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troubling caregiver posts
Iris L.
Posted: Friday, December 16, 2016 1:47 PM
Joined: 12/15/2011
Posts: 18520


I frequently read posts from caregivers to the effect that their PWD "verbally abuses" them.  This verbal abuse might be repeating or something else that I would not put at the level of abuse.  This is disturbing to me because  it appears that the caregivers take personally what is merely some of the characteristics of dementia.  They will even say that they understand that the utterings are due to the dementia, but that it's hard for them not to take it personally.  


This is why I am so diligent about maintaining my independence.  I don't want to be in the presence of someone who takes personally some miscommunication that I might have due to illness.  I will need understanding and compassion, not castigation.  Actually, I have been in the presence of people like that, and it was unpleasant, and I'm so very glad that I'm not around them any more.  Been there, had that done to me, don't want it again!


Iris L.




Rightmind
Posted: Friday, December 16, 2016 2:16 PM
Joined: 5/19/2015
Posts: 11


I don't think anyone can really understand all of behaviors that we might have due to Dementia. Unless the person has cared for someone close to them or develop it themselves, there is no way to explain it that they can empathize with.  It is amazing how many people in my life who have questioned my diagnosis or outright told me that I am fine and they too forget things.  My grandmother and mom had Alzheimer's and dementia and I can remember my dad telling us adult children that when my mom was on the phone she was completely lucid and on task. He continued to try to convince us that she really was declining (we already believed it) because he felt that because she didn't always have trouble remembering or displaying typical dementia symptoms every time we were around her, we didn't think anything was wrong with her.  We told him we believed him but even he encountered skeptics about her diagnosis so he was pretty sensitive about it.  That is the only reason I know now that I can still have dementia and still have times that everything goes along swimmingly.  I have narrowed my "friends" down to avoid people who try to convince me and themselves that there is nothing wrong.  This is especially hard when you have a lot of cognitive reserves and can fudge a lot. Sometimes I wish there were dementia simulating goggles that would mimic how people with dementia think and feel so people would understand.
julielarson
Posted: Friday, December 16, 2016 4:30 PM
Joined: 9/30/2015
Posts: 1155


I know about cognitive reserve and I got questioned about using that term from my therapist the other day.. He said when I told him where I learned that term that it sounds like something I would learn from people who have dementia.. I do not know if I should laugh about it or get mad.. but I do know one thing it can be a real hiderence when it comes to having people thinking that you do not have "classic" dementia because something still comes easy to you.
Mimi S.
Posted: Friday, December 16, 2016 5:55 PM
Joined: 11/29/2011
Posts: 7027


So many folks, even some professionals, believes dementia suddenly appear full blown dementia with all its problems.  of course, it begins as little glitches and grows, sometimes fas and sometimes more slowly.

That is why, when we first realize something MIGHT be going on, se see if our PCP listens. We need testing, THEN.

When I looked at the heading of this post, I thought it was again someone upset by what a Caregiver posted on one of those sites.  It wasn't.  But for those who do get upset when caregivers are venting, just don't go there.


The_Sun_Still_Rises
Posted: Friday, December 16, 2016 6:11 PM
Joined: 7/24/2015
Posts: 3020


I completely hear you on that one Iris, which is why I have advocated that we write detailed care plan that educate whomever will be caring for us (as workers often change)...in order plan for the time when we can no longer communicate our wishes.

<3


Iris L.
Posted: Friday, December 16, 2016 10:18 PM
Joined: 12/15/2011
Posts: 18520


Perhaps I should have entitled this thread: "your caregiver will personalize what you do.  How do you want to prepare for that?"


The point I was trying to make is that some caregivers of advanced PWDs seem to focus on, for lack of a better word, their own being upset with the PWDs behaviors, instead of focusing on why the PWD is exhibiting a disturbing behavior.  They look at the PWD's behavior and say, "my mother is abusing me."  For example, when I look at myself, I don't see that I have disturbing behaviors.  But I have seen how others interpret my behavior as disturbing to them.  


Two examples:  1) Someone became upset that I responded too slowly for her while talking on the telephone. I needed more time to process what she said, and to formulate my response.   But I was taking too much time, and she became angry.  2) Another person also got upset because I might have appeared distant and distracted at a lunch we were having together.  It was in the early days of Exelon patch and I still had difficulty with my speech.  I know I answered slowly and took more time to respond in our conversation.  These people chose to cut off contact with me, rather than simply to become more patient and wait a few seconds.  They might have thought I was verbally abusive because I was not holding up my end of the conversation too well.  I don't know if I repeated myself.


A lot of posts on this board are about spouses or other family members becoming upset by PWDs' behaviors.  Why should this be so?  I have had people in my family with AD and they did not respond appropriately.  I did not get angry with them.  I was patient.  Of course, I was not a caregiver, but a visitor.  But I never made it seem like I was an aggrieved person.   


The reason I am questioning this now is because I see that even some experienced caregivers still personalize their PWD's disturbing behavior.  I wonder if it is worthwhile for the PWD to make an extensive care plan, if the caregiver still personalizes behavior.  Perhaps it is better to go to a facility, to be cared for and looked after by professionals with training in the care of the PWD.  Mimi is always suggesting to see how much they know about Naomi Feil and Teepa Snow.


I see many threads against facilities.  To me, I look forward to a facility. If I get to that point, I want to be around people who understand me, not people who will be impatient with me.


I know some PWDs have an idea of checking out, but I don't have that idea.  I want to live with dignity and care and compassion until my natural end.


This is more of a musing thread than a venting thread.  Posting helps me with my thoughts.


Iris L.




eaglemom
Posted: Saturday, December 17, 2016 8:39 AM
Joined: 3/7/2012
Posts: 2775


Iris, post away. It helps you with your thoughts therefore it helps you. Anything you can do to keep your mind functioning how it is now is a very good thing.

As I read the posts there have been caregivers whom do not understand the disease. They haven't invested time & energy in attending seminars, reading books, attending support groups, etc. Unless you invest time in having at least a basic understanding of the disease, you will be frustrated by your LO's behavior.  

I am completely the opposite. To me knowledge is power & understanding. Therefore I read, research, attend seminars, etc so that I can understand what my DH is going through.  I can't imagine not at least having a thumbnail's knowledge of the disease and being a caregiver. Although we all know it happens all of the time. For me I want to be the best caregiver I can be so that my DH can be the best he can be. Equally I realize not  everyone feels that way. My caregiving isn't a burden at all, it is my honor to be side by side and together we will tackle the disease.

So is you want to vent - please go right ahead. You know we are all help to support one another.

eagle


julielarson
Posted: Saturday, December 17, 2016 9:20 AM
Joined: 9/30/2015
Posts: 1155


Eagle you are a rare breed indeed!
Iris L.
Posted: Saturday, December 17, 2016 1:58 PM
Joined: 12/15/2011
Posts: 18520


You're right, Eaglemom, quite a lot of education is required for someone to become a good caregiver for a PWD.  For PWDs with natural caregivers, such as a spouse or an adult child, it might be possible for them to learn about dementia together.  But for people like me, who must rely on the kindness of strangers, finding a respectful care partner becomes a huge challenge.   In addition to being a Dementia Pioneer and learning how to take care of myself with Best Practices, now I must also think about educating a potential care partner.  What a load PWDs have to bear!


Iris L.


BlueSkies
Posted: Saturday, December 17, 2016 10:23 PM
Joined: 2/24/2016
Posts: 1096


I feel for you Iris.  Definitely an extra load on your shoulders.
Iris L.
Posted: Saturday, December 17, 2016 10:36 PM
Joined: 12/15/2011
Posts: 18520


Thanks, Blue Skies. 


Iris L.


The_Sun_Still_Rises
Posted: Saturday, December 17, 2016 10:56 PM
Joined: 7/24/2015
Posts: 3020


I am no sure it so hard...but you have take in consideration that no ALL people are naturally adept at putting another's needs first, or have empathy, or be compassionate.  Most people are selfish, and think only of themselves...and this goes for spouses and children as well. 

You angst of how take a person who lacks empathy and teach them....reminds me of teaching pigs fly, sort of only frustrate you both. 

And you no the only one here that have rely on outside sources...I have been leading the way on that for some time now.  Indeed, I have wrote much on working with workers...and on accepting their limitations. 

Unless you can afford pay out of pocket, however, you never going get round the clock care...so there a point where we can no longer be cared for at home...and then choices have be made. 

For me, who 7 years before qualify memory care, that means I will choose an early exit.  I feel it a prudent and responsible decision. 

There nothing glorious about workers...most of them take the job because they know they can get away with not doing much work, and take the job because it easier than McDonalds. They can be nice and pleasant, but something about them changing you diaper transcends all that.  And as soon as you think you found a good one, and they say that going be with you for life...they get offered a better job, and you back the dice roll. 

Again, that is why I wrote a VERY detailed Care Plan...it leave no thing question.  If I get combative - you get rid of the worker - period. 

Because I have NO intention whatsoever of ending up like those people over there...indeed, I have taken purposeful steps so I will no.  I do no see it as being a pioneer so much, as being prudent. 

My recommend, is you use you upset write you care plan...it good fuel that work. 

<3


SunnyBeBe
Posted: Sunday, December 25, 2016 12:58 PM
Joined: 10/9/2014
Posts: 1186


I too find it perplexing why a family member, often a caretaker, seems so sensitive about what a PWD might say to them.  Especially, if they are well informed, have read extensively about the condition, have read other people's stories, and KNOW why they are getting the comments or behavior from their LO.   Why?

 It seems they are quick to label it as manipulative or hateful.  Really?  No matter how many times they receive an explanation and REMINDER of what they are seeing, they can't seem to shake the feeling of being persecuted or insulted.  It's so immature of them, imo. Why can't it sink in? 

Sorry to post here. I am not a person with EOD, but, I am a caretaker for someone who is EO, so, I come to this particular forum to get the unique perspective that can be found here.  I just had to jump in here, because it's been a sore spot for me since my LO got  VD.  Yes, I was questioning, blaming and saying all kinds of things, BEFORE she was diagnosed, however, I then discovered why she was behaving that way.  Once I knew better, I DID better, which included getting a proper perspective and adjusting my mind's eye to the real issue, which is NOT MY personal sensitivities. 


julielarson
Posted: Sunday, December 25, 2016 1:15 PM
Joined: 9/30/2015
Posts: 1155


Do not think for one minute you are not welcome here.. You are.. You are one of the rare ones I have seen that understands the behaviors of the PWD and are a person that I have come to learn from on here.. Please make yourself at home and post as much as you want.. That is my take on it!
Mimi S.
Posted: Sunday, December 25, 2016 1:21 PM
Joined: 11/29/2011
Posts: 7027


Julie,

 

I have met many are Parters, especially at the DC Forum, every spring in DC where the partner does understand.

 

I also had a small group in my own area where I would say te majority nderstood.

 

That berng said, we still have a lot of educatig to do.  Those of s who ca are happy to.

 

Enjoy your day/
julielarson
Posted: Sunday, December 25, 2016 1:31 PM
Joined: 9/30/2015
Posts: 1155


Mimi thank you for your input. I would just like to say that maybe it is that it is so glaring when I see those who do not understand that it makes it seem like people just do not understand for the most part.. You enjoy your day too.. We are going over to my dad's house in a while..
Michael Ellenbogen
Posted: Sunday, December 25, 2016 2:05 PM
Joined: 11/30/2011
Posts: 4463


People are fearful because they do not understand and that is their way to react. I think we all need to over look those negative issues and just speak how we feel. Hopefully by the time it’s all over our peers will jumb in to guide us. What I real hate is when people don’t feel comfortable to say what they really think. When that day happens we all lose. We all need to become a bit less sensitive and not take it all personally. Including myself.

 


julielarson
Posted: Sunday, December 25, 2016 2:10 PM
Joined: 9/30/2015
Posts: 1155


I for the last several weeks have stayed over here for the most part.. I do not need to see what is being said over there..
alz+
Posted: Sunday, December 25, 2016 8:02 PM
Joined: 9/12/2013
Posts: 3608


I post on a political group site and a woman who said she was head nurse on a dementia ward said she thought a political person had Alzheimer's.

Other people agreed - so many claimed to have grandmas and dads and cousins and friends with ALz and yes this person was showing the same symptoms their LOs had.

I asked what symptoms - they said rude, crude, angry, make no sense, yelling etc.  So I asked the head nurse what she saw in dementia patients that was troubling. She said "these patients disrespected my staff, they were combative, rude, and some fought the staff." she added swearing and crying and disoriented.

I wrote back, "Well, surely the staff new from your counseling them not to take any of that personally and maybe the people were not mean and aggressive but frightened or fearful"

she said, "Yes. Paranoid too."

then out of nowhere all these comments came about how awful it was with Uncle Jim or grandma Josie or their mother turned into an evil pirate...

no way to know if this person was actually a head nurse but it made me very queasy. I am already queasy from a cold/flu.

crazy how our symptoms are seen that way by so many, they expect it to be bad and gol darn it it sure as heck was.

I don't feel well enough to argue my view to them. Keeper is doing better with me. He is helping me with the flu and making it easy to suffer by filling bathtub and bringing me food and tea and stuff.

I wish there was a book on how bad it was before I learned how to work with dementia and then how it became easy when they began to treat the person as a person having a hard time, not being malicious.

there could be like 40 stories of people who went from hate and disgust to we can do this and have some fun. Maybe that would change some opinions and methods of caring for us.   ????




Iris L.
Posted: Sunday, December 25, 2016 9:39 PM
Joined: 12/15/2011
Posts: 18520


We have to do it for ourselves, Alz+.  That's why I call us Dementia Pioneers.  We have to learn about our new selves and learn to fulfill our own needs.  Personally, I am not expecting much help from a caregiver.


Iris L.


Fai
Posted: Sunday, December 25, 2016 9:45 PM
Joined: 11/17/2016
Posts: 124


Just wanted to thank all of you for helping this caregiver understand and appreciate the feelings of my DH!  By your posts, you are helping to educate all of us.
Wishing all of you the best of the holiday season.

SunnyBeBe
Posted: Monday, December 26, 2016 12:45 PM
Joined: 10/9/2014
Posts: 1186


What do you think is acceptable to provide to people who are dealing with loved ones, friends, associates, etc. who are having some issues with this condition?  I mean, if I printed out a few links and texted them, would that be rude? Or what if I printed out a couple of articles and mailed it to them?  Is that considered okay or would I be overstepping?  I'm a pretty blunt person, but, am known as being kind and easy going too.  More bees with honey approach appeals to me, but, still......I think some may take offense.  But,.....better they take offense with me and get informed, than remain without the knowledge. Right?
julielarson
Posted: Monday, December 26, 2016 1:58 PM
Joined: 9/30/2015
Posts: 1155


Sunnybebe it depends on your relation to the people you are trying to educate.. I would think if they are family it would be appropriate to send them information.. I hope you had a wonderful Christmas.
Michael Ellenbogen
Posted: Tuesday, December 27, 2016 9:05 AM
Joined: 11/30/2011
Posts: 4463


 I am a firm believer in being blunt person. I have learned that when you bet around the bush many people do not get it. So I have taken the approach to insure they do. Life it to short to always tip toe around things. But it does matter on how you know the person. 

 

 


obrien4j
Posted: Tuesday, December 27, 2016 9:55 AM
Joined: 11/18/2016
Posts: 451


It is both a blessing and a curse , in the same breathe. I don't know how it's possible, but it is and I know you know that. There are times that I am invincible  and others when I'm invisible. Lucid moments when I'm happy I'm not losing my mind and crazy moments when I know I am. Moments when I "think" I got my $&#%  together only to awaken to yet another soiled diaper. Pardon the pun! Trying to prove to others that I am capable of doing my job, yet hearing the words dementia come from a doctors mouth.

Yeah, this definitely sucks as I prepare for my doctors appointment. Tests are in, can't take it back now.Never been more scared in my life.


julielarson
Posted: Tuesday, December 27, 2016 10:03 AM
Joined: 9/30/2015
Posts: 1155


Good luck honey,. You are in my thoughts today!
The_Sun_Still_Rises
Posted: Tuesday, December 27, 2016 1:52 PM
Joined: 7/24/2015
Posts: 3020


SunnyBeBe wrote:
What do you think is acceptable to provide to people who are dealing with loved ones, friends, associates, etc. who are having some issues with this condition?  I mean, if I printed out a few links and texted them, would that be rude? Or what if I printed out a couple of articles and mailed it to them?  Is that considered okay or would I be overstepping?  I'm a pretty blunt person, but, am known as being kind and easy going too.  More bees with honey approach appeals to me, but, still......I think some may take offense.  But,.....better they take offense with me and get informed, than remain without the knowledge. Right?

---------------------------

Paraphrasing Miss Manners from the daily newspaper....it always over stepping you bounds offer unsolicited advice. 

However, if a person mentions directly you that their LO have Alz...you are perfectly in you right say, omgosh, have you heard of Teepa Snow?!  I think you will real love her videos. 

I also think it depend you audience.  I mean, at work, or acquaintances that you need LIKE you...make sure what little you offer is HIGH value and of Extreme Good Quality (like Teepa Snow).  That way, IF they look it up...they will associate you with something useful and good. 

I would make the general assumption that anyone who get dx'd or have a direct person they know dx'd - have ALREADY looked it up and read ALL the GENERAL information.  Passing on general information generally serve only piss people off....as it useless...and does no tell them anything new.

Likewise, even more offensive for many, if no most people, is advice on "cures" or "Best Practices"...because it gives the message (whether intended or no) if you only do this, you would no have it - which is no true, and a real put off most circles. 

In autism circles, they pass around funny graphics making fun of people who don't have kids giving parenting advice parents kids autism.  Most autism groups serverely shut down talks about vaccines cause autism and autism "cures" as quackery.  MOST autism parents are highly offended (realize they often over worked, under sleep, mentally, physically exhausted) when people who do not have direct personal experience working with someone with autism giving them ANY advice - as it simply does not apply. 

I remember, I used make my daughter read the monthly or quarterly bits in the parenting books....so she'd know what expect the baby.  By 6-9months old - the books did no fit the baby.  By 13 months old...the books were entirely useless other than make us feel like failures...as our baby no do what the others do.  What work get a normal kid clean their room, have no bearing on what an autistic child need clean their room - who often need space meticously color code and line up their toys at extacting distances. 

Most people...use up extreme amounts of patience and good will on unsolicited advice. 

but what it never do, I have found, is cause the receiver go..."wow, they were thinking of me....even if it useless, thanks." Apparently, the human species have no evolved that far (yet). 

That said...you might consider, gifting the book, Dancing With Dementia, by Christine Bryden...a person with dementia.  That way, it a double gift, a support of a person dementia....and a sharing information.  Maybe say, I heard this lady talk and I was astounded at her insight (you can watch her youtube videos), thought you might likewise enjoy. 

You have be real open-ended.  Let them get what they get....or not. 

The very best I think one can do...if you want be helpful...is simply offer help.  Hey, I am so sorry hear about the dx...you are likely in for a long road ahead, if there anything I can do help (as my so and so had it also), please don't hesitate let me know.  Even if all you need is someone listen and care...sometimes it takes someone who's been there truly understand.

<3

PS...if you bold like me...I personally LOVE give my sisters unsolicited advice....they hate me for it (they hate me anyways)...but I find it personally funny that they hate me for care them, it probably my spiritual sick sense humor...but whatever, it helps me make a bad situation tolerable. 



BillBRNC
Posted: Wednesday, December 28, 2016 11:50 AM
Joined: 12/2/2015
Posts: 1018


I find most of the of the posts on these boards to be troubling, whether caregiver or those of us with disease. One reason all is troubling is because everything about these diseases and taking care of them is troubling. Troubling? Hell, it sucks to high heaven. There is no way my wife or anyone in my family or anyone without disease will ever have any idea what my life has been like for the past couple of years, now, or at any point in the future. By the same thinking, I'll never really understand what the caregivers and spouses are going through. There is no happy ending, there is no high road, and there is no real hope other than getting it over with, so everyone can move on to wherever. I love my wife, and she loves me. But love is just a word. Living through this hell on earth isn't just words. I don't know what I'm trying to say and don't know what to do. I keep telling myself to make the best of each day, but then I can't even remember what I did yesterday to make the best of it. The inside of my head and most of my body seems like it belongs to someone else, or something else. Do I try to make the best of each day? Well yes I do. Do I make the best of each day? I seriously doubt it, but I do the best I can do, so I guess that is the best. I hate reading the pathetic things the caregivers say about us, but then they are doing just what I'm doing...trying to make the best of each day, or at least survive it. I try not to judge people, because gosh knows I would be hard pressed to defend many of the things I've said and done or not done in my life. One of the things I like most about my dog Doc is the fact that he never says a word, but he is always right there when I need him. I haven't had a shower is a few days, so I guess I'll go take one now. I just hope I can do everything just once for a change.
Iris L.
Posted: Wednesday, December 28, 2016 12:02 PM
Joined: 12/15/2011
Posts: 18520


I have learned not to try to elicit memories from the past.  I can't even remember what I wrote after I make a post, or even the topic of the post.  I try to live in the present.  Too much of the past is futile for me.


Iris L.


julielarson
Posted: Wednesday, December 28, 2016 12:12 PM
Joined: 9/30/2015
Posts: 1155


Me too Iris!
SunnyBeBe
Posted: Thursday, December 29, 2016 10:58 AM
Joined: 10/9/2014
Posts: 1186


I do appreciate all the tips and suggestions. I will take them to heart.  

Please know that the insight you provide here is invaluable. 


alz+
Posted: Thursday, December 29, 2016 9:57 PM
Joined: 9/12/2013
Posts: 3608


one way to convey information so it is taken in, is through storytelling.

it is not directed at the person listening so the defenses are lower.

movies do that, songs, books, poetry and just sharing a story.

There was an episode on this American Life NPR about a woman caring for her mother with dementia. The 2 battle eachother. Then the woman's husband comes to live with them and he does Improv for a living, teaches it and performs, and he does this with the mother.

The woman tells the story of how her Mom is suddenly Miss Congeniality with him and how she grinds her teeth when she hears them laughing. Then she decodes what he does - and she realizes he never says NO to her Mom.

Like the Teepa Snow videos, you watch her aggravate someone, and then not aggravate.

still think for me lowering my expectations is being benevolent to myself. When Iris reminds us what it means to be a dementia pioneer, to learn how to work with our own difficulties, I still resist a little bit. I want someone else to take care of me better than I have have in my life! I want them to have 90% perfect instincts and be sunny and like me, all the time, a lot. Not going to happen.

I forgot what this was originally about! ha!  spiritual teachers don't usually say "do this, think this" - they give parables so one's own understanding opens. For me witnessing a nurse in a hospice respond with kindness to a patient throwing his family out of his room and how everyone  went from yelling and crying to stepping outside, coming back quiet, and shortly after laughing and teasing...because the nurse changed the energy in the room. will always remember that.

*********

Michael is right about bluntness too. When one of my late friends was seeing things and talking to her dead parents her brother wanted her to stop and it started getting tense. I finally caught his eye and said "what if we just can't see and hear what she does?"

This question seemed to calm the situation. 

another question: what would you want if you were in that situation?

That so many people, including most all of us, dread our future and fear the worst, based on what the common understanding is of dementia (deluded, thoughtless, mindless, crazy, etc) makes it harder to explain how to help us live a good life.

Maybe that could be said: "It's hard to figure out how to give them a good life since we don't really know what they need." blunt and to the point.

love you all

 



Iris L.
Posted: Friday, December 30, 2016 12:13 AM
Joined: 12/15/2011
Posts: 18520


You are so insightful, Alz+!


  It's hard enough for us to figure out what we need.  We need to spend some time on our own needs, and how to get these needs met.  That's part of the definition of good self-esteem--getting our needs met.  I think a lot of us don't think we deserve to have good things, or to have things go our way.  That's another change in perspective for us.  If we don't do good things for ourselves now, when will we do them?


Iris L.