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making your fears come true - or changing your ideas to live well
alz+
Posted: Monday, June 13, 2016 12:19 PM
Joined: 9/12/2013
Posts: 3608


I saw a mention of an upsetting post on CVGR boards about JAIL - and went looking for it but could not find it. What I  did find - after many months of not looking at those boards was the depth of fear and the power of incorrect beliefs to steer the car off the cliff.

Maybe I am wrong in my interpretation of one situation I read about someone fighting with their spouse or parent. The cgvr was exasperated with all the anger in the PWD and sought comfort from online community. After being called names and being yelled at the person stewed all night until they did not want to see the pwd in morning and had to force themselves to get up and face the nasty demanding creep.

when they showed their face to the pwd, the pwd apparently pointed at them and screamed "hate! hate! hate!" That was taken to mean the pwd hated the cgvr, and so the distress was amplified.

when I read that scenario my instant take was the pwd took one look at the cgvr's face and saw hate, pointed to it and screamed in terror.

 

Is it hopeless to get message through to cgvrs that they are GETTING back what they are EXPECTING?


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alz+
Posted: Monday, June 13, 2016 12:51 PM
Joined: 9/12/2013
Posts: 3608


I felt ill after recently reading some of the situations on CGVR, many involving men with dementia becoming violent, guns, knives, swords collections still lying about.

I know situations get out of control. I understand being worn out from efforts to deal with the confusion of living with a person in another reality. But I have come to believe that because people expect a nightmare, they create a nightmare. Then they share their nightmare and the nightmare gets sympathy and comfort and becomes further entrenched.

When I was first diagnosed (after years of fighting with my husband and thinking we needed to divorce) I found an online the story by Eloquent Solutions, a woman who rescued her mom, got her off medications, took her hometo her cannabis farm, and told of the joy she found in helping her Mom recover herself.

One description stuck with me: the woman held a party to celebrate her mom's birthday and bought 2 cakes, because "I knew she would not remember she had eaten the first." Is that fabulous? yes!

I assumed everyone could be rescued by someone and allowed to wander about in safety and comfort, including me. I thought, good, not everyone needs to find a $10,000/month assisted living facility, and that we could fit in anywhere if we were allowed. But instead it seems that is not what happens, and I think the anticipation of this Inevitable future nightmare unfolding creates that imagined nightmare future.

No one wants to be helpless. But really, if becoming a helpless zero is what a PWD is imagining for themselves, then they are living it now. If we are filled with anxiety, fear and loathing in this very moment, we are in fact living out this dread future before it comes to pass. That nightmare is not necessarily part of the disease.

These ideas, based on outsider observations which are often incorrect, makes the caregiving experience for PWD and CGVR nearly impossible to change for the better. Spouses and children left with the job of being the PWD's protector are irritated by that anxiety, the dark moods, frustrations and fights break out.  If we look with different eyes we can see this death is as typical as any other, and take comfort in that we do not become empty vessels draining society's resources.

Last week Keeper too me to a garage sale and a woman there who used to be one of the local bank tellers remembered me. She had been given a gift certificate for a treatment from me (13 years ago) and seemed about to ask for an appointment for it now that she remembered it. I said, "I have Alzheimer's" and a chorus of sad "awwwww's" went out.

 I said, "Oh it is ok! It is not the end of the world. We decided to have fun and enjoy all the weird stuff, we're out today having fun. Alz does not have to be any worse than whatever else might take me out. All earthly life ends, we are doing really good."

People had their mouths open.

One woman came over to me and told me how she had been very ill a few years back, near death, and had to be in a wheelchair which made her miserable. Her husband told her she "might as well enjoy it because he was going to," and they learned very quickly how to enjoy their time. Then she recovered and they decided to stay as playful now as they were then. She got it because her husband got it.

  and that is my point exactly. 

Consider that if I am doom and gloom and spend each day planning my early exit and imagining being left alone in a dirty diaper abandoned to a hard bed in a rat infested nursing home unable to think, witless and without merit - how do we suppose that "inevitable future" affects those who come to our aid?

Because I have cared for people with dementia I know the story line 95% of people maintain about dementia is false. Is there no means of breaking through the belief system that claims we become useless, unwanted angry burdens full of meanness and that we are destined by a diagnosis to be on the receiving end of cruelty?

 Makes as much sense as the story that a 757 nose dived intact at 500 mph into a 16' ditch in Pennsylvania with the only artifacts being a pristine red bandana and a passport of one of the hijackers.

 People with dementia often have cogent times even at the end of their lives. Our brains can not be both erased into oblivion with no memory and still converse! The whole concept is based on bad information/assumptions.

 I find the CGVR boards selling the message of "no worse fate than dementia" on an hourly basis very detrimental to their own situations, aside from what it does to the person in need of help negotiating a fast paced world.

 Is it possible for us, the people living with dementia, to change our future by living today in peace? By sharing an optimism for ourselves so that our CGVRS can relax and enjoy themselves too?

Question authority. Definitely I am going to continue to seek peace and happiness.


Iris L.
Posted: Monday, June 13, 2016 1:34 PM
Joined: 12/15/2011
Posts: 18357


Alz+, you may have read my post.  The thread I was referencing was posted by a PWD about his perception that being in a nursing home as being in jail, and he didn't want that for himself.  I pointed out that as a pediatrician, I cared for a few patients who resided in nursing homes, and I did not regard them as jails, nor did I regard myself as a jailer.  I regarded them as disabled children who required a level of care for their medical issues that they could not receive at home, at that time.  A caregiver posted that she was offended by my response.  The posts deteriorated from there.  Those posts caused me to make the decision to stop posting on the caregiver boards.  


I agree with you.  Sometimes it feels hopeless to express an opinion as a patient.  I read so many disturbing posts on how the caregivers treat their LOs with dementia.  But we patients must be strong.  We can lead a horse to water but we can't make it drink.   Instead, we have to focus on our own emotional, spiritual and psychologic protections.  I really appreciate your posts about how your Orthodox readings help you.


Today, I spent two hours WORKING!  This is an achievement for me.  My whole complaints for the past seven years was that I was having trouble functioning.  Not so much about memory loss, but about not being able to get things done.  Now, I am functioning again!  It's not like when I was a practicing physician, but it is much, much better than over the past seven and more years.  I was able to work for two hours, doing housework and handling finances and filing, and making telephone calls, without taking a break.  Usually, just a few moments of work wore me out and caused me to need a break.  I feel very encouraged.  I feel almost like a normal person.  Also, I am going about and I am not in pain.  Yippee for me!


I think there is so much misunderstanding between PWD and caregiver.  My approach now will be to strengthen and rehabilitate myself to the point where I can avoid caregivers.  I will absolutely refuse to deal with anyone who treats me with hostility or annoyance.  I will do whatever I have to to avoid that.  I would rather live in a facility with professional caregivers than live with a caregiver who treats me poorly in my own home or in some other person's home.


The aim of early diagnosis is to be able to prepare what we want for our upcoming future life.  In addition to doing Best Practices, we need to focus on who will provide our own care.


Iris L.


alz+
Posted: Monday, June 13, 2016 1:59 PM
Joined: 9/12/2013
Posts: 3608


Iris - I am so HAPPY you are on a resurgence!

Also your comments about nursing home = jail and how you cared for children, made me cry. People see what is in their heart or fears in their head.

You made so many points that had me saying "Yes!" .

Well now I do not have to search CGVR boards for the JAIL reference. I have thought about being sent to jail in past few years. I thought I might like it - only 2 women cells available locally, TV, exercise, food, laundry done.

Until your post I did not understand the value of an early diagnosis. Thank you as usual for broadening my mind.

Love you - so excited you are doing better. Hope your sleep is deep and sweet too!


Iris L.
Posted: Monday, June 13, 2016 2:46 PM
Joined: 12/15/2011
Posts: 18357


Alz, this article is one that I lean on for my own care.  I posted it before, I don't know if you got a chance to read it.  Basically, there is a facility that believe in just going along with the PWD.  Let them live their lives, as long as they don't come to harm.  

 

 


Giving Alzheimer’s Patients Their Way, Even Chocolate

 

Margaret Nance was, to put it mildly, a difficult case. Agitated, combative, often reluctant to eat, she would hit staff members and fellow residents at nursing homes, several of which kicked her out. But when Beatitudes nursing home agreed to an urgent plea to accept her, all that changed. 


Read more:

http://www.nytimes.com/2011/01/01/health/01care.html?pagewanted=1&_r=2&ref=general&src=me  

 


I also like His Daughter's approach, which was to form an "entertainment committee" for her dad.  Everyone around him became a friend to him, not just a worker.  Wouldn't it be lovely to be surrounded by friends, and not taskmasters?

 

As far as that particular thread goes, there were some good posts about how to afford care at home for people who have assets and are self-pay and thus not eligible for Medicaid that they paid taxes for.  But the tone was horrific.  The message seemed to get lost in the tone.  If you want to read the entire thread, I will post a link for you.  But be prepared--it is truly horrific IMO!


Iris L.


alz+
Posted: Monday, June 13, 2016 7:54 PM
Joined: 9/12/2013
Posts: 3608


Beatitudes! Yes I remember that!

I just re-read all the looooonnnnnggggg posts above from me. I must have been daydreaming and writing.

I like that you set yourself up to live as YOU want, and remain independent. 

Did read some about the "nursing home or stay at home" debate and got so worked up I almost beaned Keeper. Wow. as happy as I am now, this summer, I do realize he could be killed, become sick himself, or find the caretaking role too much...and what?

well, I am NOT going to imagine myself on a locked ward, and if I do imagine myself there I will imagine myself dancing in some sunny corner. The future is never, it is always now. yet we have to plan some for the future.

The people who wrote about how much they loved taking care of their parent or spouse - or a child who has taken on the responsibility were very moving. This illness is tricky but it is not the worst thing that ever happened to me. Because of that, I am positioned for an end of life spent in contemplation and peace. Maybe so.


Iris L.
Posted: Monday, June 13, 2016 9:18 PM
Joined: 12/15/2011
Posts: 18357


I just found out that my one set of neighbors who I do tend to count on for emergencies will be moving soon.    Another neighbor moved away 18 months ago.  I have to think up a Plan B for emergencies.


The geriatrician told me that I should live closer to my family.  But my family members who are my age, are not in good physical shape themselves.  And I don't know the younger ones too well.  It is better for me to make my own plans and not rely on them.


We all should be making A, B, and C plans for ourselves.  We don't know what the future will hold.


Iris l.


llee08032
Posted: Thursday, June 16, 2016 7:12 AM
Joined: 5/20/2014
Posts: 4408


An article from the Alzheimer's Reading room said dementia is an "insidious and ugly disease." It's hard to figure who and what is being hated? The person with the ugly and insidious disease or the disease itself? Persons with cancer or heart disease still get loved on for their nice personalities. 

The 7% rule posits that communication is only 7% verbal and 93% non-verbal. 38% accounts for the tone of your voice....not what you say but how you say it. That leaves 55% of communication coming from body language and those eye's! 

The other major component of communication being, listening. I don't think PWD or many people in today's world are being listened to.

Essentially, the Chinese symbol for the verb “to listen” reads – “I give you my ears, my eyes, my undivided attention and my heart” Which is just about the best definition for listening I’ve ever heard. 

Listening with the heart involves a deeper level of listening. For example, if you are customer service representative in a  hardware store, is the person coming in to purchase a drill, really looking for a drill or a hole?



llee08032
Posted: Thursday, June 16, 2016 7:32 AM
Joined: 5/20/2014
Posts: 4408


What the windows to the soul can reveal:

Eye behaviors with emotional summaries:[36]

  • Eyes up - Different people look up for different reasons. Some look up when they are thinking. Others perform that action in an effort to recall something from their memory. It may also be a way for people to subconsciously display boredom. The head position can also come into play, however, as an upwards look with a lowered head can be a coy, suggestive action.
  • Eyes down - Avoiding eye contact, or looking down, can be a sign of submission or fear. It may also indicate that someone feels guilt. However, depending on the culture of the person, it may also just be a sign of respect.
  • Lateral movement of eyes - Looking away from the person to whom one is speaking could be a sign that something else has taken their interest. It may also mean that a person is easily distracted. Looking to the left can mean that a person is trying to remember sound, while the right can mean that the person is actually imagining the sound. Side to side movement, however, can indicate that a person is lying.
  • Gazing - Staring at someone means that a person shows sincere interest. Staring at a person's lips can indicate that someone wants to kiss another person. In general, staring means, "I want that."
  • Glancing - Glancing can show a person's true desires. For instance, glancing at a door might mean that someone wants to leave. Glancing at a glass of water might mean that a person is thirsty.
  • Eye contact - Eye contact is powerful and shows sincere interest if it is unbroken. A softening of the stare can indicate sexual desire. Breaking that eye contact can be threatening to the person who does not break the eye contact.
  • Staring - Staring is more than just eye contact, it usually involves eyes wider than normal. A lack of blinking may indicate more interest, but it also may indicate a stronger feeling than a person may intend to portray. Prolonged eye contact can be aggressive, affectionate, or deceptive.
  • Following with the eyes - Eyes follow movement naturally. If a person is interested in someone, then their eyes will follow that person naturally.
  • Squinting - Squinting of the eyes may mean a person is trying to obtain a closer look. It may also mean that a person is considering whether something is true or not. Liars may use squinting as a tool to keep others from detecting their dishonesty. Of course, squinting may also just be a result of a bright sun.
  • Blinking - Blinking is also a natural response that can occur for no other reason than having dry eyes. It can also be the result of a person feeling greater levels of stress. Rapid blinking can indicate arrogance while reduced blinking can move towards a stare.
  • Winking - Winking can indicate that two people understand something without using words. It can mean "hello" or it can be a sign of flirtation.
  • Closing of eyes - Closing the eyes serves to shut out the world. It can be a reaction to fear or embarrassment. Others may close their eyes as a way to think more sincerely about a particular subject.
  • Eye moisture - Tears obviously indicate sadness, but moisture also has a more practical purpose to wash and clean the eyes. Damp eyes can be suppressed crying or an expression of extreme happiness or laughter. Men, in many cultures, are not expected to cry but may experience damp eyes in place of crying.
  • Pupil dilation - Pupil dilation may be harder to detect by most people. Sexual desire may be a cause of such dilation. It may also be an indication of attraction. Physiologically, eyes dilate when it is darker to let in more light.
  • Rubbing of eyes - Eyes may water, causing a person to rub their own eyes. This can happen when a person feels uncomfortable or tired. It may also happen when a person simply has something in their eyes.

llee08032
Posted: Thursday, June 16, 2016 7:40 AM
Joined: 5/20/2014
Posts: 4408


What the windows to the soul can reveal:

Eye behaviors with emotional summaries:[36]

  • Eyes up - Different people look up for different reasons. Some look up when they are thinking. Others perform that action in an effort to recall something from their memory. It may also be a way for people to subconsciously display boredom. The head position can also come into play, however, as an upwards look with a lowered head can be a coy, suggestive action.
  • Eyes down - Avoiding eye contact, or looking down, can be a sign of submission or fear. It may also indicate that someone feels guilt. However, depending on the culture of the person, it may also just be a sign of respect.
  • Lateral movement of eyes - Looking away from the person to whom one is speaking could be a sign that something else has taken their interest. It may also mean that a person is easily distracted. Looking to the left can mean that a person is trying to remember sound, while the right can mean that the person is actually imagining the sound. Side to side movement, however, can indicate that a person is lying.
  • Gazing - Staring at someone means that a person shows sincere interest. Staring at a person's lips can indicate that someone wants to kiss another person. In general, staring means, "I want that."
  • Glancing - Glancing can show a person's true desires. For instance, glancing at a door might mean that someone wants to leave. Glancing at a glass of water might mean that a person is thirsty.
  • Eye contact - Eye contact is powerful and shows sincere interest if it is unbroken. A softening of the stare can indicate sexual desire. Breaking that eye contact can be threatening to the person who does not break the eye contact.
  • Staring - Staring is more than just eye contact, it usually involves eyes wider than normal. A lack of blinking may indicate more interest, but it also may indicate a stronger feeling than a person may intend to portray. Prolonged eye contact can be aggressive, affectionate, or deceptive.
  • Following with the eyes - Eyes follow movement naturally. If a person is interested in someone, then their eyes will follow that person naturally.
  • Squinting - Squinting of the eyes may mean a person is trying to obtain a closer look. It may also mean that a person is considering whether something is true or not. Liars may use squinting as a tool to keep others from detecting their dishonesty. Of course, squinting may also just be a result of a bright sun.
  • Blinking - Blinking is also a natural response that can occur for no other reason than having dry eyes. It can also be the result of a person feeling greater levels of stress. Rapid blinking can indicate arrogance while reduced blinking can move towards a stare.
  • Winking - Winking can indicate that two people understand something without using words. It can mean "hello" or it can be a sign of flirtation.
  • Closing of eyes - Closing the eyes serves to shut out the world. It can be a reaction to fear or embarrassment. Others may close their eyes as a way to think more sincerely about a particular subject.
  • Eye moisture - Tears obviously indicate sadness, but moisture also has a more practical purpose to wash and clean the eyes. Damp eyes can be suppressed crying or an expression of extreme happiness or laughter. Men, in many cultures, are not expected to cry but may experience damp eyes in place of crying.
  • Pupil dilation - Pupil dilation may be harder to detect by most people. Sexual desire may be a cause of such dilation. It may also be an indication of attraction. Physiologically, eyes dilate when it is darker to let in more light.
  • Rubbing of eyes - Eyes may water, causing a person to rub their own eyes. This can happen when a person feels uncomfortable or tired. It may also happen when a person simply has something in their eyes.

alz+
Posted: Thursday, June 16, 2016 6:17 PM
Joined: 9/12/2013
Posts: 3608


L lee! Fantastic! Can't believe you found this and were able to share it!

There is a study which shows a relationship is doomed if one person in the couple regularly rolls their eyes when their partner speaks.  I used to do that A LOT to Keeper and when I heard that I began to practice not rolling my eyes which led to me learning to respect his Other-ness and right to his own opinions and take on things.

People do think communication means talking, and quickly, no "dead air".

I had a Big Thought the other night about the contagion of attitude and energy.  If people start off with the premise the illness is HELLish and that it will crush everyone in its path, then everything they say and do speaks to this. Thinking it is so awful infects everyone, colors their thoughts and hence creates what they dread. I forgot the poignant genius of that moment and was too tired to write it down.

Since ALZ I have become more sensitive to what other people do and say than ever before and can ruminate on things until I feel crazy. Soft eyes, gentle voice, patience - just crave that now. (are you thinking time to rescue middle aged dog soon?)

I am pretty sure as soon as I close down my computer the Big Thought will come back and I will write it down this time. 

There are definitely a prevalence of creepy destructive associations with dementia. People get enraged if someone even slightly intimates their brain may not be functioning up to par. Ever get the leprosy rejection? When someone finds out I have ALZ they almost back away and then make haste to avoid me. 

 I communicated with my Dad right thru his dying, eyes and touch, facial muscle tension/relaxation, tears forming, smiles...all say much more than words and words and words.

Once you notice the use of demonic adjectives coupled with ALZ it is shocking. Not helpful, needs to be questioned more where this crap came from.


HistoryGeek
Posted: Thursday, June 16, 2016 6:29 PM
Joined: 6/16/2016
Posts: 33


I agree. There is such a stigma surrounding dememtia. It's frustrating. It.seems that people are living in the past. So much has been discovered. We are not who they think we are. We have purpose. .. we have value. We can still be productive. 

 


Iris L.
Posted: Thursday, June 16, 2016 9:59 PM
Joined: 12/15/2011
Posts: 18357


No one knows I might have dementia.  If anyone asks about an issue that I might have, I blame it on lupus.

People are sympathetic about lupus.  I have already experienced enough rejection.


Iris L.


llee08032
Posted: Friday, June 17, 2016 5:18 AM
Joined: 5/20/2014
Posts: 4408


I think I have a greater sensitivity to body language and facial expressions more than ever. People are so busy talking, texting and tweeting and no one is listening, really listening with their eyes and their hearts. 

I think training for understanding body language should be a key component in dementia care.


alz+
Posted: Friday, June 17, 2016 6:00 PM
Joined: 9/12/2013
Posts: 3608


HistoryGeek wrote:

I agree. There is such a stigma surrounding dememtia. It's frustrating. It.seems that people are living in the past. So much has been discovered. We are not who they think we are. We have purpose. .. we have value. We can still be productive. 

 

I do try to pass once in awhile by dressing better. However, I live in such a small community there are few who do not know and the talking to myself while shopping or overly engaging strangers sometimes gets me the "LOOK" but I suspect they assume I am drunk. I do not drink at all, likely allergic to alcohol. Someone recently mentioned having a beer, I think that would qualify as medicinal.

I may not be very productive anymore but I feel very playful last 4 months. Having a roof put on my house (yes, it is being done in stages like the rest of house repairs! shingles go on Monday they say) and the men doing it got used to me when they were finishing the walls and floors last winter. Really nice to have someone laugh with me, as close to sex as I am likely going to get.

I think good sex should be on the Best Practices list. Along with dog companion or cat.

The_Sun_Still_Rises
Posted: Saturday, June 18, 2016 9:40 AM
Joined: 7/24/2015
Posts: 3020


What a beautiful article, Alz+!  And this is exactly why you need be write that book - put this in it!!!!

I could no agree with you more...on every count...as this is what I have seen also. 

I am loath that the Alz Asso perpetuates the notion that it is "so-bad" taking care us, I am loath the well-meaning peop on this forum also perpetuate that...so that it becomes what used be known as the "consensual reality" or "groupthink" about Alzheimer's...although it has no thing whatsoever do with reality. 

So yes, I have a progressive an fatal brain disease....so what?!  Seriously...so what?!  I am still me.  Sure things are harder and more challenging do now...but so what?!  Maybe is because I have lived with chronic pain for years that allow me realize that you can no let that stop you, that you have make it like weather, an get on you life! 

I have so enjoyed time way from the dementia community (although miss eve one an wonder oft how eve one doing)...exactly because no one in regular world knows I have this.  I can work on house an yard with no words...an for short times I am oblivious that I have this at all.  It is such a welcomed relief. 

Sure, if peop around me knew the battle I was fighting stay alive and get by, they might be inspired...or saddened...or any other host of misconceptions...but so what?!

I love you article here...so well spoken/written.  And I firmly agree, as I have seen it play out time an time gain my own life with daughter - we are like mirrors...we give you back what you give.  If you scared us, we be scared you.   If you irritate us, we will irritate you.  An like you, I too am a firm believer that we really CAN live a phenominal life WITH this disease...with the right an understanding supports.  An, I also do no think it all that hard support us correctly.  Indeed, the biggest challenge for caregivers may just be the internal work they need do get out of the box of thinking this disease is and has be "so bad."

<3x1000

Thank you writing this and posting it.  <3


alz+
Posted: Monday, June 20, 2016 10:02 AM
Joined: 9/12/2013
Posts: 3608


I found this video on youtube by Byron Katie - she wrote a book on thinking about your thinking and this video she questions the concepts held by a woman whose Father has frontotemporal dementia. I think this is really excellent.

http://www.alz.org/dementia/fronto-temporal-dementia-ftd-symptoms.asp

https://youtu.be/hnXBQNeN2yI   

The video shows the distraught daughter talking with Byron Katie, answering questions are what we are sure is true.

This part, where we question our own beliefs, and how changing our beliefs affects others is so critical to dealing with our loved ones who have dementia.

I remembered driving my Dad around in his old enormous red cadillac and we would stop by the beach and watch the sea gulls. When the birds would do odd stuff we would look at each other and smile. My mother did noo believe there was any point int his, so she did not know how to have fun with him.I always had 2 dogs when I was younger and any of the dogs he met all broke through instantly because they did not require word responses within 3 seconds.

we do not disappear, we are still there, sometimes entering other dimensions of consciousness. Let it be ok and we will all be so much  happier.

the other Most Dreaded problems, flinging poop, outbursts, mischief are not so diabolical when we see the person is still trying to take care of their own needs and instead respond with practical changes in care procedures.

what do you think?


alz+
Posted: Monday, June 20, 2016 10:18 AM
Joined: 9/12/2013
Posts: 3608


 IRIS wrote:  there were some good posts about how to afford care at home for people who have assets and are self-pay and thus not eligible for Medicaid that they paid taxes for.  But the tone was horrific.  The message seemed to get lost in the tone.  If you want to read the entire thread, I will post a link for you.


If you post link to that discussion or send it to me privately I think I am ready today to read it.

Feeling very spunky. Will repeat here link to video on questioning your own beliefs.

https://youtu.be/hnXBQNeN2yI


Thank you SUN for your High Praise. I value everyone's thoughts so much.Also YES to your experience of being in the moment doing something and forget there is anything WRONG with you, and in a sense, there is nothing wrong with us.

It is just another way of nature taking its course.


Iris L.
Posted: Monday, June 20, 2016 10:19 AM
Joined: 12/15/2011
Posts: 18357


I started the video but I don't have time to finish it right now, because I am getting started on my day.  But I will get back to you, Alz+.


Iris L.


Iris L.
Posted: Monday, June 20, 2016 11:05 PM
Joined: 12/15/2011
Posts: 18357


I watched the video.  She seems to be telling the young woman to imagine her fear of AD as not being real.  I don't know.  


When someone becomes blind or deaf, she is supported in that new reality.  No one supports memory loss.  Everyone is afraid of it.    People want to run away from AD.  This is very bothersome to me.  AD is real, and PWDs deserve to have support and to be surrounded by strength.


The most awful things that happen to a person causes others to be supportive.  No so for us.  We have to build up our own support.


Iris L.


The_Sun_Still_Rises
Posted: Tuesday, June 21, 2016 7:44 AM
Joined: 7/24/2015
Posts: 3020


FEAR = False Experience Appearing Real.

Fear in general, is no real. 

If you think bout our brain...an just *how* it generates emotional responses...then you quickly come realize that no one of you emotions "real".

The brain a funny character...it actually robs you so much of life.  Like, did you know, the only time you eve tasted a brownie is the very first time you ate one???  After that, all you brain does is (literally) "recall" the taste of a brownie.  (this could be used as a wonderful diet aid those so inclined).  Same goes for what you see.

Emotions, an emotional responses, are actually "programmed" in after birth.  I used give example of 2, 3 year olds going for ice cream their dads on a Sunday morning.  Both kids drop their cone on ground.  Both cry.  Dad number one says there there, no worry, an gets him another cone.  Dad number two tells him buck it up, he a boy, stop crying an walks way.  There on after...Sunday's will cause these two boys brain's "recall" certain feelings.  It happs subconsciously an beyond the boy's control. 

But it no truly beyond our control, we could change the programmed responses...you just need know how brain works do it. 

Same goes true childhood sex abuse victims, an is perhaps most telling there...an the damage we do peop's emotions due our lack education brain.  Many (no all) child sex abuse victims were no particularly found it a bad thing.  Indeed, in many cases, this was the time that pers was nicest them.  Many enjoyed the sensations.  Many actually looked forward it.  (Yes, you have talk peop find this out).  Then they grow up an encounter our society which says this wrong.  For the first time they encounter shame it.  Of all sexual assault surviors, these grown children are the hardest reach an work with...because it wasn't their offender who harmed them - but society's point of view.

Same way, WE are harmed by society's view on Dementia.  We are TOLD it is horrible.  This is affirmed by all we read what peop write say.  Our doctors an providers just so sad us, further reinforcing this FALSE view.

Dementia does NO have be horrible.  Like Alz+ points out, it can be quite wonderful.  An caring for us can be quite wonderful. 

If you think of what peop deem horrible...usually built in is a failed expectation that things should be otherwise.  Some one might say, my job horrible...this comes with it the silent false belief that the job should be easy. 

In so many real ways - change you thinking - change you whole experience things! 

Another way say, change what you tell you brain (since it does no know what real or no), change you experience things! 

Of course, we like blame other things this...but just like an one need change their ways (like an alcoholic), as long as we blame outside things...we neve look at, or shift our thoughts, or see ourselves as cause in the matter of our lives...an thus neve really have ability have power over it. 

Hope that helps.

<3


llee08032
Posted: Wednesday, June 22, 2016 6:37 AM
Joined: 5/20/2014
Posts: 4408


((((Sun)))) Good to see you!
llee08032
Posted: Friday, June 24, 2016 6:55 AM
Joined: 5/20/2014
Posts: 4408


I ventured to the other side and could not find the referred to post but found another perhaps equally horrifying. The post reeked of disgust and contempt for the mother. The injustice of not one iota of an attempt to understand the mother's behaviors was angering and at the same time another jolt of reality. I bit my tongue as it was obvious self reflection or consideration of what the underlying factors were that led to the behaviors did not matter. 

I'm busy trying to live my life...spending time with son and granddaughter. My son is going to court for partial custody of my 3 y/o granddaughter whom I did not see for several years. I'm looking forward to her being a part of our lives and I cannot wait until my 10 y/o granddaughter finally gets to see her little sister again. My son works very hard for $15 an hour and a big chunk of his pay goes to child support. He is unlike his father and being a dad is his most important role in life. I am so proud of him. BTW my younger son sent me a Father's Day card in recognition of how I was the sole breadwinner, and both mother and father. I loved getting that card!

Working at a low wage job while going to school and trying to be a parent was not easy. You have to sacrifice time spent with your children and you never get that back and it oftentimes comes with consequences because you cannot possibly be in 3 places at one time. I feel like I'm a better mother now for some reason. More patient and understanding.

alz+
Posted: Friday, June 24, 2016 7:43 PM
Joined: 9/12/2013
Posts: 3608


L lee

wish my mother had been 10% of the mother you are.

I like to learn more about us in these posts and situations.

as in ALZ care, there are Mothers who distance when  child is hurting. "You must have done something for that to happen! Go to your room!.

and the one who says, "Tell me what happened sweetheart. Come here."

When "something happens to me" and I start to meltdown Keeper leaves, and still often argues, and then ignores me.

I long for him to open his arms and say come here, sit with me till you feel better."

Dream on, so I am in my quiet room, window open on sunset, fan blowing across the bed, enjoying reading what people are thinking. Hope to go for long sleep and long walk in morning.

love my friends on the boards!


Iris L.
Posted: Friday, June 24, 2016 9:24 PM
Joined: 12/15/2011
Posts: 18357


I understand, Alz+.  When you're sick, there is the one who says, "call me when you're better."  And then there is the friend who says, "what can I do to help?"  


It's good for us to know which one we are dealing with.


Iris L.


llee08032
Posted: Saturday, June 25, 2016 8:47 AM
Joined: 5/20/2014
Posts: 4408


Hooray! You got the couch! I had my good furniture set treated with protectant spray. My granddaughter spilled red fruit juice on the hassock and it stained anyway. I guess it depends on what you spill, the fabric or maybe the hassock wasn't treated? Nowadays I like the cool feel of soft leather furniture for lounging but not so much for decor. Leather works well with pet hair and odor also. I turned dinning room into sitting area with good furniture and living room with leather furniture. 

I have that urge to paint rocks again! Maybe with some spiritual messages and sea and landscapes.    


Iris L.
Posted: Saturday, June 25, 2016 11:49 AM
Joined: 12/15/2011
Posts: 18357


I have tiny holes poked into my leather chairs, from the cats claws from them jumping onto the chairs, not clawing.    I need animal-proof furniture.


Iris L.


llee08032
Posted: Friday, July 1, 2016 11:27 AM
Joined: 5/20/2014
Posts: 4408


I think I am on topic here. My fears about getting discovered and getting fired from  work have not come to pass! I don't exactly know what this means? Am I a good liar perhaps a con artist? Should I have sought employment in the secret service field?

I'm not doing anything special. Am I getting better at making accommodations? Is my work ingrained or imprinted in my brain somehow? Long term memory? Is it the passion and love I have for my work that keeps me going? Is it my need to financially sustain the lifestyle I have carved out for myself? Is it the fear of being  poor again? My family? Faith? Courage? I do feel strong! I have drawn strength from many of you on the board. The encouragement I receive here I can't even put to words!

It seems as long as I can find my way to work when I get there I manage to function on most days. I have gotten good at covering up the dysfunction on the bad days! I can't remember when I thought will I be able to manage working for another year or two but I think I'm close to that point? Everyone where I work at is overworked and busy. I think this is working in my favor. I've learned to quietly listen to the persons at work talking about how busy they are as I try to calmly meander the storm. 

I have mustered up the courage to apply for an inter-agency promotion. Furthermore, to my dismay I have even applied for another position outside the agency and attended the interview last week! I can't tell you how much the thought of working in a different department or somewhere else a year or so ago would have frightened me! Can I buy more time? I don't know but I am going to try nevertheless. If it all goes haywire in a handbasket so be it. I'll just have to forgive myself. I am not going to let fear run my life for the time being!



Iris L.
Posted: Friday, July 1, 2016 12:10 PM
Joined: 12/15/2011
Posts: 18357


Good going, Ilee!  I agree with you.  I think a lot of the hype that we are useless is overblown.  We CAN function, if we make accommodations.  We have to slow down and function in a more mindful manner.  


I think a lot of our poor functioning comes from drama and obstacles put up by other people in our fast paced, oftentimes chaotic society.  I know I do better when I set my own pace.


I am so glad that you are succeeding.  I have been thinking about you and how you are getting along.  I am doing better, also.


Keep up with what you are doing.  But be cautious.  You are comfortable where you are.  Why do you want to leave?  I understand the idea of a promotion, but that will require new challenges and new stresses.  I am confident in your abilities in handling what you have to do today, but I don't want you to overwhelm yourself.  You can function  well today because you can anticipate what needs to be done, and you can prepare.  Surprises are hard to handle.


You have a two year timeline for retirement, if I remember correctly.  Is this still in the picture?  


Best wishes!  Keep up the good work!


Iris L.


The_Sun_Still_Rises
Posted: Monday, July 4, 2016 10:23 AM
Joined: 7/24/2015
Posts: 3020


I agree. 

We are still us, just as we were before.  So my joints may be achy, an I may be weaker, an it may take me a week figure something out..but I am still the same me. 

I think we get good at living with our challenges...an overcoming our own barriers. 

I see no reason why we can no continue having productive lives...right up until we cannot.  I sure intend do this. 

I think when we give up, or think we can not...we lose our ability do.  Granted, some have the luxury of having others around do things for them...so a little easier them give up.  I am glad for them, but I am also glad I don't have that. 

Part of me would like sit back on a beach in Hawaii an sip mango juice an be a bumbling idiot, happy in the sun an sky.  But really, I am quite happy here, working my tail off renovating this home for my mom...an my daughter an granddaughter.  It stretches me my limits, makes me strive...work hard....an the benefits my hard work show in the improvements we make. 

I feel a bit "Towanda" from the movie Fried Green Tomatoes...when I sit back and consider that a person with as advanced dementia as I have is do all this that I am doing...oh yeah!

So you go gurl!  An I hope you get the promotion!!!  Fingers crossed for you. 


alz+
Posted: Tuesday, July 5, 2016 11:25 AM
Joined: 9/12/2013
Posts: 3608


Iris L. wrote:

I watched the video.  She seems to be telling the young woman to imagine her fear of AD as not being real.  I don't know.  

When someone becomes blind or deaf, she is supported in that new reality.  No one supports memory loss.  Everyone is afraid of it.    People want to run away from AD.  This is very bothersome to me.  AD is real, and PWDs deserve to have support and to be surrounded by strength.

Iris L.

******************
Byron Katie is obnoxious to most people but her method of dealing with perceived trauma has helped me off and on. She calls this technique of challenging our thoughts The Work.
I responded to her video on points you made about the Father's dementia "not being real" - but having more background on her views I could see The Work, asking yourself a series of questions about what you believe to be true, helping the young woman see her Father as still her Father, not a person with FT dementia.

Emotions are very strong and my initial reactions to things people say and do were seen through a lens of past certainties. Using her methods did teach me to question myself, not by making me doubt my reality, but is there MORE to that reality. Is there some way to find some joy in any situation? That is about as positive an outlook as I will ever muster!

alz+
Posted: Tuesday, July 5, 2016 11:32 AM
Joined: 9/12/2013
Posts: 3608


L lee -

wow. You are learning how to accommodate your changes big time.

Really exciting! I think taking a sort of casual approach to "mistakes" is the best cover and leads to being able to handle more.

I do like the couch and am out of bedroom using it. They charged me for treating it with the stain resistant stuff but if I do not SEE them doing it I don't believe it! ha!

The boards and my friends here have helped me so much. Late in life to find my self worth but late than never!

Also, lately Keeper has softened his approach with me and I am so happy when he allows me my slowness, makes me accept his shortcomings with respect for all he does for me.

Thank you to everyone. And good to see SUN here now and then! gee I worry about people, dogs, dear, the turtle crossing the highway, a tree that looks weak...I am learning iner stuff mostly now. preparing for Orthodox style end of life with more enthusiasm and gusto.

well done Pioneers!


Iris L.
Posted: Tuesday, July 5, 2016 11:33 AM
Joined: 12/15/2011
Posts: 18357


I agree that the woman in the video could do well by continuing to view her father as her father.  But is it only Byron Katie who knows this?  I still miss the point.  But I am glad that you got benefit from it, Alz+.  We have to get our help from wherever we can find it.  Keep enjoying your couch.


Iris L.