBD). I hope you don't blame yourself for your husband's decline!
Robin


Sun Nov 06, 2011 3:12 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: To treat or not--to know or not
I'm sorry it wasn't something readily treatable. Thank you for keeping us informed.

Dumping a doctor whose main contribution seems to have been stress sounds like a good move.

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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


Sun Nov 06, 2011 9:47 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: To treat or not--to know or not
Kathy, I am so proud of you for taking that important step of walking away from the wrong approach. And how are we to know many times which docs are good at treatment options--especially at the beginning when we are reeling from the diagnosis and know so little about LBD? You cannot blame yourself for this, and moving on is a good choice for you and for Tom.
I hope you email the arrogant, nonresponding neuro and tell him why Tom will not be back under his care. It may help someone else in the future. This guy needs to hear that his treatment choices have "done harm", which is the opposite of his oath. And as we both know, this is not the first time this doctor has made poor treatment choices for an LBD patient.
Here's hoping the other neuro can get you on the right track.
Take care,
Pat

_________________
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]


Tue Nov 08, 2011 12:15 am
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