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Dumb Q: Who is Teepa Snow?
BillBRNC
Posted: Saturday, January 7, 2017 7:46 PM
Joined: 12/2/2015
Posts: 1018


I've seen her named mentioned many times here, but truthfully I haven't read any of the discussions about what she says and does...my fault I know. I also know she is somehow associated with Duke University's dementia program. Anyway, my wife is going to a seminar for the local medical folks (they get professional credits I think), and the program is called Helping Throughout the Journey of Dementia. The program looks to be good, but I really don't know. My wife is a family physician who has thus far not focused clearly on the caregiver aspects of her new life. She is still in basic denial, although she knows and fully accepts my diagnosis and what it means, but she just can't bring herself to think about it much. She has been getting much better over the past 6 months or more, but she still has a way of making things worse instead of better when I go off on a behavior bender. She also plans to take my college professor son to some or all of it so he can learn something. Anyway, I hope this Teepa Snow person is good, because my wife will pay close attention to a fellow member of the medical community from Duke. So, is she good or bad for those of us with disease who need informed caregivers? Thanks.
Agent 99
Posted: Saturday, January 7, 2017 8:18 PM
Joined: 6/7/2013
Posts: 2166


Teepa Snow is the BOMB!!!  She is great for caregivers and for LOs because she teaches caregivers methods that can improve communication and caring therefore great for LOs too.

She is an occupational therapist who has specialized in dementia.  THere are many youtube videos, some short and some long, that shows her doing her education.  She is the Suze Orman of the dementia world!

I wish I had the opportunity to see her live during my care concierging days.  THe youtube videos were a great resource.

I can copy some links if you want or if you google, Teepa Snow youtube, many should show up.


Iris L.
Posted: Saturday, January 7, 2017 8:27 PM
Joined: 12/15/2011
Posts: 18368


I didn't know that she was at Duke University.  Here are a group of Teepa's videos.  She is all over youtube.

https://m.youtube.com/channel/UCJFLrjBJK8WKPwGAA_JcMVw


Iris L.


BillBRNC
Posted: Sunday, January 8, 2017 7:12 AM
Joined: 12/2/2015
Posts: 1018


Thanks for the responses, particularlaly are the responded are folks I really respect here. I thought I remembered her name as being one of the good guys for us PWDs. I'm going to encourage my wife to find a way to talk with her over lunch or whatever. My wife has a way of making close friends fast, so I hope she works her magic here. Thanks again. Bill.
Mimi S.
Posted: Sunday, January 8, 2017 8:03 AM
Joined: 11/29/2011
Posts: 7027


Neither did I know she was from Duke.  

Also from Duke are Doraiswamy ad Gwyther,  the authors of The Alzheimer's Project, great for learning about what a diagnosis must consist of and other things about dementia that newbies should know about.


jfkoc
Posted: Sunday, January 8, 2017 11:05 AM
Joined: 12/4/2011
Posts: 21139


she is a delight, knows LBD and a true believer in non-medical treatment of symptoms....have your wife google Teepa LBD. 

I doubt that your wife will do as much anticipating as you are doing and that makes for a good balance...


The_Sun_Still_Rises
Posted: Monday, January 9, 2017 9:11 AM
Joined: 7/24/2015
Posts: 3020


Teepa Snow is an Occupational Therapist who is REALLY good working with us dementia....a dementia whisperer if you will. 

She knows all the tips and tricks dealing with us no make us combative, and get our compliance....she knows how approach us, talk us, undress us, feed us. 

She is currently touring the country training caregivers at places and personal caregivers, certifying them.  She sell books and videos.  But best of all....many her ways, tips tricks are FREE all over YouTube.

Dr. Allan Power, is in many ways, like Teepa....he give lectures, his videos also widely available on YouTube....he discuss the intellectual doctor side.  He spent much time talking people dementia (there a phrase in disability circles, "Nothing About Us Without Us"), Richard Taylor and he were good friends....he learned from us....and he applies the medical side (which you wife would really like as she a doctor). 

They are the only 2 non-dementia people that are (as far as I know) 100% approved of by people dementia.

<3


jfkoc
Posted: Monday, January 9, 2017 10:54 AM
Joined: 12/4/2011
Posts: 21139


Is there a reason you did not list Naomi Feil?
BillBRNC
Posted: Monday, January 9, 2017 2:00 PM
Joined: 12/2/2015
Posts: 1018


I not really sure Teepa Snow is affiliated with Duke. I saw somewhere that she had a clinical practice at Duke, but I see from her web page that she apparently has her own outfit for training and speaking. Regardless, she apparently knows a great deal and is well thought of by the people here. I really can't wait to see how my wife responds to her program.
The_Sun_Still_Rises
Posted: Monday, January 9, 2017 2:50 PM
Joined: 7/24/2015
Posts: 3020


It helps watch her videos....and then you will know for you self, Bill.

https://www.youtube.com/watch?v=AFKACRqNJFE

You should just be able click that link and go right her video youtube.

<3


grandmalynda
Posted: Monday, January 9, 2017 10:36 PM
Joined: 12/3/2016
Posts: 374


I have seen many of the Teepa Snow videos and find her to be very knowledgeable about our needs.  I'm trying to get my husband to watch, hopefully it will help him understand more.

--LYNDA 

 


BillBRNC
Posted: Tuesday, January 10, 2017 6:00 PM
Joined: 12/2/2015
Posts: 1018


Sun, you are wise and wise can be. Yes, I too hope my wife listens and talks with Teepa Snow. I have impressed on my wife the need to be early, both to have a chance to talk with Teepa and to make sure she gets in. All of this is because of what you and others have said about her. Teepa seems to talk about the real deal, as opposed to the test book junk. At least I hope so. Anyway, I always like to hear from my Sun shine. Bill.
Andy59
Posted: Wednesday, January 11, 2017 5:02 AM
Joined: 12/30/2016
Posts: 75


I'm very new to all this, and I have already watched several of her videos, as has my wife. She has learned much from her, and will no doubt watch all of her videos.
The_Sun_Still_Rises
Posted: Wednesday, January 11, 2017 6:24 AM
Joined: 7/24/2015
Posts: 3020


I know the tendency think of them in terms of "public figures" however, these two are both regular people and are readily assessable the dementia community....you can friend them on Facebook and message them like regular people.  

<3


Iris L.
Posted: Wednesday, January 11, 2017 12:53 PM
Joined: 12/15/2011
Posts: 18368


Michael, where are all of these people?  Are they only in the dementia world, or are they in the depression/psychiatry world, also?  The reason I ask is because I was treated so badly when it was thought that my issues were psychological--basically, I was treated like dirt.


Iris L


BillBRNC
Posted: Friday, January 13, 2017 7:46 AM
Joined: 12/2/2015
Posts: 1018


I don't know how this has come to this point, but my original question was answered, and my wife and son have had the pleasure of meeting and listening to Teepa Snow. Seems like everyone thinks as much of her as my wife and son do, and I like what I've read and heard. As for all the rest of the stuff that has happened on this topic, I just wish everyone would take a few steps back, take deep breaths, and move forward as friends and people in the same situation. I know I have bad days, say things I wish I could take back, and sometime just plain stick to the bad thing for who knows why. If someone is to be cut off, let it be me for having started this in the first place. Peace be unto everyone. Bill.
The_Sun_Still_Rises
Posted: Friday, January 13, 2017 7:59 AM
Joined: 7/24/2015
Posts: 3020


Aww Bill,

Try no take it personal.  This a pre-existing thing that started before you came on the forum.  Yes, you question was answered....and I am glad know that you also real like Teepa...so my original statement (that apparently offended Michael and Jfkoc, or was misunderstood by them), that Teepa the ONLY one I know of that endorsed by EVERY person dementia I know....stands true. 

Teepa so great, she and I friends....and she is readily accessible you, Bill.  You can friend her Facebook and message her....she'll even call you talk you.  Same with Dr. Allan Power, he a real great guy.  And actually, I could see you and he becoming good friends....as you strike me as being a lot like Richard Taylor that he had been great friends with.  Richard died a year or so ago.  Again, I highly recommend you friending them and seeing where it goes. 

You do pretty good ignoring this stuff, it probably good tactic.  I would as well, but history has shown that when I the target they will pick and pick and pick and if I do no stop and address it it will spread all over.  Also...history have shown that the caregivers will target one of us...may as well be me, at least I can save others that for a while. 

Hang in there Bill.

<3


Unforgiven
Posted: Friday, January 13, 2017 1:08 PM
Joined: 1/28/2013
Posts: 2659


Teepa Snow reminds me of that ninety-something Fruitcake Lady that one of the late night hosts used to have on his program answering questions from the young folks and never pulling her punches.  Pure common sense. Teepa's advice works great with anyone after you learn how to see things from their perspective.  About Naomi Feil, I sense from the answers that her advice is a little outdated.  I read about validation and modified it for my own purposes.  In other words, acknowledge the feelings first and than solve the problem in the most reassuring way possible.  I would never pretend that I had stolen something from my mother's room, because she couldn't live comfortably with someone who steals.  I'd prefer to share her dismay that something had gone missing and promise to keep my eye out for it.  Or if she asks about her mother (which stage we haven't reached yet) I'd say, I bet you miss her, and can you tell me about her?  So, Teepa is of more  practical help than Naomi, at least in my opinion.

This is Teepa Snow from a care-partner's perspective.  She's great, and we often need to be reminded that communicating with sarcasm or rhetoric is off-putting and ineffective.


The_Sun_Still_Rises
Posted: Friday, January 13, 2017 2:14 PM
Joined: 7/24/2015
Posts: 3020


That great Unforgiven, I honestly don't think I have met anyone who really know about Teepa Snow who don't like her....it nice hear a caregiver perspective that. 

<3


Unforgiven
Posted: Friday, January 13, 2017 2:17 PM
Joined: 1/28/2013
Posts: 2659



Sun, I'm glad you said what you did about Naomi Feil, and  agree with you.  We get Naomi Feil tossed at us a lot over on the CG side, and when I first read about it, three years ago now, I felt that some of the advice was not appropriate for PWD in the earliest stages.  In fact, it struck me as patronising to the PWD.  I checked out on my own and discovered that re-orientation therapy had the same success rate as validation, so I've taken it all with a grain of salt.  You answered the question very well for me, and I'm glad to have my gut feeling affirmed

That's not saying we CGs can't tell the truth with a lot of gentle tact and empathy.  That is more like Teepa's approach.



The_Sun_Still_Rises
Posted: Friday, January 13, 2017 5:38 PM
Joined: 7/24/2015
Posts: 3020


You are very welcome, Unforgiven.  Sometimes I wonder if it is just a difference between the older and younger crowd....in what they willing tolerate from how they treated.  I struggle with that in caring for my mom, as she and I come from such different times and have such different needs it seems.  It is probably futile for me at this point, but my brain keeps working at bridging these worlds because I just can no give up the feeling that we can have a dementia care model that works for everyone...and because my brain used readily solve this kind of stuff. 

I see people like Christine Bryden, Kate Swaffer, and Richard Taylor...and here are people with dementia that all the adults around them embrace their personhood and help them stay being who they are for as long as they can.  It is really beautiful.  I think, this is what many people dementia want for themselves.  And in some circles caring for PWD like that just so normal....where here it unheard of, maybe even unimaginable.  I never doubt that caregivers are doing all they can with what they know....and I read sometimes some very challenging situations that real stump me.  But somewhere between those really bad situations and those really awesome situations....there just has be a workable, fairly straightforward, and easy care model that people with dementia would love...and that caregivers would equally love....because it would lead us be the most compliant, happy, and easy care for...which, in the end, I would think should sort of be the goal...I mean, it just make sense. 

You have had quite the journey you mom, and I appreciate that you willing talk us and learn from us.  I real think that what it takes.  I also try learning from caregivers how be more easier deal with for my daughter and family.  But knowing what most hard them, it help me know what plan for me.  I very glad for the chance know both. 

Thanks for being you.

<3


The_Sun_Still_Rises
Posted: Friday, January 13, 2017 9:15 PM
Joined: 7/24/2015
Posts: 3020


MayG wrote:
The_Sun_Still_Rises wrote:

 And in some circles caring for PWD like that just so normal....where here it unheard of, maybe even unimaginable.  I never doubt that caregivers are doing all they can with what they know....and I read sometimes some very challenging situations that real stump me.  But somewhere between those really bad situations and those really awesome situations....there just has be a workable, fairly straightforward, and easy care model that people with dementia would love...and that caregivers would equally love....because it would lead us be the most compliant, happy, and easy care for...which, in the end, I would think should sort of be the goal...I mean, it just make sense. 

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

Totally not true. My husband is living the best life imaginable in his stage 4-5 Alz world. Happy, content, loved...But posting the positive, amazing, wonderful things he gets to do, actually what we get to do, due to all of the accommodations that me, his care partner, are making, is not really what this forum seems to be about. The happy good stuff is ignored. Attention is paid to the "drama" of the very things that upset you.

So people like me, who get it, and not only do good stuff for the Alz patient, but ALL patients, as educators and public advocates, donating our time away from our jobs and family for the cause, mostly sit silent.

Arguments and attacks on threads like this don't help to engage the overall community that is here, watching, listening, lurking....

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

I am no sure what you read in that....

I stated I was "stumped" by difficult situations when trying come up with a care model....like when an elderly PWD is violent his elderly CG wife.  This is a difficult situation find a workable solution that PWD would approve of across the greater dementia community...which historically has been my goal.   Although I am sure there is one.  My comment was ME lamenting my inability achieve my goal because I have now progressed far enough that I can simply no do it....but yes, how dare I feel sorry myself...thanks again for yet another reminder that I am literally the shittiest person on the planet.  It ok.  No worries, I will be dead soon...and then you all can find another PWD target you antics. 

Peace.

<3



abeautifulwaytolive
Posted: Friday, January 13, 2017 9:23 PM
Joined: 8/17/2015
Posts: 86


Omg, mom. It's bait. They're doing this on purpose. Whatever you say there is no win. Just don't answer any one of them. They are like wolves. They're going to nip you from every angle. You are better than that and there are good people on here with better things to do than attack a disabled person. Those are the people worth your time. Whatever you do just don't respond to any of them.
julielarson
Posted: Saturday, January 14, 2017 9:11 AM
Joined: 9/30/2015
Posts: 1155


May, I commend you that you are doing for your husband all that you are.. and why the hell not post all the positive in the caregivers section? Give people examples of what good can happen even with all the work it takes to make it good? Look it is mainly caregivers coming on here posting about what Sun wrote.. Leave it alone for gods sake.. Why can we not have a safe space to vent like you all do? What is wrong with us being able to talk about what bothers us without the sensors coming out and trying to get us to fall in line?
grandmalynda
Posted: Saturday, January 14, 2017 12:07 PM
Joined: 12/3/2016
Posts: 374


Bless you Julie!

--Lynda


Unforgiven
Posted: Saturday, January 14, 2017 1:07 PM
Joined: 1/28/2013
Posts: 2659


I dunno, I'm one of the CGs who keep coming here, mostly because I really like a lot of the people and consider them friends.  And do I learn the most from other caregivers or straight from the horse's mouth, so to speak?  I thought Sun and I were beginning to have a productive conversation.  Especially since I've bedn living with someone who has high-functioning autism (Aspergers) for almost fifty years, and the more I observe, the more similarities I see between autism and dementia.

I'm now very curious as to what some of the YOAD folks find most upsetting about the CG side of the board.  Is it the venting from the newbies (and some of the oldies) attributing the behavior of their LOs to malice or stubbornness?  Or is it the 'fiblet' mentality of telling them anything to not rock the boat?  With the first kind of vent, we get set straight by the more seasoned members right away, but when I first came to the board, some of the advice I got seemed more aimed for much later stages than I was dealing with.  I got frustrated more than once.

A few posts back, Sun talked about bridging the gap between perceptions of pwd and the sort of care you would like to have.  As a CG, I feel the same way too.  It's like my mother and I started out standing together, but then she got on a boat that began to pull away from the dock, receding faster than I could call to her or even paddle my little canoe trying to keep up with the ocean liner.  Tnings change every day, practically, and I'm trying as hard as I can to hit that moving target plus learning the new language my mother is beginning to speak.  With the love of my life, I was able to adapt to the foibles and different way of communicating until it came naturally.  With my mother, It's beyond my strength.

With my mother, in the early years before I was ever told she had dementia, I did try all those work-arounds to keep her functioning independently, but they didn't work for very long or they were already a step behind.  So by the time we got the diagnosis, I was already on the verge of burnout.

Even Teepa says we're allowed to say that this is very hard.  I just want to say that I can't vouch for the other CGs, but I'm not your enemy.  I tried my hardest to be a care partner, but it wasn't allowed.  I still tell my mother the truth in the kindest way possible, which is how I raised my son (also Aspergers) as well.  No fairytales about how a dead pet has gone to live on a farm upstate.  I explained death in a comforting age appropriate way.  He grew up sane and well adjusted to his different brain wiring.  I treat my mother the same, like a human being, even though that goes against the grain of thought.


julielarson
Posted: Saturday, January 14, 2017 1:41 PM
Joined: 9/30/2015
Posts: 1155


Unforgiven, I did not mean you! I can see that you care and did not come here to argue.
The_Sun_Still_Rises
Posted: Saturday, January 14, 2017 3:12 PM
Joined: 7/24/2015
Posts: 3020


Hi Unforgiven,

I do think we were genuinely connecting...and lets no discount that.  And you probably told me before, but I guess I forgot (fing brain, sorry) about you mom be on spectrum...I definitely have a newfound respect for you difficulties trying communicate you mom who now progressing dementia now that my granddaughter and I dx'd and I am now learning so much I never knew before about it.  Woowee for challenges. 

You asking a really BIG question...but the short answer is, imagine you doctor suddenly tell you that you have this.  Sudden changes of realizations take place within you.  First, you unpack literally every image you have stored you brain dementia and Alz...and now you have contend with that going be you.  And a deep seated fear grip you and threaten pull you down.  And a resounding "THIS GONNA BE ME....THIS happening ME" now live in you.

I get sort a benefit insight here, because I have been also caring for my mom for the last 11 years....so I get on many levels the tiredness, and frustrations....and being at one's wits end. I mean, that all make sense me.  I also can see the great benefit of caregivers having a place where they can discuss all those things.  So I have never been at odds that they have that, I am very glad that.  My hope would be, that having that would help cut down on the abuse we face.  

But unlike me, who also a caregiver, MOST people dx'd dementia and then go there - this their first look at, what the hell is dementia....and, most important, what can they expect experience in their personal future.  And that, I think, is the perspective that most people dx'd dementia are in when they first go there....and even if they no consciously in that perspective, being so close their dx time makes that perspective be right there them. 

So again, imagine you just been told you have this, you going progress, and you going die....and the first post you encounter about how others see this reflect how someone can't stand you....or you fucked up again and they so frustrated you.  It not that the posts are wrong - it that it smacks personally because you can no help seeing that this going be you....and it smack hard....and it a wake up call that actually damages us and scars us.  It just does.  I watch it time and time again as new PWD come on here and wander over there....and I do my best help them pick up the pieces.  I have also heard this by every PWD I have met outside of here that used be on here before....so it a pretty common reaction.  

And I can relate both sides....because I have a sense what it like as a caregiver....but even so I also had nightmares and literally did no sleep for weeks after I crossed in the caregiver section the first time....I had get off this place for a while in order recover.  But what I am saying is that even though I had insight knowledge and understanding both worlds - it was a very hard process me recover....because the dementia make it harder process and get over things that I used be able just let slip right off...so it stick a lot longer than intellectually it should.  You might even be able get a sense that in Alz+'s posts...where her intellectual understanding far beyond the emotional processing that just take a while catch up....in any event, I think she write it beautifully.  I am at a loss how better describe it.

So again, it not that the posts are wrong or shouldn't be there....it just that there are two completely differing perspectives happening in the same place same time.  The CG perspective and the PWD perspective.  And I truly believe BOTH can exist gether.  I don't think any caregiver need take our shock or horror personally, as in a personal reflection them....but rather just take in stride of how hard it really is for us cope with our diagnosis and the ultimate reality we facing.

I know, once I recovered from my initial shock and hurt...I was able come back and even return the caregiver section, and helped out where I could.  And, in turn, it helped me write my Care Plan...it helped me see how my daughter might feel, it helped me make decisions about my future and end of life planning.  I think it good we have this opportunity. 

But I also think it would help understand that we have be allowed take the caregiver section in small doses that we can handle.  Assuming we can handle all of everything all at once is probably no very reasonable.  I think most of us, indeed, I can no think of a time when it no the case, that after the initial shock and hurt....we all recover....and we all seem be able meter and monitor our ability go back and forth.

What I never understood....and maybe you can tell me, at least from your perspective.....why do you feel it hard understand what PWD might be see and experiencing when they first enter over there???

Thanks in advance.

<3


Unforgiven
Posted: Saturday, January 14, 2017 10:52 PM
Joined: 1/28/2013
Posts: 2659


Wow, that's a hard question the way it's phrased.  I don't have any problem at all understanding why someone newly diagnosed would take a look at the CG board, see the problems that some caregivers report at the later stages, along with the frustration of the CGs who have to live with it, and become terrified.  I'm sort of terrified myself, given that I have an affected family member and am raising my own odds of developing dementia by undergoing the stress that comes with it.  But then I come on and see people who have had a diagnosis for many years still being able to turn on the computer and communicate quite adticulately, and it gives me hope.


Andy59
Posted: Sunday, January 15, 2017 5:01 AM
Joined: 12/30/2016
Posts: 75


I'm obviously very new to this forum. I will admit to being horrified when I first joined, and I read some posts from the CG threads. I have since stopped reading them, but my wife reads them and tells me to stay away from those threads. 

Since both CG, and PWD threads are very important, why can't there be two separate forums, both requiring separate membership? If I was a CG, I would want my own forum to learn from, or vent my anger, or vent my possible feelings of hopeleness, knowing others could offer advice based on their lengthy experience. 

My symptoms have been notably progressing for the last 6-12 months, and was recently Dx with MCI. Me personally, and especially if I get dx with dementia,  I would rather only read posts from those who are fighting the same fight as me. Nobody can better offer me help for the challenges of life with dementia, than one is is already living with dementia.

Yes, I fully understand both sides  are very important.

Maybe this personal illustration will help explain how I feel. When I was a Marine, I spent my first 6 years in the infantry. They are the ground fighters, hand to hand, up close and personal with the enemy. We were driven to have the mentality that we were the supreme beings in the USMC, and all other Marines were only in support of us. In actuality, that is true. Less than 20 percent  of the entire Marine Corps are infantrymen, and the vast majority of the other 80 percent are there to provide whatever support is needed for them.

There are many great dementia related organizations and forums, and many excellent members of the medical community who offer advice, training videos, and many other services. But all of them are in existence to support the PWD.

Just my humble thoughts....


The_Sun_Still_Rises
Posted: Sunday, January 15, 2017 5:44 AM
Joined: 7/24/2015
Posts: 3020


Unforgiven wrote:

Wow, that's a hard question the way it's phrased.  I don't have any problem at all understanding why someone newly diagnosed would take a look at the CG board, see the problems that some caregivers report at the later stages, along with the frustration of the CGs who have to live with it, and become terrified.  I'm sort of terrified myself, given that I have an affected family member and am raising my own odds of developing dementia by undergoing the stress that comes with it.  But then I come on and see people who have had a diagnosis for many years still being able to turn on the computer and communicate quite adticulately, and it gives me hope.

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

Hope should never be underrated, imho.  When I was first dx'd, after 7 years failing health and brain and thinking it was MS, it floored me it was dementia.  No only had that no been on my radar....the first umpteen sites I googled all kept repeating FATAL.  Then I read Dancing With Dementia, by Christine Bryden who have had dementia for like 20 years....and who was still out lecturing.  She even met and fell in love, and married, an awesome care partner.  Her writing so eloquent that THIS was the first support I had...and the first message that maybe, just maybe I would be ok....even so. 

My whole life, I have been a bit of a geek about the brain....and so I knew a thing or two about neuroplasticity, and I could no help but be astounded how Christine had managed somehow evoke it with the most astounding results. Christine often shows her MRI scans at her talks....her brain extremely atrophied...and her neurologists (who also give testimony) are shocked she walking and talking with scans like hers.....and yet, there she is. 

Meanwhile, I was also being introduced another reality dementia that had no thing do with the disease, but had only do with how people SEE and VIEW the disease and more importantly, the people with the disease.  My lovely doctor, who had previously considered me very smart and capable of direct my own care, suddenly would (after I tell her something) look at my daughter in order check out what I said.  And let me draw a comparable...I could say I was having more pain in my knee, and she'd look at my daughter - LIKE MY DAUGHTER WOULD HAVE A CLUE what going on in my knee.  OK.  Even here....the attitude that we irrelevant, that our feelings and needs are irrelevant, and that we are undeserving of support much less supporting each other was soooo pervasive....it was quite a shocking reality wrap my head around....much less make sense of....much less ACCEPT that this was MY new reality....that with the stroke of my doctor's printer....that I was suddenly NO LONGER HUMAN with any human rights dignity.  <--- that hurt me far more than that I have a disease process ravaging my brain that will make me struggle more more until I DIE.  But that, this person who had been loved and respected....suddenly was rendered a zombie.  I wasn't of course, what the world thought of people dementia and Alzheimer's...I was still very much who I had been the day before.  So now Ihad two struggles on my hands....1) find a way slow this process down....and 2) somehow find a way reclaim and maintain my personhood in the world of who I had always been.  

Then I began meeting other people dementia....Kate Swaffer, who just like Christine Bryden was going strong and demanding her personhood.  She even went college and got a degree after her diagnosis.  And I joined the online support groups....and here were people just like me.  And again, a new wave of understanding this....because until then...until then....I could still deny the diagnosis myself....for it simply made no sense me, if I had Alzheimer's like my doctors said and Alzheimer's supposed attack the whole brain....why, were some things still easy me.  I figured, in my newness understand the disease, if it Alz...then everything should have been hard me.  But the video support groups....I was shocked and amazed that all the other people my group shared the same things hard and the same things easy....and then I was inwardly horrified, because I could no longer deny it myself....and I had accept it happening ME. 

Meanwhile here the people of DAI...and they all similar Christine Bryden and Kate Swaffer...and there BUNCHES of them, all managing an org and conducting business...and well, BEING people....like we had always been.  And then there was the image us here.....and the way we treated here.  So I had these two conflicting points of view....and so I did what I have always done in my life, when presented 2 differing paths....I asked myself, WHICH I wanted for myself?  BE a person....or....BE already gone.  And the answer, for myself, was clear and obvious....I want what they had.  As it was clear me, that they all had clearly found the way (whether they knew it or not) evoke neuroplasticity and they were going strong decades after diagnosis.

Meanwhile, I progressing fairly fast....my first neuropsych I was stage 4.5...and that summer I sailed through stage 5, beginning stage 6 that winter.  So here another reality I had contend with.  My wonderful non-dementia expert doctor research and discover that my muscle med that allow me walk and no longer be bedridden was making me progress faster....and I had make a very hard choice....bedridden and live longer or have a life and live less long. 

Through DAI, I met and became friends with all the greats in Dementia Advocacy who had dementia of one kind or another....and did I meet and become friends with the great minds who do no have dementia who trying carry our work forward.  Through all that the group mind was always accept us as humans in our own right, and everyone dementia seemed embrace in one way or another - I may no be able do much, but I will certainly do all I can. 

And as a result...because there is a result that can no be denied by anyone who sees it....THEY live longer, THEY function longer...than the people dementia on here.  So here another reality this disease that I had contend with and try make sense of...WHY was this? 

I had answer this for myself, because I a realist and a pragmatist....and I wanted live longer and more functional than the image given me here.  And, what it came down with - was POINT OF VIEW...indeed, PERSPECTIVE truly matters everything.  IF you view us as already dead and gone and not mattering.....we are AFFECTED in real and tangible ways that.  IF, instead, you view us as humans, who can and are still contributing and productive and worthy...we are AFFECTED in real and tangible ways.  And that, for me, was a result worth talking about.  So YES...you hope should no be undervalued. 

And it no just here, this...this true children autism as well.  Children autism they in there...and they have value as they have access insight the rest us do no.  But some parents, have sort of an they already gone, useless, attitude them...and do a sort of mini-institutionalization of them.  They put them in full day treatment from a very young age, that just behavior modification....they TOLD actively by the professionals...ignore their behaviors (which is their ONLY attempt communicate us their needs - causing them further retreat inside themselves)....and the parents, similar many caregivers here, complain about how they hate when school out for the holiday and about how they going nuts.  And, then there the other parents...who see our kids in there, who feel they are people with feelings and who deserve have their communications listened do.  And who don't put them in full day treatment, but instead do many the things themselves at home.  AND....I am realizing, that the same as here in dementia care....the children ARE affected in real and tangible ways. 

And I realize powerful lesson I learned as a young adult....you get back what you put in....that both people Alz and children autism will give you EXACTLY back whatever you expected.  In short, you will always get what you asked for. 

AND....the language you use talk you self about it.....matters everything also.  I just watched this amazing video Dr. Allan Power which Andy posted my other thread, and I reminded again this as he answering a question at the end.   Dr. Power talking about the way we view people Alz ALTERS the way we care them...but he say this for someone who asked about wandering.  He describing how we put barriers and locks doors and all this prevent them get out....but we never really meet their need that causing them wander....so it will keep happening.  But he say this....what it we change the word wandering with searching....they are searching....and how does that affect how we then care for them????

Powerful words.

People with Alz and Dementia can do only so much...we can know how do it, but we will eventually progress and forget what we know...and eventually become less and less able.  But that does no need happen pre-maturely as it often do.

Caregivers and care partners LITERALLY make what is possible and what is not-possible us....by how they think of us, by the words they use talk themselves about what going on us...and by how they see us.

There are losses in dementia that have NOTHING do the disease...but that are caused solely by how the world views us.

Here that video link if you interested:  https://www.youtube.com/watch?v=Fzd4oOncxvk

Never give up hope.   I and others may no (yet) have been able condense down the secret sauce in a 1, 2, 3 step by step  (yet)...but the way IS there....many are evoking it and living it and benefiting from it.  My ability articulate it may be gone, but I can still point at it and say here, here it like this....and this....and this. 

<3



Unforgiven
Posted: Sunday, January 15, 2017 1:22 PM
Joined: 1/28/2013
Posts: 2659


As far as the doctor goes, my mother turned out to be misreporting her medical history and her symptoms for quite a while before her duagnosis.  She misreported the dictor's finding and recommendations to her family as well.  She insisted the doctors told her that she didn't have Alzheimers, and her fogginess was attributed to her opiate use.  However, once I could take a look at her charts, I saw MCI listed all the way back to 2005.  She was also told not to drive in 2006, for the painkiller reason, not diagnosed dementia, and was still denying that in 2008.

I'm sure she believed everything she said, but it was confabulation, and a doctor has to check, because it is a sign of progression.  May you avoid it, because many do.  This is simply my experience.

This is not me being hostile.  It's me being frank.  My mother's physicians still address her directly, even though she is unable to understand the questions much of the time, and it puts me in the position of having to contradict her, if a simple silent shake of my head won't do.


The_Sun_Still_Rises
Posted: Sunday, January 15, 2017 3:02 PM
Joined: 7/24/2015
Posts: 3020


That so hard.  It might be partly that you her child, and we moms....we just are not wired let you know we having trouble.  Indeed, we'd sort of rather die than do that.  So we get used pretending like we fine. 

I am at a loss how help that because I also find I can no go there my daughter most things.  Some things, the Alz and my progression....but not many my inner feelings and needs for support.  I don't know how become her child.

At the same time, I take care my mom in a role very much like I her parent and she my child.  Which leads me wonder is it just easier older folks?

 

It a very weird dance becoming you mom's caregiver.   We no wired that way either.   It like every time my mom get worse or need more help...it a whole new level process.

 

Would you mom be receptive if you were like (in between doctors), we should probably tell the doctor that when we see him next...??  Or prepping before see doctor like night before and morning of, on way, while waiting??   Or even just letting you keep a list that you could read doctor? 

I get in a similar place my mom also.  My mom never say anything her doctor anything.  I sure my mom in pain, she can barely walk....the few times I have convinced her take a Tylenol she walk so much better.  I point this out.  But doctor come and she insists no pain.  She also incontinent and lately no remembering go potty....so even with depends she wetting her pants 2x day.  When doctors or workers ask, assess her...ask this...she say she continent...and I have say.  I know my poor mom mortified.  She never say anything....and it kill me do that my mom.  I try explain after that we have tell them that so they will pay for her depends.  She seems so childlike trust me those moments.....it make me feel like when you have tell you kid it ok open their mouth dentist or hold out arm for get a shot. But I feel like the worst person world do that her.

How do your mom react when you say thing she would normally no tell the doctor? 

<3


alz+
Posted: Friday, January 20, 2017 8:34 AM
Joined: 9/12/2013
Posts: 3608


since each of us is going to have changes unique to the way our individual brains are interfered with, it makes sense to include different approaches to handle situations.

I respect all of them for trying. 

Teepa is a good mechanic and CGvrs like her friendly goofy style.

She is not a deep person (in my mind) - she comes up with ways of HANDLING  people with dementia. This may be perfect for 90% of us I don't know. I respond to someone being calm, getting to know my break points, getting to know what ends those moments and doing it.

Teepa's dvds are out of my price range but there are clips all over youtube. I hope Bill's wife and Bill benefit from the  lecture.

********

 going off topic on a dementia board ought to be understood as normal and thank you all who do go off topic because it is usually a side road into something sparked by a conversation - that can't be held in memory to post separately.

I need a break,  remember, the person you dislike here at the moment could help you more than you can imagine someday. 

Be kind, patient, forgive quickly, find your love and courage and treat each other as valued human beings.

If we should find ourselves making snide remarks and being off, come back as soon as you can and apologize. EVERY one here deserves that much.

I love you all so much - turning off tv and recovering.