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It scares me to think that medication is the answer to issues.
Michael Ellenbogen
Posted: Saturday, August 24, 2019 6:16 AM
Joined: 11/30/2011
Posts: 2409


I read so many times about some issue one is having that people without dementia just don’t understand. More  and more I see some one recommending medications to help. I keep telling folks one needs to become a detective and one needs to try to think from there point of view. You may need to think like a child a 5 years old to try to discover their thinking. Some times play along with them and seek more clues. It really does work as I have heard many stories personally from Teepa on how one can figure things out but it takes lots of time and thinking out side the box.  


dayn2nite2
Posted: Saturday, August 24, 2019 6:39 AM
Joined: 6/20/2016
Posts: 1941


Well, if most of us had “lots of time,” we’d probably become the detectives you’d like us to be.

Many of us also hold down full time jobs and are also taking care of other people, so we do the best we can with the time we have. 

Also, because we all have different situations, the PWD isn’t always first priority.  If there are children, they should be first priority anyway. 


SelEtPoivre
Posted: Saturday, August 24, 2019 6:49 AM
Joined: 3/8/2018
Posts: 788


I knew most of the reasons that my mom was getting up repeatedly at night, thinking it was daytime, but that didn’t change the fact that her sleep and mine was disrupted, especially since I had to go to work despite her (and of course me) being awake at 1am, 3am, 5am several times a week.

Bedtime medication for her allowed her to sleep through the night, be rested and calmer during the day, and I could function at work and home.


ruthmendez
Posted: Saturday, August 24, 2019 7:12 AM
Joined: 9/8/2017
Posts: 2073


It scares me that you even post this...new caregivers would probably take your advice. This, as you know, would make life unbearable for the caregivers.
ruthmendez
Posted: Saturday, August 24, 2019 7:17 AM
Joined: 9/8/2017
Posts: 2073


Michael Ellenbogen wrote:

 ...Some times play along with them and seek more clues. It really does work as I have heard many stories personally from Teepa on how one can figure things out but it takes lots of time and thinking out side the box.  

Is this another way you’re calling us “clueless” again??

harshedbuzz
Posted: Saturday, August 24, 2019 7:33 AM
Joined: 3/6/2017
Posts: 1638


Dad's dementia occurred in the context of long standing mental health issues. Medications were necessary to keep him and my mother safe and allow him to respond to strategies like Validation.
Victoria2020
Posted: Saturday, August 24, 2019 8:43 AM
Joined: 9/21/2017
Posts: 836


If something is fixable in a concrete way- door locks, no driving - fix it but dealing with the mental issues - and the caregiver's need to survive and function? Maybe try support groups, therapy first if time - but we can't judge another's  brain needs.

 

https://www.youtube.com/watch?v=7qwq76p93U8


jfkoc
Posted: Saturday, August 24, 2019 9:33 AM
Joined: 12/4/2011
Posts: 17169


https://www.uofmhealth.org/news/archive/201503/time-%E2%80%9Cjust-say-no%E2%80%9D-behavior-calming-drugs-alzheimer-patients
NoSiblings
Posted: Saturday, August 24, 2019 10:16 AM
Joined: 9/3/2016
Posts: 214


I understand what you are saying, and I think it is wonderful when that works. But there are times when no matter how hard we try to think outside the box, no matter how many different strategies we use, etc. nothing other than medication will work, and sometimes even finding the right combination of medication is not an easy thing to do. So I definitely agree that whenever possible we should go the non-med route, but there are times when that simply is NOT possible no matter how much one wants to do so or how hard one tries. It's also important not to make caregivers feel anymore guilt and stress than they already do about the sometimes very difficult decisions they must make. Sometimes all the distracting, all the calming music, etc in the world will simply not work and wishing it were so does not make it so.
gubblebumm
Posted: Saturday, August 24, 2019 10:30 AM
Joined: 7/12/2017
Posts: 1302


I HATE when people say a person with dementia thinks like a five year old, and thus we should be able to understand what is going on in the damaged brain.  That is just not true.  Yes, some of the activities may appear similar, they just aren't. A child usually learns and moves forward (yes I know not all kids can but in general) When we say don't do that, a child will pay attention and listen, they understand consequences and adapt.  Often PWD don't have those skills anymore, so "understanding the why" doesn't really make any difference.  And if the PWD is agintated medication may help them.  Its not just about the caregiver I am aware, but the caregivers really need help and shouldn't be blamed for not knowing all the nuances of this disease when doctors, researchers, nurse, aids don't have most of the answers besides learn to deal with it and plan for the worst.  We can potty train a child, and we know there will be accidents, but there is forward progress, often with adults the brain doesn't work that way anymore.  Kids will sleep PWD often don't sleep at night, its all confused.  Wow I am a detective, I know some can't sleep at night they have their internal clocks all messed up...but then what?

My mom took meds for many of her adult years, now they don't help her, but if they did I would absolutely give them to her.

 


Army_Vet60
Posted: Saturday, August 24, 2019 10:53 AM
Joined: 6/21/2019
Posts: 363


There is no Answer to the various Dementias caregivers are dealing with.

The Cure is the answer, and nobody's found the Cure.

Medication isn't an answer. It's a tool the caregiver sometimes needs to use.

"Playing along" with a PWD isn't an answer either.

It's also a tool the caregiver sometimes needs to use.

Babysitters for the PWD are tools.

Safety locks and baby food are tools.

Caregivers know there are no answers...….


abc123
Posted: Saturday, August 24, 2019 11:44 AM
Joined: 6/12/2016
Posts: 464


Michael, I’m sorry that the recommendation to use meds upsets you. Just last night I posted about sleeping meds. If a pill will bless my Mother with a full night of sleep I’d be happy about it. That means she is rested and I am rested. I am a firm believer in the gift of medicine especially to help calm an angry/violent person. I think it would be cruel to let a human being continue on in a rage of anger and confusion when the possibility of medication could bring them peace. To let a human being continue on night after night roaming from room to room searching for God only knows what, when the possibility of medication could bring sleep and rest, I will use the gift of medication.
Iris L.
Posted: Saturday, August 24, 2019 1:44 PM
Joined: 12/15/2011
Posts: 16092


The boards are becoming a minefield for PWDs.  When I first joined there used to be more communication between PWD and caregiver.  What most of you don't realize is that our communication skills diminish over time.  Michael probably has more in mind but cannot expand on what he wants to get across.  I understand him to say, try to investigate a behavior and seek a solution before reaching for the medication.  There is nothing wrong with that.  Most of you already do that.  

Why is there so much harshness and defensiveness against PWDs? I made a decision to refrain from posting on the caregiver boards, but I felt I had to speak up here in Michael's defense.  The atmosphere has become toxic IMO.

Iris L.


ruthmendez
Posted: Saturday, August 24, 2019 1:55 PM
Joined: 9/8/2017
Posts: 2073


I don’t feel that’s what’s happening. My opinion, as a caregiver, is stop judging our hard working efforts. We look for tools as ArmyVet mentioned. We are learning and the path changes.  One thing won’t fit all. I NEED to keep myself healthy for this journey I choose to continue. Playing dolls all day with dad and smiles and songs and all this stuff that “experts” expect us to do....$&/-&@ it!!
Iris L.
Posted: Saturday, August 24, 2019 2:09 PM
Joined: 12/15/2011
Posts: 16092


Ruth, I don't see judging, I see making a helpful suggestion.  I see the problem now.  Unfortunately I don't see a constructive solution.

Don't think I don't value your collective hard work and experience.  I have pages and pages of notes.

Iris L.


ruthmendez
Posted: Saturday, August 24, 2019 2:32 PM
Joined: 9/8/2017
Posts: 2073


I'm sorry Iris.  I think I overreacted.  And thank you.
GemsWinner12
Posted: Saturday, August 24, 2019 2:46 PM
Joined: 7/17/2017
Posts: 357


On one hand, I agree that thinking through a situation and trying to avoid medications as a knee-jerk reaction to PWD undesirable behavior is best.  It just isn't possible in all situations.  

My mother hit a pregnant caregiver in the stomach; she had been escalating with aggressive behavior, and I got this emergency call from her memory care facility that this had happened. There is no way that we could have waited it out and used behavior therapy in this instance. I immediately had to leave work and have a conversation with my Mom's care facility and the nurse practitioner in order to put my Mom on medication right away. She posed an immediate threat to (and did harm) caregivers and other residents.  Residents are also asked to leave facilities if they display repeated aggressive behavior, and the family refuses to consider medication.  

 

So, of course it is ideal if the PWD can be approached differently in order to reduce undesirable behavior; sadly, it's just not always possible to avoid medication altogether.  


lizziepooh
Posted: Saturday, August 24, 2019 2:51 PM
Joined: 5/2/2019
Posts: 127


Iris L. wrote:

Why is there so much harshness and defensiveness against PWDs? I made a decision to refrain from posting on the caregiver boards...  The atmosphere has become toxic IMO.

 

I would be really interested in hearing more from you on what you have seen that leads you to this conclusion, excluding the more recent personal attacks that I have seen against you because 1) they are obvious so no need to bring those up and 2) they were completely inaccurate and unfair to you. (I really wanted to jump in on that other thread and correct people but I did not think it would help and I thought it may do more damage to the discussion so I refrained though I really wanted to tell you what I thought so I am glad I got the opportunity here.)

 

 

But I do want to know what you have found harsh and defensive towards PWD. I would be interested in hearing what you have to say on that.
 

 

It is interesting, just last night, I was speaking with my boyfriend about you, Iris. He said he was not sure what he would do if he got dementia and I was not around. I explained, as best I understand, the tools you have developed in your own life. The idea to simplify your life and choices, limit your belongings and to control your environment/routine resonated with him. He never thought of that. 
 

 

I believe you two are similar at least in the sense of being very intelligent, rational and distrustful of others so being able to tell him that there are things that he may be able to do to help protect himself gave him some relief. And I would not know any of those things if you hadn't shared them with the people on this site.
 

 

I understand if you do not want to post on the caregivers board anymore but I really hope you do. I find your postings very valuable and now, by extension, my boyfriend has found them very valuable. So there are at least two people better off from you postings and I am sure there are many others.

jfkoc
Posted: Saturday, August 24, 2019 3:04 PM
Joined: 12/4/2011
Posts: 17169


I really do not think that there is anyone on here who would say that drugs ought never be given to someone with dementia.  Ido not think that it the message at all.

By the same token is there anyone here who would say that drugs should be the go to treatment for our loved ones that we take care of and are responsible for especially now that there are ongoing studies that show that non-medical treatment is at least an effective treatment tool and some studies show it is more effective.

When you think about it I think all of us here go the non-drug route initially. We do look for the work around solutions. We do read Naomi Feil and watch Teepa Snow. We always share things that have helped us care for our loved ones. 

The more we read, the more we share, the more we educate ourselves the better it is for both our loved ones and us.

Just my opinion...I know there are some who will not agree.


ruthmendez
Posted: Saturday, August 24, 2019 3:38 PM
Joined: 9/8/2017
Posts: 2073


jfkoc wrote:

...

By the same token is there anyone here who would say that drugs should be the go to treatment for our loved ones that we take care of and are responsible for especially now that there are ongoing studies that show that non-medical treatment is at least an effective treatment tool and some studies show it is more effective.

Personally, my study is my father.  That's all I know. And I know him best.  We have had the antipsychotic and anti-anxiety meds increased, or changed, and now reduced.  Actually, just for one little attempted slug against the bath aide, the Hospice nurse wondered if it was time to increase his meds again.  I said not.  I didn't even expect the bath aide to freak out that much.  She never returned.  
I know he's just fine.  I know he doesn't hit that hard.  Other people would have  freaked and cried "yes, more drugs, he's out of control! OMG!" 
Later, as he progresses, I may check with reducing some more if possible.  However, currently, with these drugs he can sleep, and have a good attitude when he wakes.  All day he's awake, with no drugs during the day. I study his changes and my manners everyday.  Somedays, my analysis is off, but I quickly catch on and listen to other more experienced people.  My support group leader is a nurse too.  She has had enough experience with this disease for many years. She always looks out for us caregivers, because she knows that without us doing all work, the PWD will not get the best care.

 


Iris L.
Posted: Saturday, August 24, 2019 4:40 PM
Joined: 12/15/2011
Posts: 16092


lizziepooh wrote:

 

 

 

 

But I do want to know what you have found harsh and defensive towards PWD. I would be interested in hearing what you have to say on that.

 

 
Lizzie, I feel that the responses to Michael on this thread have been harsh and defensive.  Ruth said she felt judged.  Someone on the other board said she felt judged by me.  Speaking for myself, I don't even know what that means!  Is it judging to point out a different approach?  It has become apparent to me that people use the word judging differently than I do.  Personally, if I point something out, it is in an attempt to share and educate, not to judge, whatever that could mean.  They are taking a bad connotation.  It's as if, they are saying that I am saying, "you are a bad person."  That's what I am deducing.  No, I am not saying that at all!
  
 
I used to post about anosognosia when a member commented that her LO was in denial, because I know that most people, including myself before I came to this board, never heard of anosognosia.  A few members insisted their LOs were in denial.  I tried to tell a member that confabulating in a PWD was different from lying and I got trounced.  Why did I insert myself in their comments?  I thought what I had to tell them could make their lives easier.  

 

The ironic thing is, I have been helped and educated so much by the members here, I felt I wanted to repay by sharing and helping out where I could.  

 

I am really surprised about the insight into judgement.  I'll have to think some more about that.  I surmise that people feel insecure, thus feeling judged.

 

Iris L.


Iris L.
Posted: Saturday, August 24, 2019 5:25 PM
Joined: 12/15/2011
Posts: 16092


lizziepooh wrote:

 

 

 I explained, as best I understand, the tools you have developed in your own life. The idea to simplify your life and choices, limit your belongings and to control your environment/routine resonated with him. He never thought of that. 
 

 

Alz+ posted a very nice response on the YOAD thread "LO diagnosed at 54" that describes my philosophy, which I learned from PWD and caregiver members.

 

Iris L.



Victoria2020
Posted: Saturday, August 24, 2019 6:01 PM
Joined: 9/21/2017
Posts: 836


If a poster doesn't want the issue discussed and debated, don't start the thread. To have the board called "toxic" because everyone didn't fawn and agree with OP?

 Well, may as well get AI bots in here to reply "have a good day." With a ukrainian accent. They make the high end bots.


elhijo
Posted: Saturday, August 24, 2019 7:19 PM
Joined: 7/16/2018
Posts: 15


jfkoc,

Thank you for posting that link, I appreciate it lots and it gives me hope!


ruthmendez
Posted: Saturday, August 24, 2019 7:36 PM
Joined: 9/8/2017
Posts: 2073


the judgment does show.  I do not feel insecure about the way I care for my father.  The problem is this is not the first time the OP disapproves of what the caregiver says on these boards or how we want to use it.  Even went as far as harassing one poster on several of her threads.  And I've seen name calling in describing a caregiver.  Hey, give us a break. We are the ones who are caring for the PWD.  

One time there was this nice post about how to care for the PWD with showering methods and feeding methods.  The OP of this thread didn't think it was good enough.  Seriously?  When asked to bring ideas, silence.


lizziepooh
Posted: Saturday, August 24, 2019 9:03 PM
Joined: 5/2/2019
Posts: 127


Iris wrote:

Lizzie, I feel that the responses to Michael on this thread have been harsh and defensive. 

*****

I know you do however from what I have seen from how Michael thinks of caregivers, this was expected. Michael has clearly made his opinions known that he thinks the caregivers are wrong and he really has no respect for us. This is not a secret hence the references to his calling caregivers as clueless. He has done that before and I believe he meant it. I took him at his word.

That is fine. Michael can think we are clueless. He has the right to that opinion and please correct me, Michael, if I have misrepresented your thoughts about caregivers.

 

He is not victim of aggression. He started it and this is the conclusion. 

Iris wrote: 

Someone on the other board said she felt judged by me.  Speaking for myself, I don't even know what that means!  Is it judging to point out a different approach?  It has become apparent to me that people use the word judging differently than I do.  Personally, if I point something out, it is in an attempt to share and educate, not to judge, whatever that could mean.  They are taking a bad connotation.  It's as if, they are saying that I am saying, "you are a bad person."  That's what I am deducing.  No, I am not saying that at all!

*****

I have been on many discussions before this time and I can say, this place is special. There are not places like this. They are rare and should be cherished.
You and me, Iris, are rare. We are people that hear an idea and then we think is it correct or incorrect. I have come to the conclusion that most others think, “Are they talking about me?” And then, “ I think they are talking about me” and things go haywire. Lol!

 

 Iris wrote:

 

I am really surprised about the insight into judgement.  I'll have to think some more about that.  I surmise that people feel insecure, thus feeling judged.

 

*****

I have thought about this a lot. I joke that it is because my ego is so big that it has no affect on me. Lol!

 

But that is not it, it is I really just think an idea is right or wrong. Fair or unfair. That is it. 

 

The only thing you can control is yourself, Iris, and the only thing you can hope for is being honest and fair.

 

You are these things. That others think you aren’t, you have no control over that.

 

Offense is never given; offense is always taken.

 

You can’t control how others take your comments. You can learn that certain truths need a more delicate touch but even if you are deft, you sometimes can’t win. Oh well.

 

Your only responsibility is to be fair and you do that in spades because it is your nature. For most others, being fair is far down the list of priorities. Lol!

 

Such is life.


Michael Ellenbogen
Posted: Monday, August 26, 2019 10:36 AM
Joined: 11/30/2011
Posts: 2409


I pose questions like this to get people to think. It also does not mean that one should not take medications. What it  does mean is one should do everything possible before turning to drugs. Drugs are good under the right circumstances. And I did not say anything about clueless in this thread. Would it make a difference if Teepa Snow said that? I can assure you she thinks the same way about Caregivers and that is why so much education is needed, so don’t shoot the messenger. I hear that from the top educators. 


ruthmendez
Posted: Monday, August 26, 2019 10:46 AM
Joined: 9/8/2017
Posts: 2073


Michael Ellenbogen wrote:

...Would it make a difference if Teepa Snow said that? I can assure you she thinks the same way about Caregivers and that is why so much education is needed, so don’t shoot the messenger. I hear that from the top educators. 

I hope she has never said that.  But, now that you have informed all of us, thx for the info.

Eric L
Posted: Monday, August 26, 2019 11:02 AM
Joined: 12/5/2014
Posts: 1078


I'm not as versed in Teepa Snow as some other people are, but I get the general sense that she is more concerned that PAID caregivers don't receive the training that they and their patients deserve. In many instances, families are paying hefty sums of money and they aren't receiving the level of care that they are paying for.

I'm going to assume that the "top educators" including Teepa Snow are probably incredibly sympathetic towards family caregivers. For the most part, family caregivers aren't getting paid. We aren't (usually) trained medical professionals. Most of the folks on these forums are doing their absolute best to take care of their LOs with dementia. Would it be nice if we had a bit more training? Of course! Most of us in this situation have learned by doing or by asking questions here (or both). The folks that reach out on these forums and ask questions or try to help others are extremely compassionate and are looking to provide the best possible care to their LOs.

If someone has to give their LO something to help them sleep so they can be better caregivers, so be it. If someone has to give their LO something because they blow up at you for asking them "Hi, Mom, how are you doing?", so be it. Imagine a caregiver going on no sleep and getting yelled at for exchanging pleasantries. That's a disaster waiting to happen.
ruthmendez
Posted: Monday, August 26, 2019 11:09 AM
Joined: 9/8/2017
Posts: 2073


Thank you Eric for clarifying that. I had strong doubt anyone would dare say or think such a thing, unless they have absolutely no respect for caregivers.  That's the impression I have from OP, and I hope he changes that.  If or when I become a PWD, I would hope my caregiver (I rather die before getting to that, but only God knows), I hope my caregiver is well cared for too, and even more so, than I.

MinutebyMinute
Posted: Monday, August 26, 2019 12:11 PM
Joined: 6/11/2019
Posts: 188


Eric L wrote:
 Imagine a caregiver going on no sleep and getting yelled at for exchanging pleasantries. That's a disaster waiting to happen.

Most of us don't have to imagine it, sadly. 

I'm one of those who balked initially at drugs for everything. And I still do ... to a point. After this year, if there is SOMETHING that can help her sleep and SOMETHING that can calm her to the point that she's not fearful or anxious or pacing and has an outside chance of actually ENJOYING something, as you would say, SO BE IT!!!!



Eric L
Posted: Monday, August 26, 2019 12:13 PM
Joined: 12/5/2014
Posts: 1078


In all honesty Ruth, I'm just kind of guessing. Teepa seems extremely compassionate. Does she maybe think that family caregivers could do a better job with more training? Probably. Does she hold them in contempt? Probably not.
D in law
Posted: Monday, August 26, 2019 12:53 PM
Joined: 4/24/2017
Posts: 564


From one of the links:

 But they also write, “drugs still have their place, especially for the management of acute situations where the safety of the person with dementia or family caregiver may be at risk.” For instance, antidepressants make sense for dementia patients with severe depression, and antipsychotic drugs should be used when patients have psychosis or aggression that could lead them to harm themselves or others. But these uses should be closely monitored and ended as soon as possible.

This is what we did with my MIL.  Sorry, according to these Dr's use of meds is sometimes warranted.

While I can agree "with time" a caregiver can figure out either a trigger for a certain behavior and/or learning techniques to gain some cooperation or understanding between PWD and caregiver.

Let's not be dreamers though, there are a whole bunch of people getting paid to care for our loved ones and most do not possess one shred of competence to deal with their patients/residents.  It's very rare to find a Teepa Snow working anywhere in a memory care unit.

What about the geriatric psych. Dr's and hospitals?  Are they of no use as well ?  I read here almost daily they have been helpful.