Homeward Bound: A Metaphor for What Used To Be

The article I posted on my archive entitled HOMEWARD BOUND struck so true with me today as I read it today. I cope with my disease well, but sometimes: It is so hard!

Click on Homeward Bound to go to it on my Archive.

The Home in home bound that is discussed is more the metaphor for the Alzheimer’s Diseased (AD) person view of the way it was. She/he sees it as the sense of what is missed, what used to be. I felt this so closely this last week visiting Scottsdale AZ where we had a winter home. We sold it when I could no longer handle living in two places, selling it fortunately just before the real estate bubble burst.



Coming back here finding myself four years post AD, seeing the profuse change in me from what I was before, I felt a little shock and a greater grief for having lost what was. I was so much freer, independent and active then. It caused me to see my disease for the tragedy it is.

Do I want it back? No!


I have learned so much having this disease. I have learned about my self, my place in the world, my need to relate to others, my need to stay occupied like writing, doing art work, reading and taking care of myself.

One of my biggest gifts of AD is fully embracing acceptance; not only acceptance of AD but acceptance of my life in these circumstances. Truly I have become “I am what I am!” No longer need I strive for more, to be, to get, to go, to make me happy. This is all there is and it is in my interest to find my happiness in it.

This means the blinders are off! No longer is my overall perception focused on what next I set out to do, to get, to be, all of those many things we work at in the life we have lead attaining; occupying the acute stage of acquisition. We acquire this and that, the variety changes as we enter and pass through different stages of life.

Always, in each stage we work so hard at accomplishing what the stage dictates for us to do, whether marks in school, love, children, job, treasure chest, place in community, it is all in need of being done.

This is over; “it ain’t going to change no more.” This is all the better it’s gonna get!

Our AD time is then a time for discovery within ourselves and outside of ourselves. It is the time we can pursue something just for the fun of it, or just for the love we can give doing it.

It is for this reason it is so very important that society honor us. We are not fodder for warehousing in our current style of nursing home facilities. We should not be overlooked, abandoned and forgotten as society now tends to do when a person is branded “AD”!

From those who do care we need more to be understood, encouraged to keep working through our mire and trying to communicate and participate as well as we might. We will be better for it as will you in caring for us and being with us.

Art Therapy for Alzheimer's Patients

At best a re-current theme with me, Art Work for Alzheimer’s Patients. We so need more of this. We who are not yet institutionalized see so little of this. This is tragic. Although so little is known why, more and more articles are appearing that Art Work works!

It works to occupy patients, it works to calm patients, it works to expand patient’s cognition, and it works to open no pathways for human expression in patients. It works for patients who have never tried or had an interest in doing art.

It seems to generate itself amongst us once our minds are bent by this disease. This is what the articles talk about; this is what I have myself experienced. I do art work. Some people say it is pretty good. Below I show an illustration of what I do.

A field of Cacti in Arizona is shown where I am on holiday and took a hike on a trail in Gateway Park in Scottsdale. It started with a picture snapped on the trail. It finished as this:


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Now, I like it, you my reader may or may not. The important part is that I like it, got quite a kick out of doing it and keep going back to look at it. Is that good for me a guy in Early Mid Stage Alzheimer’s Disease. (AD)? You bet it is!

It keeps me alive, interested, inquisitive, feeling a sense of accomplishment and certainly enhanced when it comes to quality of life. Had my AD not been detected early, had I not been the type of person who decided on diagnosis I am going to do all I can to slow the development of it, I would probably be ready or in the Home (nursing home) already.

There I might finally get some Art Work Therapy too!

Instead with my knack for inquisitiveness, my knack for filling my own time with interesting activity I have discovered it. I did and thank you for it my Higher Power.

Why did this happen? Why is it happening with others? What is it that makes it work?

Asserting our creative skills can prolong our stay in the Early Stages of AD and hold off digression into the more debilitating stages, it is in the doing of this that I believe something organic happens in our brain.

There is no magic why AD happens. A growing clotting or scarring of connective tissue in the brain occurs cutting of transmission of signals over the damaged parts. As a result communications from one part to the other cannot be made disrupting function along the normal pathways known to the brain. If the brain can circumvent the damaged parts and pass signals over different pathways or develop new pathways this functional impasse can be overcome.

We do not have a clue how to do this, or why the brain shorts out in the first place, we just know it does. It also seems that somehow tapping the creative side of the brain, this expedites the process of regeneration.

In this regard we know the brain has two hemispheres. One is the left that is our mechanical, data retaining, and cataloging side. It’s where we keep, assimilate and retrieve all of the facts we have packed in.

The right side is our creative side. Unlike the left that works serially going from A to B to C & W, everything to it is Now. It is all present having no before and after. This is the side we use to make sense out of all we know. It is also this side that we tap into a greater consciousness through which we intuit things, through which we make music and do art.

It has not as yet been proven. It is nonetheless my premise when looking at what results that using the arts somehow taps into the right brain more readily and opens doors not otherwise available to the AD afflicted to help them and enhance their quality of life.

The benefits of art work are being recognized. Programs are starting in the institutions. We need to make programs more available to those yet functional to keep them there longer.

That is why I post one more article on my Archive about Art Work and AD. Look at Art Therapy for Alzheimer's Patients by clicking on it to go there.

Alzheimer's Association on Healthcare Reform Legislation

It’s a start! In the archive I have posted a commentary Alzheimer's Association on Healthcare Reform Legislation . Click on it to read it.

The Association does not take credit although they acknowledge the benefit specifically accruing to Alzheimer’s Disease (AD) Affected under the new bill just passed for Healthcare Reform.

The commentary states:

While the Association did not endorse any specific healthcare reform legislation, the Association did work to ensure that all bills under consideration contained the strongest provisions possible to address the particular challenges and concerns of the more than 5 million Americans with Alzheimer’s. Several provisions in the final measure would deliver substantial benefits to those with Alzheimer’s and other dementias and to their caregivers…

"Many aspects of the final healthcare reform legislation will greatly serve the Alzheimer community," said Robert Egge, vice president of the Alzheimer’s Association’s Public Policy and Advocacy Division. "We are particularly pleased with those elements that improve the healthcare delivery system through the promotion of care coordination, transitional care and long-term care services…"

• Alzheimer families will be helped by the creation of a national voluntary insurance program, known as the CLASS Act, which provides benefits for long-term care services and support, such as respite care, home care aides and accessible transportation. This new insurance program will help individuals with Alzheimer’s disease to remain as independent as possible within their homes and communities for as long as they can and is a great first step in addressing long-term care issues and in assisting families.

• Creating a new demonstration project, known as the Innovation Center, to examine ways to promote care coordination in the Medicare program, including for individuals with Alzheimer’s and other dementias. "Care coordination is a process for ensuring effective communication among medical and community care providers and connecting an individual and their family with the services they need," Egge said. "The new Innovation Center will pilot new programs and identify which programs work best for individuals with dementia."

• Establishing a Medicare pilot program to provide transitional care to seniors at a high risk, including those with cognitive impairment, of re-entering a hospital. "Cognitive impairment due to Alzheimer’s and other causes increases the complexity of care transitions and post-acute care, resulting in increased risk for medication errors and hospital readmissions," said Egge. "Alzheimer families need assistance with planning and managing discharge and post-acute care, including arranging and monitoring in-home medical treatment and supportive services/"

The Association is pleased with how these various provisions included in the final healthcare reform measure would benefit the growing number of Alzheimer families. But ultimately solving the Alzheimer crisis — with its far reaching impact on families, business, Medicare, Medicaid and the nation as a whole — will require investment in research to develop effective treatments that prevent, stop or cure the disease. While healthcare reform was never designed to address this challenge, it does include an important step called the Cures Acceleration Network. This $500 million research program is aimed at developing treatments and cures for high need diseases, such as Alzheimer’s, with an emphasis on bridging the gap between laboratory discoveries and actual treatments.

My reading of this comment on the one hand caused me to believe, boy, finally, notice is being taken of the need of working for better care for AD Afflicted. Finally issues regarding economy in care are gaining in recognition. Then on closer reading I see little more than lip service given the accomplishments of Health Care Reform as they relate to AD.

I quote the forgoing excerpts taken from the article to make my point. Perhaps I am being somewhat strident on this issue and I would invite any commentary by anyone reading this should they agree, disagree or have a comment.

The articles closes with this:

But ultimately solving the Alzheimer crisis — with its far reaching impact on families, business, Medicare, Medicaid and the nation as a whole — will require investment in research to develop effective treatments that prevent, stop or cure the disease.

The subject of the article relates to care and legislation about it. How does the issue of raising the money for find a cure fit in here? Why is this emphasis so important with the Alzheimer’s Association?

I do not propose to denigrate efforts to find a cure, no way! But the Alzheimer’s Association is not a single issue program. It is intended to support all the needs of AD Affected. Why do they seem to do but one?

Life in the AD Lane, Now into Mid Stage

I will be out of pocket for the next 8 days. So my blog posts could be spotty.

My thoughts go internal today. I am going back to Scottsdale where we owned a winter place three years ago. In April following my June 2006 diagnosis I told my wife I could no longer handle living in two places at once. It put me in too much turmoil.

This was brought home that year as we started the winter season with her tearing a calf muscled and was all but confined for six months. She had difficulty driving, I could not, we felt very isolated. We had cabin fever in the sunny Southwest!

I raised the possibility with Diane, she was all for it. We sold right before the bubble burst and set our life down to our Condo of 20 years in Downtown Minneapolis. It proved to be a good decision. Life in one place is very good for a person with Alzheimer’s Disease (AD).

Since giving up my dream of warm winters I could not return to Scottsdale because of the loss I felt. Now I am ready to deal with it and hope it goes well. This return puts me in mind of the changes I have experienced in the intervening time.




I started in the very Early Stage of AD at the time of my diagnosis. If I were to place myself now I would say I am in the Early Mid Stage of the progress of this disease. I simply have more difficulties to work with. Words are becoming difficult at times, I can’t find them. To compensate I simply talk around them using close likenesses, saying also, “The Damn AD is acting up again!” This makes it easier.

Misspells become more and more. I just went to write sponsor. I could not get it right nor could I recall when I recognized my misspell in sponser, sponcer, sponscer, then finally sponsor. In the process of writing this I misspelled sponsor three times. I cannot guarantee right, write, wright, being right. So many others…

My general good mood is under attack. I get the shakes, I get down, I get lethargic. Worse I can become so fatigued by it. My balance is bad, my legs weaker, doing anything becomes a burden.

I run in periods of being cognitively dense, like my mind is thinking through I very viscous solution of mud. I just cannot keep it all straight, or work it all through. I find it too mentally exhausting.

I get very anxious about travel. Once on the way I am ok. Leading to it is an altogether different story. I am on edge and often shaky as I am right now anticipating the trip tomorrow.

Why am I writing about this? In order to give a chronicle of the progress of this disease from the inside. I remain fortunate in one respect and that is I can still write, reason through things as I do and I hope have something to say.

I believe it important for folks to know the experience of this disease from the inside and intend to continue writing and describing it as long as I can. This is one thing I can do to put worth to having this disease.

It is just too ugly to have and sit back with it and do nothing. There is little that can be done, but, let folks know what it is like, what it needs and we need having it. This is mainly what I write about.

As I do I note the Health Care Bill got by the House. Wow! I am holding my breath hoping it makes it through the Senate, by the Presidents desk, and then survives the multitude of suits brought trying to make it unconstitutional. One day post House Action 20 Republican State Attorney Generals have initiated suit asking the bill be declared unconstitutional.

Stressful but Vital: Picking a Nursing Home

The New York Times carried an article entitled Stressful but Vital: Picking a Nursing Home today. It is one of the better I have read on criteria for nursing home selection. I have posted it on my archive and recommend it. Click on its hypertext to go there.

This is an issue about which I have an intense interest. I have a disease that has me Nursing Home bound. My wife and I saved for our retirement and do not have a protected pension or other means to support us during retirement than this. By sound financial planning we had enough.

When I go we pay out of our retirement funds. Cost is 70,000 to 100,000 a year. We both pay until it is spent down to a sum my wife cannot continue to live on. She’s screwed!

If we got something for our buck we would have some satisfaction. Unfortunately it is almost a general rule the only high thing in Nursing Home Service in this Country is its confiscatory cost. Service is an altogether different ball game. It is generally poor often abysmal.

It is for this reason the criteria contained in the article I have posted is important for everyone’s consideration particularly if you are dealing with Alzheimer’s Disease (AD), the cost of which is greater and the need of it longer.

The article gives some key questions to be asked about a nursing home being considered. Although they seem basic, had I asked they could have revealed factors that I didn’t see when I entered what was supposed to be the best in the metropolitan area I lived in.

I was in a nursing home one year ago recovering from extensive hip surgery. I wrote the following describing my impressions of service shortly after I came home. They are as valid today as I felt them then when I wrote:

1. Recovering from surgery I recently spent time in a transitional care facility. It was considered the best service provider in the area. It was the best but for the following:

a. The “hands on” service of the providers was peppered by gaps and omissions caused by cost economy limiting services, such as:

b. Baths – Once a week because they can’t afford all of the nursing assistants required to give more baths a week.

c. Medical care provided by a Physician’s Assistant (PA) purportedly operating under the management of a doctor who was never seen by me. This PA was part-time three days a week.

d. Lower level support personnel primarily foreign born, recent émigrés with substandard ability in the English language making it impossible to understand them or them to understand us.

e. The lower pay of the lower level support produced service style commensurate to the pay. They are treated minimally and they serve in the same way.

f. The nursing staff is overworked, spread far too thin, harried and not able to respond were they willing to do so.

g. The administration of medications needs constant self monitoring to see: are they right kind; are they the right quantity, are they little more than palliating with too many sedatives? (designed to keep us quiet and on ice which did happen to me, I was unaware of it, lost in LaLa land, my wife caught it and put a stop to it?)

h. Bed clothing is designed to withstand the vagaries of the frail incontinent and impaired. As such the bedclothes are laundered in toxic cleaners to make sure they all get cleaned whether soiled or not. The beds have rubber, latex or plastic mattress covers. Both produce a variety of sensitive skin reaction.

i. The nursing and support staff are not equipped to provide suitable care or medication for skin and bed rash. (In my case with severely sensitive Irish skin I brought my own prescription for itching that took four days to be replaced when quickly used up)

j. Medical consultation and care did not really exist

1. I had a cough and sore throat. They didn’t have cough drops, they could get me lozenges. They had cough syrup. I requested lozenges, they came in, no one from the nursing staff told me they had arrived and were available. They just sat at the nursing station.

2. I was terribly sick, suspected it to be more than symptomatic of recovery from substantially severe surgery. It acted and felt like a case of the flu. Although asked for medical review or recommendation it was never received by me

3. The reason for this: They provided their own medical care via the physician on staff. The physician did not see patients, he advised the PA on the line who saw the patients on her part time shift. The facility had the exclusive right to provide this service which was one of their selling points. (no outside doctors allowed) Cost economy limited utilization of the service. The part time PA could not get to everyone.

4. The facility itself, namely the physical plant was fantastic. A wonderful campus, in a scenic river setting consisting of many beautiful brick buildings, architecturally magnificent, maintained exquisitely on grounds that competed with the best of parks. Not a dime was spared to make this an attractive inviting setting for someone in need of it.

5. This was the top of the line in quality service providers in our area. I was appalled by the quality it lacked because of cost economies.
What must the quality of other service providers be that are provided at greater economy?
A. The size and the homogenization of service in order to survive in the highly regulated competitive marketplace has produced this neutering anomaly.

B. Under the guise of provision for and protection of the people served, the infrastructure has become so top heavy and cost prohibitive it no longer has the funds remaining sufficient to pay for the care their existence is meant to provide.

C. It is in the provision of care that the cost economies are imposed denying the people the care their existence is intended to provide! The cost of their continuing in existence exceeds their ability to provide adequate care.

There is a great deal of information packed into the foregoing outline. It is an example. The real reason is our system. It is broken. Broken like so many other things becoming so evident as manifested in Washington and throughout the country.

We have what we have today in Nursing Home Care. The Article posted gives recommendations to help glean the good out of the overwhelming crap permeating this system.

Art stimulates conversation with Alzheimer's patients

Jeanne Quigley of Alzheimer’s Services of Cape Cod and the Islands talks about art by Guyer Barn last week.Cape Cod Times/Merrily Lunsford

By Laurie Higgins
CONTRIBUTING WRITER
March 18, 2010

This article speaks for itself. It is about Art; It is about Alzheimer's and says it better than any comment from me!

One of the first things that Alzheimer's disease robs an individual of is the ability to remember words and communicate with language. Fortunately, there are alternative techniques that family members and caregivers can learn using nonverbal and symbolic cues.

With that in mind, Alzheimer's Services of Cape Cod & the Islands began a pilot program called the Arts & Alzheimer's Initiative last year that uses art to trigger memories and create a new form of communication.

Talking about art with the Alzheimer's audience

What do you first notice when you look at this picture?

• How would you describe the colors?
• How do you feel when you look at this picture?
• What time of day do you think it is?
• What title would you give this picture?
• What is the first word that comes to mind when looking at this picture?
• What is happening in this picture?
• Are there any objects in this picture you recognize?

To learn more or to register to attend, contact: Alzheimer's Services of Cape Cod & the Islands, 712 Main St., Hyannis; 508-775-5656; www.alzcapecod.org
"Often we store information in our brains as pictures. So when somebody sees a visual image, the image can stimulate the mind to open that door to memory rather than words," says Suzanne Faith, director of client services at the organization.

For example, if you ask someone with dementia if he remembers a visit to Chatham Light, he probably wouldn't make the connection between the words you're asking and the memory of the event. A painting of the lighthouse is more likely to prompt a memory of the visit.

Faith first read about the art program in one of her nursing journals. It began in 2003, when Dr. John Zeisel, president of Hearthstone Alzheimer's Family Foundation, collaborated with the Museum of Modern Art in Manhattan to create a program working with people who have dementia. The program was so successful that in 2007, the Metlife Foundation awarded a two-year, $450,000 grant to expand it nationwide. Faith contacted Zeisel and asked if it would consider coming to Cape Cod.
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"We have 8,500 on the Cape and Islands with a diagnosis of dementia, so geographically, because we're somewhat isolated, it's the perfect place to do this. Plus we have so many artists," Faith says.

In November 2008, Amir Parsa, a Museum of Modern Art educator, was the keynote speaker at the Cape's annual Alzheimer's Awareness Conference. Parsa then conducted a joint workshop with Alzheimer's Services and the Cape Cod Museum of Art in Dennis.

Last year Faith went to Manhattan to train at the museum, and with the help of grants from seven local cultural councils and the Commonwealth Corps of Massachusetts, she brought the program to the Cape.

Twelve museums and art galleries participate, and at least one event is scheduled every week. There are morning and afternoon options, and typically the programs are run either when the museum or gallery is closed or at a time when there is less foot traffic.

"The group is small," Faith says. "It's limited to 10 people or five couples, and the facilitators are trained to specifically ask questions regarding the art that's going to help — hopefully — to stimulate memory. So it's not conversation about the brush strokes and era and style, but more sensory-stimulating questions — so questions like how does this make you feel? Do you like it? Would you want to take it home? What is it that you like about it?"

An additional benefit of the program is that it offers a nontraditional form of respite care for caregivers who are often as isolated from the community as their loved ones.

"It's really important for caregivers to get out, and when they are with a group, sharing a similar experience with other people that are going through this, they can learn from the group as well," Faith says, explaining that couples who've been together for many years have a dynamic of communication that is difficult to change.

Participating in the events teaches caregivers how to communicate in a different way that can access the Alzheimer's brain.

Each venue offers something unique. Artworks! Gallery in Orleans has photographer Rowland Scherman's iconic photos from the 1950s and early '60s. It's also featured the work of such local artists as Heidi Gallo, Bonnie Brewer, Jim Owens and Neal Nichols Jr.

Meri Hartford, who owns the gallery with her husband, David, says trained volunteer coordinators Trudy and Charlie Potter do an incredible job with the presentations.
"They come beforehand and we pick out five or six pieces to talk about and we're looking for things that would be in a broad category to stimulate conversation," Hartford says. "I wish more people knew about this program, because it's wonderful. The caregivers who come in are so drained that you just want to do something for them. When they leave, everyone feels better."

Faith is excited about two new venues that are in the process of training and will start offering programs in April. The Edward Gorey House in Yarmouthport provides an opportunity to explore the offbeat humor the artist was famous for, and the Cape Cod Museum of Natural History will be offering "Nature in Conversation" talks. Sixteen museum volunteers have signed up for the training and will use everything from geological maps to animal exhibits and hands-on shell displays.

Because of the success of the program at the Cape Cod Museum of Art, the museum just received a grant to expand it to include a multimedia, hands-on art class on the third Friday of every month. Caregivers can call the museum to reserve a space.

"It's also limited to 10 people or five couples, and you come with your spouse or parent and you create something that hopefully will also elicit memory," Faith says. "This is the wave of the future, because so many people have this disease and people are really trying to stay in the community. How do you support them and how do you look at the disability that they have with their memory and make it into a positive?"
Participation in the program is free, and couples can attend as many different programs as they want, provided they make reservations by calling Alzheimer's Services of Cape Cod & the Islands.

Faith is looking for other museums and art galleries willing to participate and will be offering a two-part community training for facilitators May 10 and 24 at the Cape Cod Museum of Art. After the training, volunteers will be matched with one of the current facilitators as a mentor for several months to learn how to communicate with and gain experience working with people with dementia.

Guides by People with Dementia for People with Dementia

The following is worth looking at. Prepared by The Kenneth G. Murray Alzheimer Research and Education Program (MAREP) at the University of Waterloo in Canada by people affected by Alzheimer’s Disease (AD) it speaks to coping.

I am setting out the descriptions each of the five articles available to download as from the UofW Website by simply clicking Download. Go To
MAREP

By Us for Us© Guides

The BUFU series was recently profiled in the news. Watch video

The By Us For Us© Guides are a series of guides created by a group of talented and passionate persons with dementia. The guides are designed to equip persons with dementia with the necessary tools to enhance their well being and manage daily challenges. What makes these guides particularly useful is that they are created By persons with dementia For persons with dementia.


ALL GUIDES ARE NOW AVAILABLE IN PDF

These documents were produced at the University of Waterloo by the Murray Alzheimer Research and Education Program, and are protected by copyright. However, permission is granted to individuals and facilities to reproduce specific pages for their own educational purposes and for not-for-profit purposes only.

Hard copies of each guide are still available and can be ordered online, by downloading an order form and mailing it to MAREP with payment, or calling our offices to place an order. See order forms below.

Living and Transforming With Loss & Grief

The Living and Transforming with Loss & Grief Guide, which incorporates the experiences of family partners in care as well as persons with dementia, is a practical resource that recognizes the experiences of loss and grief that come with the journey of dementia. This guide provides useful tips and strategies for acknowledging, experiencing and transforming with loss and grief. This booklet aims to guide readers through the ebbs and flows of loss and grief to a place of acceptance, peace and hope.

Memory Workout

The Memory Workout Guide provides examples of cognitive exercises and it encourages persons with dementia to develop and maintain regular "workouts" for the brain so as to function better while engaging in enjoyable activities.

Managing Triggers

The Managing Triggers Guide is a practical resource that outlines the main triggers experienced by persons living with dementia, and offers solutions for how persons with dementia and their partners in care can manage and alleviate these triggers. The guide focuses on managing triggers associated with social situations, verbal communication, changes of abilities and memory, and managing your environment and negative emotions.

Enhancing Communication

The Enhancing Communication Guide is a comprehensive resource that outlines the main challenges associated with communication as experienced by persons with dementia. It explores communication challenges that can occur with family and friends, in social situations, and when communicating with health care professionals. The guide provides practical solutions for persons with dementia and emphasizes the importance of using a wide range of communication strategies in order to make opinions, feelings and experiences known. It also suggests ways that family partners in care and professionals can enhance communication with persons with dementia.

Enhancing Wellness

The Enhancing Wellness Guide focuses on how enhancing physical, psychological and emotional, social and spiritual well-being can help us live our lives to the fullest extent, even after diagnosis of dementia. The guide provides helpfulf tips for eating well, taking care of your body, being physiclly active, staying centred with yourself, staying connected with others, and living in peace, all of which are important in enhancing wellness.

Tips & Strategies

The Tips & Strategies Guide is a helpful resource that contains ideas and suggestions for living daily with an illness causing dementia. The guide provides additional memory "workout" ideas, tips for those in the workforce, and general tips and strategies for daily living. Click here for PDF copy.

As of January 21st, 2009, a nominal fee of $1.00/hard copy book has been applied to the BUFU guides. All six guides are available through the MAREP website, or by calling 519-888-4567 ext. 32920.

Please use either the printable order form or the online order form to place your order now.

Murray Alzheimer Research and Education Program
RBJ Schlegel - UW Research Institute for Aging
University of Waterloo, LHI
200 University Ave, West
Waterloo, Ontario Canada N2L 3G1

Guides by People with Dementia for People with Dementia

The following is worth looking at. Prepared by The Kenneth G. Murray Alzheimer Research and Education Program (MAREP) at the University of Waterloo in Canada by people affected by Alzheimer’s Disease (AD) it speaks to coping.

I am setting out the descriptions each of the five articles available to download as from the UofW Website by simply clicking Download. Go To MAREP by clicking:

By Us for Us© Guides

The By Us For Us© Guides are a series of guides created by a group of talented and passionate persons with dementia. The guides are designed to equip persons with dementia with the necessary tools to enhance their well being and manage daily challenges. What makes these guides particularly useful is that they are created By persons with dementia For persons with dementia.

ALL GUIDES ARE NOW AVAILABLE IN PDF

These documents were produced at the University of Waterloo by the Murray Alzheimer Research and Education Program, and are protected by copyright. However, permission is granted to individuals and facilities to reproduce specific pages for their own educational purposes and for not-for-profit purposes only.

Hard copies of each guide are still available and can be ordered online, by downloading an order form and mailing it to MAREP with payment, or calling our offices to place an order. See order forms below.

Living and Transforming With Loss & Grief

The Living and Transforming with Loss & Grief Guide, which incorporates the experiences of family partners in care as well as persons with dementia, is a practical resource that recognizes the experiences of loss and grief that come with the journey of dementia. This guide provides useful tips and strategies for acknowledging, experiencing and transforming with loss and grief. This booklet aims to guide readers through the ebbs and flows of loss and grief to a place of acceptance, peace and hope.

Memory Workout

The Memory Workout Guide provides examples of cognitive exercises and it encourages persons with dementia to develop and maintain regular "workouts" for the brain so as to function better while engaging in enjoyable activities.

Managing Triggers

The Managing Triggers Guide is a practical resource that outlines the main triggers experienced by persons living with dementia, and offers solutions for how persons with dementia and their partners in care can manage and alleviate these triggers. The guide focuses on managing triggers associated with social situations, verbal communication, changes of abilities and memory, and managing your environment and negative emotions.

Enhancing Communication

The Enhancing Communication Guide is a comprehensive resource that outlines the main challenges associated with communication as experienced by persons with dementia. It explores communication challenges that can occur with family and friends, in social situations, and when communicating with health care professionals. The guide provides practical solutions for persons with dementia and emphasizes the importance of using a wide range of communication strategies in order to make opinions, feelings and experiences known. It also suggests ways that family partners in care and professionals can enhance communication with persons with dementia.


Enhancing Wellness

The Enhancing Wellness Guide focuses on how enhancing physical, psychological and emotional, social and spiritual well-being can help us live our lives to the fullest extent, even after diagnosis of dementia. The guide provides helpfulf tips for eating well, taking care of your body, being physiclly active, staying centred with yourself, staying connected with others, and living in peace, all of which are important in enhancing wellness.

Tips & Strategies

The Tips & Strategies Guide is a helpful resource that contains ideas and suggestions for living daily with an illness causing dementia. The guide provides additional memory "workout" ideas, tips for those in the workforce, and general tips and strategies for daily living.

As of January 21st, 2009, a nominal fee of $1.00/hard copy book has been applied to the BUFU guides. All six guides are available through the MAREP website, or by calling 519-888-4567 ext. 32920.

Please use either the printable order form or the online order form to place your order now.

Murray Alzheimer Research and Education Program
RBJ Schlegel - UW Research Institute for Aging
University of Waterloo, LHI
200 University Ave, West
Waterloo, Ontario Canada N2L 3G1

WHEN OH WHEN DO WE GET SOMETHING DONE?

Bob Demarco on Alzheimer’s Reading Room ran the following this morning:

RE: Nobody Wants Our Dad

Joleen commented:

I am in a similar situation with my father currently in Michigan. His assisted living home called 911 after some violence and he is still in the hospital geri-psych ward 5 weeks later drugged out of his mind!

His assisted living home recently called to say they won't be able to take him back because his psychiatrist can't GUARANTEE that he won't have a violent outburst again (of course, he can't guarantee such a thing)... so now he's homeless and we're stressed while trying to figure out this confusing assisted living/nursing home matrix where there seems to be no obvious rules for who WILL and WON'T take him.

It's a ridiculous system! At least geri-psych hasn't released him yet so we still have time... and I believe my mother may have just found a home to take him! She has been working on this day and night...

Comments, Insight and advice wanted on this issue.

There were many comments in response.

My Comment was this: I think it is wonderful those of you with knowledge of what to do extend yourself to Jolene so she can contact you directly for answers. She is not likely to get them elsewhere.

This is a problem that stymies me on what to do. My singular experience with it is my brother diagnosed with Pick's Disease, abusing alcohol to medicate the aberrations he is experiencing and now in jail. He was picked up last night on an illegal turn, tested for alcohol, found to be .20. The police then found on checking he was driving after revocation from a previous DUI offense. He was last arrested Thanksgiving Day, drunk, fleeing arrest.

I wrote earlier: He should know better, should not drink, should not drive, he needs some behavioral modification. My wife and I argued about my attitude. She pointed out I have Alzheimer’s Disease myself. One very evident manifestation of it is lack of judgment. Just as my brother, my judgment can be terrible faulty. Oh how I love our disease!

I therefore retract that comment apologize to my brother and offer him more compassion. The poor guy is sick and sorely in need of help.

My brother, a 66 year old pillar of propriety, entirely decent mild mannered sensitive man, who lived with and cared for both our parents until they died, was a Medicare Insurance Executive, turned school bus driver in retirement, never had a traffic violation or even said an offensive word. Church parents and family were his life. Than all of a sudden, 6 months ago exit stage left Dr Jekyll, enter stage right Mr Hyde.

The initial point of my comment to which I return now was this:

What bothers me is the systems treatment of the problem. My brother’s doctors refused to see it or diagnose it. "He was depressed" they said. We carried in a description of Picks Disease, Diagnostic Criteria, and our bachelor brother’s alternate and real history to show them. The Internist, Neurologist, and Psychiatrist did take a second look. We finally got them to overcome their frugal sense of saving the insurance companies money and started real testing whereupon an MRI disclosed frontal lobe damage that fit the symptoms of dementia.

Between the medical establishment and the system of managed care imposed through the penurious spending of the Insurance Industry (called managed care) at the GetGo AD is not being diagnosed nor is it being cared for in any meaningful way.

That's on the front end. On the back end we operate under a warehousing philosophy. Put ‘em in, restrain ‘em, keep ‘em soporated. Psychiatry is just now finding the calming drugs that normally work with psychiatric conditions do not work with Alzheimer’s Disease.

Is there anything else for the AD patient who breaks out of the drug induced deep sleep, breaks the bonds binding him/her and acts out? The answer is no, The Warehouse doesn't have a clue; they operate on volumes for storage not individual care. Few other programs offering care provide any form of remedy.

The problem is us. We have let too many others decide what is best. Too often they do not have a clue. And would you believe, they are mostly professionals following the lead of doing what everyone else does, never entertaining a creative or independent thought in their lives.

We are in dire need to get serious about providing competent care for this impending disaster. This experience of Jolene is but another screaming sign of this need.

p.s. Another comment came in following mine. It is that of Judy Berry founder of Lakeview Ranch in Dassel Minnesota. Lakeview is recognized across the country for its innovative programs dealing with difficult AD patients. I have placed her comment in the Archive and encourage all to read it. Click on Judy's name which I have hypertext'd

I apologize to Judy and the friends I have at Lakeview for overlooking them as a valid exception to the “Rule of Warehouse.”

TO DRIVE OR NOT TO DRIVE…. Part 2

Bob DeMarco repeats himself on Alzheimer’s Reading Room. In his article Driving with Alzheimer's Can Mean Death he discusses key questions about driving. “Should persons diagnosed with Alzheimer’s Disease (AD) be prohibited from driving as soon as their AD has been identified” he asks. The point of the article raises much for thought and consideration by all of us affected by this disease.

The consequences of either driving or not are both beyond dreadful. Hanging the AD tag on a person changes so much. The person so classified is stereotyped into an entirely different social slot. No longer employable, no longer self autonomous, he/she becomes a person needing help, support and special concern. Everything shifts within every social group from family to outside group activity.

People do not know how to relate to a person with this disease. To do so means first overcoming the stereotype that the person is no longer functional. That done then it becomes a question of what to do with the person.

Too often, perplexed by how to do it, procrastination about doing it sets in, nothing gets done, embarrassment intrudes and the person becomes “no longer around.”

The next step for the one AD Afflicted is isolation, left out!

Wheels are so helpful in reducing this. The person with AD can maintain some autonomy, maintain activity with cohorts and take on new activities. Taking the bus allows only so much. When getting around from place to place without being able to drive turns into an effort it is let go, not done.

Marginalizing us is the worst. That gets us down the chute to later stages quicker than anything. This not only erodes our quality of life, it causes us to become a burden to others because of the accelerated time we have the need of incurring the cost of care.

ON THE OTHER HAND!

One injury to one person self or others is too much to allow a person to remain behind the wheel when the risk of their driving increases. With AD it does. Like driving while intoxicated so many subtle skills go out the window increasing the danger of driving.

In my case it was self evident. I could not see and articulate the danger in what I saw; I could not multi-task sufficiently to handle the multitude of incidents suddenly presented to the driver requiring action to deal with them.

A simulated driving test told me this. My wife told my doctor when I couldn’t hear her telling me this. The test demonstrated the practical difficulty I was having with driving. A later Neuro-Psychometric test validated the reason for the problem: namely, low scores in executive function, multi tasking and visual perception.

Bottom line I quit driving. That was that, nearly four years ago.

Liability is another factor. If there is an accident look out for sharp lawyers. Let
one of my former colleagues get there jaws clamped on AD and any knowledge it would instill that your driving skills put you at risk, that could make a case.

Whether or not it would be dispositive (providing a final resolution of an issue, having control over an outcome) I would not say. It would be a strong factor in establishing liability. It certainly is a charge that would be submitted to the jury to decide was this a cause of the accident and resultant damage and injury.

I have many friends with AD able to drive with whom I willingly ride. Thank God for them, I get around. One is not good with directions. I am. We make a perfect team, pilot and navigator.

I talked about this issue once before in TO DRIVE OR NOT TO DRIVE, THAT IS THE VEXING QUESTION a comment I posted on 1-10-10. In it I was commenting on an earlier article by Bob DeMarco about driving.

Read both in conjunction if you find this subject worthy of review.

If we consider revoking driving privileges when AD is diagnosed quickly diagnosis will be avoided by us, by our families, by our doctors, by society at large. The individual short term price is just too high! The long term cost is conversely higher if diagnosis is avoided or delayed. Early Stage resulting from Early Detection provides the opportunity to keep people functioning longer at substantially reduced social cost for care.

My conclusion is this:

I am not prepared to say “just cuz you got it, you shouldn’t drive” Nor am I willing to see driving rights revoked just because you have been diagnosed with AD. We should not require this anymore than prohibiting anyone over the age of 70 to drive.

Until society starts providing some sensitive care and social context for those with the deficiencies that might bring this about there should be alternative ways to live, communicate and move about provided. Without that the devastating loss to a major portion of our culture to whom more is owed is morally untenable.

If we are at that point doing this we have become the “Brave New Society” where folks over a certain age are either euthanized or warehoused.

THE BLESSINGS OF LIFE FROM THE HURTS OF LIFE

Today in the Alzheimer’s Reading Room Kerry Runyeon, the caretaker of her mother Lily, the presenter of the Blog: Living In The Moment With Lilybird presented the most sensitive thoughts about the compassion of those who surround us, we the Alzheimer’s (AD) Afflicted. The article is entitled Haunted. I have posted it in the archive and hypertext’d both it and the reading room for you easy access in reading it.

The picture accompanying it which I both post both with the article and here is for me the key behind Kerry’s sense of need to share with the couple of whom she speaks. Its title is Guides Will Appear.

How very appropriate and known so well by those of us affected by this disease and for that matter everyone affected by the many catastrophes visited on the lives of all of us.

Too often I scoffed at the aphorism “God will not give you more than you can handle.” This occurred most often in the face of “Not again, I can’t take one more calamity, Enough Already!”

Looking at life retrospectively the help is there each time if we are attentive enough to use it. Each time we did it turned out better then we would have ever expected.

For me being diagnosed with AD accepting it and learning to cope with it has accentuated this more than anything else. Being stricken with AD was one of the three worst things that could happen to me. Well, it did happen and know what? “Ain’t near so bad having it as worrying about getting it.”

The guides were certainly there for me and have not left my side once since arriving. What a blessing it has been for me to know in this adversity, I have help, that help is leading me with purpose the goal of which exceeds anything I believed I could do with my life.

Like Kerry sensed by her haunting it has instilled in me an urgent need to share, to talk about it and to concentrate my experience not on me but on others to whom I might be of some help.

That was the need I suspect of which Kerry spoke haunting her because she was not able to connect and care with the two of whom she speaks. Way to go Kerry! Just feeling it and sharing that with us is a winner in itself.

To cap this comment I want to share this. I exchanged emails with a high school classmate with whom I’ve had no contact in more than 50 years. I told her about my life, its ups and downs, capped by AD. Told her how much I hated and loved what happened to me and above all valued it as a gift to build on.

Her comment back is worth sharing in that it applies to all of us plodding through this condition we know as life:

"As much as we would prefer to just enjoy the pleasure of success and avoid the pain of reversal, both are necessary for us to become the persons we were meant to be. How else would we learn to be compassionate, empathetic and vulnerable to others and to begin to experience/practice love and forgiveness." Yvonne

This statement says it for all of us. When we need to extend the serenity and blessing we get from it is when we are haunted each time that need is stymied, that is what it is all about.

MORE THAN INTERESTING: Options for end of life

Two articles ran in the past two days, the first in the New York Times:

1. Voluntary End-Of-Life Measures Banned At Catholic Hospitals
2. New Tool Lets Patients Call The Shots At End Of Their Lives

Click on hypertext of article to go to it

Read together they cause you to stop and think. Read separately the first invokes anger the second evokes relief.

Why not allow one to control their end of life circumstances? It is in their interest, in the interest of their families and above all in the interests of community, if just for the economy of it.

The first argument for control is the religious/moral one that certain religions claim the prerogative to enforce their beliefs not only on their own members but everyone else. In this case it is done under the guise of protecting life. The state should prohibit murder. They extend to prohibition to end of life consideration. Many of the arguments prohibiting any act closely akin to taking life is supported by tortuous reasoning that their is urgent need to avoid setting into motion any act that has the capacity to the ultimate allowance of life termination actions.

Beyond religious the arguments tend to be based on issues of police state, culling the unwanted or limiting population by term limits on life.

To me the reasoning simply fails for these reasons: The decision calls on the moral and ethical decision of the individual. The state or someone else has no business stepping in and taking this over.

The power to decide and pre-adopt options removes the emotional difficulties of family letting their loved one go. It saves money that might otherwise be spent on improving care for those needing nursing services who remain quite alive. This is one are that cost cut backs are rampant. It can also reduce the cost of care services which are now confiscatory.

The reasons can go on and on. The most important one is it saves the person suffering the pain of end of life process that part that is wholly unnecessary. It does no good for anyone, the sufferer of loved ones.

It is for this reason it turns my crank to see the Church to which I was once affiliated to be taking such a narrow minded, dogmatic and uniformed position that it is. In turn I applaud the State of Minnesota in providing the ways and means of assuring one the exercise of their individual rights in the end of life.

Is There Another Route To Follow Seeking A Cure?

AN INTERESTING REPORT: Is There Another Route To Follow Seeking A Cure?

Hopes for a cure are finding another approach. An interesting article in this morning’s New York Times entitled: Infection Defense May Spur Alzheimer’s (click on the hypertext to go there)

It describes an altogether different look at the existence and cause of Amyloid Plaque. These clumps that are seen to form into the brain and are temporally associated with Alzheimer’s Disease (AD) system corresponding with the existence of the plague draw the conclusion that the forming of these plaque is what produces the symptoms.

The first requirement lacks finding namely that these plaque deposits do cause the dysfunction in the brain. They may be there in spite of or because of and have little to do with AD.

The article talks about the clumping may be the after affect or the precursor to immune response to infection in the brain, or it may be the immune system itself fielding bodies to fight infection. It may be secondary to infection or to swelling secondary to infection making it tertiary to infection.

It may have nothing at all to do with any of this just as amyloid plaque may have nothing to do with any of this.

The article concludes: it is something that bears watching. I agree.

The most important thing I see in this article is how little progress we have made, how far we have yet to go in finding a cure.

Yet all we hear we need to raise funds to find a cure. We hear so little we have to bind together to find economy in care because that is critically needed in the short term future. A Catastrophe is on it way, the Tsunami of it is cresting. We individually, as groups as a body politic have not the funds nor do we have the capacity to meet the needs as they are currently structured.

KEEP THE BRAIN COOKING!!!

This is a letter to my friend on Facebook responding to his recommendation about Niacin. Thank you Joe O’Connell

Joe, I take Niacin every day. Niacin along with many other common remedies including Fish Oil, Good Eating (like Mediterranean Diet,) Daily Exercise, and stimulating the brain with Creative, Intellectual and Social Activity. All are tools to prolong Early Stage in Alzheimer's Disease (AD). I believe it to effectually helps to develop Alternative Pathways and Regenerate Brain Tissue. This will not cure it but will curtail the progression of it.

I have wondered about and followed the growing reports of the benefit of artwork with AD afflicted. In my case I never had an interest nor ability with art work. After AD I observed this to grow into what you see of my work on Facebook. Where did this come from beats the hell out of me. Its value for me is it interests me no end, I find so much contentment in doing it, and I have the satisfaction knowing I am stimulating the hell out of my brain.

It was in this arena I was so doggoned please to have your interest in my work and then ask me for a digital copy of my Cosmos musing. I was honored to have been asked, more so to be able to share it with you.

I have wondered what the ArtWork Gig is with us AD Afflicted. I read a book some time ago that really captured my interest. My Stroke of Insight, written by Jill Bolte Taylor a neuroanatomist at Harvard. Jill had a stroke that completely disabled her left brain. The mechanical, the data cataloging, the logical part, as she described it. This function was lost to her. She found her consciousness emanating from her right brain, the part of the brain whose function is altogether different.

She describes that from the stand point of her experience as that part that evokes the world without sequence, all is Now. It sees intuitively, creatively, through it she believed she could hear the Cosmos sing. What she described was so much the viewpoint of Buddhists who see our material existence as an illusion, our real that over and above, experienced outside of, before and after life, sought in this life by way of meditation.

It was from the right brain, spurred by a general understanding from her professional background, that she went to work to revitalize her left brain and affected a full recovery.

My conclusion after reading the book, my experience, and everything else I read, the left brain, the usual site taking the hit in AD, particularly the Executive Function part found in the frontal lobe, can be supplemented by other pathways. From that I theorize: I wonder if we wander in and tap function of our right brain and creativity as well as other functions from that seep out and become functional in us in ways that we never had cause to utilize before.

I have no basis for this but my own experience. Nonetheless this is what my experience
leads me to.

Exhibit #1 A picture of the Courthouse where my Grandfather had his office as County Attorney for many years, where I would go to watch my father (The Impeller) cross examine witnesses in trial, where I spent a great deal of time trying cases.

It has nostalgic memories thus my impression of it is this:

THE BABY WENT WITH THE BATHWATER!

How long do we continue following this lead over the cliff with all the other good intended programs to FIND THE CURE!

Let’s change the subject. Ask Congress to FUND FOR CARE Right now this is more critical than finding a cure for us who are afflicted by this terrible disease.

Think of it. We are the baby in the bathwater. They use the Baby in the Bathwater to scare the world into funding the Pharmaceutical Industry that has made out like bandits researching for this illusive grail, viz. the cure!

This has been the primary object and undertaking of the Alzheimer’s Support Organizations for the past 20 years. We the Babies in the Bathwater are Exhibit 1-A. Are we being used folks? Is there an agenda out there, silent but deadly, sucking the all of us, the country, dry of funds on programs that have not produced promise at the cost of stocking the flames of the catastrophe nearly on us?

I write on this often on this Blog; See: The latest entry: SEQUEL: Alzheimer’s Disease — How Long Before We Find a Cure? And Alzheimer’s Disease — How Long Before We Find a Cure? These are in the list on the left of this page. There are many many more if you look at each month and the list of articles that month had posted. This pretty much says what I see as the “Great Duplicity” of it all!

I can no longer support raising money for the cure until I see some definite steps to ease the burden of our future and find Economy in Care!

Until then do not expect me at the fund raisers!

Starve the Beast!!!

Bob DeMarco on Alzheimer's Reading Room raises this proposition: Will California Abandon In Home Caregivers and Seniors? Click on it to read it. He invited comment on his article on the Reading Room. What follows is the comment I made.

The scariest part about our future is our past. It is in our past we complicated our future. Applied in the present we are seeing more of what is coming. This is not broad brush euphemism. It is characterization of what we have done to our economy. It is specification of what has happened in our Country to our Health Care System.

Our short sightedness has caught up with us. It has caught up with us so terribly it is now paralyzing us. California’s predicament is proof positive. Probably our richest State in size, resource, people and public programs, it is now becoming a state of impoverishment. How is this possible? How can they face having to dismantle their in-Home Health Care program at the expense of the people serving and the people served, leaving both groups literally without recourse?

How could this be let to happen?

One of the keys to the grand failure of California one might hypothesize is the Proposition System rampaging throughout the state. What is the proposition system? Grossly simplified: it is a legislative referendum system of sorts allowing the electorate to act directly for and against legislation not to its liking. It is considered pure democracy in action.

In application it amounts to legislation by demagoguery. In California it has placed strictures on taxing and spending by government made absolute by the vote favoring the Proposition that Government will or will not carry out a certain action.

With piecemeal passage of controls by enactment of propositions petitioned for and voted on prohibiting an action the people of California have taken the ability of their Government to do business or act in response to emergencies and crisis. The art of legislation and administration in Government is often balancing the agenda exercising its discretion prioritizing needs and providing services.

The propositions have so strictured Government by not allowing it to do this and providing no other alternative to calm a crisis or allay a catastrophe.

It faces what those who for the past 30 years have been proposing in Washington when they loudly declaim “Starve the Beast!” Starving the Beast means prohibiting spending and taxing without other recourse for the purpose of making it impossible to fund the business of governing. In so doing Government is caused to die and disappear.

The gang that cries this is the same gang that spent recklessly on defense believing it would destroy the Evil Axis of the Soviet Union. Did Reagan destroy communism or did it do it to itself? The Military Industrial Complex made out like bandits and the Big Brass smiled the smile of the Cheshire Cat!

Eight years of Baby Bush saw us fighting wars we did not fund. To what purpose?

The Starve the Beast Boys spent more, inflated a deficit that is now acting as a spring steel ring choking off the flow of resources with which to govern.

We as a people cannot pay for our care. We as a government cannot afford to help out. We have passively witnessed all of this come to be, while the favored few have rigged the system to exploit the people for profit and turn around and kill the goose the laid the golden eggs.

The bottom line is this: In California for shortsighted gain they rigged the system and now it won’t work. This is a process occurring throughout the country soon to be seen in your local theatre too. If you have any doubt look at Washington.

The Dilemma: TO HURRY DEATH OR MUCKER ON?

This topic was a “no go there!” It was until I saw the inequity to my family caused by my hanging on when no longer able to take care of myself. When I reached the need of constant care in one of our warehouses called Nursing Homes, that is a time that calls for another look at this Dilemma.

Nursing homes, Assisted Living, Home Care and most other Supportive Care Programs are prohibitively expensive and getting worse each day. There is no financial help from the government for the greater number of us Middle Income Folks who responsibly saved up for our own retirement.

You pay it out, when that happens the Government will help. You are then broke but ok. Your spouse, well the spouse has to pay for you to till there is nothing left for her to live on. Nice Hey!

There is also the tragedy suffered by the family as you fade into La-La-Land. Guilt, Obligation, the Need to have you remain if only in body and not in brain. These keep warehousing of AD Afflicted well in place. For what?

The diaper industry? The profit in soporific drugs? Jobs for the recent immigrants who will work for nothing, learn their English on the job while not caring; “it’s just a job insulting them with minimum wage.” Who needs to speak to an AD patient, they won’t understand? Who will gripe if they overlook doing this or that for them! Too often this amounts to the quality of our care.

Take my own life as my mind floats out the door I asked my Rabbi. She said “would you deny your wife the blessings of caring for you?”

If I asked my Buddhist Mentor the answer would be about the same, don’t monkey around with Karma, hers or yours.

My Confessor back when I was Catholic: Offer it up for the poor souls or the greater honor and glory of God.

These are all good reasons to which I have adhered and continue to some degree to do so.

It seems to me however, there is a time to call it quits, call all the chits in, when it makes no sense whatsoever in going on.

It is not when with AD I am this:

It might well be time when I become this.

This is the changing face of our disease. Early Stages, there is quality of life that we can really work on continuing in that stage.

Later stages, it is hard, for so many reasons, so much complication, so little return or benefit accruing by continuing life. My focus on this is those around me. I so hate to see my condition doing to them what it will. Particularly doing it when I am just not there.

These comments of mine are prelude to another good article dealing with this Dilemma taken from the New York Times last week. It is on my Archive: A Mother’s Decision to Die Click on it, it is worth reading.

I don’t have an answer, I have a lot of questions.

A TWO "fr" ONE ON ART AND HAVING PURPOSE

Two articles on Alzheimer’s Reading Room ran the last couple of days deserve your reading. To me they talk to each other and to all of us in the Alzheimer’s Disease (AD) Circle.

1. My Buddy Max Wallack, Puzzles to Remember
2. Having Greater Purpose In Life Associated With A Reduced Risk Of Alzheimer's Disease

(Click on these articles in hypertext to go to them on my Archive or click on the hypertext’d Reading Room above and find them there along with a lot of other good comments).

The first article speaks a common theme seen on my blog; it speaks of puzzles, stimulating the brain. It speaks about a young man seeing this and doing something about it as he cares for his “Great Grammy” who has Alzheimer’s Disease (AD)

I quote the following paragraphs from the article. It tells what the rest of the article is about:

Max learned that puzzles and similar artistic activities can slow down the progression of Alzheimer's disease and dementia. Some research indicates that such activities can be as effective as medication in helping this patient population.

Other people are starting to understand that art improves the life of persons suffering from Alzheimer's. Max understood this from his observations. I call this Bunk House Logic. Max is a real cowboy. When Max goes into his bunk house look out world.

I find the bottom line is here. We can spend all of our time raising money so the drug companies can find a cure, the search for which they have spent untold amount of money with no great success these past 20 years.

We can put half of that effort in finding economical ways of caring for people with AD. I wonder what break through would occur and improvement in quality of life would be obtained.

Max Wallack, a thirteen year old kid is having great success doing this. The results have such an impact. Without these kind of innovations in treatment we in AD would be consigned to that lonely limbo ours that we live between the doctor telling us take this and come back in a year, we do, he says the same thing again. As this keeps occurring we crawl further back into the back closet and do our best to close our systems down.

More Max’s out there might result in out having a better quality of life, stem our decline, and keep us off the institutional cost rolls longer

The second article states:

Alzheimer's disease is one of the most dreaded consequences of aging, and the identification of modifiable factors associated with the risk of Alzheimer's disease is a top public health priority for the 21st century, particularly given the large and rapidly increasing aging population

It goes on to say:

…greater purpose in life was associated with a substantially reduced risk of developing Alzheimer's disease, as well as a reduced risk of mild cognitive impairment and a slower rate of cognitive decline.

It speaks of the need to have purpose in life even in the face of AD you may not



feel it. The first sense after diagnoses is: “They pulled the plug, it is all over, might just as well sit around until I’m standing in the corner drooling, talking to my self and wondering were the hell I am!

That is a choice many of us make and there is little good reason not to. We get named, then stereotyped, then shunned. In varying degrees family, friends, and community step back and start a program of overlook. They don’t know what to do with us, what this disease is really, so they do nothing; they just step away, all of a sudden they are gone!

There is life after AD and we need help in finding it. All the effort now is to get medication which will help others not get what we got. But guys, we got it and we need help!

Having purpose is one of the top reasons to maintain cognizance and quality of life to go with that. This can be secured by programs that stimulate, that bring people together, that recognizes the new paradigm we find ourselves is and help us make the best of things in it.

I found purpose turning it over and deciding I am going to write about AD until people get tired of reading me. Well, folks keep reading, their number keeps growing and comments left are wonderful in their accolades.

Able to share what it is like, and just maybe, help someone else, that is what makes having this rotten disease worthwhile.

We need the common effort to open the door I found to open to allow others in to find the benefits of putting their disease to purpose for their benefit.

HITTING THE MARK!

Some articles I read just do it. I have posted one today that does just that. It hits the Mark!

I say and I say –

• Eat Right
• Exercise Daily
• Stimulate yourself intellectually creatively and socially.

The rest will follow.

Eating is a drill that takes discrimination, application and above all perseverance. Exercise? We all know – it ain’t good until it’s done.

Stimulation? Hey that takes a little doing. It needs to be of a kind that helps. You can stay stimulated in front of the Telly all day, pulling at the casino’s one arm bandit, doing so many things that are able to distract us into mindlessness. This is not of what I speak.

Intellectual and Creative activities will probably be to a degree new to all of us. It is there to be done, it gets interesting as you do it, and above all it becomes fun. What must be done is activity that challenges our thinking process.

There is so much Suduku you can do, how many brain games are out there? If that suits, by all means get started and get cooking. If you can still read keep it up so you can keep on doing it. If you can write at all, journal, do a personal history of reminiscence, write a real prayer. Music will lift the soul as will a walk outside, or in the woods, just to sit by a brook. Activity leading to giving your soul a rest is a wonderful way to do activity.

Above all Art will do wonders for you. I am surprised in my own case since Alzheimer’s Disease (AD). There is so much talent I have discovered in me that I had no idea existed. Better than that is the enjoyment of doing it.

I can work at something and be entranced for hours. Pleased, content, when I am done I wonder where the time went. I can’t wait to get up in the morning to get started again.

In writing today which I do after a time of reading in the morning I had three articles worth writing about. I started on a pair of them. I went for lunch, returned, read an email posted to a number of us from Mimi Steffen, accompanied by an article from the Sunday London Times.

That took precedence on what to write about. It starts out about Rita Hayworth, who was one of us, and her daughter, Jasmil Kahn (remember Ali Kahn, international playboy, precursor of the Oil Sheiks?) who now heads up Alz.Org International.

Hayworth painted and painted and found peace for her self troubled by AD.

I have posted the article in my Archive. Click on: FIGHTING ALZHEIMER'S WITH A TOUCH OF BEAUTY.


The article speaks in depth about the why of it. I have written my hypothesis about why it is working and I find this article more in point to what I have been saying. It zeros in on the executive function part of the brain impeded by AD describing it as the logical part of us that starts failing. I have called the same anomaly dysfunction of the left brain the mechanical data library.

Interesting to me as I read this article, when I tested, twice, the executive part of me was functioning at a subnormal level. If the rest of me was registering cognitively at the same levels I would be at an imbecile level.

I thought art and intellect were working for me before I read anything about it. Now what I am reading is telling me the reason I was coming to believe what I did.