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I can't paint!
llee08032
Posted: Sunday, December 7, 2014 2:23 PM
Joined: 5/20/2014
Posts: 4408


As a newly dx person with dementia the more I think about all this hype about the art programs with persons with dementia the more angry I feel. The anger is not with  persons with dementia or the caregivers but the medical and psychology fields and the US health care systems. Neither am in disagreement with the concept that art has therapeutic benefits for persons with dementia. 



Is this all they have for us so far! Art! Really. The most rudimentary of all the therapies is art therapy. This is not a medical breakthrough, rocket science or some new concept! Art therapy has been proven to be therapeutically beneficial across all types of dx and illnesses for many years.


 

 Pardon me if I am not overly excited about my future treatment protocol of going on trips to museums and painting with watercolors!!! I can hardly draw a stick figure!




It is pathetic that decades later they now have just gotten around to treating persons with dementia with art therapy and funding these types of programs!



Moreover, I doubt that the state funded nursing homes that many of us average persons will be placed in will even have such programs and trips to museums. It's all getting blown out of proportion and propagandized. In other words, look at the great work we are doing in working with persons with dementia. Not so great IMO!

 

Maslow's Hierarchy of Needs should be a part of Best Practices with focus on primary physiological and safety needs.

 

  1. Maslow's Hierarchy of Needs: What Motivates Behavior?

    psychology.about.com › ... › Humanistic Theories of Personality
    Abraham Maslow suggested that people are motivated to achieve self-actualization, but only after other needs on the hierarchy are fulfilled first.

 

 

 

  



llee08032
Posted: Sunday, December 7, 2014 2:29 PM
Joined: 5/20/2014
Posts: 4408


Another Cognitively Impaired Patient Dies After Choking In Nursing Home

Paradigm Healthcare Center in receivership; overseen by court-appointed trustee

MORE HEALTH-RELATED NEWS

March 15, 2013|By JOSH KOVNER, jkovner@courant.comThe Hartford Courant

Another patient with severe cognitive impairments has choked to death in a nursing home as a result of neglect by staff members, state documents show.

The patient at Paradigm Healthcare Center in Norwalk also suffered from dementia and a psychiatric disorder. In early December, the patient, on a special puree diet, wandered through a gate to a nursing station that had been opened by another resident, according to a state health inspection report released Wednesday. The patient grabbed and ingested food that had been left on a lunch tray from the noon meal five and a half hours earlier.

The Heimlich maneuver and CPR failed to restore the patient's breathing, and medics rushed the patient to a hospital, the report said.

"Review of the acute-care hospital record identified that the resident was found with copious amounts of found obstructing the airway,'' inspectors with the state Department of Public Health said.

The patient was placed on life-support with an anoxic brain injury. A week later, on Dec. 14, life-support was discontinued and the patient died, the report said.

The incident at Paradigm was at least the fifth choking death of a resident of a Connecticut nursing home in a 10-month period. Three of those five residents had severe cognitive impairments.

The financially troubled Paradigm nursing home was placed in receivership in March 2012, nine months before the choking death. The Norwalk facility is now being run by a court-appointed trustee. An administrator at the home, Al Mislow, did not immediately return a phone call for comment Thursday afternoon.

The Courant, in a three-day series last week, documented the cases of 76 developmentally disabled people who died between 2004 and 2010 in group homes, larger facilities and nursing homes. In each instance, abuse, neglect, or healthcare error was a factor. Fourteen of those patients were on special diets and choked to death after ingesting food they should not have been eating.

James McGaughey, who heads the Office of Protection and Advocacy for Persons with Disabilities, which investigated all of those 76 deaths, said last week that he was preparing to set up another statewide training session on food-handling for the nursing-home industry. There have been at least two other urgently arranged training sessions in the last decade, in addition to the training that nurses and nurses' aides receive as part of their licensing process.

The inspection at Paradigm revealed a series of instances where residents obtained food they should not have been eating.

The facility, formerly owned by Paradigm Healthcare Development Co. of East Hartford, submitted a plan of correction to the state DPH on Feb. 15. Paradigm was fined $1,230.

A separate incident involving a patient injury at another one of the company's nursing homes — this one in Waterbury — led to another fine.

A severely cognitively impaired resident at Paradigm Healthcare Center of Waterbury suffered a laceration to the forehead in a fall. The resident was being assisted in the bathroom by a nurse's aide when the resident slipped and went down. The resident's treatment plan required that the resident wear gripper socks and a gait belt when being moved, but the DPH inspectors found that the resident was wearing only a pair of thin socks and no gait belt when the fall occurred. The Waterbury facility was fined $1,160 in January, records show.


llee08032
Posted: Sunday, December 7, 2014 2:34 PM
Joined: 5/20/2014
Posts: 4408


  1. Choking - Nursing Homes Abuse Blog

    www.nursinghomesabuseblog.com/choking/
    Stroke patients are at risk for choking episodes or asphyxiation when staff fail to follow physicians orders or fail to supervise patients at meal time. Choking death ...
  2. Choking in Nursing Home Attorneys | Clogged Breathing ...

    www.rosenfeldinjurylawyers.com › Nursing Home Injuries & Neglect
    Attorneys For Choking Episodes at Nursing Homes and Hospitals ... for difficulties swallowing in susceptible patients, there is a risk of choking and even death.
  3. Nursing Home Choking Lawsuits - Levin & Perconti

    www.levinperconti.com/lawyer-attorney-1119730.html
    Levin & Perconti
    Nursing Home Choking Lawsuits - Chicago Nursing Home Abuse Lawyer. ... over twenty years, including a number of cases involving choking injuries or deaths.
  4. Elderly Man Chokes to Death on Food at Long Term Care ...

    nursing-homelawyers.com/nursing-home.../elderly-man-chokes-to-death...
    Aug 14, 2013 - ... Michigan, failed to prevent a known “fast eater” from choking todeath on his food on ... Michigan Nursing Home Abuse and Neglect Lawyers.
  5. Nursing Home Resident With Swallowing Disorder Chokes ...

    c-hit.org/.../nursing-home-resident-with-swallowing-disorder-chokes-to-...
    Apr 21, 2014 - A Danbury nursing home has been fined $1,040 by the state in connection with the death of a resident who choked on a meatball. The state  ...
  6. North Hollywood nursing home fined $75K for resident's ...

    www.dailynews.com/.../north-hollywood-nursin...
    Los Angeles Daily News
    Oct 31, 2014 - North Hollywood nursing home fined $75K for resident's choking death. By Susan Abram, Los Angeles Daily News. Posted: 10/31/14, 7:26 PM ...
  7. Sacramento nursing home fined in patient's death | The ...

    www.sacbee.com/news/local/.../article2578010.html
    The Sacramento Bee
    Jul 4, 2013 - A Sacramento nursing home is responsible for the death of a patient with swallowing difficulties who choked on a piece of meat during a ...
  8. Nursing-home resident chokes to death on solid food ...

    blog.thomsonreuters.com/.../nursing-hom...
    Thomson‑Reuters Corporation
    Apr 17, 2014 - Nursing-home resident chokes to death on solid food ... that required her meat to be chopped, allegedly died as a result of choking on a piece  ...
  9. Choking Incidents Archives: New York Nursing Home Abuse ...

    www.newyorknursinghomeabuselawyerblog.com/choking-incidents/
    Nursing Home Fined Over $22K after Unsupervised Resident Dies While Eating ... New York, $5,000 after an unsupervised Alzheimer's patient choked to death.
  10. 4th Choking Death Reported At State Nursing Home In 3 ...

    articles.courant.com/.../hc-choking-death-nursing-home-0731-20120730...
    Jul 31, 2012 - A resident on a soft-food diet at the Lutheran Home in Southbury chokedto death in April — the fourth choking death in a state nursing home ...


llee08032
Posted: Sunday, December 7, 2014 2:44 PM
Joined: 5/20/2014
Posts: 4408


 


Nursing home residents fall frequently.  About 1,800 older adults living in nursing homes die each year from fall-related injuries and those who survive frequently sustain injuries that result in permanent disability and reduced quality of life.1

How big is the problem?

  • In 2012, more than 1.4 million people 65 and older lived in nursing homes.2  If current rates continue, by 2030 this number will rise to about 3 million.3
  • About 5% of adults 65 and older live in nursing homes, but nursing home residents account for about 20% of deaths from falls in this age group.4
  • Each year, a typical nursing home with 100 beds reports 100 to 200 falls. Many falls go unreported.4
  • Between half and three-quarters of nursing home residents fall each year.5 That’s twice the rate of falls among older adults living in the community.
  • Patients often fall more than once. The average is 2.6 falls per person per year.6
  • About 35% of fall injuries occur among residents who cannot walk.7

How serious are these falls?

  • About 1,800 people living in nursing homes die from falls each year.1
  • About 10% to 20% of nursing home falls cause serious injuries; 2% to 6% cause fractures.1
  • Falls result in disability, functional decline and reduced quality of life. Fear of falling can cause further loss of function, depression, feelings of helplessness, and social isolation.5
 

 


jfkoc
Posted: Sunday, December 7, 2014 4:06 PM
Joined: 12/4/2011
Posts: 21250


I AM DEEPLY, SINCERELY SORRY THAT MY POSTS HAVE BROUGHT YOU SO MUCH DISTRESS. 

 


Lane Simonian
Posted: Sunday, December 7, 2014 8:48 PM
Joined: 12/12/2011
Posts: 5161


It may be art, it may be music, it may be a museum, it may be a garden, it may be a walk in fresh air, it may be light therapy, or it may be aromatherapy.  What we don't fully know is how each of these change the brain.  We do know that some of these therapies may be more appropriate for some people and less so for others and the reactions will be different.  I remember someone on these boards told me about a relative who hated the smell of lavender essential oil because she associated it with a relative she did not like who wore lavender. That negative memory stayed with her even after she had dementia, such that the smell of lavender caused agitation.  


My larger point is that so few memory care facilities are using these approaches and often when they do it is quite haphazard--an occasional activity.  There has to be some standards set for care facilities that go beyond just warehousing people and providing a minimal level of care (and sometimes not even that).  


Scientists keep trying to find a high tech answers to Alzheimer's disease, but some of the answers are already there and they are surprisingly low tech.


I always like to post this video of Ecumen care facilities in Minnesota.


https://www.youtube.com/watch?v=sKN3DGxl06o


llee08032
Posted: Monday, December 8, 2014 8:26 AM
Joined: 5/20/2014
Posts: 4408


God forbid someone has a different viewpoint..I was not trying to bash the arts programs but making a point that all the focus of the art programs in the face of persons primary and safety needs not being met in care facilities is not so great as it is being blown up to be IMO. Please keep in mind that my opinion is a fresh and objective one perhaps with it not even 2 months since dx. I don't know what others LTC plans are but my plight is what I copied and pasted here. I have little resources, no big retirement funds and no long term care insurance. I am totally unprepared for  not being able to work and the future that lies ahead with this disease. My young family is busy laboring and trying to put food on the table. I doubt they will be able to afford art supplies for me  yet alone provide care giving. i don't have a husband or a daughter to take care of me. I come from a background of poverty and illiteracy so perhaps my viewpoint may be  different. I pursued education and then devoted my life's work in the non-profit sector of the psychology field. There is not any money to be made in the non-profit sectors and I cannot afford to have this disease. So what happens to persons like me? Yes, I am angry but please understand that underneath that anger is fear. 


Perhaps we need a new comer's board where vulnerable, frightened and overwhelmed newly diagnosed persons like myself can freely express themselves w/o getting pounced on and made to feel bad?


Lane Simonian
Posted: Monday, December 8, 2014 9:46 AM
Joined: 12/12/2011
Posts: 5161


I understand what you are saying, even though I am not in the same position yet (after thirty years of being a part-time history teacher I would have to rely on my family to take care of me).


Beside the human costs of dementia there are the financial costs. The whole system needs to be changed (I think paying caregivers as full time employees would be a good start) but so little has changed in so many years, it is hard to see that coming.   


Jo C.
Posted: Monday, December 8, 2014 11:33 AM
Joined: 12/9/2011
Posts: 13612


Hello llee, I am truly sorry you feel you were being disrespected because of your opinion.

 

When I read the posts, I did not feel you were being contradicted.  The one unfortunate aspect in the midst of many good aspects of a Message Board, is that we cannot hear the person's tone of voice or see their facial expressions or see their body language when someone is communicating with us, and it may sometimes seem as though a person is being very negative when in fact, they do not intend that at all.

 

I think perhaps that may possibly be what happened here.

 

I so agree with you that this is a horribly frightening situation especially when one does not have unlimited funds and very real concrete financial or sometimes even no family support.  The future can seem to loom in a very frightening way. 

 

You have made some very valid points about situations that so many others also find themselves in.  You have overcome some pretty pointed obstacles to become educated and to move forward in your life and that was no small feat.

 

Please do be assured that you are a highly valued Member of this Forum and it is just like an extended electronic family.  I hope you will feel the caring and the respect that other Members (myself included) truly have for you and hopefully re-read and see that no insult was intended; just discussion and an apology.

 

With a big soft hug to a dear person,

 

J.


Iris L.
Posted: Monday, December 8, 2014 2:40 PM
Joined: 12/15/2011
Posts: 18520


llee08032 wrote:

God forbid someone has a different viewpoint.. 

 

 

 


 

Perhaps we need a new comer's board where vulnerable, frightened and overwhelmed newly diagnosed persons like myself can freely express themselves w/o getting pounced on and made to feel bad? 


 

 

Ilee, I'm so sorry you feel pounced upon and that you feel bad.  The beauty of this message board is that everyone has the ability to express their opinion. Even the opposing or what might be considered to be opposing opinions can be expressed.  That doesn't mean that the first opinion is invalid.  Just that it is different.   

 

I believe what helps the newcomers is coming here and learning that a diagnosis doesn't mean that automatically, all is lost.   We still are who we were before diagnosis.  We need to take control as much as we can.  We still have the ability to take control. 

 

I have been upset at times by what I have read on these boards, but that doesn't stop me from participating.  This is because this message board is the ONLY place I have been able to find consistent objective help and loving support. 

 

I too, don't have family close by and my formerly close friends have abandoned me and most of my doctors have nothing to offer me.  I'm on this journey alone.  But not alone, because I have my message board mates.   

 

We have to draw on each other and the resources available.  This is the only way we will survive and have a good quality of life. 

 

Iris L. 


llee08032
Posted: Monday, December 8, 2014 8:57 PM
Joined: 5/20/2014
Posts: 4408


So sorry for all the drama and if I offended anyone. I do not think I articulated my point very well when I first got up on my soap box about the art programs.I feel like I keep missing the mark of what I want to express and things just shoot sideways out of my mouth. I am hypersensitive very much so, lately and have to get up and get off of my own nerves! I never did do scared and vulnerable well and this is going to take some time and work.

Thank you all for all the kind words and understanding.

 


Iris L.
Posted: Tuesday, December 9, 2014 1:30 AM
Joined: 12/15/2011
Posts: 18520


I think you expressed yourself very well, Ilee.  You want to be offered more than art therapy.  There's nothing wrong in expressing that.  Don't second guessing yourself! 


 

This has to be a safe place to express ourselves because most of us don't have anywhere else to express what's really going on with us and what we think.   

 

Every emotion or thought that is posted here is thought about by other members and by the lurkers.  So when we posters express ourselves, we help more than just ourselves. 

 . 

Iris L. 

 


llee08032
Posted: Tuesday, December 9, 2014 6:31 AM
Joined: 5/20/2014
Posts: 4408


Every emotion or thought that is posted here is thought about by other members and by the lurkers.  So when we posters express ourselves, we help more than just ourselves. 

 . 

Your so right I never thought of this before.

 

 

I've heard you say also that focus and money needs to go into providing care for persons with dementia while were waiting for the cure. I'm not seeing that. Maybe I'm missing something or gleaned past a post about such efforts.

 

I know some of the Alzheimer's Association chapters are implementing arts programs with early onset persons which I'm sure is greatly beneficial and enriching but there are other areas of need also, such as primary and safety needs. And why so late with the art for us? Art has been used historically in working with autism, mental illnesses, trauma victims, even sociopaths. The list of disorders treated with art therapies goes on and on.


Iris L.
Posted: Tuesday, December 9, 2014 12:29 PM
Joined: 12/15/2011
Posts: 18520


Ilee, people with dementia, both early stage and the later stages, are just beginning to get attention.  Actually, the Alzheimer's Association was founded to help caregiver, not patients.  Most efforts in regards to dementia are directed towards caregivers.   

 

I'm appreciative that we patients have an opportunity on these two message boards to receive support and to meet each other.  We have our own, dedicated chat room but it is rarely used. 

 

If we want attention, we have to be the squeaky wheels and make some noise! 

 

Personally, I attempted to participate in earlier years but I was turned away because my dx is cognitive impairment, not AD.  I have not felt comfortable enough to seek out other in-person activities because I can't take more rejection. 

 

 

This is why I appreciate our message boards so much.  This is the only place I receive support and positivity about my cognitive issues.  I won't be going to any art program for patients with dementia for the foreseeable future, either.

But I'm making my own activity program for myself, with my computer class and my travel.  I have aligned myself with the Multiple Sclerosis Support Group locally, since they are a neurological support group.  It's not ideal, but it's the best I can do now.
 


Iris L.
 

 

 

 

 


jfkoc
Posted: Tuesday, December 9, 2014 6:18 PM
Joined: 12/4/2011
Posts: 21250


Ilee....are you familiar with the work of John Zeisel?
llee08032
Posted: Tuesday, December 9, 2014 8:28 PM
Joined: 5/20/2014
Posts: 4408


((((((Iris))))))) I just want to hug you!

No jkoc I don't know who JD is?
jfkoc
Posted: Tuesday, December 9, 2014 8:53 PM
Joined: 12/4/2011
Posts: 21250


His book I'm Still Here has given me so much insight into living well with my husband in the face of the difficulties we have and are facing. He is also one of the driving forces behind The Hearthstone (thehearth.org) which is, as far as I can tell, lighting the way to quality assisted living in this country. 

 
I am in complete agreement with you about wanting to concentrate on a cure and believe that progress in any of the dementias will help the others. We can but hope.

Iris L.
Posted: Tuesday, December 9, 2014 9:39 PM
Joined: 12/15/2011
Posts: 18520


Here is a brief bio of Dr. John Zeisel: 

 

Dr. Zeisel, president and co-founder of the Hearthstone Alzheimer’s Family Foundation and Hearthstone Alzheimer Care, Ltd., received a Ph.D. in sociology from Columbia University and a Loeb Fellowship at Harvard’s Graduate School of Design. His professional service includes the Patient Care and Family Support Committee of the Massachusetts Alzheimer’s Association, the Conference Planning Committee of the New York City Office of Aging’s Alzheimer’s Unit, and the International Advisory Board of the Academy for Health and Design. Recently, he was named to the Board of Directors of the Academy for Neuroscience in Architecture. Dr. Zeisel has been on the faculty of Harvard University’s Department of Architecture, and he has taught at Yale and McGill Universities and Harvard University’s Graduate School of Design. 

 

Dr. Zeisel lectures internationally on non-pharmacologic treatment for Alzheimer’s disease, focusing on the therapeutic effects of design of the physical residential environment, and the role of art and music. Through the Foundation’s Artists for Alzheimer’s program, Dr. Zeisel was instrumental in developing “I’m Still Here,” a traveling art exhibit, and “Swansongs,” a musical and story performance about Alzheimer’s disease. “Swansongs” is a collaboration with internationally renowned London-based violinist Paul Robertson, whose professional work focuses on the links between music and health. Dr. Zeisel is the author of “I’m Still Here: Changing Your Mind About Alzheimer’s,” which will be published later this year.  

 

http://www.everydayhealth.com/bios/john-zeisel.aspx 

 
 

 

Here is a link to his book, "I'm Still Here": 

 

http://www.amazon.com/Im-Still-Here-Philosophy-Alzheimers/dp/1583333762 

 

 

 

Dr. John Zeisel is a man who is changing the care of the patient with Alzheimer's, involving them in activities and not warehousing them or letting them sit in front of a tv all day. 


 


 


 

Iris L. 


alz+
Posted: Wednesday, December 10, 2014 7:23 AM
Joined: 9/12/2013
Posts: 3608


llee - 

  

Painting is not so helpful when one used to be "good" at it. I think I understand the frustration and fear that comes from reading about the supposedly grand changes in Alzheimer care. They seem so pathetic and the least that could be done. 

  

When I lived alone and was very ill from what doctors thought was MS I painted in my bedroom. I would order cassette tape series from Sounds True on mindfulness and paint. The feel of paint on a brush, the smell, the colors changing would transport my mind from a state of fear to some place still. Hours would pass with no thought of the pain. 

  

It is not so much to produce something grand, but finding a means to another state, which I think is beyond Daily Mind. 

  

At any rate, the waves of anger are big and thick and can linger long past when you want them over. Anything that helps a person get out of these states is good. 

  

You are important here to me because your anger is fresh, you are bumping into the pittance given to finding a way to LIVE with ALZ without being infantilized minimized shamed scolded and left broke and broken. 

  

Poetry is another means to travel from the regular world to fresh air. Walking, cuddling an animal, swimming...hands in dirt gardening - we each have to find our own means to survive. Your reports on nursing homes are so sad. To think families took care of the weak until just 100 years ago is sickening, the culture is focused on crap most of the time. War, and crap. 

  

I value your anger - it is what will help you find what gives you peace and strength. Well - my typing now takes so long to correct we can hope for shorter posts from me. Please email me privately if you want to really go off and not self censor. An angry woman will change the world. 


jfkoc
Posted: Wednesday, December 10, 2014 9:54 AM
Joined: 12/4/2011
Posts: 21250


ALZ+ agreed, painting would not be good if it brings on stress but perhaps the smell of paint would be positive.
Iris L.
Posted: Wednesday, December 10, 2014 3:53 PM
Joined: 12/15/2011
Posts: 18520


I'm not a fan of censorship.   We need to be able to express ourselves.  Please, don't self-censor.   

 

If we are angry, let it out!  I have written angry posts about how I felt. 

 

Don't make personal attacks and don't curse.  I think we all know to avoid that. 

 

There is a Musings board for deep personal thoughts.  More of us patients might make use of that board. 

 

Iris L. 


Iris L.
Posted: Wednesday, December 10, 2014 3:57 PM
Joined: 12/15/2011
Posts: 18520


In regards to less than good care in nhs and facilities, we need to promote the good nhs that are treating patients in a better way, like John Zeisel's place, Hearthstone.  Also, encourge home care as long as possible.



Iris L.


alz+
Posted: Thursday, December 11, 2014 7:19 AM
Joined: 9/12/2013
Posts: 3608


Iris - I have looked for ANY anger in your posts and can not find it.

 

Dag nab it.

 

Yes, when angry at injustice or inertia posting about it can inspire others to let it out. It helps to know frustration is universal, not shameful, and not some mental disorder, a psych label.

 

Some people feel more deeply about things than others. I favor the Over The Cliff school of emotional expression.

 

Living out this illness is very hard work.


alz+
Posted: Thursday, December 11, 2014 7:26 AM
Joined: 9/12/2013
Posts: 3608


jfkoc wrote:
ALZ+ agreed, painting would not be good if it brings on stress but perhaps the smell of paint would be positive.

Ha! The smell! Well, oil paints do have an aroma.

 

 I thought the point in painting was to enter the creative mind state, not to do representational work. If one considered themselves a really good artist then the loss of that skill level could be really frustrating. I was never "good" so it was always enjoyable.

 

Amazing how little time I have spent doing it for the happy memories of I have of doing it. But I think the point of ALZ people painting is to enjoy expression of self through a less difficult means than word retrieval.

 

OK, time to start the 3 hour getting dressed for doctor routine.



jfkoc
Posted: Thursday, December 11, 2014 11:37 AM
Joined: 12/4/2011
Posts: 21250


I do find the smell of oil paint to be a very positive thing.....
Myriam
Posted: Thursday, December 11, 2014 1:11 PM
Joined: 12/6/2011
Posts: 3326


Ah, another reminder to take out my paints and canvas. I keep forgetting to do it!
Iris L.
Posted: Friday, December 12, 2014 6:01 PM
Joined: 12/15/2011
Posts: 18520


alz+ wrote:

Iris - I have looked for ANY anger in your posts and can not find it. 

  

Dag nab it.  

  

Yes, when angry at injustice or inertia posting about it can inspire others to let it out. It helps to know frustration is universal, not shameful, and not some mental disorder, a psych label. 

  

 


Alz+, before you joined, many of my posts were about my anger at being ABANDONED by my closest friends, whom I regarded as sisters, and at the UNPROFESSIONAL TREATMENT that I received from my former physician colleagues.  I felt DEVASTATED.  I was angry at people who took advantage of me when I wasn't thinking clearly.  I won't go into the many stories now. 

 

But I have learned over the years and with the help of my fellow message board mates, that it is important for me to pay attention to what is before me today, and that is maintaining my INDEPENDENCE.  I must learn what I need to do to maintain my independence and my functioning.  This is what I must focus on!   

 

The past is past.  I can't go back and make those people treat me decently, the way I treated them.  It is what it is.  It's their loss.  There are people here who need to know what I've learned about dealing with dementia, and I'm going to help them, and help myself in the process. 

 

Yes, living with dementia and cognitive impairment is hard.  Other people make it harder than it has to be, from ignorance or because they are creeps and jerks.  But we have to pull together ourselves, and help ourselves.  This is my belief. 

 

Iris L. 


BBunny
Posted: Sunday, December 14, 2014 12:51 AM
Joined: 5/28/2014
Posts: 458


Beautifully expressed, Iris.
llee08032
Posted: Sunday, December 14, 2014 10:01 AM
Joined: 5/20/2014
Posts: 4408


You are important here to me because your anger is fresh, you are bumping into the pittance given to finding a way to LIVE with ALZ without being infantilized minimized shamed scolded and left broke and broken. 


Such a pittance it is alz+. I noticed I came to the board 6 mos prior dx. Still so much to take in and learn! Fresh raw anger and open wound (hopefully to heal and grow some protective scar tissue).




Ilee, people with dementia, both early stage and the later stages, are just beginning to get attention.  Actually, the Alzheimer's Association was founded to help caregiver, not patients.  Most efforts in regards to dementia are directed towards caregivers.   

 

I'm appreciative that we patients have an opportunity on these two message boards to receive support and to meet each other.  We have our own, dedicated chat room but it is rarely used. 

 

If we want attention, we have to be the squeaky wheels and make some noise!

I have been shocked at the little attention that is paid to the voices of persons with dementia! Squeak and squawk we must!


Thanks all for the love, encouragement and support!


Lisa Ramey
Posted: Monday, December 15, 2014 12:00 PM
Joined: 6/20/2014
Posts: 160


Dear llee,

Bless your heart I understand also. I get it. You know I read that painting thing and I too said what I only draw STICK PEOPLE!! I can not even paint walls in my home. So I looked on Amazon and there are Art Therapy Coloring Books for Adults. They are too Cool! I plan to order some for myself. Oh my they have a variety of coloring books to choose from. Please check this out.

Thinking of you

Lisa Ramey

jfkoc
Posted: Monday, December 15, 2014 5:27 PM
Joined: 12/4/2011
Posts: 21250


Lisa...your post reminds me of the coloring book my husband laughingly wanted to "write". The first page would have a large square and written under it would be the word CAT. the next would be a box with TREE, the next would be a box with CAR under it and so on. He thought he would title it Drawing Outside the Box.


I love the idea especially for those of us (me) who think rather concretely. I think it would sell like hot cakes for at least a year...lol  


Iris L.
Posted: Tuesday, December 16, 2014 12:23 AM
Joined: 12/15/2011
Posts: 18520


I just watched the program, "I Remember Better When I Paint."  Ilee, in the words of one of the doctors, art bypasses the limitations of dementia.  They are impressed with the therapeutic uses of art.  Art therapy can be just as effective as drug therapy.  It doesn't have to be painting, but any artistic endeavor.  Probably any consistent, creative activity could work.

Iris L.


llee08032
Posted: Thursday, December 18, 2014 8:20 AM
Joined: 5/20/2014
Posts: 4408


There is no doubt that the arts will greatly benefit persons with dementia in ways that are unique compared to other models of the psychotherapies.  I just don't understand why specialist and scholars in the field of working with persons with dementia are only now implementing the arts when art as a therapeutic medium and venue was introduced in working with other illnesses and various dx's both mental and physical decades ago? There appears to be this snails paced, a_ _ backwards, back shelved mentality and lack of progression in modalities of treatment and high standards of care for working with persons with dementia. If one of us specialized in treating dementia the arts in working with persons like us would have been discovered and implemented long ago.





The History of Art Therapy

According to the American Art Therapy Association (AATA), art therapy is the use of art creation as a form of psychotherapy for people experiencing trauma or illness, seeking personal development, or struggling to deal with the day-to-day act of living. Through the act of creating art and thinking about the process and medium, people are able to develop skills that increase cognitive ability, increase awareness of self and others, and help them cope with the distressing symptoms or limitations imposed by disability or disease. The primary purpose of art therapy is to help patients heal their mental and emotional wounds as much as they can.

When Was Art Therapy Started?

Although contemporary art therapy is a fairly new practice, art has been used since the beginning of human history as a medium for communicating thoughts and ideas. The oldest cave painting was found in the El Castillo cave in Cantabria, Spain and dates back 40,000 years to the Aurignacian period. Though researchers are uncertain as to the exact purpose of the cave drawings, it has been theorized that they were likely used as part of religious ceremonies or to reach out to others in the area.

Moving forward in history, art became an instrument for self-expression and symbolism. However, it wasn’t until the 1940′s that the therapeutic use of art was defined and developed into a distinct discipline. The discipline arose independently in America and Europe. In England, the first person to refer to the therapeutic applications of art as art therapy was Adrian Hill. While being treated in a sanatorium for tuberculosis, this artist suggested participating in art projects to his fellow patients. This was just the beginning for him and he discusses much of his work as an art therapist in his book “Art Versus Illness”.

Hill’s work was expanded upon by the artist Edward Adamson. He worked with Hill to introduce this new therapy to long-term British patients in mental hospitals starting with the Netherne Hospital in Surrey. He continued establishing programs in facilities up until he retired from the industry in 1981. Adamson went so far as to open a studio where patients could freely create art without comment or judgment from others. He was a proponent of “non-interventionist” art therapy where patients simply created art for self-expression rather than for psychological interpretation by a clinician.


Myriam
Posted: Thursday, December 18, 2014 1:21 PM
Joined: 12/6/2011
Posts: 3326


The Frye Art Museum in Seattle has wonderful programs for people with dementia, including art classes and gallery tours. Yesterday, we spent time studying three paintings and discussing what we saw and the intent of the artist.  

 

Check out, or have someone check out for you, if any of the art museums in your community have such a program. If they don't, suggest they contact the Frye Art Museum in Seattle to check out if it's feasible where you live. 


jfkoc
Posted: Thursday, December 18, 2014 2:49 PM
Joined: 12/4/2011
Posts: 21250


Going further, I think it is a relatively new idea for many of us that non-pharmacuetical treatment is of great importance in an overall plan to maintain  the highest quality of life to persons with dementia or any other illness or just in general, for that matter, for all of us.  It is at least a relatively new view on these boards.

 

Here at our house I know how easy it is to think "pill". It takes a constant effort to look for the alternative. It is a complicated occupation looking out for another's best interest and it takes constant re-conformation.