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 How do you know when it's time? 
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post How do you know when it's time?
What triggers the decision to place a loved one in a full time care facility? I've been trying to decide what I think and I can't seem to come to a real conclusion, more just thinking in circles.

My mom has had some significant decline in the past few weeks and it culminated in a lovely situation for my dad and mom this past week. Apparently there was no toilet paper left in the bathroom she and my little brother share and she got poo everywhere, all over herself, the bathroom, the carpet in my old bedroom. No nice way to share that kind of info! My dad tried to get her to take a shower and she just wouldn't. He eventually got in the shower with her and scrubbed her down.

I talked to my little brother (not so little... he's 26 but is living with them) yesterday and he seems to think it's time to place her somewhere. He has a tendency towards being melodramatic but he has been actually quite practical and mature when dealing with mom and the entire situation. Dad seems to think that maybe this is just another temporary downturn and she'll bounce back a bit but I'm not so sure anymore. Granted I only have hand-me-down info since I'm not there but it's definitely making me wonder if I shouldn't talk more about it with my dad. He's getting info from lawyers and his accountant and doctors and such to try to figure out the best options and it's very clear he needs to get someone in the house full-time to help.

Of course my brother just lost his job yesterday so he told my dad he will stay home with mom to help if that's what the two of them decide is best temporarily. My brother gets frustrated like anyone else but he's actually pretty good with her and he says that she loves seeing him. She's even cried when he got her a birthday card and told him that it was the best birthday she ever had. My brother said he was thinking, no, no it's not, it's the worst, but if she thinks it's great then what do we know. He's had more luck getting her to take a shower and brush her teeth (she's pretty much stopped doing these things entirely) and he combs her hair for her. Even when we were little he loved playing with her hair; oh, if only the situation was different! She's also been eating a LOT more junk food - my dad buys her little treats and he comes home from the store and an hour later 3 packages of cupcakes are gone. Very not like my mom, at least not the previous version of her. :|

I'm just rambling mostly but I wonder when people make that decision because I'm not sure any of us even knows quite where to start. As usual!

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Sat Jul 23, 2011 5:12 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: How do you know when it's time?
Many people are often "forced" to make the decision for placement when the safety of the care recipient is at risk, or the safety and health of the caregiver is at risk.


Sun Jul 24, 2011 12:20 am
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Joined: Wed Sep 30, 2009 8:25 am
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Post Re: How do you know when it's time?
I can relate to your dilemma. My Mom-in-law can't do anything for herself. We have caregivers who come in when we are not here, but lately we can't get her out of the house even for doctor's visits. Do we place her or continue to keep her at home? Home health turned us down for nursing assistance because she was released from them three months ago and Medicare won't authorize payment. But as is typical with Lewy, a decline can be sudden and severe. I am in talks with the doc about what the best course of action would be. I don't want to put her in "home" too early, but is now the right time? Agh!

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Sun Jul 24, 2011 9:36 am
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Joined: Tue Feb 23, 2010 10:32 am
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Location: Kalispell, MT
Post Re: How do you know when it's time?
There are lots of posts about this issue scattered through the topics, including mine. I wonder if they all have a commonality which would yield collective advice, experience, or guidelines?


Sun Jul 24, 2011 1:32 pm
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post Re: How do you know when it's time?
Donna, it's definitely frustrating! My dad is having to really get on my mom's neurologist to get her assessed and have them follow up with her more regularly. Her neurologist is her regular one that has kept tabs on her epilepsy for many years but I'm not sure how much he can really help. He was so shocked at how much my mom has declined at her last doctor's appointment that he was urging my dad to start figuring things out as far as what to do/ where to place her.

I don't think mom is a danger to herself or anyone (at least not yet) but she just isn't even taking care of herself anymore. I just wish I could find a magical answer to help my parents. Over and over again I just hate feeling so helpless. sigh

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Sun Jul 24, 2011 2:51 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: How do you know when it's time?
Jamie, I am so sorry that you have to deal with this with such a young mother. I am sure that your parents are glad to have your help. I wonder if it would be appropriate to ask mom's doctor for a referral to another specialist who specializes in dementia? The fact that the current doctor has her medical history and had known her many years is a plus, but perhaps it would be helpful to have a new set of eyes to look at the situation.

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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 Jul 24, 2011 4:22 pm
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Joined: Sat Jan 30, 2010 3:53 pm
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Post Re: How do you know when it's time?
Thanks, Jeanne. Yea, when my mom was in the hospital at Johns Hopkins she was seen by a doctor who specializes in dementia and has a lot of knowledge of Lewy Body dementia but they told my dad that there's really not a whole lot they're going to really be able to do. Often I think we're left feeling like we've been dropped by the medical community in some ways, even when there are ones that would love to be able to help there's just not much to be done. I'm going to ask my dad about the doc at Hopkins again and maybe we'll see if there's any point going to see her. I'm going to be home to visit them in the next few weeks and my dad scheduled an appointment with her neurologist then so I can come along. We'll see what happens.

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Sun Jul 24, 2011 4:59 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: How do you know when it's time?
I want to just rage at doctors who say there is nothing to be done. True, there is no cure, but there are many somethings that can be done or at least tried to improve quality of life. I attended a talk for caregivers given by the local LBD guru. He was asked, "How long should you keep trying to make things better for the loved one? When should you give up?" His answer was that you give up everything except comfort in the end-of-life stage. Until then, you keep trying. (Not for a cure -- just for the best quality of life possible in the circumstances.)

LBD declines can be from 3 causes:
1) an illness, especially an infection such as UTI. If that is the cause, the decline will be reversed when the illness is cleared up.
2) a reaction to meds. If that is the cause, (with a few important exceptions) the person will gradually return to baseline when the meds are straightened out.
3) an advance of the pathology. If the decline is due to the progression of the disease, it is permanent.

I would be very careful to rule #1 & #2 out before taking any drastic steps, like a NH. I would also want to discuss progression of the disease (#3) with a doctor who doesn't just say "there is nothing to be done." There may be ways to deal with certain elements of the decline, or medications that can make the situation more tolerable.

There is no cure for this this disease. No matter what is done, the ultimate outcome is the same. But things can be done to improve the years between onset and death. It makes me very angry to hear doctors throw up their hands and say nothing can be done, without even trying anything.

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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 Jul 24, 2011 7:29 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: How do you know when it's time?
Jamie, I think why "nothing to be done" is such a hot button with me is that the most prominent practioner in my metro area believes in doing things, and also my husband's doctor is Brad Boeve, who says this in an editorial to doctor:
"It pains us greatly to think of the LBD patients who see physicians who have the all-too-frequent view that "this patient has dementia, none of the drugs work so there is little to do, so get your finances in order and plan for a painful next few years when you won't recognize your family, will need to live in a nursing home....." This is the view of so many MDs, including neurologists and psychiatrists, and it is our (LBD specialists) obligation to educate the public and the medical community that LBD is very different than AD, and it is absolutely unacceptable to do nothing or take a nihilistic approach. We must also maintain realistic optimism, since there is almost always something we MDs can do to affect quality of life - through medications, education, counseling, behavioral modification, etc."

http://www.lbda.org/feature/2126/lbd-requires-a-comprehensive-treatment-approach.htm

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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 Jul 24, 2011 7:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: How do you know when it's time?
I'm not one who goes for false hopes, and would prefer to hear the reality, no matter how bad it is. When my dad had his big decline with no diagnosis, we were told "once he sees a neuro. and gets a diagnosis, then he can be given meds that will help him." Then he sees the neuro and puts him on Namenda and Aricept and things were "better" cognitively for a few weeks. His drs. and nurses were optimistic, so we were too. Then he became super angry most of the time, and it seemed like cause and effect - the Aricept and Namenda made him think more clearly so he knew how bad off he was, so he was frustrated, angry and scared way worse emotionally than before the drugs. Personally, the amount of time and energy put into trying to find solutions for him was all for naught, and in hindsight, I would have appreciated hearing "there is nothing that really is going to help him." I could have accepted that and been a lot less stressed. "Just keep him comfortable" would have been preferable.

Unlike some of your LOs here, my dad was pretty old (87 at the time of The Big Decline) and his kidneys were failing, he had high BP and high cholesterol so it would have taken a miracle for anything to help him, in reality. His GP that he had before he was hospitalized was pretty realistic - "your dad has Parkinson's probably, and there are a few meds that may help him for a short time". Unfortunately, once he was in the hospital and until he died he couldn't have that GP because of location. For me, I'll take someone who is upfront and realistic over a dr. who sugar coats the prognosis and will try anything to "help". 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.


Mon Jul 25, 2011 1:13 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: How do you know when it's time?
Seems to me that we cannot speak in generalities in this area. Jeanne's experience is surely unusual, having a LO with early stage LBD for eight years, if I am doing the math correctly. It's not fair for most of us to expect that, especially those of us whose LOs are of advanced age. My mother blew through the early stage of dementia in about a year, despite the best efforts of neurologists and medications.

Lynn, I totally agree with you about being realistic and not creating false hopes. I was fortunate to have neurologists who gave me a clear idea of what my mother was going to face. I am also grateful that no one has tried to make me feel I have failed my mother just because I have accepted the facts and not struggled against a disease that is ultimately hopeless. Most of us have enough sadness and guilt to deal with already without being made to feel that we have failed our LOs.

Julianne


Mon Jul 25, 2011 2:13 pm
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Joined: Sat Jan 30, 2010 3:53 pm
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Post Re: How do you know when it's time?
Jeanne, what you quoted is exactly the feeling I have from what my dad reported from the most recent trip to the neurologist. My dad has been frustrated because he feels like no one is doing anything to help us, not really, not enough. I read through the article you linked and I do feel like my dad is the best "detective" in my family and along with my younger brother they pick up on a lot more than they tell me.

Right now she's taking aricept and seroquel and her doc doesn't seem to think the aricept is doing anything for her. I wish we could figure out where she is in the course of the disease, or really, where she is in her course of the disease. I wish we knew how fast she's actually progressing, how much time we've got left. The last time my dad took her to the neurologist all they did was some bloodwork and another MRI. Not sure on the results of the MRI but I imagine they would have told my dad if it was showing more atrophy than before.

I'll ask my dad if it's possible they checked for a UTI or if she's shown any symptoms of a UTI. She has had so many problems with continuous and repeated UTIs in the past (she had a surgery to fix a bladder diverticulum), it's funny that that's one of the things that can potentially aggravate the symptoms.

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Mon Jul 25, 2011 5:05 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: How do you know when it's time?
Jamie, it is interesting about the UTIs. My husband has had a long hx of UTIs, too--many years before having a catheter, so that can't be blamed. And someone posted a research article not long ago suggesting that there could be a link [at least an association] between chronic infections and dementia [I think it specified PDD & LBD but I'm not sure]. I'll see if I can find it.

_________________
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 25, 2011 5:15 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: How do you know when it's time?
Sorry, it was Alzheimer's but the principle might still apply. http://www.alzheimersweekly.com/content/treating-chronic-infections-may-block-alzheimers

_________________
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 25, 2011 5:20 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: How do you know when it's time?
Lynn, Dr. Boeve's term is realistic optimism. I think that is different, in intent, anyway, than false hope.

Coy's PCP said, "You have dementia. I'm so sorry. Here's a prescription for a walker. I wish you luck." That was it. If we hadn't hooked up with someone willing to try things to make improvements I doubt very, very much that Coy would be in early stage now.

Not everybody responds to all treatment options. Some respond to almost none. Jamie's mother is in her 50s. I think that should be approached differently than a person in his 80s or 90s -- although I think improved quality of life is worth aiming at for any age.

Isn't that what we are doing here? Trying to share ideas for even small improvements -- like how to help a loved one hold on to a glass? Eventually that loved one may not be able to grasp a glass at all, but until then, why not try to make it easier? How to calm a delusion loved one making strange demands? Whether to push for more stimulation or less? What drugs others have had success with?

Isn't that why we are so interested in what it is like for Tonya and Craig -- to see if their insight can help us make our loved ones' lives a little less stressful, one minute at a time?

It is false hope to imply that life will be completely better and close to normal with a good treatment plan. It is false despair to say "Nothing can be done. Buy a walker. Good luck."

I am hugely in favor of realistic optimism.

Yes, Coy's situation is unusual. But not unique. And I think it would be less unusual if more doctors didn't give up without trying.

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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


Mon Jul 25, 2011 6:50 pm
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