I must tell you as a person with dementia we get such a bad rap. Every time I read these caregivers site I am fuming on how so many are treated. While i know some of them may need what they are doing. They all take the easy without and look for moral support from each other to approve their failing ways of doing things. I can see were some people do scream hoping for someone to hear them for the injustice just hoping for someone to help them. I once enjoyed reading all these because it made me better educated in understating what is needed to help people like use. Sadly not much is being done and people take it into their own hands without the seek of real professional that know how to deal with us. Sadly it is a small pool of people who really know how to do it. Do you folks read them or are you smarter then me and don’t look at it. If they only asked people like us why their love ones were doing this or even have us communicate with them. We may even be willing to help them if we were involved. This will be us one day. Not that long from now.

Hi Michael!

The caregiver boards. I do go over there once in awhile to see if there is a situation that I may have some insight to offer. Once a month?

It seems people who came into this with no prior experience in their family history and no friend who had ALZ or other dementia are the ones who maintain a belief system that harms the person with dementia as much as it harms them.

They see every CHANGE as evidence of their loved one "disappearing". They measure our value by how much we can remain of use to them and their identity as opposed to viewing us as their loved one with brain changes.

People do not make same demands of some one who has a brain tumor, or brain injury. Every time I hear or read someone talking about "Granpda does not remember my name!" I cringe. I want to tell the kid, "Hey - give Grandpa a couple minutes to come up with your name, or remind him yourself. He's not up for being tested and quizzed. He's not some broken toy."

The current amount of time allowed to come up with a verbal response is less than 6 seconds! That is part of why phone conversations are so difficult.

The medical model of dementia teaches caregivers that creepy way of interpreting the cognitive changes as "the person is becoming an empty vessel, no longer has value." They do not seem to understand body language, how their disgust and impatience affects the one they are trying to help.

When the people in charge of your life believe you are becoming both stupid and useless you get trouble. Some people appreciate learning the truth of our reality though and have benefitted a lot. For those people I do try to offer an alternative perspective. The ones who get angry - scary.

I pray for every one of the "problem people" who are getting drugged up or shipped off! The tide is turning though.

I no longer continue to do anything that makes me Mean or Stressed.

Love and Courage

Does this site have a closed group for just those with dementia? If yes how do I get to it. Thanks

this has been an interesting thread. To answer Michael, I don't go to the caregiver boards. I looked at them once about 4 years ago and just decided they weren't for me. I stay on the younger onset, people with Alzheimer's, and the musing boards. These seem to help me cope and find encouragement.

On my worst days, I do have trouble coming up with a response especially when its with someone I'm not used to talking with. I suppose I get a bit anxious and perplexed which makes finding the right words even harder. But that's okay because if they aren't patient enough, its their problem not mine.

thankfully, my wife can sense when I'm having a more difficult day and she patiently waits for my reply when I get stuck. She is a wonderful lady who really understands my situation.

God bless, Paul

MIichael - no there is not a private place for people with dementia to post without it being open to care givers or any one else to read and reply.

I sent you an email. The private FB group is only for people with dementia, yet even there I find my suggestions being questioned.

Michael - I think most of us have periods where tension escalates and we want to end it all or run away. I have been through that. I felt my husband did not understand, refused to give me the things that would help me LIVE easier, and that he was disgusted with the idea of having to help me. My own family did things that shocked me so much I am still avoiding them.

If you asked your wife to ask us how to help I think many of your fellow patients would tell her the basics.

Starting with giving you time to respond. Or needing a quiet place - NO other chatter or tv or noise - to focus on having a conversation with her.

I am no expert except in my own life. If my husband and I change things from a living hell to the best we ever got along (even though it took more than a year) I am pretty sure any one can do it.

Please write more about how it feels to read the caregivers posts. I think it is helpful for everyone. But focus today on calming your distress. Today that is what needs to come first. You make yourself a quiet safe place to find calm.

I care about you, do not give up. You are probably still in shock from being cut off for speaking about the difficulty of getting through to people. Those hurts seem to linger a long time when you have dementia, we need to give ourselves time and quiet.

You matter to many people. Do not give up. Let other people come in to help your wife learn. Maybe some one here knows who those Other People are or how to find them. Not likely the 800 number but then, I never called them.

To others here - this person is suffering. This person reminds me of when I was panicked. What do we do when we are in this state of mind?

Michael, I am now concerned that the fact that I posted on this thread has caused further distress. I have removed my words, though I did not delete my post as I was concerned that might cause the following posts to also get deleted. Think they are linked together if one clicks on add reply.

If in fact I did cause distress, you have my apologies. That was not my intention.

Peace, Cynthia

Michael, I am now concerned that the fact that I posted on this thread has caused further distress. I have removed my words, though I did not delete my post as I was concerned that might cause the following posts to also get deleted. Think they are linked together if one clicks on add reply.

If in fact I did cause distress, you have my apologies. That was not my intention.

Peace, Cynthia

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you came with love and then went so far as to respond again when you even thought you might have offended.

When people are super stressed and at end of rope state it is confusing to know what exactly will help another person.

Hope Micahel responds to this because we are all learning how to respond to people in distress better. We are re-inventing life with dementia.

first of all this site real stinks I tried to do regular reply and it brings up all of the lat emails information.

There are many issues hear. Fist I am not planing on going anywhere for now. Not until I get to the point that I am no longer of being me.

No one should be deleting there emails. I just believe there should be two places for people with dementia should have. One were we can all be involved as a group and to have place were only others are living alike with dementia. While I don't believe my caregiver use this site I would sure hate to know she did and I could not say all the things I want. They would be things that maybe my dementia friends can relate to.

Because of my thirst for knowledge I have come to learn many things that most caregivers don't know and when I say them they just think that I am a person with ad speaking.

This whole post was just about how caregivers think they know us and they real don't. Probably never should have said anything about my own caregiver but it is true as many of them fail. She is not failing because its hard, but because they are so stubborn to learn new ways. to much for me to rite to explain it all. Having one that works in the medical field only complicates matter as what most would consider the opposite.

I am glad to hear that some of you do not go over there. It my constant thrust for knowledge that gets me. I thing they say was curiosity killed the cat. That is me. Its in my nature to push the envelope and be a leader. Most are not able to handle that and that is okay.

I am just surprised the people here do not have more demands on what they want and expect from the site. I feel like I am the trouble maker and I am for trying to make things better for all . It may not seem that way but I can tell you that is always my only goal.

I almost wish there was some type of arbitrator for folks that can work and speak for people with dementia . People with dementia are always getting the short end of the deal. Just look what happens to me by AA. You can be sure I will be attacked by this as I was in the past. They all try to cover there but publicly but realty is they all feel bad about this and agree this should have never happened.

some times I can reply without the previous post being copied. like now.

I guess just being able to say what you feel in the moment is so helpful, being allowed to speak your mind can bring a lot of relief.

That is something for me to work on. People just need to let it out, not every one is getting ready to jump off a cliff jest because they are truly and rightfully upset.

The point that caregivers are stubborn and slow to accommodate us is in part because the American environment around ALZ is toxic and the lack of support for CGvrs is draining them. Two different issues.

No one can be perfect, I understand that. But it is a definite shift in willingness to listen with more than ears. We say things out of fear, desperation, and anger. Anger is usually because people refuse to listen more deeply and respond with some help.

When they do give help it changes their life for the better too.