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preventing complaints about care partners
Iris L.
Posted: Saturday, January 23, 2016 2:36 AM
Joined: 12/15/2011
Posts: 18509


One of our emeritus members, SnowyLynne, gave us the excellent advice to get our affairs in order, and to go live our lives.  I always keep her advice in mind.  I feel like more of our members need to hear and to follow this advice. 

 

It seems that PWDs get deflected from living fulfilling lives because of family dynamics that get in the way.   PWDs have issues with their care partners.  


What can we do ?  Is there anything that can be done? 

 

I think we should be managing our own lives and making plans for our own care, instead of complaining about how our families treat us.  They don't know what to do.  They are not thinking about this 24/7 like we are.  They are not reading and researching and watching videos and reading message boards.  It is not reasonable to expect them to know what to do for us.

 

I spent (wasted) time complaining about people in my life.  They were not family, but close friends.  Where did it get me?  They are no longer part of my life.  They did not learn anything.  There was no  meeting of the minds.  I am still dealing with my care on my own.  


What did I learn?

 

What I learned, is that I must teach my future care partner, whomever that would be, how I want to be treated.   I have no expectation of care.  I will have to make it not so difficult for the care partner.  I know I have family members who will help me, but no one will accept if I make their life miserable by complaining. 


I am researching caregiving myself, and I plan to develop personalized written care plans of exactly what I want for myself.   Then, when the time comes, it should be relatively easy for the care partner to come alongside me and help me.  At least, the care partner won't feel like he's been thrown into the deep end of the pool.  And I won't complain that he is not doing things the way I like.


This is part of my vision of being a Dementia Pioneer.  I will pioneer my own care.


Iris L

 


The_Sun_Still_Rises
Posted: Saturday, January 23, 2016 6:27 AM
Joined: 7/24/2015
Posts: 3020


 

Iris, I LOVE that you think this way...much way I think too.  I love that you keep sharing this, because you evoke call this out me too...so I have no chance ever forget to keep do all can help self. You are the voice this me.

Women are funny creatures...sometimes we complain others outside our situation, just to be validated.  Sometimes that validation helps us rally our inner strength.  I was never that much, I like to solve problems.  When something no work me, when something hard me...I struggle to find solve for.  It took me long time when young to learn to sometime just validate, no try solve others.  Now that disease me...when I complain, it is a plea asking for help solve.  I lose part of me that used to know I need explain this others...need others just know that.  This why I like that you always talk bout this subject...because points me again to try solve things.

I agree, I think we all need to sit down think very long hard what we want for our care.  I would stress to please try to do as early in disease as can and update along way as go.  I got dx'd so late in game, it has been endlessly hard this do me...taken months of life to try get done and real beyond my skill to do.  But have to do any way. 

Part of that is learning what goes on in care...even the things we do no want self.  The best most insightful way I find to do that is this forum, caregiver and spouse sections.  You read many situate and how deal with...you get to know what caregivers find hard.  And as best you can, because very hard with disease, you weigh that against what you know bout you disease. 

It takes also a huge level of self aware be. 

Early on, when you no see too many effcts disease yet, it is easy to just think what be easy caregivers.  But true real when this gets worse, is that it is a complicated dance between the two.  I want very much try write this as I now need more care than ever thought expect I would need...but no think will get out well this. 

it becomes very hard to think out subjects of care on own as disease gets worse.  It helps when you see things forum...like other day pain...that you use that to write HOW you want your pain managed when you can no say know in pain.  May keep running list of topics...to help cue you what you feel these things. 

Each progression, if you pay tenntion and watch careful...you get clues what come next. 

I find help too also do personal work along this way.  I think if this hard to deal with, want deny this happ you...that when changes come you more like to turn blind eye, deny to self happ you...and no see how bad real is.  It helps to work with someone to keep deal work process emotions deal with this dx you...so as each progress happ, you can more readily get grip of ok, we here now...and this I think come next...what will I need when next...and work on that now...when more able get it done. 

I find the progress of tell peop what happ me went this way. I used to be able to say what lost, and just what needed to help me.  Then I could say what lost, and have vague idea what help me...but real need someone else talk me about flesh out what that help look like.  Then I could no say what lost...only what can no do, no why can no do...making hard to figure what could help.  Need then someone to come in figure ways that work me before...and figure way I think...and think me what next...like back up brain.  Like be my brain for me.  Now can see what coming, no clu what help...and no much help peop to figure what may help.  Like they can say, will this work...and I have no idea.  I now just have to try. 

What coming next me...and big wake up call for all stage just before this...is I real need peop work me to tell me what to do...eat now, take med now, go bath now...they no real do this me yet, so many thing no happ because I can no do for self no more.  I have no clue what could help me stay do these self.  I try make rules self to just do at certain times.  It can take months brain sort out plan for this...by time get in place, worse gain...need some thing else.

What come for me, because things so hard now...takes tremendous focus, all my effort strength just do one thing...like put shirt on...how make arms go, no know...is next brain bad...peop need do this for me.  I think I will be try so hard focus what do...will no be able to hold in mind who do this with me...so when struggle and can no do, in that tiny sec fear...and then see stranger try help me...I think I be panic all time.  Too many thing happ, and brain so way too slow to process...I think no be fun me.  But real mess age in that is that what I thought to tell people, educate my workers, just month two ago...no longer real apply...there is new things they need know now...and this what I hope to write.  Because no would have guessed this before, what like to live this...or what be need others...I think there was no way to know before, because I was no there yet.  When get there see know learn new what is like...and no like what guessed. 

And it is very hard keep perspective...of my images of where am in disease, and what actually experience...these two diff worlds me...and can no merge them. 

Also funny when get here...if alone...is to self, I perceive inside good thinking good brain...my hard things do, I can still find way to do...so to me seems like yea can do.  But I can see now in face other, in word other say me...that I am further than feels like inside, alone me.  No say well.  Like alone me thoughts, can still think big good thoughts...but then try to put to words, and clear can no put to words well.  Alone me, think I am do pretty well...reflect me, I am no do well at all.  Word loss shock wake call...see clear now where be in scale of progress. Thought prepared, but true real no prepare at all...for this be me real.  Always you think far way.

At some point, you operate much time instinct hard wire...in that state, you can no help care peop help you...the bridge too long can no see other side.  You just full all you be confused try walk on water look floor...peop talk you, make water look worse, can no walk on...in that state you need other to know what to do...you can no help them know what to do, how help...you too busy try make leg walk water floor. No space for more thought than that.  Can still reflect on this happ...come thoughts...can tell thoughts next see peop...and in that way help.  But in moment, can no help them.

And peop, even good peop, get scared...feel too small inside help you...and awkward, and move funny wrong. It is so fully consuming mind body exhausting try to navigate that.  And they feel become your feel.  They awkward make you more awkward. They fear become you fear.  It can get out control so fast easy. 

I find now, how best help them...is when they suggest something to just be open and try see.  I think this could lead me wrong bad place...but I have no choice but that. 

Any way...so you see this kind plan get harder as go long this disease.  Do as much as can as early as can...then only have update to do.  Update much easier than new create.

Hope helps. Sorry bad words.

 

 


llee08032
Posted: Saturday, January 23, 2016 7:22 AM
Joined: 5/20/2014
Posts: 4408


Iris,

You mentioned "he" are you thinking you may want a male CG/CP? I bring it up as it is something I never gave thought to before and the gender of CG/CP may be important to some PWD providing they have a choice. 




Unforgiven
Posted: Saturday, January 23, 2016 12:16 PM
Joined: 1/28/2013
Posts: 2659


Iris, I'm contemplating making a video from my younger self to my older self reminding the older me what I might have forgotten about my own experience as a caregiver.  There will be another video to me son and grandsons telling them how much I love them and asking them to forgive me for any personality changes that might make it look otherwise.  I've set up a trust to protect me and them from my potential self.  I'm creating my own work-arounds for cognitive deficits, because my 'RAM' is already running low, and it is painful in a general physical/mental way that helps me understand your challenges a lot better.

Everyone needs advanced directives about care once we cannot do it ourselves.  When it comes to family dynamics, or the challenges of having no family, we can plan for the best and hope it turns out well.  Sometimes it's pure luck who ends up caring for you and how good they are at it.

 


Iris L.
Posted: Saturday, January 23, 2016 2:16 PM
Joined: 12/15/2011
Posts: 18509


Ilee, the "he" is my brother.  He is my next of kin.  We get along very well, and know each other.  I trust him to do the right thing by me.  He was the primary caregiver for our Mom, so he has had that experience.  That is, if he chooses to accept.  But, I don't want to put an unnecessary burden on him.


Unforgiven, a video is a great idea.  But I am video-challenged.  I can take appropriate photographs.


Sun, what you describe sounds like the need for a care partner who will work with you to devise strategies to get the care you need for the specific tasks you have trouble with.  The workers/aides may perform the actual work, but the care partner would be the supervisor of the workers.  The care partner will have to learn and figure out solutions.  It's not a one-side-only thing.  The PWD and care partner will have to work together.  


The point I am making, is that I cannot expect the care partner to know everything he or she needs to know when they become involved.  It is a learning process.  But we patients are beginning the learning process long before they do.


I read many posts that say, "my care partner is not treating me right."  They won't, because the care partners are guessing at what they should be doing.  It is up to us to show and tell them what to do and how we want it done.  Otherwise, they will continue to guess, and conflict and complaints will ensue.


I am learning too, because the tasks I do, I do automatically now.  It will be strange for me to write down what I do and how I like for things to be done.  But there are commonalities to caregiving, that will be a start.  For example, as far as dressing goes, there are modified clothing for the disabled.  That might become necessary.  I will write where this clothing can be found.


It is necessary to begin early.  We don't know when the information will become needed.


Iris L.



alz+
Posted: Saturday, January 23, 2016 4:39 PM
Joined: 9/12/2013
Posts: 3608


 I am one of those who complain here yet am doing the best I can to have a reasonably good life. Living with someone watching my every move 24 hours a day, all week, all month, all year and complaining about it - it's creepy.

 There is a point when I will have zero control and people will be decent to me or not. I did as much as I can for myself. I hope my "no food no water + hospice" is activated.

 when caring for my Dad I had no internet, no books, no videos and yet it went really good. I don't expect perfection, I just want to avoid hostile or negligent people. Nothing is certain. Don't know I will live long enough to endure the part most people fear.

I admire everyone who is setting up directions and requests for future care.

All those examples will help so many other people. Pioneers.

 love you all and respect your courage.


jfkoc
Posted: Saturday, January 23, 2016 4:51 PM
Joined: 12/4/2011
Posts: 21242


I hope you will all list these forums as a resource. We at least know where the modified clothes are...lol

edited: an please list the good online sights and the great books.


Iris L.
Posted: Sunday, January 24, 2016 12:30 AM
Joined: 12/15/2011
Posts: 18509


Alz+, I have you to thank for motivating me to include more than just the basics of caregiving.  I want to include smiles, animals, massages, good vibes and the like in my plans. 

 

My point was not to put down those who complain, but to illuminate.  The family members are wandering around in the dark, so to speak.  They don't know what they are doing!  They make caregiving up as they go along.  We have to show them how we want to be treated.  But first, we have to know ourselves.


You like to swim, be in the outdoors, and be with your dog and other animals.  Actually, I like that too.  You need quiet, and not to be in a moving vehicle, or at least in the back seat where the motion will not disturb you.  I don't mind the car, in fact, I like driving and being driven.  I don't mind sounds, at this time.  I would not mind going to a concert in the park, or to a show.  I went to the symphony last night at a community college.  


The cgs are doing the best they can do with their limited knowledge.  It's a shame.  But this is how it is.  We have to do our own teaching and informing.  We have to be up to the challenge.  This is what I think.


Alz+, I will be drawing on a lot of what you have contributed, especially in your tales about your dad and how he communicated with his eyes.


Iris L.


The_Sun_Still_Rises
Posted: Sunday, January 24, 2016 4:40 AM
Joined: 7/24/2015
Posts: 3020


Iris, I envy you in you bliss unknowing what be like down road.  You have much more strength ability than me to tolerate "come what may" you care...aft all you year here.  But I concern you no real get what like have this when it worse...or no true realize you will still be very aware what be happ you.  You assume those peop they care for no aware...just because they no can say, I disagree strong that. 

I stage 6, JUST LIKE many they care for...same probs they face their LO, and I fully here aware...and no be real able say, just like they no be real able say.  That do no mean do no have thought feel opinion about what care be like. 

I concern, because I never hear in you plan...what you do when you need help bath, wipe butt...and you no recog pers try help you...and you scare, and no be able say...how THEN would you like them care you?  What way you want them approach you then?

I also concern because you seem to think we able to do more than we can as we get out here in progress.  Like you may think we be magical able to calm down when stranger try take pants off.  Or like we be magical able understand we peop go too fast. That is just no way it works. 

I try to tell you best most kind support way I can, I think you need be more realis about what really like when you like me...when you like Alz+...because IF you progress, it be come. 

It would be nice if we were blissful unaware...but that unfort just no so.  That is the hard truth of this disease for us.

Best way to help care peop, I think, educate them...write detail educate them plan what you want if when for when you can no more speak it...let it speak you.

I know what Alz+ say may sound like complain you...but that no what I hear.  I hear see her communication diff...I no trip her words...I see what she point to try say. I real see her plead ask how please tell me how I do this. 

That is the disconn between two worlds.  I call caregiver disease.  Like how all peop now trip on my words, and stopped hear what I saying.  That be way CG do you when you there.  It represents a HUGE barrier to care for us.

And I no know how you ok many cares way be now.  When come to me, and my beloved gentle body...I want BEST CARE POSS...I want highest best can be achieve.  An I am ok happ to work hard for get. Because I have realis picture what come for me...I know how will be me when get worse...I see that write wall clear as day.  I no think Alzheimer's has to always go way be done now...I think Alzheimer's can be done well...with dignity and grace. This what my workers say me, they so ispire of how much dig and grace I face this me.

One way I ensure future I want...good care...is by inspire my workers...set stage them how this going be...imbue so strong this...that this only way they can think be me.  <---I no have good words that. 

Like, I no want peop grieve me while here.  I know, be realis, that if they sad round me...it will make me be sad depress too.  This is NO how I want spend my last days.  So I need strong inspire them, this can be happ time.  I create situate that this be what is.  I say many time, treat me like I lost both legs...give me all rehab can, give me ever fight chance can, and then celebrate all I can do.  And then I go on to celebrate all I can still do.  I stand live in space of all can still do.  Some stand live in space of what no can do anymore...that set doff stage for peop care them.  I make be so happ round me, that there no space any one be sad round me.  Like how you all trip my words...yeah, pain reminder I be progress, wah wah...lets move on now...I can still talk, I can still say what want say...let be live in that, celebrate I this far long an STILL talk say what be happ.  I no time room for pity or peop sad me, and I no want make time space room peop sad me.  That be one way how I ensure care I want when can no say what want. 

What happ, unexpect...is by try embue light to situate...others have come round...attract that light...and end up help me stay there.  I no even think it be do purp...it just be what arise natural.  THAT is how I work ensure my care. 

I don't write much here all that.  Just no seem space here that.  I write an say that other venues more than here.  More say to peop in life.  They seem get most out it. Like my Blessings thread...here seemed no right place that...but when said same things  doctor, she hug me...real aww momen connect her me. 

Eith way, be try gentle say...I think you may be help be more realis all this what come.  If no for you, for us.  <3


alz+
Posted: Sunday, January 24, 2016 5:55 AM
Joined: 9/12/2013
Posts: 3608


SUN -

The BOOTY CARE is one of my most reviled future needs. ha!

When I was first diagnosed I made some online friends through cannabis sites when I was searching for how and what to know about medical marijuana and ALZ.

The first friend just broke my heart! we corresponded through emails and she told me how she was crippled with suffering - not only did she have a colostomy bag she did not want anyone else touching or cleaning, but her husband had sold her horses and sat watching tv drinking beer all day then passed out at night.

She had plans to kill herself from a broken heart and fear of having someone else touching her colostomy bag. I think we all dread having to need someone to keep us clean after pooping because if we don't do it right even one time we can end up with a UTI, and then the antibiotics, and then problems from the antibiotics and on and on.

(That online friend did get help from cannabis and her husband began to help her)

we may discuss many things but rarely anyone brings up the dread of incontinence or our aversion to having someone else clean our butts.

 People probably research Right To Die methods because of this dread. 

Thanks for mentioning that SUN. Glad for all the people up at 3am thinking and posting.


Iris L.
Posted: Sunday, January 24, 2016 1:51 PM
Joined: 12/15/2011
Posts: 18509


The_Sun_Still_Rises wrote:

Iris, I envy you in you bliss unknowing what be like down road.  You have much more strength ability than me to tolerate "come what may" you care...aft all you year here.  But I concern you no real get what like have this when it worse...or no true realize you will still be very aware what be happ you.  

 

Wow, so many great points to discuss.  This is what I hoped for.  That we patients can discuss our lives and not just complain.  Complaining has its place.  I complained a lot.  But I got to where I realized that I have to do more than complain.


I do know what it is like to be seriously ill and disabled.  I know this from my own life, and from the lives of my family members and friends who have passed away.  At one time in the early years of my illness, I became bedbound.  My mother came out to care for me.  I have several family members who died of Alzheimer's disease or after being paralyzed by stroke.  

I attend a support group with patients with MS and other neurologic illnesses.  Several of them live in nursing homes and require total care, including feeding and butt wiping.

I was a physician.  I have cared for patients who required total care, most of them in the pediatric age range, but during my medical training, I worked with adults who required total care.


I know.  I am not at total care at this time.  I want to be prepared for when that time comes.  In the meantime, I want to handle the challenges that I have right now.  I do have challenges.  I sometimes think I am the only one with my challenges, but then I read from the caregiver boards that there are others like me.  I don't read this on the YOAD board.


I realize that complaining can be a cry for help, when I have time to analyze the complaint.  One thing I have learned about myself, is that I become easily distracted.  I can think of only one thought at a time, usually.  When I read a complaining post, that is all I think about.  It may take me hours later, or even days later, before I can read between the lines and figure out what the complaint is really about.  

All of us are different.  You, Sun, like to write long posts.  I don't read long posts usually.  I may read the first one or two paragraphs, then stop.  We have to work with what we have and who we are.


Iris L.



Iris L.
Posted: Sunday, January 24, 2016 2:01 PM
Joined: 12/15/2011
Posts: 18509


The_Sun_Still_Rises wrote:

Best way to help care peop, I think, educate them...write detail educate them plan what you want if when for when you can no more speak it...let it speak you.


I believe this is what I said in my original post.  I plan to educate my future care partner--not wait for him to learn on his own.


The wisest caregivers on these boards, who have been caregivers for many years, admit that they knew nothing when they began caregiving.  They did not even realize that they were caregiving.  They had a steep learning curve.  But they did learn, because they wanted to.


Some of the family members we have are not ready to learn now.  What does it gain us by complaining that they are not ready?  We cannot change another person.  We can only change ourselves.  That is what I am doing, in preparing for my potential future.


Iris L.



Iris L.
Posted: Sunday, January 24, 2016 2:08 PM
Joined: 12/15/2011
Posts: 18509


alz+ wrote:

we may discuss many things but rarely anyone brings up the dread of incontinence or our aversion to having someone else clean our butts.

 

 

Let's bring it up.  

The advantage of a board like ours, in which members can be anonymous, is that we can discuss intimate topics with less fear, anxiety or embarrassment.  The caregiver spouses discuss many sensitive topics.  They are strengthened.  I hope we can be strengthened, too.

Iris L.

The_Sun_Still_Rises
Posted: Sunday, January 24, 2016 5:52 PM
Joined: 7/24/2015
Posts: 3020


Iris L. wrote:
Wow, so many great points to discuss.  This is what I hoped for.  That we patients can discuss our lives and not just complain.  Complaining has its place.  I complained a lot.  But I got to where I realized that I have to do more than complain.

I know.  I am not at total care at this time.  I want to be prepared for when that time comes.  In the meantime, I want to handle the challenges that I have right now.  I do have challenges.  I sometimes think I am the only one with my challenges, but then I read from the caregiver boards that there are others like me.  I don't read this on the YOAD board.

I realize that complaining can be a cry for help, when I have time to analyze the complaint.  One thing I have learned about myself, is that I become easily distracted.  I can think of only one thought at a time, usually.  When I read a complaining post, that is all I think about.  It may take me hours later, or even days later, before I can read between the lines and figure out what the complaint is really about.  
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Ironicly, it be also what I want talk bout....*HOW* live this damn disease, an no only how live with, how live real well with it.  Indeed, it is real all I want talk bout.  I have done very good this depart ment in life...I proud that, want to share that others can too.  As much as want share that here...it some how just never seem like place to do that.  I wish that were diff.  Because this subject my passion.  But true is I feel vuln here, open to attack and ridicule...and no equip to field attack.  I get such mix mess ages I never know where come from either...unless some one calls out Merc Retro.

Like the Blessings thread in Alz sect.  I want be inspire peop with disease that we can live well, and share how things we told bad may no real so bad, may some good too.  It is a beaut post, no know if you read?  May you like?  In vari ble some how some one always comes dumps bucket water on what do (lol meant rain parade).  Been attacked two peop (CG) so far that thread...in thread at time, and other day in diff thread...as if to point out, see here why Sun a total bad pers.  I no understand that...an I no real want understand that see that side humans...so I try avoid it.  So I no real see this as place "safe" to share peop how live well...or things I find work.  Seems all the CGs are comfortable with and will allow, is complaining.

So I wish we could post more like that here.  I though Michael's thread (fore all that ugly) was one most progressive things see here.  Liked that lot.  Wish we could have talked that.  It hurts my brain try keep track all the taboos and double standards (like how dare I be sense, but CG can be sense imagined things).  I have trouble when people make things up...like admin who get after me post with 3 links in, says can onl do posts with 3 links...I no know what to do with that.  An my first response is to crack joke.  Work very well life, but taboo here.  I can no be diff pers diff place.  I just me. 

I can no tell you how many time last 2-3 days I have wanted post ask bout bath issue...need ans so much, need know be ok, and want tell you guys what is happ...but just can no risk it. Some one some where always come spit on it.  An the CG are real circling now. 

Peop in life say, I make them feel calm and peac and love.  I like to acknowledge peop, let them know what they mean me, tell how touch my life.  Peop here oft make me feel like scolded embarss child, or like I be monster...I no understand that. 

Peop who read me here...who real read me, LOVE my posts...love me.  I thrive in more high spiritual things.  I am type A, probably fair a lot...made worse by disease.  My brain is always thinking.  I deal with thing by take control of, which help live well with...but no good for late late.  I create make many adaptations, work-a-rounds, signs...I could no make an do as many as thought wrote down do. Eventu brain got worse and could no finish an more.  My workers help make some.  Should private share my blog post on it you.  I'd share here, but then admin say some thing wrong that too.  I am no able re write for here.

I love love love laugh at this disease.  I crack jokes it all time.  Once life, want go in stand up comedy.  I get peop round me laugh lot all time.  I think it good medicine body to laugh.  Some time, people think I insulting or complain...but real is laughing some thing.  That no ever come through here some reas.  I miss be able bring that out in writing...used long go be do.  I will laugh, oh my g-d, I can no find the bath gain!  I threat warn (funny) peop in life, one day I be wet my pants...an I no know what do then...like what if have doc apt...what do, do I go in wet pants?!  See eve that, here home we laugh that all time...write here, and sound like me complain. 

I think if peop knew me, heard me speak, they be get me...no more hear all wrong me.

I laugh lot in day life.  Like when PT ask me do some thing can no do, or no do well, I will usually laugh.  Which turns out his cue he is work me right things, so I be laughing most whole time.  Works out fun tha way.  Or when some thing hurts PT, I joke, yup I got a back.  But peop here no seem like that...seem hear me very diff read than speak me. I no sure why.  I try once, some one was real push me what were my opins anti psychs...I joke back, because I have no opin, say "well we are going die anyways"...as if say, it real no matter...do what you need do an no worry bout it.  But oh my gosh, they no heard that way!  CG seem have more hard time understand me, than say Alz+ so never sure what up that.

I try go CG help some there, learn some there...now peop good there me, but in begin was crap shoot...some peop LOVE what I write, some HATE what I write...to prett much same thing.  I no understand that.  I try be, just write you write...and no stress the haters.  Can do that blog, can do that FB, can do in real life...but can no do here.  The haters force you contend them.  Try to laugh it off them, an admin delete it.  Told em to grow a pair and suck up butter cup...apparent no hear me laughing.  I don't understand that.

I wrote a sign help me that.  May no why you get posts you look for from me.  Sign say: "There is no space there you (real you), all they want is you light...give only you light"  This mean me...like last few days when I real need you peop...real need be surround care gentle peop...it no safe show up here.  The momen I real, the momen my pain obvious, they smell sense it and on me like rabid dogs.  I do have very thick skin now, but I count that a loss me.  I always valued my heart...which could be open, will trust...even aft great hurt.  I loved that me.  n world. 

I am always on look out for real ways have help live better, make brain better.  Makes me feel like I have control over thing...even if illus.  I love that my brain so good find ways compensa. I real real wish safe here share that side me. If I were more earl disease, like when first joined...I would been better create space here that. I tried Zen thread...bring side self...but was pret much ignored. So mixed mess age there.

I am open to figure out how to do here this. <3

Amor Fati
Posted: Sunday, January 24, 2016 9:55 PM
Joined: 1/9/2016
Posts: 87


Dear Sun,

I loved your Zen thread and I loved the Blessings thread. They are beautiful and upbeat. They nourish my heart and soul. Thank you so much for that. I read your posts now with an open heart and what you want to relate comes through loud and clear. Thank you for your contributions. 

There will always be people who agree with us and people who disagree with us. It is alright. Everyone is in a different place in their journey. Nothing is right or wrong or good or bad. Everything is as it should be. Keep on posting.




Iris L.
Posted: Sunday, January 24, 2016 10:21 PM
Joined: 12/15/2011
Posts: 18509


Sun, I believe this is the first "real person" post I have read from you.  You want to know why you get mixed messages?  I don't think it is my place to tell you, but I will tell you anyway.  You give the impression of being an arrogant, narcissistic, know-it-all, who wants everything to be her way.  Everything is about YOU.  You attack people.  You attacked me.  You expect apologies when you have not apologized to people you have attacked.  


You have caused new PWDs to stop posting.  You criticize the boards and the members here all the time.  You criticize the caregivers and call them hateful.  The caregivers and spouses don't want PWDs on their boards, because of you.  


I know you will deny this.  When people try to alert you to how you affect them, you resist.  You lash out.  You have lost the capacity to be objective, and to see both sides of an issue.  

The idea of this board is for us to SHARE with each other.  Not for one person to dominate and tell the others where they are wrong. 


All the support you talk about needing above, we used to give each other, before you came along.  

Early this morning I wrote a long post to you, but I didn't post it.  I believe you can get the support you crave for the problems you face.  You need only to open yourself up and not criticize what people say to you.  If you don't care for it, simply say so, or ignore.   Don't criticize.  Don't argue.


The caregivers here are the most wonderful people.  They have helped me a LOT.  I read the caregiver boards because they offer lots of good information and advice that I need, as a person without a care partner.  Some posts may bother me, but I learn to overlook them.  "Take what you need, and leave the rest."  I learned this from another organization.


Our boards do have a degree of anonymity.  Anonymity can be an advantage, when discussing sensitive and intimate topics.  The caregivers discuss such topics all the time. I shared something sensitive on the Caregiver board just the other day.   You're right, people who feel vulnerable won't discuss anything sensitive.


I don't care what people say about me, as long as they don't say that I am not sincere.  I am sincere.  I may be wrong about certain things, but I am sincere.  You told me I was not sincere.  That's a huge no-no for me, Sun.  Yet I am still trying to help you.


I have always been able to count on my fellow patients and on the caregivers when I had a problem.  I believe you could too, if you have not burned too many bridges, Sun.


Iris L.





Caring4two
Posted: Monday, January 25, 2016 8:48 AM
Joined: 7/6/2014
Posts: 683


Iris wrote:

 Sun, I believe this is the first "real person" post I have read from you.  You want to know why you get mixed messages?  I don't think it is my place to tell you, but I will tell you anyway.  You give the impression of being an arrogant, narcissistic, know-it-all, who wants everything to be her way.  Everything is about YOU.  You attack people.  You attacked me.  You expect apologies when you have not apologized to people you have attacked.  

You have caused new PWDs to stop posting.  You criticize the boards and the members here all the time.  You criticize the caregivers and call them hateful.  The caregivers and spouses don't want PWDs on their boards, because of you.  

I know you will deny this.  When people try to alert you to how you affect them, you resist.  You lash out.  You have lost the capacity to be objective, and to see both sides of an issue.  

The idea of this board is for us to SHARE with each other.  Not for one person to dominate and tell the others where they are wrong. 


Yup. Sometimes you gotta tell it like it is. 


The_Sun_Still_Rises
Posted: Monday, January 25, 2016 9:56 AM
Joined: 7/24/2015
Posts: 3020


Amor Fati wrote:

Dear Sun,

I loved your Zen thread and I loved the Blessings thread. They are beautiful and upbeat. They nourish my heart and soul. Thank you so much for that. I read your posts now with an open heart and what you want to relate comes through loud and clear. Thank you for your contributions. 

There will always be people who agree with us and people who disagree with us. It is alright. Everyone is in a different place in their journey. Nothing is right or wrong or good or bad. Everything is as it should be. Keep on posting.

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

Thank you much this.  Yes, peop be read into things what they want be see.  I no sure how that happ.  It does no happ in my daily life, so I know it no me.  Zen an Blessing thread is more me, real me, than most what share here...that IS who I am, what I think bout, what I value.  I try though, very hard, to bridge communicate gap...I am going quit try that...it no work, an it just be rob me what time effort energy have left. 

LOL...no where in my day life, would an one say me it all bout me...indeed, they all work hard with me, say I need stop do other, start do me...take time self.  Indeed, I no know how that.  Eve my doc say, she feel like I take care her...she get all awww me, hug me.  I can  no long nav gate these mix mess ages...so I going go with last less learn...feed those pay attent those who love me, ignore all others.  Took whole life learn that, wished had learned that long go.  But such is life.  We can onl do what can with what have. 

Peace, blessing to you.  I no know who you are (wish did), but I so glad you come help rise me back light gain...feels like angel me, come round me help.  I have no words that.  Thank you much that.  <3



The_Sun_Still_Rises
Posted: Monday, January 25, 2016 10:02 AM
Joined: 7/24/2015
Posts: 3020


Caring4two wrote:

Iris wrote:

 Sun, I believe this is the first "real person" post I have read from you.  You want to know why you get mixed messages?  I don't think it is my place to tell you, but I will tell you anyway.  You give the impression of being an arrogant, narcissistic, know-it-all, who wants everything to be her way.  Everything is about YOU.  You attack people.  You attacked me.  You expect apologies when you have not apologized to people you have attacked.  

You have caused new PWDs to stop posting.  You criticize the boards and the members here all the time.  You criticize the caregivers and call them hateful.  The caregivers and spouses don't want PWDs on their boards, because of you.  

I know you will deny this.  When people try to alert you to how you affect them, you resist.  You lash out.  You have lost the capacity to be objective, and to see both sides of an issue.  

The idea of this board is for us to SHARE with each other.  Not for one person to dominate and tell the others where they are wrong. 


Yup. Sometimes you gotta tell it like it is. 

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

Iris

^ This be mix mess age me.  You say post real me.  But when post real me, you criticize me, nit pick me, pick part my words.  This is why I no post here much these things you wish would be post here.  It no be safe to do so...you just prove that gain, it no safe...you will no let be safe.

In stead you get things like my Zen and Blessings thread.  

Iris, I find there are 2 ways to be in relate to world an peop in it...you can eith BE part of it in-game, or be sit back in side line watch game an be judge perform ance of those BE in it play it.  This why we no get long well.  You i, we be in very diff place spaces in life.  I be IN life, live life fullest...do all can make bett eve one...hit tennis ball back forth.  You be sit back judge me for how well no well I hit ball...think self how me play tennis bett.  We get long bett if you come down, pick up tennis rack an start play ball...stop sit judge. <3

I be sorry that I can no over come the symptoms of this disease nough to fit what box you be think I should be fit in.  Wish you best. <3



llee08032
Posted: Monday, January 25, 2016 10:28 AM
Joined: 5/20/2014
Posts: 4408


Sun,

I've felt exactly the same way that Iris has felt. It is hard to say it but it is the truth. I've felt attacked and disrespected just for not seeing things YOUR way or sharing a differing opinion. I have moved forward and hold no grudges against you or anyone. I do that for me. I want forgiveness so I forgive and do not harbor ill feelings or hatred inside me. I am not an angel on the board by any means and I know I have projected some of my negative feelings onto others in the past. Fortunately, no one here has held that against me and we were able to move on. There are some strong female personalities on our board and we can get in each others way at times. 

You commented about me hating you in a post a few weeks back. I lost the post that I posted back to you. The bottom line is I do not hate you. I hate what people say and do at times but even that hatred is reserved for serial killers or perpetrators against children and vulnerable persons. 

There are times when I can relate to you and times when I want to tell others to back off and cut you some slack. I still do think we need to cut you some slack. I can only imagine how hard a read this post may be for you and I'm sorry that you are going to feel bad.

The point I want to make to you is that you have pushed me away and perhaps have pushed others away also. I can't tell if you care about pushing me or others away or if you are aware of doing that? 

This is what is really, really important to look at, at a time when you need others to support you. I have not been ignoring you it's just that you have pushed me away and the communication is too hard and complex when you may take things I say the wrong way.

All I know is I reserve cognitive reserve for life and I don't want to waste it or use it all up in going back and forth about who is right on any given topic. I am wrong a lot of times, I make mistakes all the time and I don't make sense or have to make sense all the time. 

If one person says you have a tail, perhaps the possibility exists that you really don't have a tail after all. However, when more than one person tells you, you have a tale you need to look and see the tail for yourself.


Iris L.
Posted: Monday, January 25, 2016 12:11 PM
Joined: 12/15/2011
Posts: 18509


Amor Fati, this is one of the things that got Sun so upset, and that is caregivers inserting themselves into discussions between PWDs.  I hope you can let us patients work this out on our own.  Thank you.

Iris L.


Amor Fati
Posted: Tuesday, January 26, 2016 10:23 AM
Joined: 1/9/2016
Posts: 87


Since Sun left, my time is up also. I only came back on these boards to support Sun.  Just wished you could read her posts with an open heart.