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Some people just don't get it
Iris L.
Posted: Wednesday, February 10, 2016 4:46 PM
Joined: 12/15/2011
Posts: 18342


I read the boards (all of them) and I see some people get it and some people don't.  It, being, dealing with dementia.  I have been exposed to many professionals, many of whom deal specifically with seniors, and I have been disappointed by all of them.  


I am doing okay for now, given my eliminated diagnosis of cognitive impairment not otherwise specified.  Even the powers that be that eliminated my diagnosis don't get it.  What they have substituted, mild neurocognitive disorder, does not explain the same aspects of cognitive impairment nos.


For now, I can analyze what people say, and disregard the faulty advice.  My fear is what will happen to me if and when I can no longer think the way I can now.  When I cannot protect myself.  


My only safeguard is this message board.  This is the only place where I believe I can trust the conversations and the guidelines and information given.   I read the boards every day to learn what I can do for myself, and to be uplifted by encouraging stories.  


I was uplifted today by three posts from Alz+, mostly about her encouragement to view dementia as an adventure in consciousness.  No a single one of the many professionals I have consulted has ever said that to me.  I need encouragement and uplift.  The professionals just don't get it.


If the professionals don't get it, how can they counsel and advise the many other patients in my situation and their families?  Answer--they can't.  Woe are we.


Fellow patients and care partners, please keep posting!  I need you!  Thank you for being here and sharing!


Iris L.




 


BillBRNC
Posted: Wednesday, February 10, 2016 7:22 PM
Joined: 12/2/2015
Posts: 1018


Iris, I think most people don't get it, curly not the doctors. I think most people, including spouses, don't get it. Unless you have it, you just don't know. Caregivers know the problems of taking care of us (many), but they can never know what is really going on in our head and bodies. Heck, I don't know most of the time. People think we either don't really have a problem or that we can turn it on and off at will. As long we stand, breathe, and talk, then we must be fine. After all, everyone has these problems, so we should just buck up and live with it. Right?
Be Strong 2
Posted: Wednesday, February 10, 2016 9:44 PM
Joined: 12/14/2011
Posts: 1751


I hesitate to reply, and don't want to sound argumentative or condescending. I think you sell a lot of caregivers short. While we may not fully understand, how could we? Most of us really try, to the best of our abilities, to put ourselves in the shoes of the PWD. Fully agreed, it can be a scary place. On the other hand, none of us knows what tomorrow will bring. 

While we may not understand, most of us come to have empathy (is that the right word) with our loved ones. We do our best to let you be you, while still being the protector. We may not let you wander but hopefully we'll walk with you, talk with you. Do we ever run short of patience? All the time, but we keep on trying. We do our best. We honor our commitments, out of love.

I guess I don't know for sure what I want to say, or at least how to say it, but I do believe that I got it. I believe that most caregivers, real caregivers, got it. That's in the past tense. New caregivers, as they go through the journey, will get it.

 

Remember, we're all in the same boat; and the darn thing leaks!

Bob  


BillBRNC
Posted: Thursday, February 11, 2016 7:20 AM
Joined: 12/2/2015
Posts: 1018


Bob, I absolute didn't mean what I wrote as a slam on anyone, particularly caregivers. I was just stating a fact. As with many things in life, a person really can't know what another person is feeling unless they walk in their steps. Just like I'll never truly know how my spouse feels about caregiving. I know she cares, I know she works hard, but I don't know what she feels. And no, I don't think most folks get it when it comes to folks with Alz who aren't drooling in a chair just short of dead. I look normal, usually act normal, but I am far from even close to normal. I know it, but I'm not sure even my wife fully grasps how messed up I am every single day of the week. She sees someone who can think, talk, and still reason almost as good as before. So she naturally thinks I can control the things I do. I guess the differenece I'm getting at is really between early, mild, and early moderate Alz, and then the later stages. During the earlyier part, we can function quite well most of the time. And we we mess up, only we know it. People can tell when we speak badly, stutter, forget in mid sentence, can't reall things, and such, but they everybondy has some of these parblems to some extent. The difference between us and everyone else is huge, huge, huge, and that is what I think people without Alz really don't get. I don't think the doctors get it either, but maybe some do, just like some caregivers do. I never said that no caregivers get it. Bob, I certainly wasn't trying to start anything with what I said, so why can't we just leave it at that. Just saying. Have a nice day and upcoming weekend. My wife just left to fly off and see the grandkids. I could not go, because I go absolutely crazy when anything at all happens to disturb the peace and calm I try to keep surrounded myself with,, and grandkids are really good at being grandkids. It is absurd to think a small child could ever understand why they should be quiet and calm around their grandpa, I'm talking 2 years old here, not older kids. So I say home, because something truly bad might happen. Now that truly sucks, let me tell you. Take care.
llee08032
Posted: Thursday, February 11, 2016 8:25 AM
Joined: 5/20/2014
Posts: 4408


Geez Bob,

Was this really necessary? I am not getting this...God forbid we have just a quiet conversation amongst ourselves about not being understood. I don't understand how it feels to have cancer. Can't that just be okay? 

My loved one's are trying their best to understand and support me and  I am so proud of them for that! But they cannot understand me like Iris can or alz+ and Bill can. 

Unfortunately, some of the boats on this board are leaking faster than others. The ship never able to return to the shore. 

alz+ started a good post the other day that was deleted by the moderators. Her honest attempt to deal with a sensitive issue that could impact us all was quashed. Both Bill and I responded to the post. We were all appropriate and trying to come up with solutions. I feel like no one has any faith in us to try and work things out and at the same time be supportive to someone needing our help. 

Why is there no faith in us to deal with a very real and scary problem that could impact us all someday? It cannot be denied or overlooked all the good brought to the to the board by us. Where is the trust that we could take our present experience here on the board and turn it into a learning experience for all? 

I so want to be treated like an adult today. Who here understands that statement better than anyone else? My people on this board that's who. My people are all you PWD. We have to be here for one another and take each others "all" including the bad with the good. I love my people! They never fail me or fail to amaze me with their wisdom, their compassion and their zest for life and living. I take all. I love you ALL...


llee08032
Posted: Thursday, February 11, 2016 8:31 AM
Joined: 5/20/2014
Posts: 4408


If I cannot express love and compassion here amongst my people w/o feeling like I'm selling someone else short or fearing that I'll put someone on the defence...what is the point of all this? 
Be Strong 2
Posted: Thursday, February 11, 2016 2:33 PM
Joined: 12/14/2011
Posts: 1751


Guess I'll just say, "I'm sorry to have offended." Nothing of the sort was meant that way. Like I said, I hesitated to reply. Now, with that, I'll bid you all adieu. 

Remember, we're all in the same boat; and the darn thing leaks!

 Bob    


sandyjm
Posted: Thursday, February 11, 2016 2:55 PM
Joined: 4/25/2015
Posts: 406


Iris,

 Thank You for sharing your heartfelt feelings. I admit it... I can not imagine or "get" where you are at....but do appreciate you being here and allowing me glimpses ...you and many others have helped me learn....learn ways to be the kind of caregiver my Mom wants and needs.

Regarding post by alz+ about dementia being an adventure in consciousness....that is a truth that I have become aware of....and surprised at . So many moments to be treasured...if I , as a  CG , remain open to them.

Thank you for inviting others to keep posting ( both Pwd and CG)...I look forward to more from you and others also.

Sandy


abeautifulwaytolive
Posted: Thursday, February 11, 2016 3:42 PM
Joined: 8/17/2015
Posts: 86


Pwd can't genuinely say ANYTHING without someone stepping in taking the spotlight from the issue (dealing with the disease) taking it as if to say pwd are bashing us. I love hearing from people with this disease, because although I can't truly understand (because I haven't been there) it gives me such a deep understanding and insight, as close as I think I will get without actually experiencing this disease.

Thank you so much for just being and fighting and waking up each day. It is a treasure to hear from you all.


BillBRNC
Posted: Thursday, February 11, 2016 6:27 PM
Joined: 12/2/2015
Posts: 1018


Beautiful, I true appreciate your comments. Thanks you from this PWD.
abeautifulwaytolive
Posted: Thursday, February 11, 2016 7:58 PM
Joined: 8/17/2015
Posts: 86


Awe thank you bill
Iris L.
Posted: Friday, February 12, 2016 12:49 AM
Joined: 12/15/2011
Posts: 18342


I posted this thread for myself, for my fellow patients, and for the lurker patients.  For myself, to come to terms with a fact--that some people just don't get it, and won't get it, and I have to accept that, and not keep being surprised when they don't.

For my fellow patients, it's confirmation and agreement, that the outside world just doesn't get us.

For the lurkers, who wonder why their families don't understand them, and don't support them, it's not you, it's THEM.  They won't understand you, unless they undergo a long learning curve.  And perhaps, never.

Some people do get it.  They are few and far between.  Why are they so few?  I don't know.  But if I keep butting my head against the wall, hoping and waiting for other people to get it, all I'll wind up with is a massive headache.  And they still won't get it.

Patients, we are in the midst of a sea of CLUELESSNESS and HURTFULNESS.  This is how I have come to see our lives.  The only way I can survive is to put up barriers to the outside, and live in my own world.  Even on this board, on my own thread, I am hurt by comments.  So be it.  I will survive.


Iris L.

 


Iris L.
Posted: Friday, February 12, 2016 1:36 AM
Joined: 12/15/2011
Posts: 18342


I lost my focus as to why I posted this thread.  It was about being encouraged and uplifted by members, such as Alz+.  But I got misdirected by responding to non-encouraging and non-uplifting posts.  


I got distracted.  My thread is about how I need encouragement and uplift.  Not be be brought down.  The negativity is all around.  I must build better barriers to protect myself!  My fellow patients, I suggest you do the same!


Iris L.


Lisa428
Posted: Friday, February 12, 2016 11:28 PM
Joined: 12/5/2011
Posts: 795


Hello to Everyone,

Do to my circumstances at home I have be unable to spend a lot of time on the boards.  I am so sorry so many people are in such emotional pain!

We need to try to remember that EVERYONE is different. PWD each one of us is at a different level of our illness.  We stated that "when you have seen one person with Alzheimer's Young-Onset, then you have seen One person with YOAD."  The same goes with All AD patients.  We are all different people with different backgrounds, upbringings, and educations. North, South, East and West.  Speaking English and many others languages.  Raised with different family traditions and customs and religions. Different life experiences as well as health issues.

The same goes for our Caregivers, Spouses and loved ones.

None of us can stand in each others shoes and say we KNOW how it feels.  It's

 

 

 

 

 

 just Not possible.

I am a PWD (Young-Onset AD). I struggle daily with my AD.  I have good days and bad days.  I know I am declining. My Sister had IDDM and is on an insulin pump.  Very overweight with back problems. I believe she has some form of dementia.  She and I take care of my 94 year old Father who has had 2 strokes.  My daughter suffers from mental illness and immune deficiencies. My BIL has had 2 heart attackes


Lisa428
Posted: Friday, February 12, 2016 11:50 PM
Joined: 12/5/2011
Posts: 795


Sorry to all.

I messed up my post and didn't remember what to do to fix it.

P.S. Can we please unite all the people and forums on this discussion board.

We all share common goals. We want more research for better, affordable drugs.

We want more support groups for both PWD and Caregivers.  We want more HELP for us and our caregivers.

We are all scared traveling this unknown road of AD/Dementia. My faith and spirituality help me.

PWD don't try to multitask because it's a disaster. Get lots of rest and sleep.  Take your meds per MD orders, daily exercise is important, Do brain games and other things to stimulate yourselves, eat well - lots of veggies and fruits- try the mediterrenaen diet. Try to do something fun everyday. Give and receive HUGS daily.Smile, take some good slow deep breaths. And LIVE!

This illness is tough on everyone including people with the disease, people who are caring for people with the disease, Loved Ones, family and friends.

Let's all take a couple of slow deep breaths. Live, love one another, and forgive.  Then we will have some very peaceful times.

Peace and Hope to All,

Lisa

 


Mimi S.
Posted: Saturday, February 13, 2016 9:49 AM
Joined: 11/29/2011
Posts: 7027


Amen,Lisa
Iris L.
Posted: Saturday, February 13, 2016 1:30 PM
Joined: 12/15/2011
Posts: 18342


Welcome back, Lisa.  I noticed you have not been on the boards as much as before.  I hope things will calm down in your life for you.


Thank you for responding to my thread.  Actually, it was not about pain, but about encouragement.  It is so important for me to receive encouragement and positivity and to read uplifting posts, and I appreciate those posts.  


Have you read Alz+'s latest posts?  A couple were on the Spouse/Partner board.  I found them inspirational!


Iris L.


Michael Ellenbogen
Posted: Saturday, February 13, 2016 3:11 PM
Joined: 11/30/2011
Posts: 4384


Sadly most do not know or get it. The reason for that is lack of education and someone actually reaching out to us in order to create groups that will lead to better education. Today most find out about issues as they have to face it and need to react. There is a big difference in reacting and planning. We need much better planning. Unfortunately you cannot blame the people as the organizations like AA fail to do the proper education.

 


Iris L.
Posted: Sunday, February 14, 2016 1:06 AM
Joined: 12/15/2011
Posts: 18342


Welcome back, Michael!  How was your vacation?

Just now I logged on and was confronted by a disturbing email on a disturbing topic.  I was in a great mood until now.

My thread was about my feeling happy about Alz's posts and other uplifting posts.  I've had nothing but negative responses.  


Iris L.


mish
Posted: Sunday, February 14, 2016 10:14 AM
Joined: 6/21/2012
Posts: 439


Iris, I feel your frustration, I recently had a new " brain doctor " as I call them (old one left) and he told my dad and myself that it's impossible to have good days and bad. Because If you really had dementia they are all bad and you have no days better than the last. While I kinda get his point that yes, I will never be the way I was so yes in that sense they are bad.  Some days my head is clearer than others; unfortunately, those days are getting less and less. Then he tells me when my dad discusses his concerns about me getting worse since the last time and this is what he is noticing, the guys actually says , and no joking: " well she can continue to deteriorate or ( and he pauses, as he pauses my dad and I lean forward thinking something of importance is coming out of his mouth)  and he says 

Or ..not" My dad and I looked at each other like what the ???? 

My dad says excuse me? The MD says "well she can continue to go downhill or she will gowndown hill for a bit more than stop, no one knows. My advice is to eat right, exercise, get out and  socialize, and take care of yourself. ".  I felt like I was on captain kangaroo or Mr Rogers lol, so I said "do you want me to eat an apple a day too?" He looked at me puzzled, like huh? My dad just looked at me and whispered smart a**. But I was like seriously? That is all you got?? The boards are better than you. But since I have no choice until they find a replacement for my former brain guy I'm stuck with this one. To top it off he is the best neuropych guy in area. I did remember his name though and I didn't know why but something in the back of my head kept at me like I knew him somehow. I ended up looking him up and then I asked my friend and former supervisor and I was right, I did know him: I used to work with him at times when I was a therapist ,he is also head of psych at a psych hospital where I used to pink slip alot of clients and I was in many meetings with him and thought he was an arrogant useless MD with no bedside manner, he just signed scripts. Weird how the world works. The circle of life.

Sorry I went off on a tangent there but point was that unless you do actually have this disease you really don't know, you can empathize like the caregiver said  and side note: I thought this was our board and our haven to say whatever we wanted???  But unless you have it you DONT know.

Sorry about the rambling 

And happy valentines day Iris and to all 


Mimi S.
Posted: Sunday, February 14, 2016 11:31 AM
Joined: 11/29/2011
Posts: 7027


Wow Mish, I am so sorry you are stuck with such a jerk. Too bad you aren't in NYC, I'd refer you to my guy. 

More later

 


Unforgiven
Posted: Sunday, February 14, 2016 12:58 PM
Joined: 1/28/2013
Posts: 2659


Welcome back, Michael.  You were nice and warm, while the midwest is in a deep freeze.

Anyway, no one knows the future, so it's a good rule of thumb to have plans in place for every worst case scenario and then hope to be pleasantly surprised.  That would include keeping on good terms with and having frank talks with the family members on whom you may or may not have to rely.  If it's your spouse, have a good long talk and invite them to read these boards.  If it's your kids, have an even longer talk about plans A and B.  Making a video sure wouldn't hurt.


Veterans kid
Posted: Monday, February 15, 2016 12:07 AM
Joined: 10/17/2014
Posts: 1239


Iris,

Thank you for this post.  I peek over  rhe wall for a few reasons. One is because I care and the other in these two go hand-in-hand, is you are absolutely correct!  I don't have early onset so there is no way that I can completely understand so I am very thankful for you and the others that do post that may be able to give me a more insightful glimpse into the world that my dad is in. 

 This may be a little off topic, but in the lines of those who don't get it, the social worker for our hospice is probably in the wrong profession. I've been trying to work with her to be  able to have dad go to a local nursing home for five days of respite. The last phone call I had with her she said to me well this one nursing home won't take your dad because he won't follow directions.  Seriously?? I replied back to her, it's not that he won't follow directions, he is in mid to late stage six of Alzheimer's and unfortunately he is not able to retain information and follow directions.   I'm thinking to myself this is the person who is supposed to be helping the hospice patient and the caregiver? 

 Thank you Iris for being you and for sharing your journey with others with early onset, with caregivers, with all of us. It really means a lot and I am very happy and thankful. I hope this finds you having a good night and I'm sending an endless supply of hugs your way

Vk


Michael Ellenbogen
Posted: Monday, February 15, 2016 6:45 AM
Joined: 11/30/2011
Posts: 4384


 Mish, I could see both sides of this. It could be the doctors way to shock you in to getting your life in order while you still can. Keeping mind they are doctors not good at communications as many are very smart but lack the communication skills. They don’t teach that and that takes a certainty type of personality. So people may look at it and beat around the bush and most patients would not get it and be in denial. Hell some of those doctors wont even tell you because they know there is nothing out there that can help in their opinion. As far as you father he is like the many who have the hope factor. Nothing wrong with it but because of what is being said in the media that leads to it. I even here many with AD who are in denial and there is no changing their mine as they think they are beating it with some remedy they are using. I so wish that was true. It will take at least another decade sadly to say before people will know how to treat us the way we should be treated. An let’s be realistic it does go downhill from here on. That does not mean we should not try to live life to the fullest.

 


His Daughter
Posted: Wednesday, February 17, 2016 12:44 AM
Joined: 6/25/2014
Posts: 2270


Iris, 

I have read this thread with tons of questions and curiosity.  I believe you are 100% right that most people don't get it.  I've seen this over and over again in the medical community!  

But here's one thing I wanted to mention, even though I don't have dementia and I could only guess at how my dad was feeling, he was the one person that I always felt I understood throughout this disease process.  Seriously, my dad was still there.  He was still the same person, with the same philosophies,  the same man I had known for 59 years.  (Oddly, the people I didn't get were the MIA siblings, and an odd girlfriend.)  But Dad?  Nope, I still got him all the way through!!  He was my father and my friend first, and a person with AD a distant second.  I was His Daughter, long before I was his caregiver.  But Iris, this disease never changed the man I knew.  It took away many of his skills and abilities, but never his innate personality.  

So surround yourself with the people who GET IT.  More important surround yourself with people who GET YOU, and want to support you to the bitter end.  Your life philosophies, your character and your will.  People who want to treat you as a person first, and a patient second.  You've got this wonderful group of people to help!  

(Hope I didn't change the direction of your post.  I know it's hard for us caregivers to truly understand what the PWD must be feeling, as we have never been in those shoes.  But many of us really do try.  If ever I got confused with my dad, I just asked him to help me understand, and he always did a great job.)      


llee08032
Posted: Wednesday, February 17, 2016 6:34 AM
Joined: 5/20/2014
Posts: 4408


But here's one thing I wanted to mention, even though I don't have dementia and I could only guess at how my dad was feeling, he was the one person that I always felt I understood throughout this disease process.  Seriously, my dad was still there.  He was still the same person, with the same philosophies,  the same man I had known for 59 years.  (Oddly, the people I didn't get were the MIA siblings, and an odd girlfriend.)  But Dad?  Nope, I still got him all the way through!!  He was my father and my friend first, and a person with AD a distant second.  I was His Daughter, long before I was his caregiver.  But Iris, this disease never changed the man I knew.  It took away many of his skills and abilities, but never his innate personality.


His Daughter,

We rarely hear that we and the essence of our person will still be there! The so and so's are "not there" or "are not so and so anymore" really burns and stings us. I cannot imagine how hurtful for PWD to overhear their not being there and not being able to express that you are still here or still there. This really get's me. Thanks for your refreshing post.


His Daughter
Posted: Wednesday, February 17, 2016 12:23 PM
Joined: 6/25/2014
Posts: 2270


llee,

You are so welcome.  In fact, I wrote about this in one of the final chapters of my book.  Here's what I said:

And the other issue that I thought about tonight, was the question I had posed several years ago, “Would Dad retain his personality throughout this long process of disease and death?” And now, I honestly could answer that question. And the answer was, yes. Throughout this entire disease, my father always maintained his innate qualities. While it goes without saying that Alzheimer’s had obviously taken away many of his abilities, he still remained absolutely true to his character. He never whined, he never complained, he smiled when he could, he appreciated everything that was done with and for him. I saw him attempt to ask questions or solve problems. I saw him put forth effort, he did the very best he could, every... single.... day. Yes he was very sick, but he was still the man I always knew. And there was no way, for me to be more proud of him. 



jfkoc
Posted: Wednesday, February 17, 2016 1:28 PM
Joined: 12/4/2011
Posts: 21118


I would like to ditto what his daughter has said. My husband and his personality, both the endearing and the occasionally not so endearing parts, the whole time he was ill and he was ill a long time.
alz+
Posted: Friday, February 26, 2016 5:28 AM
Joined: 9/12/2013
Posts: 3608


Iris L. wrote:

I lost my focus as to why I posted this thread.  It was about being encouraged and uplifted by members, such as Alz+.  But I got misdirected by responding to non-encouraging and non-uplifting posts.   


 

I got distracted.  My thread is about how I need encouragement and uplift.  Not be be brought down.  The negativity is all around.  I must build better barriers to protect myself!  My fellow patients, I suggest you do the same! 


 ******************

Iris L. 

 

You got distracted by someone still "paddling a leaky boat". He "meant well"  and while I would not have finished reading what he wrote, you did out of automatic courtesy. Then that distracts you from what you wanted to discuss!
I want to say, "Get the boat fixed, get a different boat, swim to shore! I do not want to be in the same leaking boat you are in." but then I see this sinking boat helps this man in some way so...back to YOU. 

To stay here and give as much as you do, you may have to development techniques to ignore this type of thing. 
I practiced by reading comments where people argue at other websites over everything and insult each other. I learned to not even finish the ones that just want to make internet hay to feel strong, right, powerful. Stupid waste of time.

Just like you wrote, you might need to build up those muscle. You  might need a break. You might need more real life contact away from boards.

 I want you here and so do 97% of people who come here. 

when you have days when you get distracted easily it is too much to ask of yourself to be on defense. 
How to feel you can say what you want and not have to defend yourself. It is ok they might not ever understand. I only need 2 major people to get it in my life.

Not even the doctors get it! Oh well. Hope you get some time off, clear your head, find some funny stuff to laugh at.  see you when you want to return.
you are loved and needed here. 

ps:  having my hours of thoughts and heart searching posts  get shit canned  does hurt but there is more to say and I don't want to lose my sense of direction because someone disapproved, boom it's gone. Well, there is more where that came from. 
 Thanks a lot for saying you got something out of my thought experiments. Now THAT I will remember!