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need help regarding the NIGHTMARE propaganda please
alz+
Posted: Saturday, December 12, 2015 10:16 AM
Joined: 9/12/2013
Posts: 3608


 http://www.huffingtonpost.com/lisa-hirsch/watching-mom-disappear_b_8692460.html

 ok

here is my confusion regarding the Horror Show that is the prevalent view of having ALZ and wether or not it is helpful to respond to people sharing their tragic story about watching their Mom or Husband waste into a nothing over many years by suggesting that might not be necessarily true.

As some of you know I helped take care of my Dad when he had ALZ. I did  not know it was supposed to be a Nightmare, and I did not know it meant he was DEAD already when he could not speak like he used to. We still communicated, we still enjoyed being with each other.

He got into mischief, he had bad days. But we also sat in silence with the dog and watched the birds on the pond. I gave him back rubs. He still laughed at times. During his dying process I  spent the nights with him and we communicated by looking into each other's eyes, by him relaxing when I got what he needed right.

So I read this lovely article linked above and felt my head explode at the comments - they all agree how bad it is, what a living hell it will become, how sorry they are the writer has to endure this. And then the people who HAVE ALZ and do not want to put their loved ones through this predictable nightmare so have plans to kill themselves, and how generous they are thought to be to do so.

Is it worth it to challenge these ideas that we become useless empty vessels?

Also had smoke come out of my ears when alz reading room posted "People who fear old age more likely to get dementia". Give me a break! Research money is spent on anything but helping us lead fuller lives to the end by always dogging this same old vision.

It has me so peeved today I am motivated to get back to writing "my book" even living in a house with no kitchen and flooring and junk piled all over. People see what they expect to see, they create a reality for us that is hell by doing that. Then I wonder, what if they are right? So many seem to experience that, maybe I am "in denial". Maybe I am carried away with the spiritual essence of life.

anybody think my experience with my Dad (and others!) was because I am crazy or deluded? Is everyone who creates a world for their loved one to live I happily just pretending? I am pretty sure consciousness does not = quick conversational events and being able to recall names promptly.

help

 

 

 


bethNC
Posted: Saturday, December 12, 2015 2:37 PM
Joined: 6/6/2015
Posts: 55


Thank you, Alz+, once again, thank you. Words are not easy today, but you have captured what is in my heart.

For you, especially, Love & Courage


Iris L.
Posted: Saturday, December 12, 2015 3:29 PM
Joined: 12/15/2011
Posts: 18519


Welcome back, Alz+!  You have inspired me with your story of your Father.  I don't believe all those horrible stories either.  Unfortunately, the horrible stories are the common belief for AD, and they are perpetuated right here on the two caregiver boards, and also on our patient boards.  It is hard to project an alternate viewpoint.  Most patients do  not even seem to be on any medication for memory, only for behavioral problems.  It seems to be a losing battle to promote Best Practices.

But on our board, we can be realistic, and focus on maximizing our lifestyles.  Most people lead lives of quiet desperation, even the healthy ones.  We don't have to live that way.  We can live fulfilled.  

Most of the patients cannot advocate for themselves.  We can do only so much for them.  I try to promote awareness of anosognosia, so family members won't continue to complain that their LO is "in denial."

I just got an email from the AA chapter in the county next to me, inviting me to a Christmas open house.  They listed all the activities that they have for early stage people.  I was impressed.  Yet, when I called and left two messages for the Early Stage Coordinator, she never called me back.  So I don't see how interested they are in having new members.  I could benefit from the social groups and outings and Memories in the Making that they offer.  Oh, well.  I'll just continue to go it alone, with the support of my cyber-friends here.

The truth is, patients with dementia or cognitive impairment are mostly left to their own devices and abandoned.  They go along until there is a crisis, and then a family member takes them in, or puts them in a facility.  This won't happen to me, because I am taking steps to take care of myself.  Alz, thanks for all your advice about environmental control and smiling!

I am a Dementia Pioneer!  I am going alone, and taking care of myself!  I don't listen to negative nellies!  It can be very demoralizing, reading the caregiver boards, so I ration my reading.  I suggest you ration your reading of articles like this one that upset you.  I won't even read it.  

I'll bet the mom could write an article stating, "I'm still here!  I'm waiting for you to notice me and interact with me in a new way, that's better for both of us."  "I'm Still Here" was the title of the book by John Zeisel, PhD:  A revolutionary new approach to Alzheimer’s care, focusing on a patient’s strengths to maintain connections with others and the world 

We're on our own, charting new territory, Alz.

Iris L.

 

 


alz+
Posted: Saturday, December 12, 2015 8:27 PM
Joined: 9/12/2013
Posts: 3608


bethNC wrote:

Thank you, Alz+, once again, thank you. Words are not easy today, but you have captured what is in my heart.

For you, especially, Love & Courage

***************

Thank you Beth! and thank you Iris!

The article was very moving as the daughter described her feelings of loss as her mother's disease progresses. She seemed to be an excellent support for her Mom - and yet with good intentions I could see she was headed to defining the end of her Mom's life in terms of who she used to be and never will be again.

My hope is for people to take a chance and be normal around those of us when we can no longer speak (speak rapidly enough to not have the person we are talking to change the subject, pat our knee and walk away). It is not even so much forgetting some one's relationship to us, as not being able to name it fast enough when asked "Do you know who I am?" and all changes are individual so who can predict?

I have read the book Iris mentioned. I am home alone with my dog while husband went away with his Mom to spend a day and night with his children. I feel good about being here alone, have all kinds of food prepared so I don't have to wrangle a stove or anything.

 Iris calls herself a PIONEER, very true. even with live in help it is up to me to teach anyone wiling to learn how to relax around me, to see I am changing but that does not equal degenerating into a vacant suit. Not asking for much, some days I get it and feel wonderful.

  a SMILE is international symbol of PEACE.  Practice smiling! love you all...



alz+
Posted: Monday, December 14, 2015 7:57 AM
Joined: 9/12/2013
Posts: 3608


More anxiety.

I ordered the memoir KEEPER as it had been referenced with joy and how accurate the job of caring for author's mother-in-law was described.

By page 30 I was crying and questioning myself about my beliefs my future care, regarding the agonizing potential to actually be just a waste of time and money.

The book is really well written and I laughed at some of the takes on how people with ALZ behave...and yet what she describes, the reasoning with the MIL's thoughts, the naming of her reactions as "hallucinations" and "paranoid" and so on as all typical of fixed stages common to everyone.

No one in this family (at page 30 - there may be a big change coming) gets that the way they question the woman, doubt her, tell her she is wrong, correct her, ask her if she remembers this, remembers that, how that exacerbates the woman's anxiety.

I do not read the care giver's boards anymore. Was I Pollyanna delusional, as some have suggested, for thinking this could go much better? Maybe at the end when no one sees the point in visiting we could be given an opiate if we seem to be suffering in any way.

These people would not yell at a blind person, "You could SEE if you WANTED TO!" and yet I remember my mother saying such things to my Dad, angry at him for being mixed up, scolding him. Maybe a portion of the populace just does not see what I see, even at the end, even when we can not speak.

Is there any point in trying to share a different view? Are they actually right?

 

 


Unforgiven
Posted: Monday, December 14, 2015 10:12 AM
Joined: 1/28/2013
Posts: 2659


Alz+, I'm sorry you will find parts of Keeper upsetting.  The point of any book is a struggle and then an enlightenment, which happens in the book, eventually.  Andrea's entire family was as ignorant starting out as most of us are with this.  They swallow the comforting Namenda ad view of the mother and daughter baking cookies and trying on earrings together, when the reality is a lot different.

Seriously, who in their right mind would think that caring for a PWD and running a bed and breakfast hostel would be a good mix?  You'll find that the health service providers (of which there seem to be many in Scotland) were just as clueless about dementia manifestations and care as everyone else, with a few exceptions.

I was amazed at the level of free in home care available in Scotland, not to mention the four weeks of family respite, and still you can see the negative effects on everyone, including the PWD Nancy.

Caregiving is not a walk in the rose garden, but neither is any experience in life.  It helps to go into it with eyes wide open, expecting to see some gnarly things along the way.

There is a 'happy' ending of sorts, with Nancy, well-groomed and content in MC, when the family realizes the task is beyond their abilities.


Iris L.
Posted: Monday, December 14, 2015 12:29 PM
Joined: 12/15/2011
Posts: 18519


Alz, Keeper is not a joyful book.  I read it a few years ago, and it was recently mentioned on the Caregiver boards.  I would not recommend it for patients to read.  Have you read the book Mimi suggests?  I can't think of his name right now, but he was a patient, and wrote two books.

The caregivers have a completely different perspective from us.  There is almost no sense of fulfillment there.  There is much anger and despair.  It can be distressing to read their posts.  

But this proves my observation.  There is frequently an adversarial perspective between patient and caregiver.  It does not have to be this way.  

We can't help the LOs, but we patients here must work to help ourselves.  There is hope.  There is much that we can do for ourselves and our families.

I don't just call myself a Dementia Pioneer, I call all of us Dementia Pioneers.  We are living the best way we know how, thanks to Mimi and others who have taught us what we needed to learn.  

There are many patients who have a gentle journey.  We do not hear enough about them.  I take hope from your stories about how you cared for your Dad.  I also think about my cousin, who passed away last year.  She was lucid and knew everyone until the end, and mobile until a few days before the end.

Please keep posting, Alz+.  You inspire so many people!


Iris L.


alz+
Posted: Tuesday, December 15, 2015 7:06 AM
Joined: 9/12/2013
Posts: 3608


Oh man, to those who have so kindly responded to me, I feel blessed by you.

Keeper is so well written and my copy is pristine ($2.50 amazon) so I am taken with her story and will probably finish it - if possible. My ability to read is down to 15 minute stretches now.

Fore warned might make the book less intense.

Because I am not science trained as some people on boards I seem to be able to perceive things those taught can not be true do not witness. I told the psychiatrist who treated me until ALZ diagnosis about my conversation with my Mom's end stage ALZ high school friend, and how she was illuminated. He leaned back in his chair and said "Don't mention that to anyone else."

If this woman's daughters believed that when she stopped engaging in their questioning of her, when she could not respond verbally in a language they used, they cut her out of a chance to communicate. Or maybe she just didn't want to. But I approached with a smile, a plant for her sunny window, and just sat on floor in front of her wheel chair and told her who I was.

She responded. She did not recognize my Mom's name which I did not expect her to, yet she knew "her high school friend".

When I volunteered for hospice I always talked with people who were supposedly unconscious. I got hand squeezes, and some times words. Giving massage to them the would make sounds when they were enjoying it and I would smile at them and they would smile back. I did not see it as a reflex or whatever.

My spiritual teaching has been the soul (awareness) is often around for 3 days after physical death. One of my dogs I had euthanized was in the car with me and my children on way home from vet's office. My kids were aware of his presence too, they had not been told it was impossible or that once you die, zap, you do not exist.

In ALZ we cease to exist for many people long before physical death. That to me is a kind of horror movie. But if it happens to me I will continue in prayer for them.


jfkoc
Posted: Tuesday, December 15, 2015 11:44 AM
Joined: 12/4/2011
Posts: 21250


I believe there are many person's with all kinds of illnesses who experience a "gentle journey" We do not hear from them...The caregivers who post are  those of us whose journey is not gentle...we need help desperately. We somehow find our way to this place.

Perhaps the problem faced is a double edged sword. We must continue to learn the best way to live with the illness and yet we must present a picture of  it that wakes everyone up. Treatment both medical and non-medical, must be improved upon. That is all we can do until a cure is found.

The insight those of you here provide is of great value...thanks over and over again!!!


Unforgiven
Posted: Tuesday, December 15, 2015 1:35 PM
Joined: 1/28/2013
Posts: 2659


Keeper is painfully honest at times, but that's really what we need to see.  Otherwise we'll wonder why everyone seems to be handling things better than we are.

I took another look at my copy of the book, and so far it's only the equally aged and disabled husband who 'yells' at Nancy, but spouses tend to do that in the early days.  The family is being kind, excessively kind in the author's mind, because she catches herself doing the 'cheerful nurse' act with her mother-in-law, and that is a real jolt for any caregiver, not to mention the PWD who notices as well.


alz+
Posted: Tuesday, December 15, 2015 1:50 PM
Joined: 9/12/2013
Posts: 3608


Have I said today how much I love everybody here?

I think I am lacking in sympathy for the job of caring for me because I still dress myself and not in need of diapers yet. Ha! But just the 24 hours a day, over and over must drag his goodwill into the dirt. My husband gets edgy  - I try to smile at him when that happens, but today he had to leave when he upset me by over explaining some things and then telling him he would "keep it real simple".

He does not consider I am still recovering from UTI and my weekend alone, and the ongoing construction. We have wonderful guys putting in flooring today and they also installed some of the old cabinets back on the walls. Even though they are quiet, competent, and skilled that throws me off - having other people in the house. My Keeper always seems so surprised when I need private space and a break, like I should wear a t shirt that says "You forgot I have dementia again".

Having the thoughtful, smart, helpful people here rescues me whenever I feel I could start going into a meltdown. Thank you a million times!

Thank you all. Iris, yes we are all Pioneers. Without your presence here when I joined I think I would have been lost.


Lisa428
Posted: Tuesday, December 15, 2015 2:24 PM
Joined: 12/5/2011
Posts: 795


Hi to All,

I think I need one of those tee shirts. AD here!

Some caregivers have a much harder job than others. Depending on the type of dementia, some people can become difficult. PWD sometimes don't understand what is happening to them neither do their caregivers.

Patience and kindness seems to be some of the keys to success.

Like many of you out there, I can still take care of myself.  Do my daily ADL'S without assistance.

My family is very good to me.  But, they still remind me that I have asked the same question 3 times (and of course forgotten the answers) .  I wish they would just answer my questions.  I guess It becomes really annoying to them!

 

It's the Holidays.  I wish everyone Happy Holidays.

Love, Hope, patience for all,

Lisa

 

 ,I can still


jfkoc
Posted: Tuesday, December 15, 2015 2:29 PM
Joined: 12/4/2011
Posts: 21250


I thought "keeper" was alz+'s husband..it's a book? Totally confused here...help
Iris L.
Posted: Tuesday, December 15, 2015 5:35 PM
Joined: 12/15/2011
Posts: 18519


'Keeper"  is a book by Andrea Gillies.  I tried to bring it up on Amazon, but my computer froze.

Keeper is also a nickname (I hope) by Alz for her DH.


Iris L.


jfkoc
Posted: Tuesday, December 15, 2015 8:09 PM
Joined: 12/4/2011
Posts: 21250


Thanks !!!
alz+
Posted: Wednesday, December 16, 2015 9:31 AM
Joined: 9/12/2013
Posts: 3608


Ha! The Keeper question!

The book is really good. She is great writer and the mother in law is in a daffy situation so I am learning from it and laughing now.

I call my Husband "my keeper" as in like a zoo keeper. He thinks it means he is my treasured find.

Unforgiven - you always post things that make me feel good.

Lisa - I did not remember you also have dementia. You seem so calm. I'd like to take what you're taking.

To the care givers: Thanks for bringing up the book Keeper, I learned some Big Stuff already by page 50. I will try to share it when I get my self in order.

Merry Christmas and happy any other holiday!


Unforgiven
Posted: Wednesday, December 16, 2015 12:52 PM
Joined: 1/28/2013
Posts: 2659


Alz+, Andrea Gillies speaks about trying to write a novel while doing the 'keeping', and she eventually completed it.  It is called The White Lie, and it is a fascinating read, especially if you have read Keeper and recognize the real life details that made it into the fiction.  There is a grandmother who seems to have dementia, and it is humorous at times, but she is the one speaking the truth.
llee08032
Posted: Thursday, December 17, 2015 5:28 AM
Joined: 5/20/2014
Posts: 4408


alz+ wrote: Then I wonder, what if they are right? So many seem to experience that, maybe I am "in denial". Maybe I am carried away with the spiritual essence of life.

It is hard not to question if were in denial when most of what we hear is horrific. Hearing the awful stories frightens me less than it used to but at times I know it  would be easy to go back to being frightened because there is an overload of information that is antithetic to what I choose to believe. 

I am having a hard time gathering my thoughts right now.



The_Sun_Still_Rises
Posted: Thursday, December 17, 2015 8:40 AM
Joined: 7/24/2015
Posts: 3020


 

Hi Alz+,

Many of us ARE involved in trying to change the negative stereotype and stigma surrounding Alzheimer's and dementia.  There has been a Suggested Language Guideline out for years, that those who worked on it hope people will help give to every media person whoever thinks to write about this disease.  It is also hoped that people who do not have the disease, who write about it, would also follow. 

However, the negative view of us amounts to a very powerful agreement and sort of "cow path" for lack of being able to find a better word/description, that is hard for people to break free from. 

I agree with you, that it harms people with the disease in innumerable ways...but those who do it don't seem to care about that.  Like me, my diagnosis was delayed for 4+ years even though all my providers had a pretty good idea, because of the negative image, stereotype, and stigma that the disease is nothing but epic sadness and suffering, they report (now that I asked them) that they had found it too sad to tell me.  While I have compassion and a deep love for each of them, I still can't help thinking of how much easier those 4 years would have been if only I could have known why it was happening; or how many more supports I could have gotten into place if I only could have started when I still had more of a brain; or how many more functioning years I might have had if only I could have started Aricept earlier on, rather than now when I am already in stage 5.  I don't have a word for that feeling. 

Yeah, that might get them some funding, but at the cost of the quality of our lives.  

Here is a link to the guidelines:

https://fightdementia.org.au/sites/default/files/NATIONAL/documents/language-guidelines-full.pdf

Much Love,

Sun

 

 


jfkoc
Posted: Thursday, December 17, 2015 10:56 AM
Joined: 12/4/2011
Posts: 21250


Until the facts and figures are presented in such a way as to get the publics attention AD and the other diseases are not going to get the funding for research.

Movies like The Notebook  to not generate money.

Please, when you all read the other forums tell yourself over and over that you are reading the horrific stories and that they are not the prediction of your future!!!!!


The_Sun_Still_Rises
Posted: Thursday, December 17, 2015 11:46 AM
Joined: 7/24/2015
Posts: 3020


jfkoc wrote:

Please, when you all read the other forums tell yourself over and over that you are reading the horrific stories and that they are not the prediction of your future!!!!!

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

I wish that were true.  But I have never been one to delude myself, or subscribed to magical thinking.  I try instead to be objective and realistic and look at things as they are (the good, the bad, and the ugly) and then try to deal with them and plan for them the best I can.  But there is no guarantee.

We each come into this diagnosis with different social resources. For instance, I don't have a partner like you were to yours.  I will have paid workers, that are subject to change, may not have adequate training, and I am always subject to having control ripped from my life by some uppity worker who thinks they know (like the lady that sent me alone with transport and I got lost).  Even my best laid plans may not protect me...but one can lay them anyways and hope.  And, because I am 8 years shy of 55, I will never see true memory care or be placed somewhere where they have any training...and I will be subjected, if placed, to crap Medicaid nursing homes, not designed for my care needs.  That is the very real, reality of my future.

Many protect people's right to post these stories, and I can understand that...I just wish it could all be done a bit more mindfully, because people newly diagnosed, like me, do read them...and the very sad tragic part of all this, is this IS a very real, reality for many of us. 

You might not realize it, but people diagnosed with dementia tend to feel bonded to one another...just because it is happening to someone else, that could very well be us.   Few of us can walk by and not be affected deeply by it...because we know it could just as well be us. 

When people read these stories, they focus on the author, but often don't consider the isolated and unprotected vulnerable adults that are the subjects of these stories.  There is nothing protecting any one of us from that outcome...not one thing.  And as long as it is made "ok" by the consensual agreement...we are all at risk for being the subjects of those stories. 

This is why I work so hard, despite my increasing communicative disabilities, to raise awareness about why we do what we do, about what is behind our behaviors...that maybe, just maybe...just maybe one person hears me and rather than get mad, instead understands. 

I just wish that it wasn't all left to those of us with the diagnosis...

Much love, and sympathy, and empathy, and support...hang in there. 


alz+
Posted: Thursday, December 17, 2015 12:59 PM
Joined: 9/12/2013
Posts: 3608


OK. SUN - hey!

You are on boards and doing so much stuff. I just post a comment to a comment here and there suggesting people might think again about what they are "seeing".

If there is a consensus belief then who looks with fresh eyes? A few? There have been mocking comments after one of my "maybe we are not as brain dead as you think" comments.

such as "Oh boy, the fairy tale people have people!" or "You have no idea how bad this is going to get, and it is a horror show!" or the "I wish my Mother would make like the Inuits and go off on an ice shelf and die."  or ignore me mostly and go on to say how moody and angry their beloved burden is in Big Screen terms, mythic proportions of bad.

My cousin emailed me from Spain and "F*#@ writing a book. make a video for youtube."

I have no clue how to do that nor a desire to. It felt so critical to me, like I was the lone ranger to the upper Midwest on ALZ care. I'm not. This is my time to concentrate on what seem to me to portals opening to the other wor?ld. Who knows what is accomplished by prayer for the safety of us all and the healing of hearts ?


Iris L.
Posted: Thursday, December 17, 2015 9:15 PM
Joined: 12/15/2011
Posts: 18519


Keep posting, Alz+!  You are helping us just by posting!  

Your posts are thought-provoking and eye-opening.

Iris L.


JeanetteD
Posted: Thursday, December 17, 2015 11:42 PM
Joined: 10/27/2015
Posts: 38


I know one thing... I'm not dead yet... I just forget a lot of stuff...
llee08032
Posted: Friday, December 18, 2015 9:35 AM
Joined: 5/20/2014
Posts: 4408


I don't know what to call these people that make us out to be monsters; well people or normal people? And just for the record I'm not referring to C/G or C/P but the lump of people in society in general (including congress, government, the medical profession) who label us as "hopeless" so they can justify not helping us. The fact that we are collectively aware of this and remember this is proof that we do not "forget" everything as well as, what really matters and what needs ton change with the current worldview of dementia.

I'm not sure if I made sense with the aforementioned statement but I just have to be okay with it if I didn't. 


alz+
Posted: Friday, December 18, 2015 10:05 AM
Joined: 9/12/2013
Posts: 3608


Jeanette - how is MARLEY?

and go figure, I have not remembered a neighbor's name in 30 years but I know every dog by name.

thank you to all who say it is not stupid to think how I do, as if I may just be able to still pray even at "stage 7".

Love you all so much.

by the way, 2 days ago I could only read 15 minutes and double vision was so intense I could not read the tv ... where we have the typed transcript at bottom of screen.

Today it is not so bad. Flickering vision, plugging away at Keeper book. I do many of those things described - attracted to small kids and telling strangers they are "beautiful" and talking to myself in thrift shops etc.

Vaya con dios!