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 Looking for Help 
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Joined: Fri Jul 29, 2011 1:27 am
Posts: 1
Post Looking for Help
Hi, I'm at a loss on what to do next for our Mom. Mom has recently been diagnosed with LBD, refuses to accept it and refuses to take any medication that will alleviate her depression. She is so angry with us when the doctor recommended that she be placed in a assessment unit. She was deemed competent and therefore, after 10 days in hospital she checked herself out against her doctor's wishes. We are so frustrated and don't know how or if we can help her. We only want what's best for her and what will keep her safe.
Perhaps someone here can advise on the best way to deal with someone who refuses to listen to reason.
Thanks so much for listening.

Tue Aug 02, 2011 1:14 am

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Looking for Help
First, welcome to the forums. I don't know if we can help with this one for you, but I hope you'll stick around and share your experiences.

Whether she is legally competent or not, it may not be so much that she refuses to listen to reason as that she can't. She has dementia. That interferes with the ability to make judgments based on reason. Not that every LBDer can't reason, especially in the early stage, but it is a distinct possibility that the disease is exerting itself here.

What was the doctor trying to assess in the hospital? I've known people who have had inpatient assessments when they've been on several drugs and it is necessary to reevaluate them and make adjustments. Was it something like that for you mother? Was the doctor able to accomplish any of the objectives of the inpatient stay in ten days?

In what areas do you fear for your mother's safety? My husband would not be safe living on his own, so I am not questioning your worry, just wondering what the specifics are. Does she live alone now? Maybe some of us will have advice about safety when we know a little more about the situation.

Here you are a newbie and I'm prying into personal details of your situation. Please just share what you are comfortable with. All of us know the intense frustration when you are only trying to help, only trying to do the right thing, and your efforts don't meet with success.

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Tue Aug 02, 2011 1:52 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Looking for Help
Welcome and sadly I might add that your Mom may never except her illness and limitations and she won't be able to keep up what she is doing so at some point others will see her illness as a problem, sadly in the meantime there isn't much you can do except be support her and be there when time comes for her to need you !

Irene Selak

Tue Aug 02, 2011 7:56 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Looking for Help
I hope that you or someone has medical power of attorney for her, as it will surely be necessary in the future. God bless you! There is nothing easy about Lewy.

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 Aug 02, 2011 8:41 am

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Looking for Help
On the medication side of things, we used to hide Dad's meds in his food. We had him on liquid ebixa, which we put in his tea, and crushed his seroquel and hid it in biscuits, etc. Maybe if you can get her settled on some meds, she may become a little more settled. I know in my case that when we got Dad on regular doses of his meds, he was much easier to deal with. Your mother may be completely different, of course - there is never an easy solution. Good luck and welcome,

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

Tue Aug 02, 2011 6:05 pm

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Looking for Help
The medical power of attorney - and power of attorney in general is very important. If you haven't done it already, get it done now, particularly as your Mom has been deemed competent at this time. This will make the road ahead a bit clearer. Our elderlaw attorney referred to this as "end of life" documents. Interestingly enough, doing this helped Mom recognize the situation.

I also did a lot of reading on the subject and occasionally shared a tidbit or two with Mom while she was still able to discuss it. There are still times when Mom can have a rational discussion about it, albeit using head nods and shakes as she can't get a sentence out anymore. One of the nasty things about LBD is that the person who has it is often very aware of their decline and it is extremely upsetting - especially if he/she was a very competent person to begin with.

I believe that little fabrications are acceptable in some cases. Would she believe you if you told her the medication could be a means of keeping things from getting any worse? Or that it could be a cure? Or just that it is new and/or experimental and it might help, as opposed to it will help? These are just thoughts and you have to gauge whether it is worth trying.

In the earlier times, one thing we did was to convince Mom that she needed occasional "help" with the house. That opened the door for a part-time health aide who was willing to do what Mom asked of here. We said nothing about cognitive issues and told Mom that it was just that things were getting a little beyond her and that this would help her keep up with things.

Again, you have to gauge whether any of this will work in your situation. They are just suggestions.

Good luck and remember that we are here to help with questions or just as a place to vent.


Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Wed Aug 03, 2011 1:45 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Looking for Help
In our society, people are allowed to make poor decisions until they become a danger to themselves or others. The best you can do is to monitor her, and wait for a disaster to occur.

Mon Aug 22, 2011 3:24 pm

Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Looking for Help
Hi jpbb4,
Your plea has prompted me to answer, although lately I usually just read the replies others have made. My husband was still fairly 'normal' after his dx, but showed signs of depression that I mistakenly thought was just part of the disease development. He was lethargic and apathetic, sat in his chair a lot and watched TV. One day he took a walk in the back yard and stepped off a 6 foot retaining wall onto the concrete patio below. While he was lying there waiting for the paramedics he told me he wanted to die, didn't want to live like this. Not only did he completely shatter his arm and gash his head open but the resulting hospital stay and surgeries propelled him forward years in his Lewy progression. I was told by the docs that he had shown signs of depression and should have been put on an antidepressant. We will never know if his step-off was an accident or not, but I wish someone would have stressed to me back then the need to try him on an anti-depressant. He has since been put on Zoloft which works wonders for him. I'd also like to add that it is very important to get the 'paperwork' handled right away. It is hard to tell what tomorrow will bring. Good luck to you, the wonderful people on this forum are a fountain of information and help. Take care, Sher

Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.

Fri Aug 26, 2011 8:44 am
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