In many ways “caregiver training” is in truth a day in, day out revelation for families. Mostly, we do not assume the role with great preparation and experience. In fact, we find ourselves hoping against hope that this whole progressive dementia diagnosis deal is some big ol’ mistake.

Each day and every stage of the disease reveals new, uncharted territory for patients and families. We will begin our morning with a discussion of what happens in the brain and how that translates to the person as Alzheimer’s disease runs its course from the early to the late stages. Given that context and framework we will look at the range of legal needs: what, why, and when.

 Anyone who has any experience with Alzheimer’s knows that just because one has carefully gotten all one’s legal ducks in a row does not necessarily mean that those ducks will waddle accordingly! We will discuss the legal tools needed to manage care during the course of the illness, and strategies for managing those loose ducks!

How much “power” does a power of attorney really have? The answer may surprise you! What elements are crucial for inclusion in this document? Is it ever “too late” to appoint a Power of Attorney or make a Will? And what happens when the Power of Attorney is revoked?

What does the family do when the Alzheimer’s patient refuses to follow medical advice? Or financial advice? Or legal advice?

Dealing with self neglect, predators, and the (huge!) driving question are just a few of the many issues we will cover.

As the disease progresses care needs increase. Finding and paying for care, and preserving resources for the well spouse and for future generations will be addressed in our discussion. Finally, we will discuss end of life issues for Alzheimer’s patients, including advanced directives and Living Wills and the use of Comfort Care and Hospice resources.

The idea of planning for incapacity seems counter-intuitive. Or oxymoronic…is that a word? By any name, the process of planning for future disability requires a level of acceptance and insight that may escape some of those suffering the illness, and some of those who are supposed to know better and be tending to this business. Take comfort in the fact that this is a natural response for all to an illness that does “take prisoners.” It is our goal to provide information that will empower patients, families and professionals in their fight against Alzheimer’s and for those affected!

Hope we will see you on May 5th!

Call us 865-588-3700 for reservations!

Alzheimer’s is a degenerative brain disease affecting 1 in 10 Tennesseans over 65 and fully half of those who are over 85 years of age. The disease affects not just memory, but also written and spoken language, and the ability to plan, reason and problem solve. As the disease progresses, personality and behavioral changes occur and functioning declines. Family caregivers are faced with significant challenges regarding decision making and care for loved ones unable to care for themselves.

Elder Law Attorney Monica Franklin has been working with Alzheimer’s patients, their families, and caregivers for ten years. With her team of Elder Care professionals, associate attorney, and legal assistants she has worked through many of the questions and challenges this disease presents.

“Alzheimer’s Disease: The Legal Guide” is an important program designed to empower families and healthcare professionals with the legal knowledge and tools to support the best care and quality of life for those with this illness. The three hour seminar will present information relating to the legal issues in the early, middle, and late stages of the illness including:

• When and how to address driving concerns.
• Dealing with self-neglect and non-compliance with doctors’ recommendations.
• When is it too late to appoint a power of attorney or make a will?
• How much “power” does a power of attorney really have? What happens if it is revoked?
• Capacity questions and self-determination.
• End of life decisions and care.

The seminar will raise monies to fight Alzheimer’s and support better care for patients.

Scheduled for May 5, 2012 from 9 am to 12 pm, the program will be held at Parkwest Hospital.

A tax deductable donation of $25/ person or $40/ couple for Alzheimer’s Tennessee is the cost of admission. Contact hours for professional attendees will be available. Seating is limited.

For more information and to reserve your place, contact the Elder Law Practice of Monica Franklin at 865-588-3700.

“Families struggle with how to ‘do the right things’ for their loved ones at every stage of this disease. Balancing individual rights and wishes with safety, health and financial considerations is a daunting task. Our goals are to help folks to plan and effectively problem-solve, advocate and act as the disease progresses.” – Monica Franklin.

Special Program:

Tools for Dealing with Caregiving Challenges

Presented by Susie Stiles, LCSW

Thursday April 12, 2012

3:30-4:30 PM

4931 Homberg Drive  

Call and reserve your seat!

865-588-3700

      

 Born between 1946-1964, Baby-Boomers are

 the products of countless passions surrounding

 The Great War to end all wars. 

We are the consummation of the energy and ideals of

the Greatest Generation, and ultimately

 the incarnation of their hopes and dreams for better lives, and a better world.

 We are an historic, massive generation

of brothers and sisters.

We share an unprecedented connection as cohort,

together bearing witness to the fire, and rain, and sunny days of the past six plus decades. 

We are now tasked with the care of our elders,

 even as we embark upon our own later lives with the reality that Alzheimer’s disease will grip

one in eight of us by age 65, and fully  half of us by 85.

As a generation… as cohort…

We are the world; we are the children.

Come together, right now. 

SUPPORT BETTER CARE FOR

LATE STAGE ALZHEMER’S PATIENTS. 

DONATE FOR THE CARE

BECOME A BOOMER FOR PEACE!

[Provision of Excellent Alzheimer’s Care for ET Elders]

GIVE PEACE A CHANCE!*

*Contact  SUSIE STILES  on Facebook or by email to get your PEACE SCARF for a mere $20 donation!

stileswilson@aol.com/susie@monicafranklin.com

PLEASE DONATE FOR THE CARE!

THE ELDER LAW PRACTICE OF MONICA FRANKLIN IS PARTICIPATING IN THE 2012 MEMORY WALK .

ALL DONATIONS WE COLLECT WILL GO TO A SPECIAL FUND SPECIFICALLY FOR THE CARE!

Part 1 in this series introduced you to the need for increased focus on palliative and hospice care for patients in the late stages of Alzheimer’s disease.  Part 2 took a closer look at some of the issues that relate to this need.  Today’s post will wrap up this series and will look closer at the results associated with patients and families faced with inadequate resources for late stage Alzheimer’s care.

 BAD THINGS THAT ARE HAPPENING TO PATIENTS AND FAMILIES BECAUSE OF INADEQUATE RESOURCES FOR LATE STAGE ALZHEIMER’S CARE:

• When geriatric behavioral units are unable to find placement families are told that the patient has been discharged and that they must come and get him and take him home because no placement can be found. This is in spite of the fact that the patient has been determined to be too dangerous to manage in a nursing home with professional caregivers.
• Families are advised that they will be “reported” to Adult Protective Services should they fail to come and get the patient.
• Families are told that they will be required to pay all hospital costs for additional days.
• Patients are placed far from home in rural facilities. Although care may be good, elderly spouses and working children are often limited in their ability to be present as advocates and comforters during this last passage.
• Hospitals may require a referring facility to accept the patient back, without regard for whether this placement will be able to meet the patients’ needs. Often these patients bounce back into the hospital for another round of tests and procedures and treatment and then referred on to yet another placement with yet another care team. Unfortunately, “these must accept for return at discharge” mandates can result in patients and staff being placed at risk.

 Late stage Alzheimer’s patients require specialized longer term post acute “skilled” or “transitional” care to provide a period of extended observation/ supervision and support, and intensive medical and behavioral management. Physical, Occupational and Speech therapies would be provided with emphasis on outcomes related to more stable and safe mood and behavior.

 Ultimately, the care team would be tasked with the creation and implementation of effective management strategies and comfort measures for the patient. Some patients will eventually cease behaviors with proper diagnosis, medical treatment and behavior management. Behaviors will also decline as the disease progresses and energy, strength and mobility decline. These patients are in the dying process.

 The level of care must be a hybrid combining the best of well-crafted skilled care and residential hospice care, relevant to these patients’ unique and complex physical, emotional, and spiritual needs.

 In our next post, we will share how you can get involved in supporting THE CARE!

 

• To provide a safe environment, evaluation and stabilization of the problem behavior. In dealing with the behavioral disturbances in those with advanced Alzheimer’s, the first task is to identify and address all possible physical and environmental causes for the behavior. Urinary tract infections, fecal impactions, unmanaged pain, and adverse reactions to medications are just a few of the many, many possible culprits responsible for serious behavior problems.
• A hospital stay of no less than 72 hours is required for any person wishing to qualify for admission to the skilled care unit of a nursing home. Skilled care has become the primary route for nursing home admission.

  
While excellent psychiatric care for elders is available in several of our community’s hospitals, the patient length of stay on these special units is financially, rather than clinically driven. The Medicare payment for such a stay is provided at a flat rate based upon the diagnosis. Reimbursement is the same no matter how long the patient is hospitalized. Medicare “Advantage” Plan companies are no better, applying unrelenting pressure to discharge their “members” to a lower level of care. On these units sustainability-forget profitability is a matter of keeping beds full and lengths of stays as short as possible. The mandate for short lengths of stay exists in spite of the clinical wisdom that guides the medication management of the elderly to “start out low, and go slow.” 
Precipitous discharges create major challenges with finding placement.  Long-term care facilities are often unwilling to accept these behavioral patients with only a brief history of more stable behavior. They must respond to referrals that they are “Unable to meet [the patient’s] needs.” For families, discharge planners, and healthcare providers, there is great frustration with the reluctance of nursing homes to accept these “problem patients.” 
 It is tempting to believe that these facilities simply do not wish to be burdened—and don’t have to be burdened with more difficult to care for residents. With the shortage of long-term care beds there is absolutely no incentive to bring these unpredictable and potentially dangerous patients into their communities. Late stage Alzheimer’s patients with a history of aggression and other dangerous behaviors require a special, secure environment, calming –not stupefying – medications, and excellent behavior management to safely support all possible quality of life. These traditional nursing home facilities truly cannot meet those needs. 
 Even when there is bed availability patients with significant dementia are often short changed by the Medicare system when it comes to their skilled care benefits. Medicare provides a period of up to one hundred days of skilled care per episode of illness to insured elders with broken hips, new knees, and crippling strokes. In fact, in order to be eligible for skilled care, patients must be able to participate in and benefit measurably from physical, occupational and speech therapies. 
 Pervasive confusion, amotivation and poor cooperation render many Alzheimer’s patients inappropriate candidates for traditional skilled care and rehab following their hospitalizations. 
And yet, a period of skilled care following a minimum of three days in the hospital is required for entry into most nursing homes. 
 

There has been a great deal of emphasis on finding a cure for Alzheimer’s disease. However, The Cure –should it be found – will certainly take place some time faraway in The Future. Right this very minute there are families, hospitals and long-term care settings throughout our community struggling to meet the unique needs of those in the late stages of the illness.

They are most vulnerable to behavioral problems ranging from agitation and aggression to withdrawal and failure to thrive. These conditions render them a threat to themselves and to their caregivers. In the institutional setting, they pose a threat to other frail, vulnerable residents and to their professional caregivers.

Sometimes, a “cause” is recognized and resolved, and a portion of these patients will return to baseline. Unfortunately, “baseline” is a moving target in an unpredictable and progressive disease process.

Most typically, these patients are in the end stages of the illness. Damage to the brain is extensive, and functioning profoundly and irretrievably impaired. There is no potential for restoration here. Palliative or hospice care, read: aggressive comfort care is the clinical imperative.

 And the moral imperative of an informed and compassionate Society.

Good News- Bad News?

Increased life expectancy meets age related decline…

 These numbers seem to be everywhere these days:

Beginning this year, boomers will turn 65 at a rate of more than 10,000 per day.  As they age, one in eight will develop Alzheimer’s.  At 85, one in two elders will be affected. [Alzheimer’s Association]

 It is doubtful that a Cure will arrive in time to make any difference to those of us presently cresting into later life. The albeit essential campaign for a future Cure is also meager solace to those of us now providing Care for parents, spouses, and friends. Right here, right now we are failing our late stage Alzheimer’s patients who deserve effective palliative and hospice care. We are failing the responsibility-the obligation to do what’s right for victims of a devastating, terminal illness: assuring emotional and physical safety and comfort at the end of life.

 We hope you’ll join us for Part 2 in this series, when we discuss some of the issues facing patients in the late stages of Alzheimer’s disease.

Most people have heard the admonitions regarding end of life planning: Let your wishes be known! Not surprisingly, we tend to avoid the nitty-gritty of our mortality and that of family members’…hoping perhaps that we will all be among those who go quietly while watching cable. Should you have some level of control and choice about your death and the time immediately preceding, what care would you like to have?

When we review the advanced directives list of “choices” it seems natural to want cardiopulmonary resuscitation (CPR), fluids, and food-preferably chocolate. However, for elders with complex health conditions including late stage dementia, the consequences of these measures are not necessarily compatible with long term survival, or a peaceful and pain-free death.

Myths and misinformation regarding end of life care abound. Consider the DNR (Do Not Resuscitate) order. CPR was developed to rescue individuals experiencing sudden unexpected cardiac arrest due to a heart attack, drug overdose, hypothermia, drowning accident, or other reversible condition. However, bone crushing chest compressions, cardioversion and intubation are all part of the process now widely used to treat arrests in people with severe underlying illnesses and poor overall likelihood of survival. In the majority of cases, studies show that CPR is not the happily-ever-after success usually portrayed on the medical shows on television.

On one level this is a no-brainer, it’s television, right? However, in the absence of opposing imagery and narrative, we tend to go with what we “know.” One study reviewing 97 episodes of the television shows “ER,” “Chicago Hope,” and “Rescue 911”  in which CPR was depicted revealed that 75% of persons survived the immediate arrest and that 67% survived to hospital discharge,  However, a review of actual outcomes is reported in a Canadian study by Titlayo, et al published in Clinical Geriatrics .They found that of  247 hospitalized patients who experienced cardiac arrest and underwent CPR only 22.4% of those with witnessed arrests survived to hospital discharge, and only 1% of those with unwitnessed arrests survived CPR to hospital discharge.

Similar outcomes are described in many other studies, revealing the actual consequences of a “Full Code” for elders with severe illnesses. And yet, to proclaim “DNR” somehow seems like giving up. Charlie Sabatino, of the American Bar Association Commission on Law and Aging notes “The message behind the term ‘do not resuscitate’ is predominantly negative, suggesting an absence of treatment and care. The reality is that comfort care and palliative care are affirmative and, for these patients, more appropriate interventions.”  Maybe it is time for a new set of initials on the chart such as “MMC” for Make Me Comfy!” In the United Kingdom and some other countries the initials “AND” for “Allow Natural Death” are used, and do indeed convey a more positive and affirming stance regarding end of life care.

When patients with end-stage Alzheimer’s disease stop eating or experience significant difficulty swallowing, enteral (tube) feeding is inevitably considered. An extensive review of existing literature by Finucane and associates published in the Journal of the American Medical Association concluded that there was no evidence that tube feeding among these patients prevents aspiration pneumonia, prolongs life, reduces incidence of pressure sores or infections, improves function, or provides palliation.

Another end of life care challenge is the hospitalization of late stage Alzheimer’s nursing home patients.  A study in the New England Journal of Medicine Sept. 29, 2011, edition reports that nearly one in five nursing home residents with advanced dementia experiences burdensome transitions in the last 90 days of life, such as moving to a different facility in the last three days of life or repeat hospitalizations for expected complications of dementia in the last 90 days of life.

Study co-author Joan Teno notes that “Such patterns of transitions are burdensome, particularly since the overwhelming majority of family members state the main goal of care is comfort.” The transitions are burdensome because they raise the risk of medical errors and interrupt continuity of care for patients who often experience significant distress when they are suddenly removed from their familiar surroundings and caregivers.

While some hospitalizations are unavoidable, many are unnecessary, and reflect the inefficiency of our health care system, according to Dr. Teno. Conditions such as pneumonia, urinary tract infection, dehydration, and others could effectively be treated in a properly equipped and staffed nursing home.

Unfortunately, burdensome transitions may be driven by the way Medicare pays nursing homes for patients who have been transferred to a hospital for at least three days and then qualify for skilled nursing services paid by Medicare rather than Medicaid upon their return. Also of interest is the finding that different areas of the country had varying rates of these burdensome transitions. In Alaska, the percentage of patients experiencing at least one burdensome transition was just 2 percent, while in Louisiana it was 37.5 percent, the investigators found. What’s more, areas with those higher rates of burdensome transitions had higher rates of poorer outcomes.

The notion that “just because you can doesn’t mean you should” rings true in today’s healthcare arena. As we seek to identify best practices, based upon sound evidence to manage end of life care for elders with late stage dementia, it becomes increasingly clear that we have much to learn. There are currently more than 1.8 million Americans with end-stage dementia, characterized by the person’s inability to recognize friends or family members, lack of communication skills, and dependence with activities of daily living such as dressing, and bathing. This number will swell as baby boomers crest into the terminal phase of Alzheimer’s disease.

When Alzheimer’s patients become unable to speak for themselves their families agonize about doing the right things in the moment, and long after. Specialists in palliative care and bioethics are now a part of every hospital’s clinical team, and may be included to help families and physicians make informed, appropriate care decisions for patients with advanced dementia. It is first and foremost important to ask the care team “What is the GOAL of care?”

In spite of the math, foretelling a community densely populated with families struggling to care for loved ones, ours –and most communities are entirely unprepared for the challenge. A most appropriate and caring solution, a residential Alzheimer’s Hospice, has yet to evolve in spite of ample need. Such a resource could provide immeasurable benefit for east Tennesseans taking part in the long, arduous and lonely Alzheimer’s journey. In the meantime, elders and their families should take advantage of the Medicare benefit that provides for a thoughtful, informed discussion with your physician regarding end of life care for you and yours. 

Excellent books available in our library:

• Hard Choices for Loving People by Hank Dunn
• Caregiver’s Path to Compassionate Decision Making: Making Choices for Those Who Can’t    by Viki Kind, MA

Join your Life Care Team for this special holiday presentation on

Thursday, November 17, 2011
4:00-5:00 PM
4931 Homberg Drive
RSVP 865-588-3700