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changing the outcome of Alzheimer's through thought
alz+
Posted: Friday, January 31, 2014 7:01 AM
Joined: 9/12/2013
Posts: 3608


when given the diagnosis of Alzheimer's what did you imagine? I remember crying in the hotel room and thinking of all the LOSS to come. devastated.

The doctor who diagnosed me was in his 70's and very kind, from India, skilled in being gentle with his patients who he told me he "loved". I think those brief moments with him changed my outlook on this disease process.

 

The placebo effect has been shown to be as powerful as chemical agents. In the same way our body (which is NOT disconnected from our brain function) can influence the course of the disease. If we live in fear and dread and set in stone a prognosis of 7 stages, each more debilitating than the previous with an outcome of complete disintegration of our identity and worth, do we expect anything different to occur?

 

How many of us have had unusual experiences? How about when patients who have no communicated in years suddenly speak and seem like their previous selves just before dying? Vast amount of information on this subject by people more intelligent and educated than me, but I do have my own experiences that are "para-normal" and my work as a massage therapist proved over and over that if people could open to the possibility of things having a different outcome they usually did have excellent outcomes that defied what their doctors had told was possible.

 

Suggesting we question our ideas of what our future holds, and implant ideas, placebo agents, that we will in fact experience other realms, have more emotional connections, become unblocked to receive divine interventions, and so on. Far different from DENIAL, and perhaps when we sit and stare in silence for hours we are not seen as empty vessels but people exploring new worlds unavailable to those with normal brains. We all die, let us not die defeated by a diagnosis given to us by people who have little to offer.


jfkoc
Posted: Friday, January 31, 2014 9:01 AM
Joined: 12/4/2011
Posts: 21250


Thank you alz+.
Paul Hornback
Posted: Friday, January 31, 2014 10:59 AM
Joined: 8/9/2013
Posts: 584


alz+, well said girl! I agree with you completely. I try to live my life expecting great things to happen. I may not exactly be like I was before, but I'm finding new things to enjoy and excel at. I'm still moving forward and it sounds like you are too!

God Bless, Paul


Sea Field
Posted: Friday, January 31, 2014 6:38 PM
Joined: 8/5/2012
Posts: 1872


I agree - well said!
Myriam
Posted: Friday, January 31, 2014 8:44 PM
Joined: 12/6/2011
Posts: 3326


Amen!
Forget-me-not
Posted: Sunday, February 2, 2014 12:12 PM
alz+ wrote:

 

 Suggesting we question our ideas of what our future holds, and implant ideas, placebo agents, that we will in fact experience other realms, have more emotional connections, become unblocked to receive divine interventions, and so on. Far different from DENIAL, and perhaps when we sit and stare in silence for hours we are not seen as empty vessels but people exploring new worlds unavailable to those with normal brains. We all die, let us not die defeated by a diagnosis given to us by people who have little to offer.

Beautiful! My sentiments exactly! I read somewhere that dementia in Japan is considered entering a sacred or holy place.

I think dementia "patients" are entering more and more a new sphere while disconnecting from this world, spending more and more time in the next dimension--unseen and unknown by "healthy" people.

Maybe we should regard the journey as exciting and liberating rather than dreadful and hopeless?



Sea Field
Posted: Monday, February 3, 2014 2:20 PM
Joined: 8/5/2012
Posts: 1872


I love this conversation. 

 

I too have seen the most amazing changes in my mother, and now my husband as they journey through dementia. 

 

Much has been taken away.  But much has also been given.

 

It's the rest of us that need to learn how to 'see'.


alz+
Posted: Monday, February 3, 2014 10:17 PM
Joined: 9/12/2013
Posts: 3608


If inclined we should rebel against stigmatized version of the horror of becoming an empty vessel. Some times I feel like I am in the state when I think I am relaxing and day dreaming but my husband "wakes" me to tell me I am snoring really loudly. I want him to wake me when I do this as doctors told me not to let it go on for a bunch of reasons. But the point was, I could SWEAR I was awake and not asleep. That stage where one is drifting into sleep is where a lot of time is spent during some part of the journey.

I am feeling that choosing to believe there is more to this than what most people see from the other side, and which I know to be true from caring for others with ALz through their deaths, sudden clarity like WAKING UP.

My father did not speak much for a long time but at one holiday dinner I served him a big plate of very beautiful and tasty food and he said clear as can be and loudly, "FINALLY! some thing I WANT to eat!" My Mom and I looked at each other stunned s he then used his fork and finished it off!

Another day I was sitting on a couch crying and lots of people were at the house. It was MY DAD who came over and sat by me and took me hand. My Mom came over and asked "What's wrong?" and my Dad answered "The kids on the playground have been mean to her." and it was exactly the feeling I was having but as a 45 year old woman over worked on my job.

During his last week we communicated without words and he opened his eyes and squeezed my hand when I told him it was fine to go any time now.

We are alive and aware to the end, so I am old hippie looking forward to new states of awareness. Prayers help me a lot now. Always will.


Sea Field
Posted: Tuesday, February 4, 2014 1:45 PM
Joined: 8/5/2012
Posts: 1872


alz+

 

I deeply appreciate your willingness to describe what this experience has been like from your perspective.  I too have suspected that much is going on during those 'in between' states.  

 

 I remember a time a couple years ago when my husband was dozing on the couch.  Suddenly he started speaking out loud in a different language.  It was very smooth and the cadence and inflection sounded to me to be a full, intact language.  Maybe eastern European.  I don't know.  He was having quite a conversation that lasted several minutes.  Interestingly, my husband doesn't know any language other than English when he is awake.  So what was that?  I always wondered. He had no recollection of this happening.  

 

 I've always suspected that the veil between this dimension and the next (or other dimensions) thins with dementia.  That those with dementia can traverse between them much more easily than the rest of us.

 

While discussing alzheimers with a friend of mine who is very intuitive, she stated that her feeling/understanding is that a great deal of healing at the soul level goes on while in the 'in between' states.  I like this.  I hope it is true.

 

I definitely lean more towards the outlook in Japan that Forget-me-not mentioned - that dementia is a sacred journey. 

 

Blessings to you,  Cynthia


alz+
Posted: Saturday, February 22, 2014 8:08 AM
Joined: 9/12/2013
Posts: 3608


W ant to add to new voices out there about Alzheimer's (or memory loss/dementia of all kinds?) that it is a sacred journey IF the condition s are right.

 

Found 2 new books for caregivers (friend on journey) 

 

You Say Goodbye, We Say Hello  Montessori Method For Positive Dementia Care) - seemed really good for people with any artistic joy background.

 

The Long Moment by Richard Fenker PHD - yes, the gift of someone being still and quiet while I search for a thought. My counselor provides this silent shared time and it is energizing and profound.

This guy also offers CARDS which help people communicate.

 

I am going to buy MORE books and make a section in the town library so others can check them out and return them.

 

My memory has changed again recently, this morning I was able to type and write in my notebook when I woke up at 4am with headache and used some cannabis to relieve the pain (also have recurrent batch of shingles). The medical marijuana seems to restore my thinking at times maybe by transmuting the anxiety that plays in the background into inspiration energy..

 

This is about new BOOKS for caregivers and those of us looking for ways to help our friends who assists us in life to learn how to have a lot better time.

MEGA BETTER LIFE possible outside drugs and exasperation.


jfkoc
Posted: Saturday, February 22, 2014 8:41 AM
Joined: 12/4/2011
Posts: 21250


again, thanks....
hasan
Posted: Thursday, March 6, 2014 5:39 PM
Joined: 3/6/2014
Posts: 2


he my working mobile service alzheimers use 4 month off 3month side effect but my memory loss you sugetion please
Myriam
Posted: Friday, March 7, 2014 1:03 PM
Joined: 12/6/2011
Posts: 3326


Hasan, please make an appointment with a doctor who specializes in Alzheimer's and other dementias if you believe you are having symptoms.
Sea Field
Posted: Sunday, April 20, 2014 8:46 AM
Joined: 8/5/2012
Posts: 1872


alz+,  I am encouraged by a change that I see in the way dementia is being perceived - at least by some.

 

In a recent discussion with someone related to my husband's dementia, to opening our awareness to beauty and to awakening our consciousness, someone sent this message to me: 

 

 "Ah the magic of a demented brain.  When we let go the knowledge of what life is and move headless into the physical spiritual adventures. . . .  miracles happen constantly ... By simply reframing everything that is happening and moving it from the duality of head to the unity of the divine heart he is exploring a physical spiritual world that others spend a life time trying to experience and understand. What a gift it is to be his witness ... My love to your husband for his many blessings he shares."  

 

Just wanted to share this.  Hoping it brings some encouragement to you.  

 

Cynthia


Myriam
Posted: Sunday, April 20, 2014 7:46 PM
Joined: 12/6/2011
Posts: 3326


And so it is.
Forget-me-not
Posted: Sunday, April 20, 2014 7:51 PM
Sea Field wrote:

alz+,  I am encouraged by a change that I see in the way dementia is being perceived - at least by some. 

  

In a recent discussion with someone related to my husband's dementia, to opening our awareness to beauty and to awakening our consciousness, someone sent this message to me:   

 

 "Ah the magic of a demented brain.  When we let go the knowledge of what life is and move headless into the physical spiritual adventures. . . .  miracles happen constantly ... By simply reframing everything that is happening and moving it from the duality of head to the unity of the divine heart he is exploring a physical spiritual world that others spend a life time trying to experience and understand. What a gift it is to be his witness ... My love to your husband for his many blessings he shares."   

  

Just wanted to share this.  Hoping it brings some encouragement to you.   

   

Cynthia 

Oh Cynthia, thank you for this lovely quote!

My husband and I are closer now than we have ever been. We share each day to the fullest. DH has always been emotionally reserved, but now feels free to tell me how much he enjoys being in love with me many times a day. We always walk hand in hand and are grateful for every day, living in the moment and putting everything else aside. He teaches me to see the world through his eyes. What a blessing!

Reason and logic are being put aside, and we live mostly from the emotional level now--a whole different way of living.

Thank you, dear friend, for this lovely reminder.



alz+
Posted: Saturday, May 10, 2014 4:25 PM
Joined: 9/12/2013
Posts: 3608


changing the experience of Alzheimer's for the person who has it and the ones who help take care of her/him by adjusting the environment and acknowledging the reality of feeling behind the expressions of anger, crying, accusations.

 

who stole my ring?!  = I can't find my beloved ring, or I am frightened I am losing things!

 

I hate you!  = the way you treat me gives me the creeps. I need you, I love you, look at me, be gentle, let me know I matter. Also, feel like I am living in solitary conferment, need some fun, need to get out*

 

I want to go home! = I miss feeling like I have my own home, my own safe place where I matter. Comfort me!

 

running away = need some fun and time not be watched so making a break for it*

 

* I ran away recently. I escaped being put in respite care for agitation and anxiety. I was bored! Felt my life going down the drain! so took off, found a motel, went out for spaghetti dinner, had fun, enjoyed the motel and the owner was helpful and excited for me. I left a message with husband that I was on vacation,  all was well, back soon. The next morning I met with my counselor, went to a book sale, looked at fabric, got a sandwich and ate in a park ALONE! When I got home there was a missing person file waiting to be filled out, cops were notified (and thankfully unimpressed!) the social worker was sounding alarms and calling it a "manic episode" ...! I am back to sitting in the house. It was great. Not a trip like Iris had, but I  gave myself a much needed vacation. No sense scolding me, it was great medicine, no side effects.

 

when the environment is not overwhelming or dangerous but instead conducive to living at one's own pace, flowers, trees, bird feeders, animals, kindness, a good bed, space to be creative and so on, the course of the illness is not so terrifying. I can still help create my ideal world in 800 sq feet and weep for those who are not understood. medications, good if you like them, but just letting us have some free time and some fricking space is a good treatment!

love to all


Myriam
Posted: Saturday, May 10, 2014 4:38 PM
Joined: 12/6/2011
Posts: 3326


Well said, alz+. Did your husband come to understand your position and your feelings? It is frustrating when caregivers decide to take all powers away from those of us diagnosed, particularly when it is done out of fear and/or control, instead of reason.
alz+
Posted: Saturday, May 10, 2014 8:46 PM
Joined: 9/12/2013
Posts: 3608


He does not understand  a lot about being my care friend companion, I need to widen my circle of friends who will help me.

from his point of view my staying at respite was a great idea! And some day it will be, but he had no say when I bolted. I just made a run for it.

I did email him I was "in a motel and having a good time' etc and yet the case worker was involved and wanted me in respite care too for her own reasons and to "give my husband a break." well he could have the same break with me in a nice motel and if I could drive I would have gone to the Big Lake and stayed there for a week.

It seems to me our journey through this will collapse before long and I am now ready to have an "outsider" come in and help. I wanted him or one of children to rescue me until counselor has helped me see I can get by on my own more than seems possible.

He is doing his best but really not going to adjust to changes and his not working has to change anyway.

I have no idea why I got very calm thinking about him not helping me any more! Ha!

The dog, a radio, a clean house, good bed, peanut butter and bananas and long slow walks - that is my current dream vision.

I think I'll suggest he go back to welding as soon as possible!

love to all


Myriam
Posted: Saturday, May 10, 2014 9:12 PM
Joined: 12/6/2011
Posts: 3326


For your own well being, and that of your husband's, ask him to find a caregiver to stay with you while he works. Please understand that our loved ones whom care for us get exhausted and need breaks. It is best to find a professional caregiver. The Alzheimer's Association should be able to give you and your husband some ideas for locating an agency in your area.  

 

Please call or have your husband call 800-272-3900. It is the 24 hour hotline to get  information, have your questions answered, and guide you two through the process. 


Iris L.
Posted: Sunday, May 11, 2014 4:30 PM
Joined: 12/15/2011
Posts: 18520


alz+ wrote:

from his point of view my staying at respite was a great idea! And some day it will be, but he had no say when I bolted. I just made a run for it.

I did email him I was "in a motel and having a good time' etc and yet the case worker was involved and wanted me in respite care too for her own reasons and to "give my husband a break." well he could have the same break with me in a nice motel and if I could drive I would have gone to the Big Lake and stayed there for a week.

 

 

Why did your husband need a break?  What are the social worker's reasons for you to be in respite care? 

 

I fully understand your desire for INDEPENDENCE and not wanting a babysitter, alz+.  But running away is not the answer.  Running away can be considered wandering.  Wandering is a reason for a sitter or respite care.   


You are able to express yourself well. 

Are you saying that you do not want to be alone in the home now?
 

 

Are you able to entertain yourself? 

 

Are you safe around the stove and with running water (faucets)?

Both you and your husband need to feel comfortable about your being alone.
 

 

Iris L. 

 

 

 



 

 


alz+
Posted: Monday, May 12, 2014 8:57 AM
Joined: 9/12/2013
Posts: 3608


Iris and Myriam - and all others interested:

 

Now I forgot the questions! Ha!

 well, case worker thought I was manic (ok, I am bi-polar and suffered from PTSD since age 13). I never admitted that on boards before.

 

My husband is a thinker/reader,  he has his own way of doing things and a strong need to FIX THINGS, like ok I did that right once it should stick.

He has seen my counselor and is working on cleaning out the house, finally I am not going through every bag and box and retrieving stuff but letting it go.

 

My anxiety levels were very high before I ever met him and have been in mental health treatment for...a long time. I see a psychiatrist every 6 weeks, or more often as needed. It is a rough thing to admit but I have been delusional, I have been even paranoid, and tend to see the horror coming in most things.

 

he can be cruel with his words, he gets overwhelmed, is struggling with the changes. I am impatient. I was diagnosed finally and so he should immediately be just like in the books! If we did not have Orthodoxy and our priest counseling us this would have gone really bad.

 

I think someone asked about my "running away". Now with dementia my judgment is going, like using the car to go camping etc but it is grand to be free. I had seen an old woman driving a camper on way to church, so when we got home, I was off! I crave time alone.

 

Safety at home? I seem for now to know not to use stove, have moved to first floor so avoid stairs, do not use knives. I swim alone in a large pool. We will have someone look in on me, test waters, will look for more guidance here as needed. I've made me peace with world and am not locked into living as long as possible with no time alone, no fun.

In mental health world, once LABELED everything is a symptom. To object to something is being "defiant", to buy myself a rowing machine is "manic spending" to go off on a dirt road to sleep in my car means "wandering". Things that are normal for everyone else, and me before I was "diagnosed" now warrant police action.

Am I way off? In the extreme, how tragic would it be if I got lost this summer hiking, went to sleep, had visions, entered another state of consciousness and died in nature? Better than skin and bones in hospital bed with chattering people around me. I always long for solitude. This is an issue with my counselor, she believes in my right to solitude. She is helping me stay in my house, remember my rights as a human, as a woman.

what do you think?

Husband is reluctant to go back to work, but remember, I have my DOG with me who guides me home, who lays on top of me if I get agitated, and who would go for help if I were injured (and a neighbor was home).


Myriam
Posted: Monday, May 12, 2014 2:44 PM
Joined: 12/6/2011
Posts: 3326


I'm feeling concern for you. Please take care of yourself and be safe.
Iris L.
Posted: Monday, May 12, 2014 3:33 PM
Joined: 12/15/2011
Posts: 18520


Alz+, with the added history, I understand more about you.

I read from another thread you were in a test program for years and finally was diagnosed as Alzheimer's.  I wondered how they differentiated bipolar sx from dementia sx.  
 

 

It may be too much to share, but can you personally tell the difference between bipolar and Alzheimer's?

I realize that people in mania are impulsive.  Would it be too much for you to let someone know where you are going?

Do you carry a cell phone with you?  Not every place has reception.

Sleeping in the woods in a Jeep??  I don't know...........
 

 

You still have a wonderful mind.  I am still in awe of your other posts this morning.  You have much to contribute to us on this board.

Please keep posting.

Iris L.
 


alz+
Posted: Wednesday, May 28, 2014 11:54 PM
Joined: 9/12/2013
Posts: 3608


http://phenomena.nationalgeographic.com/2013/05/28/with-alzheimers-comes-empathy/

 

found this article on how EMPATHY increases with ALZ so we pick up on other people's emotional state more than normal, like big time.

 

the difference between bi-polar and Alzheimer's...yes, it is different in that when I was manic I got a lot done. I would write for days, edit, lots of streaming fabulous ideas, imagination. depression was  just big black want to die depression. I was also insomniac in past 8 years.

 

PTSD is NOT very different than ALZ, the heightened sense of fear, hyper alert, anxiety and so on. Except the daily living activity competence is big now for me in ALZ and I was a super competent person.

 

I drove cross country alone many times, reinvented life several times, built a business twice, bought, remodeled and sold houses on my own. now I can not pick out a color for new paint job needed. tried calling my daughter and FORGOT to add the "1" before her area code, took 20 minutes of crying, getting numbers entered wrong, then remembered the "1". stuff like that was not part of mental illness. Never was sure of the term mental illness. I had access to extremes in my brain/consciousness, but as long as I lived alone with animals, worked very hard every day, wrote, walked, I had a really good life.

PTSD and ALZ are very entwined in me.

Was never a very trusting woman, this is an obstacle in letting go of control of house, car, food, self care, money...

You ask very ... insightful questions, things I would not come up with on my own.

love to all


alz+
Posted: Sunday, June 15, 2014 7:10 AM
Joined: 9/12/2013
Posts: 3608


 Found book GRAMP by Mark Jury, story of how a family allow the Grandpa to have free reign and helps him die when he is ready. With photos, rare book, a library might be able to get it.

 

Changing the outcome and the experience of Alzheimer's by thoughtful care settings. We are the treatment, we are the ones who will make it better for all others, cure or not. The nursing home for end of life is not what I want, but I may have my choices on how to live usurped before long. Did not know where to put this, not feeling so good today. Waiting to see my priest this week.

  

 http://doctordementia.wordpress.com/tag/de-hogeweyk/

 

In the Dutch municipality of Weesp, not far from Amsterdam, sits the village of Hogewey. At first glance, it looks like any other village, with shops, restaurants and a movie theater. Apartments surround a courtyard complete with rippling ponds, trickling fountains, vibrant seasonal flowers and benches perfect for enjoying a sunny afternoon.

This village, however, is quite unusual. Hogewey, sometimes referred to as “Dementiaville,” is an ongoing, 20-year-old experiment in cutting-edge dementia care. Home to 152 men and women living with severe dementia, the community has 23 residential units, each shared by 6 to 8 residents. Around-the-clock care is provided by 240 full- and part-time “villagers” who are actually trained geriatric nurses and caregivers dressed in street clothes. The staff takes care of everything from cooking meals and planning activities to assisting with bathing, personal care and medications. Even the individuals staffing the various village “businesses” are trained in dementia care. (MORE: Take the Virtual Dementia Tour)

Eloy van Hal, a facility manager for Vivium Care Group, the parent company of several senior care facilities, including Hogewey, says its founders’ vision was of a more humane, engaging dementia care community. “They wanted to make it a place where you want to be,” he says. Residents can experience life as they once had, making their own choices, performing everyday tasks and socializing with people who share similar interests.


jfkoc
Posted: Sunday, June 15, 2014 9:01 AM
Joined: 12/4/2011
Posts: 21250


There is now a community like this near Santa Barbara.
 
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