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how can I get husband and mother to face that I have dementia
mish
Posted: Tuesday, January 19, 2016 1:13 PM
Joined: 6/21/2012
Posts: 439


I was dx about 6 years ago and my mother and husband to this day are in denial. I have tried family meetings, suggested coming to Dr. appts. with me, support groups, readings, counseling, my father has talked to both of them tons of times re. the fact that they need to face it and learn about it because they are doing me more harm than good, mom has gone once to md yet stayed in waiting area. Her stance is pray maybe it will go away, and Im like okay bubble bette that will happen. What makes it harder and drives me nuts is they both constantly interrupt me when speaking, so there goes that thought. Again, spoke to then numerous times and so has my dad and brother. Nothing changes.  they both refuses any interventions or readings saying "its too depressing" and Im like its too depressing to read? Try living it. Its gotten to the point where my patience is running thin,  I am getting worse and they are acting like nothing is happening,  yet they are making my stress increase so much that I find myself snapping at them sometimes. Yet my husband says oh I know what this is, its sun downing, (he learned that because I asked him not to give me  list to do or talk about stressful things when Im laying down relaxed getting ready for bed.) who wants to hear "babe, can you call the landscaper tomorrow  and tell them to come by and....." really? 1- are your fingers broken? and 2- I am half asleep?  and him and my mom constantly repeat themselves to me. I tell them I have dementia, Im not stupid I still have a high IQ  and a P.h.D.. they treat me like a child. Im really going crazy with no support from either of them, the only support group in RI is 40 minutes away via highway and I cant do that. I apologize for venting like this, I know I havent been on for awhile and I do miss you. Hello to Iris and my friends. I just need advice. Leaving isnt an option either. thanks for letting me vent and hope all is well with everyone.
BillBRNC
Posted: Tuesday, January 19, 2016 3:21 PM
Joined: 12/2/2015
Posts: 1018


Mish, I new to all this. I've had symptoms for 6 years, but I thought they came from heart failure. Now I know they are coming from Alz. I'm only 65, and I too have multiple grad degrees, but I'm now retired. My wife is having a hard time understanding, as she finds it hard to believe someone my age can have this type of problem, even though my Mom had early onset Alz. We haven't told our friends yet, so they still think I'm having cognitive issues due to my heart. The one friend I have told is a physician, and he doesn't believe I have it. He too thinks only old people get it. Bottom line: I have no real advice or suggestions, but I wish you luck. I've decided to go to a major medical center to get assessed again by at a memory assessment clinic. My hope is that this will help my wife better accept and understand. She is a wonderful person, who just wants to believe all will be well. Good luck.
The_Sun_Still_Rises
Posted: Tuesday, January 19, 2016 4:48 PM
Joined: 7/24/2015
Posts: 3020


Hi, and welcome to the forum.  I am so sorry that you are going through all this.  I am sure many will chime in on how to help cope with all this.  I am going to say, you found us and that is a huge start. 

Some families are so great, but for many of us our families are not so great...so you are not alone in that. 

The thing to realize, and it comes in time, is that the world really doesn't understand what it is like to live with any of the dementias.  And people with dementia have been trying to tell people for years, but are only now starting to get heard...and even then only be a small select few who can actually get out from their ego long enough to really listen. 

So part of it is your situation, and part of it is just systemic and inherent to the situation of having a dementia. 

What I can offer you, beyond here, is that there are online video groups being run by people with dementia for people with dementia.  They are a great place to meet other people and form friendships and get support for where you are at. 

http://www.dementiaallianceinternational.org/membership/

I think we all face the issue of denial from our loved ones and caregivers.  It represents a HUGE barrier to care and support.  I am entering stage 6 and I make so many mistakes with my meds (and I am type A and had been so on this with adaptation after adaptation) and still no one around me gets (even though the worker chart tells them to check my meds every day) no one gets that they need to help me. 

I think sometimes they wait for the big bad something to happen before they really see...but I find that personally very sad because I have said all along and done so much to prevent the big bad from happening.  Even when I got lost, when a receptionist said I could go...when I was suppose to wait for transport...no one woke up. 

Inherent in this journey, for some of us, I feel is a need to do for ourselves what we can.  No one likes it.  We shouldn't have to.  And yet, having to makes us better for it.  I also find, the more I do for myself, the more they want in too...so there may be a secret or key there. 

Anyways, Hi, and welcome...nice to meet you.  I...and the rest of us are here for you. 


mish
Posted: Tuesday, January 19, 2016 5:11 PM
Joined: 6/21/2012
Posts: 439


THank you and nice to meet you both, I have been away from the boards for a bit but this as been my saving grace since I was dx and on.  Iris  has been an angel as well as so many others . thank you so much for your help. I know I can't change people or the way they think but I hoped that since my family is so close and educated maybe the denial stage wouldn't be so long, i am realizing it might not be a stage , so to speak. I think they don't want to loose the facade of the"mish" that they bragged about and was able to show others pictures of because of stints in modeling etc. Now they can't brag about the one who did this, that and the other. Maybe it has nothing to do with me but them; however the affects it has on me is detrimental; and no amount of money or connections can change that. That makes me sad that they can't see that, I need love and support not gifts or money.
Iris L.
Posted: Tuesday, January 19, 2016 6:09 PM
Joined: 12/15/2011
Posts: 17580


MISH!!!  It's great to see you again!  I think about you often.


Did you know I went to Rome in 2014?  I had a great time, seeing the sights and visiting the Vatican.  I also went to Israel that year, and again in 2015.


Personally, based on my own experience, I am not in favor of disclosing too much.  Disclosing should be on a need to know basis.  We must all accept that we cannot change anyone or make anyone think a certain way.


We cannot change another person, but we can teach him how we want to be treated.  Whether or not they learn...that is to be seen.


It is hard enough for us to change our own thinking and our own behaviors.


Lack of support seems to be a common problem.  I do not expect support from others, so, since I do not receive it, I am not surprised or disappointed.


You want support.  How do you want them to support you?  I do not do chores or errands randomly.  Everything is written down on my lists.  I make monthly lists and weekly lists and daily lists.  If it is not written down, it likely doesn't get done.


Have you made your legal preparations, such as POA?  You might do better to focus on that person for support.  The others will come along as time goes on, and situations change.


I hope you keep posting, mish.  We are your online support group.  We are always here.


Iris L.




Mimi S.
Posted: Tuesday, January 19, 2016 7:01 PM
Joined: 11/29/2011
Posts: 7027


Welcome back Mish?

What were the conditions of your original diagnosis? How do they compare with The Alzheimer's Action Plan by Doraiswamy and Gwyther. Ask your librarian to get you a copy. If yours was inferior to that, perhaps Bill's idea of another diagnosis at a major center would be something to think about.

It is so sad that younger folks experiencing symptoms have such a hard time getting a good diagnostic work up.

And try telling hubby that you know he doesn't like the diagnosis, but you need his support. What is his idea of someone with the disease?  Probably someone in end stage. Well, some folks may ave a dozen or more years before that.  And you have a lot of life you can enjoy ahead.

And what are you doing to be proactive in your own care? Are you familiar with Best Practices?


alz+
Posted: Tuesday, January 19, 2016 7:54 PM
Joined: 9/12/2013
Posts: 3608


MISH - lightening just struck my post and erased it.

what are people looking for to prove dementia? give them that. SOMEBODY please give them that. Come out with underpants on outside of clothes and 5 sweaters.

socks half over shoes, toilet paper trailing, hair wild and 3 pair of glasses, credit cards in a book in a refrigerator, park the car on the lawn, ruin the laundry and act like you don't notice.  what do they want?

my favorite book to share was Learning To Speak Alzheimer's which gave simple solutions to verbal communication with someone who processes slower - the only person who liked it already understood intuitively. I have shouted STOP! when my Mother interrupts me. She was no good with my Dad when he had ALZ either. oh well.

Even when crying my mother's response was to shoot me with a spit ball (she is 96 and healthy). My brother is rude, my husband does the OPPOSITE of what I ask him to do to help me, mimics my language, and makes all useful offers a year late and argues with me.

I want to be even more out of life, live alone again and just write when I can, walk with my dog, get help with food...

it is disrespectful and can be cutting. If we are able to say something then, we are faking, exaggerating, malingering, or whatever.

The "dead time" allowed between when something is said - the pause for reply -is less than 3 seconds. That's phones are off my list for the most part.

ps: RANTS are loved by almost everyone, I feel less a stranger in a strange land when someone lets go with some good and lengthy complaints for a change.


Iris L.
Posted: Tuesday, January 19, 2016 9:06 PM
Joined: 12/15/2011
Posts: 17580


alz+ wrote:

 If we are able to say something then, we are faking, exaggerating, malingering, or whatever.

 

 

 

 

Don't think that I haven't been through this.  I have.  But the people who treated me poorly are no longer a part of my life.  Or if they are, they no longer have the power to hurt me.  I took my own power back!  I will not be disrespected again!

Iris L.

llee08032
Posted: Tuesday, January 19, 2016 10:42 PM
Joined: 5/20/2014
Posts: 4408


Rant away Mish! Others just can't seem to believe what they can't see. There is no gaping wound, cancerous growth or lump or visible physical deformity or disease to show them as evidence. I do like alz+ ideas and have a great appreciation for the humor we have to find in order to survive the "I forget too's." 
Iris L.
Posted: Wednesday, January 20, 2016 1:08 AM
Joined: 12/15/2011
Posts: 17580


llee08032 wrote:
I do like alz+ ideas and have a great appreciation for the humor we have to find in order to survive the "I forget too's." 

 

 

Should we attack people with spitballs, like Alz's mom?  Tee hee!


I think we should focus on our bucket lists.  Time's a'wasting!


Cathy JM, one of the emeritus caregiver members, was told by a professional, that now, her job was to make her LO's life comfortable and easy and fulfilling and stress-free.  


I interpolated that advice to mean that my job is to make my own life comfortable and easy and fulfilling and stress-free.  I learn so much from the members here.  I do that, incorporate Best Practices, and work on my Bucket List.  My life is busy.


Iris L.



Michael Ellenbogen
Posted: Wednesday, January 20, 2016 8:28 AM
Joined: 11/30/2011
Posts: 4036


This is another support group and they also have one on one support. http://dementiamentors.com/


alz+
Posted: Wednesday, January 20, 2016 8:52 AM
Joined: 9/12/2013
Posts: 3608


thank you Michael. right words right moment - again.
alz+
Posted: Wednesday, January 20, 2016 9:01 AM
Joined: 9/12/2013
Posts: 3608


IRIS re: bucket list

I feel like I have been writing my bucket list wishes on pieces of paper and some one is burning them up. More and more those wishes are turning to ashes, having to be replaced with one lament - CAN I HAVE APEACEFUL END TO MY LIFE?

is it ironic if one has to fight for their peacefulness?

I truly think if Mish did some outrageous things without comment, people would start to consider they are not doing her a favor by pretending she can (and should) do more than she can. It irks me no end to be around people who minimize my difficulties and I do consider acting out what they seem to want to witness before they get this is freaking hard and then ends in helplessness.

I have enjoyed knowing about the stuff you do, your adventures, travel and how you keep managing through the difficulties and emotional pain from ignorance of others.

Michael's adventures also make me feel good. Kind of making peace with  what will not be, yet seem to be getting what was a life long search for healing. Go figure.

 


The_Sun_Still_Rises
Posted: Wednesday, January 20, 2016 9:41 AM
Joined: 7/24/2015
Posts: 3020


That has been my sole focus for the last few months in trying to write this damn Advanced Care Directive, how to ensure a peaceful death.  And YES, it is really odd that this becomes one's focus...but I also think is necessary evil. 

It isn't just deciding what you want...and then painstakingly writing it out...it is telling others and enrolling them in the idea of helping you achieve the best death you can.  NOT at all easy.

Anyways, I will share the bulk of it when it is done...if you are interested.


Pam Lee
Posted: Wednesday, January 20, 2016 1:09 PM
Joined: 1/5/2016
Posts: 3


 I'm 61 years old and in stage 4.  My neurologist dx me 3 years ago with MCI (Mild Cognitive Impairment) She told us it may progress into Alzheimer's. It has progressed very quickly to Alzheimer's.  My husband and I noticed changes before but we just thought it was normal aging. I had to quit my job as a office manager in dental office.  This was very difficult as I had worked in the field for 20 years. My father suffered from Lewy body which is a form of Alzheimer's.  And Grandmother has Alzheimer's. They both passed away.  So I was told that it often runs in families.  I was concerned that it might be me next. My husband is amazing he supports me in every way. He has never knew much about Alzheimer's as no one ever suffer with it in his circle of friends and family. My symptoms at this time are:

Repeating questions that I just asked. 

Forgetting things that I just did a doing it over again,  for instance taking my medicine and a second later can't remember if I took it. Often I have to check the garbage can to see if there is a wrapper in the garbage. I'm so embarrassed. 

Daily I do many things and can't recall doing it. Like taking 2 showers or brushing my teeth. 

Many times while talking with someone I can't pronounce the word correctly.  I know what I want to say but can't say the word. Very embarrassing. 

I call these days my "off days". I may have several days in a row that I am good. But I have recently been having anxiety and wanting to just stay home. I realize that I need to walk daily and keep busy. Even though some days are challenging I ever give up

Having this website has really helped me in connecting with others. Everyone here understands. Hopefully we can help each other.  

Take care and know you are not alone dealing with Alzheimer's.  Hope we can keep in touch.

Pam ( I use the screen name Pam Lee)  I often on chat rooms.





 




Iris L.
Posted: Wednesday, January 20, 2016 3:29 PM
Joined: 12/15/2011
Posts: 17580


Welcome to our online support group, Pam.  Are you on the memory medications?  I had all of those symptoms that you have.  They mostly have disappeared, since I began Exelon patch and Namenda.

Pam, please feel free to begin your own threads anytime, so that members can get to know you.  Your introduction may be overlooked as part of an ongoing thread.


I think we may be fighting something that just is not going to happen.  That being, understanding from others who are close to us.  Even here on these boards, the caregiver members, who are the most knowledgeable and caring for their own LOs, do not understand us, and can say the wrong things.  


They try to be empathetic, but they can come across as clueless and demoralizing.  For example, I say that I am having trouble organizing my home and my papers, due to my impairment in executive functions.  They say, they have trouble organizing, too.  It's not the same, although they insist that it is.  I say that I have trouble organizing papers in preparation of doing taxes, and other financial work.  They say, they have trouble with their taxes, too.  It's not the same, even though they insist that it is.  


They think that their difficulties are the same as having neurologic brain pathology difficulties.  It's the same as having people tell us that they have memory troubles and senior moments, too, when we talk about our own failing memories.  


If we do not receive understanding from these members here, who have spent years  on these boards and years in caregiving their own LOs, how can we expect our family members, who are novices, to understand?  


Shall we argue and persist to get our points across?  I believe this will just leave us more frustrated.  I cannot afford to be even more frustrated than I am by listening to clueless talk in the first place.


I have travel and adventures, but I have struggles, too.  Major struggles.  I am compensating, the best way I can.  But people do not see that.

 

I have just accepted that there is a huge disconnect between patient and caregiver.  I don't fight it.  I use the knowledge of the disconnect to motivate myself to make my own decisions, because I am aware that I cannot trust the outsiders to truly understand how I am functioning.

 

I am not saying that they are always clueless.  Just that some caregivers, whom I respect very much, still do not understand me and my impairments.  If they don't understand me, they don't understand you, either.  How much energy do you have to fight this lack of understanding?   I cannot take being demoralized, and I don't have the energy to fight.


Iris L.


The_Sun_Still_Rises
Posted: Wednesday, January 20, 2016 5:07 PM
Joined: 7/24/2015
Posts: 3020


Hi Pam and welcome to the forum.

You mention having off days and good days...this is common to Lewy Bodies dementia...just thought I'd add.

I am 47 and was just diagnosed in 2015, late into the progression...in December I began slipping into stage 6. 

What I found most helpful to me, was finding out that there was life after diagnosis...and figuring out again how to engage in life.

It is nice to meet you, and I look forward to getting to know you. 


alz+
Posted: Wednesday, January 20, 2016 6:25 PM
Joined: 9/12/2013
Posts: 3608


Hi Pam -

you are so fortunate you have a husband who supports you and who wants to understand.

One comment about good days bad days- I sometimes have a day when it feels like this is over and I am my old self. Sometimes more than a day. Then have had days that were unusually bad, not able to boil water, or understand what the clothes washer machine is.

Glad you are here and look forward to learning from your experiences.

 ps: I BOLD because of vision problems which quite a few other people have too, helps to read the fine print type. Not yelling! 

love and courage


jfkoc
Posted: Wednesday, January 20, 2016 7:50 PM
Joined: 12/4/2011
Posts: 20254


Dear Iris....I believe what you are saying but am heartbroken by your words. Please do not give up on us...Please do not run out of the energy it takes to educate us.

 

 


The_Sun_Still_Rises
Posted: Wednesday, January 20, 2016 8:26 PM
Joined: 7/24/2015
Posts: 3020


I not Iris, but I not give up on you (as collective whole) or our ability to at least begin constructing bridge between two worlds.  <3
Iris L.
Posted: Wednesday, January 20, 2016 9:03 PM
Joined: 12/15/2011
Posts: 17580


jfkoc wrote:

Dear Iris....I believe what you are saying but am heartbroken by your words.

 


Dear Jfkoc, this is my point.  Mish, the OP, feels demoralized because her family does not understand her.  I am saying, I am not going to allow myself to become demoralized by other people.  That is a reason for rejoicing, nor for being heartbroken.  


I have already spent much time, days, weeks, months, and years, being heartbroken by the misunderstanding and attacks from others.  I am NOT going down those paths again.  


The disconnect is real, and it is demoralizing.  Mish, Alz+, Ilee, to name but a few, complain about this.  I feel demoralized reading about their plights with their families.   They are not the only ones with unsupportive families.  I wish things were different.  But they are not.

 


Addendum:  The point I am trying to make is that the patient and the care partner often may look at the same situation from opposite eyes, and the care partner may inadvertently say things that are demoralizing to the patient.  That's just how it is.

 

Iris L.

 

 



llee08032
Posted: Thursday, January 21, 2016 7:23 AM
Joined: 5/20/2014
Posts: 4408


Iris wrote: They think that their difficulties are the same as having neurologic brain pathology difficulties.  It's the same as having people tell us that they have memory troubles and senior moments, too, when we talk about our own failing memories. 

I don't get that persons with a normal healthy brain compare what they see as similar problems to some of our problems and expect us to feel understood.  Persons with a healthy brain can plan, problem solve and work through their problems in ways that we cannot. It's like me telling a person with cancer that I can relate to their physical pain because I have some type of  physical pain also that I can take a tylenol for. You have to step outside of yourself and put yourself in the shoes of the other person to truly understand and have empathy for others. 

Honesty is a great place to start in trying to bridge the gap for me, that's someone saying, "I can't imagine or fathom what this must be like for you or how that makes you FEEL."

It's okay that you don't understand us. But at the least afford us the courtesy of honesty or an honest attempt at trying to understand. Throw on a pair of our shoes and see how the walking goes. Tread lightly but walk out in the light of the truth.



llee08032
Posted: Thursday, January 21, 2016 7:29 AM
Joined: 5/20/2014
Posts: 4408


Pam,

Welcome to the board. Thank you for joining us! We appreciate having you here and look forward to getting to know you.


The_Sun_Still_Rises
Posted: Thursday, January 21, 2016 7:54 AM
Joined: 7/24/2015
Posts: 3020


That is an interesting point Llee, I never thought of it that way.  If we use those comments as a starting place...we may indeed start to bridge the gap.  Great insight, thanks for sharing.  <3
Iris L.
Posted: Thursday, January 21, 2016 11:27 AM
Joined: 12/15/2011
Posts: 17580


Mish, are you still here?

Iris L.


mish
Posted: Thursday, January 21, 2016 11:52 AM
Joined: 6/21/2012
Posts: 439


IRIS!!!!!!!!!!my dear friend! I remember you going to a retreat, I dont remember if it was in Rome. anyway, did you like it? did you get to see any masses with Pope Francis?  tell me all. what did you think of Rome and the food? cant beat the food. expensive but good. anyway, as soon as I was "formally dx'd my dad and I went right to my lawyer and had all papers for everything drawn up, all wording is perfect and covered. (good to have a dad who is a lawyer to make sure your lawyer covered all) lol. anyway all that is covered. end of life poa, hoa, etc. covered.  my husband is most of the problem, I guess Iris, the interrupting me in the middle of talking kills me because my ppa, I grew up with a extremely close family (still are) that when we are together everyone talks at once and there could be 5 conversations at once, so in a way I am kinda used to it, but before I was able to rebound my thoughts, not a problem, now if someone interrupts, forget it, everything is gone and I am blank.  We all went on a family cruise and since my talks didnt work when I was talking and my brother or someone would interrupt I gave them the hand. after a bit they got upset because it was rude and then dad stepped in and gave it to them about how it is for me and how many times does he or I have to tell them? 

I know I cant change people and their "sense" of reality but it is impacting me negatively as i am not the old michelle.

sorry if that didnt make sense or I went on, my wording is getting harder.  so thanks for bearing with me and as always thank you for always being here. 

namaste

 

 


mish
Posted: Thursday, January 21, 2016 12:00 PM
Joined: 6/21/2012
Posts: 439


what is I get and was always an issue is I always looked younger than my age, so people look at me and think I am a bit younger plus I am and always has been into fashion so they do not think that someone that "looks like me" could have it.  I have tried to bust chops and dress like who they think might be on the streets or MI and that did not work it any way shape or form. Yet my personality is I do crazy stuff so that isnt out of the norm. lol. maybe that is why my mom prays so much lol. I just think society as a whole need to see a picture of a young "healthy" looking person and realize this is the new picture of dementia , its not your grandmothers disease anymore.  I dont know just a thought.
mish
Posted: Thursday, January 21, 2016 12:05 PM
Joined: 6/21/2012
Posts: 439


I have traveled all my life and still do but not as often. there was a dream trip that my parents took me on 2 or 3 summers ago, I spents 3-4 months traveling around europe. My husband couldnt go due to work. we have a home in europe so I love going over there but I used to be able to travel alone and now they wont let me.
mish
Posted: Thursday, January 21, 2016 12:09 PM
Joined: 6/21/2012
Posts: 439


GO IRIS< I agree and that annoys me about boards, caregivers and LO's really do not understand what we go through, they have their struggles and we have ours. I am not diminishing theirs just like I would not like ours to be diminished.
mish
Posted: Thursday, January 21, 2016 12:13 PM
Joined: 6/21/2012
Posts: 439


anyone up for a chat in the chat room?

 


Michael Ellenbogen
Posted: Thursday, January 21, 2016 12:37 PM
Joined: 11/30/2011
Posts: 4036


If you want to have a real conversation click on this link.

https://zoom.us/j/643278138


jfkoc
Posted: Thursday, January 21, 2016 12:37 PM
Joined: 12/4/2011
Posts: 20254


I believe that what is being said here needs to reach the other boards. I would like your permission to set up a link for this on caregivers/spouse,partner. I do not want to hi-jack Mish's thread and I do not want to encourage replies that add to the problem.

Other way to share the info????

edited to add.....after the recent post re caregivers I have decided to do nothing...why bother


mish
Posted: Thursday, January 21, 2016 12:38 PM
Joined: 6/21/2012
Posts: 439


well i went and no one was there so maybe another day. however I was thinking why dont we ever talk about different stuff, fun stuff/ goofy stuff to make us laugh, I mean really, everybody could use more smiles and laughter in their life? thoughts?
The_Sun_Still_Rises
Posted: Thursday, January 21, 2016 5:58 PM
Joined: 7/24/2015
Posts: 3020


jfkoc wrote:

I believe that what is being said here needs to reach the other boards. I would like your permission to set up a link for this on caregivers/spouse,partner. I do not want to hi-jack Mish's thread and I do not want to encourage replies that add to the problem.

Other way to share the info????

edited to add.....after the recent post re caregivers I have decided to do...why bother

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

Hi Jfkoc,

What she describes here...is what Alz+ describes here, is what I often describe, is what many people with the disease describe in other places.  The Alz Asso only gives statistics...how many people with disease alone or on own...of the 5 families that care for someone, 4 fall part...or something like that.  As does Teepa Snow. 

Rather than share people's personal stories and open them up to caregiver hostility and maybe attack (let us not forget that happens here)...maybe just share in generalities, your perspective how it is, that many of us do not have adequate supports??? 

Of the people with dementia, only some care to help raise awareness.  Same of caregivers, of the caregivers, only some care about what is happening for others...and of those, only a few care for our perspective...and they generally come over here and see us for themselves...like you do. 

In Feb, I will be starting a video group discussion...it will be topic discussion...but hopeful we cover many these things.  It will be open to all...and it would be great if you wanted to join.  One topic will be what people with the disease really need from caregivers. I do hope to record them and post youtube...then all can see forever after what say there...but may it be we get one step closer to bridge two worlds.

BillBRNC
Posted: Thursday, January 21, 2016 6:11 PM
Joined: 12/2/2015
Posts: 1018


I don't know if I can say this right, but I hope everyone understand I mean well. Asking about the gap between the caregiver/family and those with Alz, and why each group doesn't understand the other well enough, is answered in some way by looking at how few Alz people post on the Alz person boards versus how many post on the caregiver boards. The fact is that there are few of us Alz folks who can still communicate, while there are thousands of caregivers taking care of the Alz folks who can no longer even find this board, much less type something on it. The difference is so huge that it isn't possible to even think about it clearly. that's just the way it is with Alz. Those of us are here for as long as we can be here, which for most isn't all that long. The caregivers are around until and even after the end. I'm feeling a little down today. I got in a really bad mood when I read the junk from the psychiatric association saying that Alz is a mental illness. Talk about so-called experts not knowing which end is up, but they sure know how to make a case for paying them a bigger piece of the money pie. With friends like them, who needs enemies, at least that is how I've been feeling today. Hey, we're supposed to get two feet of snow later tonight and through Saturday. Now that is some snow for the NC mountains.