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Letter to alzconnected
Forget-me-not
Posted: Friday, September 12, 2014 10:29 AM

I know I am breaking all kinds of guidelines and rules with this plea. I am addressing whoever is in charge of these boards. I am speaking for the community that you are claiming to serve.

 

This is the most unwelcoming place I have ever encountered for a person with dementia. People have been pleading and asking and telling about the terrible conditions here, but have been pushed away, ignored, driven away. The basic rules for interaction with persons with dementia are trashed and stomped on by this organization. You do not practice what you supposedly preach.

 

Persons with dementia do not know how to follow rules and guidelines. Reason and logic mean nothing to them. They interact from the heart and on an emotional level--only!

 

This is such a hostile environment for them, and this message comes through loud and clear for them. A few brave souls persevere and try to teach better ways of communication with  persons with dementia, but they pay a heavy price. Their spirits and souls suffer tremendously--yet they speak out for their fellow human beings and are a voice for them. I admire them greatly. They are braver than I. I will not allow my dear husband to come to these boards, because it would destroy him. These loving, caring people come speak to all the people on these boards. They are voices in the wilderness. Yet no one listens to them.

 

I am not finished, but this program does not let me continue.

 

 

 


Forget-me-not
Posted: Friday, September 12, 2014 10:48 AM

I am continuing.....

This is a place primarily for caregivers. Lots of vital information for them, lots of support. Warm and fuzzy. But the training of the facilitators appears to end there.

People with dementia have so much more to say and teach. Let them be the teachers for the facilitators. At the very least let them have input in their training.

 

This can not continue as it is. You, the organization, is actually contributing to the abuse and humiliation of the people you are claiming to serve.

 

You have the power to change things. Listen to the Alzheimer voices. Their messages are clear and easy to understand, if you are willing to listen with your heart. This could be such a wonderful, loving place, setting an example for the rest of the organizations, but changes have to happen from the top. Please listen to the pleas of the people who have no voice.


Mimi S.
Posted: Saturday, September 13, 2014 4:28 PM
Joined: 11/29/2011
Posts: 7000


Hi Forget-Me Not. 

 

You are not a person with dementia, according to your profile.
I do have dementia and you do not speak for me.
To me the guidelines are quite simple.
1. Be respectful to all.
2. No selling stuff, including your own books. We are not even allowed to ask for donations for our own Walk to End Alzheimer's. Can you imagine if that were allowed. many of us are trying to raise money for the cause. We'd be inundated with appeals. Now,  the legaleses may be more complicated to read. I think the above pretty sums it up.
I have found this a wonderful site. If I didn't I would not give my unpaid hours, being on here daily, validating people's concerns and answering questions that I feel I can. I have also  been involved with and have witnessed caregiving, so I feel compassion and have information to offer on that.
Since being diagnosed, I have read and read, including many first hand accounts of those with the disease. I refer folks to these when appropriate.
Reading both your posts I don't know that you have  broken the guidelines. You state as facts  "This is the most unwelcoming place I have encountered for a person with dementia..etc. etc."  As a person with dementia,  I disagree , but you are certainly entitled to your opinion.
"Persons with dementia ...reason and logic mean nothing to them. "  Excuse me, but you are painting all people with dementia with one stroke. We are not. It is the folks with early stage dementia that these two boards are meant to serve. You can't tell us from normal folks by just looking at us. Yes, we do have problems, but those on these boards are perfectly capable  of speaking for ourselves. My reason and logic may be impaired, but it still works.
I do not find this a hostile environment; maybe because I don't try to circumvent the rules. I try to listen to my fellow suffers and figure out where they are coming from and acknowledge that.
I am sorry that you won't allow your husband to speak with us. Those of us who are on here, I do believe, made our own choice to be here. Several of us have b become quite friends with each other.
I, in no way, shape or form, feel abused or humiliated by being on these boards. And I would prefer that you not speak for me. 

Lane Simonian
Posted: Saturday, September 13, 2014 5:20 PM
Joined: 12/12/2011
Posts: 4451


I don't read everything on these boards, but my sense is that sometimes the suggestions made by those who have Alzheimer's disease or another form of dementia are sometimes responded to negatively by a few caregivers (and vice versa).  In the case of Michael, I can partially understand because he is trying to advertise his book which he is doing with the best of intentions, but is against the rules of Alzconnected.  But that led to some unfortunate exchanges. Feelings have been hurt on both sides on other issues, as well.  


And then there are technical problems with the website that make it difficult to use even for people without dementia.


This is just my pet peeve, but could the banner ad selling the caregiver notebook be removed.


Most of the exchanges are respectful here, but the ones that are not make me cringe.


Jo C.
Posted: Sunday, September 14, 2014 12:20 PM
Joined: 12/9/2011
Posts: 9394


I am sorry you feel that way; I can feel how upset you are from the tone of your written words.  Evidently you have found an experience that was very upsetting to you.  Can you share with us what that experience was?  Often, there can be an edit or a deletion of a post that angers people.  Have you personally or has someone you care about had a post deleted or edited recently?  Can you share with us what specifically was egregious to you so we can understand what you are referring to?

 

In any case, I will have to add my voice to Mimi's.  I have been on this Message Board since 2006, and all of my experiences have been highly positive.  The kindness, support and assistance I received here has helped me keep my head above water during the worst of times.  I have been so grateful, that when the opportunity came to become a volunteer, I was very happy to be able to do so, and in that way I can give something back.  Like most volunteers here, we care deeply about the Members and spend many hours of our own in that capacity.  Yet, we ourselves are still Members and at times bring our own issues to the Board and Members reach back out to us.

 

Also, it must be said that a large number of our people who are diagnosed with and living with dementia are extremely still quite active in the stream of life and contributing in their own way.  It is simply not accurate to put all persons diagnosed with dementia into one basket and label them in a deficient manner in that . . . ". . . reason and logic mean nothing to them . . . they react from the heart and on an emotional level only . . . ."

 

I have to defend our dear Members with dementia who are so bright, so savvy, who communicate so well and with great contribution and sensitivity.  Some who have had dementia for years are teachers of others, advocates in person, even all the way to Washington D.C.; they belong to various Boards and reach out to others in many different ways; one started an annual camp for kids whose LOs have AD, others have started various groups or help to run groups.  They DO reason and utilize logic, they ARE working with intellect and intelligence, and great grace.  PLEASE BE AWARE:  these are not just the very newly diagnosed; these are people who have lived with the diagnosis for years. 

 

Mimi for one, has written multiple successful historical books and still is writing and having them published.  Lisa is also working hard with the various Boards and Groups and has done so for years.  Alz+ is busy teaching others about various issues, Paul is active in his way and contributing so much; Myriam is going full speed ahead with researching, contributions for others and reaching out in advocacy.  Iris is a huge contributor; these are but a very few examples.  It is quite inaccurate and also hurtful to hear all people with dementia being labeled as incapable and that "reason and logic mean nothing to them . . ." nothing is further from the truth.

 

When it comes to becoming a Member on the Board, we ALL must declare in electronic agreement to the Board's "Terms and Conditions."  One will find the link for this at the bottom of the page.  I actually read them prior to signing and read them again from time to time to see if any changes have been made.

 

This is to be a safe and soft place to land and it is stated the primary purpose is for support.  There is included in these terms and conditions that one may not post in a way that will be ".  . .  tortuous . . .  harassing . . .  abusive . . . defamatory . . .  vulgar . . .  obscene . . . or otherwise objectionable . . . "

 

There will be no unauthorized advertisement . . . promotional materials . . . chain letters . . . pyramid schemes . . . or any other forms of solicitation . . . "

 

Also, there is also strong reference to those who compromise and infringe upon copyrighted material violation. 

 

There is to be no, " . . . name calling . . . threats . . . lewdness . . . hate speech . . . bigotry . . . vulgar language . . . discrimination .  . . sexually inappropriate comments . . . hostile comments . . . or attacks on other Members . . . "  AND further, the Administration, ". . . has the right to screen . . . . edit . . . or remove any content that violates guidelines OR is that is otherwise objectionable."

 

Not knowing what has brought forth the stance taken in your post, I have listed some of the terms and conditions here for yourself and others to read.

 

After all the years here and reading all Forums with regularity, I personally cannot find a pattern of Members being "trashed and stomped on . . ." or any "abuse and humiliation" with "being pushed and ignored . . . "

 

Since you put voice so loudly to what you feel and since you have put all accusations here to share with everyone, in all probability you have in some way felt hurt; if you will let us know WHY and what occurred, perhaps then we can understand and perhaps even be helpful.

 

But unless you do let us know, we have absolutely no way to know what you are speaking of.

 

May you find peace and solace and I so hope we are able to be of help.


jfkoc
Posted: Sunday, September 14, 2014 5:03 PM
Joined: 12/4/2011
Posts: 16580


I have to agree with all that has been said and do encourage you to be specific so that if possible the situation can be resolved. We do that pretty well here.
Jo C.
Posted: Monday, September 15, 2014 12:49 AM
Joined: 12/9/2011
Posts: 9394


Hello again, Forget-me-not.  I was not able to determine what happened to cause such upset for you, and I wondered if there had been a pattern of negative occurrences, to cause such a reaction and thread, so I used the "Search" function with your avatar name and read a significant number of threads and posts you had written.  I noticed your joining date to this Message Board is November of 2013, so you have been part of this Board for eleven months and have posted numerous times.

 

In all instances, your posts and the responses were highly positive with much support received and support given.  I was not able to find a single instance of negativity whatsoever; quite the contrary.  It appears to have been a highly positive relationship with the Members, especially on the Spousal Forum.

 

This then furthers the thought that an incident occurred that has caused you to feel hurt or put upon.  I looked to see if I could find such an incident using the "Search" button, but could not.

 

If you can share what happened, we can then understand and also see how we can be helpful.

 

With best wishes,

 

Johanna


Lane Simonian
Posted: Monday, September 15, 2014 9:23 AM
Joined: 12/12/2011
Posts: 4451


I am reading between the lines, but it seems like Forget-me-not was troubled by how some of those with Alzheimer's disease on these boards were treated (not herself necessarily).  I may be wrong but I think that is the source of the frustration, anger, and sadness.
Forget-me-not
Posted: Monday, September 15, 2014 7:02 PM

Yes, I was angry, frustrated and sad. My plan was to write the letter to whomever was in charge and leave the boards. But then I realized, that leaving  in an angry state of mind was not what I wanted. So I returned and checked on this thread, saw that I had caused nothing but anger in the replies and knew, that before I could reply I had to truly own what I had written.

Surprise! Surprise! Every sentence of my angry post pertained to me, and how I treated my husband! I was experiencing what I had written. I had to surrender free will.

 We had a terrible argument the day following my post. I hurt my beloved in such a deep way, it almost killed him. Actually, he wanted to die. I created a very hostile environment. I have not been able to see and understand what he had been telling me for a very long time. He brought it up again and this time I blew up.

What he had been telling me was "I want to stop all the pills". That night I wanted to show him that he had tapered off of four meds, but the remaining five he had to continue with. He kept saying "I want to get off all of them." That was when I yelled at him, stomped my feet and slammed the door. I thought as a nurse I knew better that he has to take his diabetic, his seizure and high blood pressure meds. I had told him that many times and I thought it was a logical explanation. But I had to get out of my reasoning mind and into my heart.

After some soul searching I realized that Alz+ had talked about this. That keeping a patient safe and comfortable is not enough. We have to listen with the heart and see what they really are saying. He had told me many times that I was too controlling, but I never listened. I always told myself that I am doing this for his own good, to keep him "safe".

This time I understood what he was saying. He wanted control back, be in charge of his destiny. So I apologized that I had been blind and deaf 


Sea Field
Posted: Monday, September 15, 2014 8:05 PM
Joined: 8/5/2012
Posts: 1863


Forget-me-not,

 

It's such a fine line - how to honor another's journey while at the same time offering assistance.  It's a line that I zig zag all over.  Most of the time the balance eludes me.  Though I keep trying.  I guess we are all learning as we go.

 

What an insightful process you have been through.  A friend of mine, now deceased, often stated that the topics or persons that elicit a strong emotional reaction within us, are the 'doors' that will help us see our shadow side.  By shadow I don't mean bad, just something that is currently unknown to us.  It appears you recognized one of your doors, walked on in and looked around.  Bravo!

 

Many blessings to you and your DH as you both find your way through this quagmire.  You are doing better than you know.  IMO, being willing to walk through this experience with another person, with our hearts wide open is the most important step.   The other steps will follow.

 

Cynthia

 

 


Forget-me-not
Posted: Monday, September 15, 2014 8:16 PM

continuing..

 and I promised him that from now on he is in charge of his life--meds and everything else, and if he wanted to stop the meds, he could, and I would not interfere.

He stopped them--missed his PM dose and the next AM dose. By late afternoon he felt badly, took the morning dose, felt better and decided he will stay on the meds for a while.

 This morning he wanted to repair one of our old chairs, glue it and replace the screws. He started to work without having a protective cover underneath it. In the past I would have run over there and put paper on the floor. This time I just watched him work. He spilled some glue on the floor, figured out what needed to be done and got paper towels to put under the chair. He fixed the chair.

Then it spilled over to our sons. I do not listen to them either. Our younger one loves to chat on the phone and I usually tell him after an hour that I need to be doing something. This time I put everything down and really listened. He had many interesting things to tell me! I told myself that I would wait until he was finished talking. After 2 1/2 hours he thanked me so much for hearing him out, and that he felt so much better now.

This is much longer than I had anticipated. Sorry to take so much of your time. I am also very sorry I came here in such an angry state and was disrespectful and hurtful . Nothing excuses that.

 However,  much can be done to improve the situation for patients. Alz+ is sharing wonderful insights and better ways of communication with patients.  May we all learn from her. You are all wonderful people here, hopefully we can make things better.

Again, I am sorry for my deplorable manner of communication. Lane, thank you for reading with an open heart.

 

 

 


Forget-me-not
Posted: Tuesday, September 16, 2014 6:57 AM

I would like to leave on a lighter note this time:

Michael Ellenbogen graciously asks for donations to the Alzheimer's Association on his website. But the dear inadverternly omitted the l in click, so his solicitation reads as

 

Make a donation to Alzheimer's Association

cick here

 

Apparently my brain took it literally.

 

 

So I close with Tiny Tim's words:

 And God bless you all, everyone.


Lane Simonian
Posted: Tuesday, September 16, 2014 9:35 AM
Joined: 12/12/2011
Posts: 4451


I am glad that you came back Forget-me-not.  Thank you for explaining your situation further.  I understand better now and probably others do as well. My mother had an expression that went something like this: the first response is not to judge, but to understand.


I used to try to explain to my mother why I was doing certain things when persuasion did not work: I need to lift you off the couch so that you can go to bed, I have to carry you out of the car so that you do not freeze, I have to sit you down on the toilet so you do not get wet at night.  Usually the response was no, no, no.  But sometimes she said "how would you feel if someone did this to you."  People with dementia like everyone else but perhaps even more so want to have some control over their lives.  I did not really get it then, but I do now.


Yes, thanks to everyone who has educated us on these boards. If we did not always listen with open ears and open hearts try to forgive us.  Bless you Forget-me-not.  


Jo C.
Posted: Tuesday, September 16, 2014 10:27 AM
Joined: 12/9/2011
Posts: 9394


Dear Forget-me-not, I am so glad you have returned and that you have talked with us; we understand.

 

I am so very sorry for all that is happening; this is one of the most difficult journeys to travel, and I am glad that we found a place where there are others so similar to ourselves and who truly understand.  What a blessing and a gift.

 

I would like to ask this one question, did any person outside this Message Board contribute to the stance that was written in your first post?  If so, do you feel you can speak freely about it?

 

In any case, please do know that we are delighted to have you return, and to know that we will continue to offer one another support and assistance as can best be done.

 

Sometimes this place seems like a large, extended electronic family where one is accepted no matter what.  Families are like that.

 

As you can see on the Spousal Forum, things are moving at warp speed and Lorita's ongoing thread is filled with support, information, warmth and so many interesting things.  I am sure folks will be glad to see your return as you used to post there.

 

With my very best wishes coming to you,

 

Johanna


Mimi S.
Posted: Tuesday, September 16, 2014 11:07 AM
Joined: 11/29/2011
Posts: 7000


Dear Forget-Me-Not,

 

Since I was angry with your beginning post and did respond,  I have to tell you that you sound like such a different person in your most recent posts.

 

To do what you have done with both your son (time to listen) and hubby (let him be more in charge) are wonderful. You have come to realize what so many people only realize when it's too late: I wish I had ...


And if your hubby realized that the pills he was taking did make a difference, there is a part of his brain that is still capable of making good  decisions and learnng from his poor ones. We ADers have strengths and weaknesses. We will do best if we and others can identify these and use them.

 

I don't write as eloquently as my fellow PV, Jo C., but do know I am delighted to read your recent responses. 

And if hubby is capable of joining us ADers on the boards, I do hope you will encourage him.


Lisa428
Posted: Tuesday, September 16, 2014 9:26 PM
Joined: 12/5/2011
Posts: 795


Dear Forget-me-not,

 

Wow, I am really impressed.  You did some very challenging work. It's very difficult to do.

 

You mentioned being a nurse.  I was an RN prior to my illness.  We tend to want to heal everyone.  Fix things.  Take care of everyone especially our Loved Ones.

 

As a person with EOAD, I can tell you that it is very difficult loosing things.  For instance, I lost my job.  (realize that now I am unable to take care of myself financially), I was scared to death. Loose my ability to drive (now I am dependent).  Loose my ability to handle my finances (makes me feel stupid) and along with many other losses, I am slowly loosing my mind.

 

I think you have made great strides in your relationship with your husband.

 

Please, keep posting.

 

With Peace and Hope,

Lisa


alz+
Posted: Thursday, June 4, 2015 5:21 PM
Joined: 9/12/2013
Posts: 3333


gee whiz.

so a year later I find this post where some one who I consider a friend said my ranting about how to listen with heart to dementia helped her!

anyway, having been banned from message boards years ago (I can only remember being banned from Roseanne Barr's site, the others I forgot!) it was a relief to know my rants do offer another way of listening ...

What forget-me-not did for her husband is really big. and I learned from her post that even though I imagined my family would change and become supportive of me when I was diagnosed did not happen. My Mother never missed an opportunity to show her disapproval of me, and even after my Dad died of ALZ, she still picks at me.

My husband has come around this past year because I am relentless in my view that helping my Dad through his illness and his death was one of the most wonderful experiences I ever had.

There is so much to learn!

I wanted to reply to the person who said "you can not tell a person with dementia by looking at them" that people do recognize some thing wrong with me and in photos my eyes have changed, sort of a vacant place in them.

My recent learning curve ball is that my brain still thinks, my conscience still bugs me, and I hope my husband will still love me. He is doing the best he can and no one else is showing up to take over his efforts.

I wanted to get a pass on bad behavior! My family still expects me to feel for them and I still have to apologize, and often.

So, my point was that maybe blowing up opens doors. Then again, I respect every one on their own path. We do not know what they endured before, or what we will endure in the future. All I can do is keep going back to love and courage.

Also just finished a book "we all know how this ends" by a man who died of ALS.

His insights into the trauma of getting our final passage ticket were really helpful.

You are all really helpful, even during a bad days and angry outbursts.


favorite line from my cousin, " I am NOT saying it is your FAULT, I am saying I am BLAMING you." Astounded I have started to find some of this funny.

There is nothing funny about things going well.

love and courage and gratitude!


Jo C.
Posted: Saturday, June 6, 2015 3:51 PM
Joined: 12/9/2011
Posts: 9394


alz+, your cousin's commentary was interesting; how did you respond to that? I would not have known what in the world to say.

One of my favorite quotes was one I saw on a small billboard on top of a printing business. It said:


"No matter what your past, your future is spotless."


Wow! Pretty powerful stuff. I wonder how many people driving past that had it change their lives or at least change their feelings about themselves.

I think this particular thread shows how much people care about one another here and how indomitable the human spirit has the capacity to be.

Thanks for bringing this up into sightline once again.

J.


alz+
Posted: Monday, June 8, 2015 6:42 AM
Joined: 9/12/2013
Posts: 3333


NO MATTER WHAT YOUR PAST, YOUR FUTURE IS SPOTLESS.

excellent!

I laughed at my cousin, she was mocking our family tradition of finding fault when ever possible and doing nothing to solve problems! Love her.


 
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