Book/Resources

Ethical Issues

Incontinence

Physical Care

Ethical Issues

Challenging Bias and Negative Attitudes About Alzheimer's

This section lists specific articles that deal with the bias that surrounds Alzheimer's Disease, a bias so pervasive and so accepted into the language it isn't even recognized as bias.   That bias goes largely unchallenged, it too often interferes with how services are provided for our people and it undermines the resolve of caregivers.  Most of all, and more importantly, it degrades the person who is actually doing the dying from this disease.  It is time to separate the realities of this disease from the fear that prompts the jargon attached to it, and it is time to consider the human being that still exists in spite of what this disease does to them.

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This section lists articles that deal specifically with the logistics of incontinence care throughout the three stages of Alzheimer's.  I decided to focus on incontinence care in this web site because that is the greatest barrier to care we caregivers face with this disease and it is the one subject no one wants to talk about. 

We are faced with problems very specific to Alzheimer’s. The very progressive nature of the disease mandates different ways of working with our people at different stages. It isn’t as if we can set a plan and that’s all there is to it. The tasks are further compounded because the demise of the thinking process robs our people of the ability to co-operate with their care and so how we approach them marks the difference between success and disaster. Add this to our natural taboos and our built-in reluctance to enter someone else’s private space and you face a formidable barrier to care. 

The good news is that this barrier is crossed every day by thousands of caregivers facing this illness and this page is here to help you cross it with dignity and resolve.    

On the above title page I offer: 

• how to organize your tools and equipment

• how to see the tasks as tasks  

• how to deal with the needs that develop through the three stages of Alzheimer's

Some of these articles listed in this section also appear in other parts of this web site.  Because we are affected by the traditional attitudes towards this disease it is difficult to separate what are merely tasks from the taboos that surround the loss of the ability to communicate.  

• There Has To Be A Better Way

• Glossary of Terms

• Facts about Incontinence and Alzheimer's

• It's Just Poop People! How Bias influences attitudes towards this level of care.

• Challenging the Politically Correct   (also listed under Ethical Issues)

• I Could Never

• To Diaper or Not to Diaper *

• Products and Resources

*(on ElderCare On Line,  Rich O'Boyle for permission to reprint )

Products: 

The Stages of Incontinence Care
1.  Assisting and Supervision Stage
2.  Taking Charge Stage
3.  In-Charge Stage

• Been There, Tried It, Didn't Work

• Organizing the Bathroom for Incontinence Care   

•    The Supervision Stage

•    The Taking Charge Stage

•    The In-Charge Stage  

• Organizing the Bedroom for Incontinence Care 

•    The Supervision Stage

•    The Taking Charge Stage

•    The In-Charge Stage 

• Dressing for Incontinence Care

• Pads, Tools, and How to Use Them Effectively through 3 stages

Utilizing the 'Stages of Alzheimer's,' graphs, as researched by Dr. Barry Reisberg and Lisa P. Gwyther, which deal with the symptoms as they occur throughout the disease, I approach the care problems from a caregivers point of view.  Knowing in what order the symptoms occur is helpful but it doesn't aid your understanding of the process that is occurring.  This section attempts to give the caregiver reasons why the changes occur and offers a new way to look at and solve the problems that result from those changes/symptoms. 

We caregivers need to be empowered, to see our tasks as tasks and not as some very base reflection of drudgery if we are to survive.  And, our people need us to reclaim their humanity from a world that tends to see them as already dead.  What we are, is ordinary people doing an extraordinary job under very difficult circumstances and in that respect we are nothing less than heroic.  And don’t let anyone else tell you differently.

This title page lists:

• The various service providers, their job duties, assessing their qualifications, and their ethical obligations 

• How to set up a treatment team and establish a treatment plan

• How to assert your role as leader of your treatment team 

• How to document the plan, organize your records, and prepare for meetings 

• How to empower yourself as the primary caregiver

I point out pit falls to look for and avoid, and use caregiver stories to emphasize how bias can undermine even the best of treatment plans.

90% of the behavior problems that arise during the mid-stage of Alzheimer's can be lessened by altering their environment, examining attitudes used in approaching them during a crises, and being prepared to deal with the inevitable.  One must learn to step out of the world you know and into the world they now live in.  It is a world that is a very fearful place indeed and how you speak to them, touch them, approach them, work with them and convey love and acceptance to them makes all the difference. 

This title page deals with some of the myths that surround a death from Alzheimer's and it will contain caregiver stories of incredible poignancy that occurred when their family members died. The point of this page is this:   If you believe in a soul, you must believe that the soul doesn't get Alzheimer's any more than it gets Cancer.

Caregiver Stories

A Husband's Perspective on Incontinence Care:

A Wife's perspective on Incontinence Care

A Daughter's Perspective on Incontinence Care

Naomi and Ruth

Caregiver Stories

John and Dorothy and the Restaurant

My Grandfather, My Champion

Sometimes, A Bruise Is Just A Bruise!*

Tom and Mom

Tom and the Police