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 placebos? 
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post placebos?
So my mother went to Target with a group of folks from her Assisted Living facility and bought a lot of "over the counter" drugs. She isn't allowed to take these drugs for several reasons and she is angry and resentful about that. She feels strongly that they are trying to control her and she is very very angry about that. Having said that, I will point out that she pops pills all day when left to her own devices. I have had to detox her off of the benzodiazepines that she was on and I know that she had a previous problem with narcotics when she was in her 40s. With the DLB, my mother has no idea when she takes drugs and always thinks that she hasn't had them (so wants more). She has the various over the counter drugs given to her every four hours per the instructions of her GP with the parkinson/DLB medications. My sister, who is the current "daughter on the spot," is very angry and wants to confront mom and yell at her about the drugs. I am thinking that replacing the pills with placebos would be the thing to do - but the facility won't condone that because they are "state certified" and I guess that means giving a patient placebos isn't allowed. However, I figure if we do it (replace the real tylenol, ibuprofen, etc. with placebos) then they wouldn't have to take the responsibility for it. I think control over medications is emotionally meaningful to my mom and would help her anxiety (but she can't actually take real control or she will do damage to her body). Do any of you have experience with this? What do you suggest? Anyone have ideas on what to use for placebos? Someone suggested Tic Tacs to me, but if we are replacing several drugs, I may need more than that.

Thanks - Liz


Fri Sep 30, 2011 12:18 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: placebos?
Liz,

Why did the GP write an RX for these OTC drugs? Does he know the side effects for your mother? I would think one approach is to communicate with the GP about this today.

Also, I believe there is such a thing as a pill that is a placebo. The MD might be able to prescribe this. (You could ask the pharmacist about this.)

Awhile back I suggested that a family consider giving a loved one a Vitamin C lozenge. I forget the story. (It might've been here that I made this suggestion.) But the lozenge was also being used to deceive the family member. You might try to find some OTC things that she could take. (Ask the GP about this.)

Robin


Fri Sep 30, 2011 12:29 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: placebos?
I'm confused, Liz. Is what your mother just bought over and above the OTC the doctor has approved, or just what he has approved? If she is only taking what her doctor told her was OK, then I agree with Robin, the solution has to start with the doctor.

I don't know your mother, but most people would be inclined to feel less "controlled" regarding medicines by their doctor than by a family member of ALF staff member.

I am very sorry that you are facing this vexing problem. Placebos sound like a creative solution to me, but I can see why the ALF has a problem with it, especially if these are meds ordered by her doctor.

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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


Fri Sep 30, 2011 1:35 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: placebos?
If the doctor's medication orders are clearly written out so she can read them, then why not go with that? Or am I not understanding the problem? If she takes Tylenol frequently she should probably have liver function tests routinely done, as her physician probably knows.

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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.


Fri Sep 30, 2011 2:06 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: placebos?
The first thing I thought of too was Tic Tacs, and they come in different colors. I also thought about the idea of vitamins, maybe other supplements that wouldn't be harmful in small doses??? 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.


Fri Sep 30, 2011 2:11 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: placebos?
Hello Everyone:

I was probably unclear in my post. Let me clarify - my mother's GP prescribed some tylenol/ibuprofen and tummy medication because my mother is extremely persistent about getting as much medication as people will allow her to have. The facility requires that they give ALL medications (and given that my mother will pop pills all day, I can understand this). My mother is taking the tylenol./ibuprofen every 4 hours with her other medications (and the stomach medication that her neurologist says probably won't do any good anyway - but my mother is so attached to the idea that medication will fix everything). My mother feels angry that they won't let her administer her own tylenol/ibuprofen/suppositories/stomach medication/whatever so while she was out she bought more for her own (the over the counter stuff) administration. For liability reasons, the Assisted Living facility will not do "as needed" medication. My sister called me this morning very upset and wanting to "confront" my mother about the medications that she bought herself and hid all around her room so that she could "get them" when she wanted them. I suggested that my sister look for those bottles and fill them up with some placebo instead. Then my mother will feel more in control while we don't have to worry about her taking too much medication that can damage her liver. It seems like a good - but somewhat underhanded - idea. I feel bad deceiving my mother, but I don't think that arguing with her all the time does anything but make her paranoid that we are out to get her. Thanks for your thoughts - it is SO wonderful to have people with experience to talk with. Unlike when one has children, people really don't offer their wisdom concerning caring for parents/seniors.

Liz


Fri Sep 30, 2011 4:11 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: placebos?
Ah. The staff is already giving her what the doctor has approved, and even that is questionable. Mother went out and bought more so she can take more (and be in control). Since she has dementia and can't remember reliably what she has taken, that seems dangerous.

If she didn't have dementia I'd be in favor of your sister's plan of confronting her. But she does so I'm not.

If you confiscate them, she'll just hop on the next van to Target and get more, and meanwhile be alienated from the folks who are trying to protect her.

Replacing her private supply with placebos sounds reasonable to me, under the circumstances. If you think what she is getting by doctor's orders is too much, too, you need to work through the doctor on that.

What a problem! This sure wasn't covered in the manual on how to care for your parents, was it? :shock:

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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


Fri Sep 30, 2011 4:25 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: placebos?
When a person has dementia, life is a whole different story than before. In order to keep the person relatively calm, peaceful, contented, and to help them feel like they are in control you may have to be "deceitful". They become somewhat like children in that you have to look out for their safety and do what needs to be done, no matter how they feel about it if they are apt to do something harmful to themselves or others. So if that means getting white, green, and orange Tic Tacs and filling her bottles that she has hidden, so be it.
None of this stuff is easy, and also remember not to feel guilty about it. You wouldn't feel guilty for protecting a small child, right? And so it is with your mom.
As to your sister confronting your mom, she sounds about as helpful as my sister was sometimes with my dad. I kept telling my sister over and over that when a person has dementia they no longer think rationally and logically. Confronting them will do absolutely no good and may do some emotional harm for all involved. It is just not a useful way to deal with a person with dementia, who cannot help how they feel or behave. Perhaps your sister can join the forum or do some reading about dementia patients and how to enhance communication?
Wishing you all the best in dealing with a tough situation. 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.


Fri Sep 30, 2011 6:12 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: placebos?
I still think you need to speak with the MD about the PRN meds being given regularly.

And ask the MD about substituting the OTC meds with vitamin C lozenges or something harmless.


Fri Sep 30, 2011 11:03 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: placebos?
The idea of "white lies" is challenged in this recent New York Times article. I would imagine the placebo concept falls under a "white lie."

http://newoldage.blogs.nytimes.com/2011 ... and-worse/


Fri Sep 30, 2011 11:06 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: placebos?
Interesting article, Robin, but it excludes dealing with persons with dementia. A "benevolent lie" to someone who is competent to make rational decisions (even if they are decisions you don't like) is different than the same to a person whose reasoning is impaired, or so the article implies.

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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


Sat Oct 01, 2011 1:02 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: placebos?
Liz, just a thought. Is your mother OK in ALF, or would a memory care unit be more suitable?

Your situation is painful to think about. I'd want my mother to be as independent as she could be, for as long as she could be. But if she used that independence to do potentially harmful things to herself, then what?

Won't your mother notice that her pills don't look the same after you replace them?

(You can tell that this is bothering me. I don't know what I'd do if I were you. I wish you all the best. Please keep us informed.)

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


Sat Oct 01, 2011 2:53 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: placebos?
I think that the people who think benevolent lying, for the sake of keeping our LOs safe and happier, or at least less anxious, depressed or whatever, have never been caregivers for a person with dementia.
If I hadn't sneaked my dad to the ALF before The Big Decline and told him we were going in to get info. about the possibility of his moving there, that would have been another huge thing that I would have had to deal with. At least by doing that, he made the decision to move there, and that gave him as well as me a lot of comfort. By the time he got there it was too late for him to have made the decision, let alone visit the place and have any type of normal interview.
It was downhill from there. I did what was necessary to try to make his life as good as it could be under the circumstances, even if that meant I had to stretch the truth, lie or whatever. And when I was truthful he often didn't believe me anyway! When you are dealing with a person with delusional thinking you have to behave differently than when you are dealing with someone who is still rational.
I don't like being judged about my behavior when someone has not walked a mile in my moccasins and I doubt the people who were quoted in the article with whom I don't agree would feel the same way. Just because it's in print doesn't make it right! 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.


Sat Oct 01, 2011 8:46 am
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Joined: Wed Sep 30, 2009 8:25 am
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Post Re: placebos?
When my MIL lived in the ALF, she used to buy tylenol, a lot of tylenol. She would sneak it into her basket at the store. I would help her unpack her groceries and immediately confiscate it. I would get the key to the medicine chest and lock it away. Boy, would she get mad. But I had to do it for her safety, since she would not remember when she took it last and would take more. It's a loss of control thing. Anyways, after a bit she would forget about me locking the stuff away and all was copacetic until the next trip to the store. Sometimes I would sneak it out of her cart before she got to the checkout. Luckily she never went on the group outings because she was afraid she would get lost in the store and embarrass herself. More than once I heard "Donna G.... report to the customer service desk." I knew she would be there waiting for me. :lol:

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


Sat Oct 01, 2011 10:21 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: placebos?
We must not have read the same article because the one I read introduced two examples -- one with dementia and one without.


Sat Oct 01, 2011 1:15 pm
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