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Almost the weekend
jfkoc
Posted: Thursday, December 28, 2017 5:41 PM
Joined: 12/4/2011
Posts: 19622


which seems to be the time that "controversy breaks out so here goes...

I do hope that I am not viewed as one who "knows it all" but if so I do not care. I am thoughtful in what I post and my goal is always to help in some way.

 I do not intend to offend and will always apologize when told that I have. I have been a target,  not so long ago, and offense was intended.  There was never an apology. It was a dark time.

I do know something about caregiving and most of what I know has been given to me by others. I simply pass it along. 

Opinion:

I think everyone here has something valuable to say. It is just as it was when I joined. Did I want to hear everything that was said to me? NO. Did I need to hear it? Just about always.

 Do poster's here really try to hurt someone? Perhaps not on purpose but I would say yes, I see some of that everytime a we/they starts up. Divided we all lose.

There is no "they" here. We all hurt. We all need each other. We all need to give out a little slack as we hope for some in return.

This journey is deadly serious. I think all information needs to be considered. Some of it comes sugar coated...some does not but let's not take exception to the form. Let's not take exception to who it comes from, caregiver or not caregiver.

Does it really matter just how cognitively impaired one must be to participate. Does it matter what the cause of the impairment is? Is this forum really only open to those with Alzheimer's and the caregiver of the same? 

And finally do you really think someone takes the time to share information and/or support here with the goal of hurting someone?

Like I said, just my opinion. 


Andrew60
Posted: Thursday, December 28, 2017 7:04 PM
Joined: 7/17/2017
Posts: 342


Excellent and well thought out post JFKOC, thanks for posting that.
Pastel
Posted: Friday, December 29, 2017 11:00 AM
Joined: 12/29/2017
Posts: 3


Special on Xmas to see our ten yr old son have a calm about him as my aunt with dementia said nasty things to him without meaning to . we learn so much from him

It is hard to hear her say things i am afraid she will hurt him or my husband but they both understand

I need extra support on this issue

thanks

 


chrisp1653
Posted: Friday, December 29, 2017 2:23 PM
Joined: 1/23/2017
Posts: 1281


Pastel, we all need extra help with almost every issue that comes up with dementia, in all its ugly forms. There isn't anyone here who has been able to handle every crisis with grace and aplomb. My Barbara has so many physical issues, in addition to her cognitive ones, that much of her day is spent watching the TV, where, ( for a reason I don't understand, ) she watches crime dramas. One of her current favorites right now is " Blue Bloods." In one episode, the Police Commissioner is addressing a new class of graduates from the police academy, and he tells them they have gotten the finest training possible, but that in the end, it will come down to their hearts. That's how it is here too. No amount of training , or classes, or even experience, can equip us for some " over the top " situation that catches us off guard. The learning curve never stops.

By the way, welcome to the finest group of broken people you could ever hope to meet.

 

Chris


ladyzetta
Posted: Friday, December 29, 2017 9:14 PM
Joined: 2/16/2017
Posts: 1307


Dear jfkoc,

Your post have been very helpful to me and I am sure to a lot of people. I understand at times people can be misunderstood, like I was one time, and not by you. I got a lot of help from these boards when I first came on but after I started seeing all the negative responses from some people it kind of put a damper on what I want to say. It hurts to be misunderstood.  And it was my fault for being misunderstood. You are a very caring person and I enjoy your post. Thanks Zetta 


BlueSkies
Posted: Friday, December 29, 2017 10:18 PM
Joined: 2/24/2016
Posts: 1096


Jfkoc, why are you writing this?  My post was only trying to figure out why I had such cool reception on EO board.  Why would I try to hurt someone?  I am the one who feels hurt by cool reception by many I thought were my friends???  This place just seems to get more and more unfriendly.   I am struggling terribly here and just wanted a place to come for compassion and understanding.  I understand that there will be some on here who are unable to give that to me.  That's okay.  I will just focus from now on, on those who are able to.

 

 


jfkoc
Posted: Saturday, December 30, 2017 10:36 AM
Joined: 12/4/2011
Posts: 19622


Because I feel, as you pointed out, that we are headed to where we were a year ago and it was a very unfriendly place. It was destructive not only to posters but also those who do not post and those who read but are not even registered. 

 

 


BlueSkies
Posted: Saturday, December 30, 2017 10:53 AM
Joined: 2/24/2016
Posts: 1096


No problem jfkoc.  I thought it was about me.  I am feeling very vulnerable right now and just wanted to see if whatever the problem is if I could fix.  I have tried to talk to some who "seem to me" to not like me.  They will not accept connection or respond to my comments to them.  They are obviously not open to fixing any misperceptions that may have occurred.  I get that I can't be liked by all, but of course that is what we all want and try for.  I was just trying.  Won't try anymore with those who have made it clear they want nothing do with me.  

I am sorry they feel that way about me.  I am just another human being struggling with a disease that I don't understand and having trouble handling.  As many on here are.  I would hope that we could all be more understanding of this and forgiving on here.

Love to all....


jfkoc
Posted: Saturday, December 30, 2017 11:01 AM
Joined: 12/4/2011
Posts: 19622


I think you are liked just fine here!
BillBRNC
Posted: Saturday, December 30, 2017 11:08 AM
Joined: 12/2/2015
Posts: 1018


I know jfkoc's message wasn't in response to the comment I made regarding Iris in my Yippie message, but her thoughts likely would apply to what I said. I am not sure what Jfkoc is referring to specifically, but yes there has been tension on the EO board for the past year or more that I've been around. The fact is that people who have this disease and people who care for us need information and refuge, I know that, the information idea is why I came to this board. Frankly, I really don't need comforting by people I don't know, can't see, have never met, will never meet, and that might not even exist in real life outside this board. I don't mean that in hateful way at all. Why should I get comfort from the internet, I don't, and I am not upset about the fact I don't. But information is what I want and need. 

As some people know, but not many, DLB is vastly different from Alzheimer's. I am not sure it should even be called a dementia. I think it should called Lewy Body Disease, because that is what it is. There are many parts to this disease, and memory issues are the least of it. It is not an older person disease. Most people get in below the age of 65, and some below the age of 50. It is different. That has upset me a lot becuase I know what I feel are problems for me, but it seems that few on the Alz Board know what I am talking about, and certainly have nothing to offfer in the way of valid infomration. That is why I looked and looked for some way to find actualy people with diagnosed DLB, becuase they know what I feel, some are further and some or behind me in progress, but all are just like me, dying from Lewy Body Disease. My doctors don't know crap about this  disease when you get right down to it. The expert articles really don't know. But the people who have it do know. Unlike Alz, us DLB people can think, reason, talk some, and have contact with the real world right up until we get reasonably close to death, some lesser time, some right up to the moment of death. This is huge difference from Alz. What will become of me and what should I do and how can I prepare and how can I get comfortable are things only people with diagnosed LDB can tell me. So I can't see any reason why anyone should say I am wrong in doing this. And folks, there are very very few people on this board who have DLB and cared for people with DLB. I have the pleasure of know some of them, and I value what they say even if they might take a shot at me. They have the right to take shots, and I would be wrong not to listen to them.

What all this mean. It means that I don't give a tinker's damn about what some of the people on the EO board have to say abaout anything at all. In fact, I get really sick and tired of reading the tripe every time I go to the board. Thus I go there no more. I come here because I like this place of musing because it isn't like the EO board or the caregiver boardd. So unless I get kicked off, I will be come here. Or if people I respect here ask me to go. 

I have learned more from the LBDA Facebook place for people with diagnosed LDB in just two days than I have been able to learn in over a year of coming to this forum, a whole lot more. And I have real people with my disease to talk with, offer my perspective, and listen to their. I can ask real questions and get real answers. That is good. This Alz Board is great for the caregivers, becuase I thing they almost always operate on the up and up with good information from good people. The EO board, not so much. Some people there should go to another disease board for another disease entirely and pretend to know everything about that disease. I would bet some of the people on EO have been doing just that for years. This is why I don't go to EO board anymore. I don't wish to sound mean, but I don't have time to tip toe around anymore. 

No matter what happens jfkoc has walked the walk and she is damn sure in the right to talk the talk anytime she wants. Even if she think I have done bad, I respect her and listen to her. I just hope other people understand me. I've never been a touchy feel sort of person, maybe I should have been, but I am not. Happy New Year to everyone. Bill.


BillBRNC
Posted: Saturday, December 30, 2017 11:10 AM
Joined: 12/2/2015
Posts: 1018


Oh, I have a feeling that someone will get my messages on this subject deleted before too much longer, but that is ok with me too.
BlueSkies
Posted: Saturday, December 30, 2017 11:23 AM
Joined: 2/24/2016
Posts: 1096


Bill, thanks for your post.  I understand exactly how you feel.  I am trying to be more like you and let things go and not bother me.  I have always been sensitive and seems this illness has made that worse about me.  I am working hard at controling my sensitivity.  It is an ongoing work in progress.  

I was originally diagnosed with FTD as you know, but new doctor at UAB thinks I may have DLB instead of FTD due to movement disorder and many other new symptoms that I am experiencing.  It would explain why I am so aware and yet so impaired at same time. 

 Your posts Bill  have helped me tremendously.   I thank you so much for your sharing...BlueSkies


jfkoc
Posted: Saturday, December 30, 2017 11:50 AM
Joined: 12/4/2011
Posts: 19622


I think maybe the different causes are less relevant to caregivers.  Thoughts?

Blueskies...my husband went from MCI to Parkinson's to LBD....Please do your best to get a clear diagnosis. It matters.


Keep It 100
Posted: Saturday, December 30, 2017 12:33 PM
Joined: 2/26/2017
Posts: 582


Jfkoc you are never the one being referred to as a know it all. I guess only a handful of us get who the offending party is, and have been annoyed by the seemingly (to me) insanity of this member. I have had to recently call that member out...I am sure a request was made to have my post removed, but really, I don’t give a damn, just wish that person would grow some insight, and grow up.

Bill, I know your disease is different than my husband’s YOAD (57 y/o) but much of the struggle is the same, and though he is totally aware of what, in general, is happening, he cannot express it. Your insights help so many of us caring for spouses and loved ones with this disease. Thank you for your input and thoughts on all matters. 


jfkoc
Posted: Saturday, December 30, 2017 12:54 PM
Joined: 12/4/2011
Posts: 19622


If truth be known, there are more than a few who annoy the h**l out of me but I see no good coming from pointing out who I feel that way about. 

I try really hard to think there is honest ignorance, to cut slack while remembering we are all hurting and sensitive and that people post from their heart to be supportive and helpful. If I go the other direction it affects me negatively and boy-howdy( I think that is an Oklahoma expression) I don't need extra of that. I find it better not to always post what is on my mind...lol

Keep it 100....I, and others,  have been raked over the coals and called a bunch of bad names both here and in private connections.  May it never happen again to anyone. 


Keep It 100
Posted: Saturday, December 30, 2017 3:06 PM
Joined: 2/26/2017
Posts: 582


Jfkoc, I remember. It was not pretty, and assuming I am remembering the incident correctly, there was a tragic end for this member. Sad on many levels. 

Like you, I mostly stay out, and going further than that, I mostly stay away. But I have been told so many absurd things, (from a member that is not included in my circumstances in any remote way, may have issues but clearly not a progressive alz), including unsolicited advice on how my declining husband can live better to be like this member (again, without progressing Alz), how something I described about him showed he did not have Alz, and on and on. That is abusive in my opinion, cold-hearted and cruel, and after so many years here and so many posts and so much “expertise”, imo it is not the honest ignorance you so very generously prescribe. But I am happy to agree to disagree on that!  


llee08032
Posted: Sunday, December 31, 2017 8:06 AM
Joined: 5/20/2014
Posts: 4408


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llee08032
Posted: Sunday, December 31, 2017 8:08 AM
Joined: 5/20/2014
Posts: 4408


Happy New Year & Love to all!
Canada111
Posted: Sunday, December 31, 2017 10:46 PM
Joined: 8/22/2016
Posts: 263


Love you Illee! Love you Blue Skies!

Happy New Year to all!!!