Sent from somewhere to my soul
How they linger, ever near me
And the sacred past unfolds.
J.B.F. Wright 1925
This time of year inspires its own unique reverie, brought on by a subtle but unmistakable change in the light heralding summer’s end. There’s a mix of melancholy and anticipation which creeps into the psyche, as the child in each of us stirs. I personally believe The School Calendar is irretrievably encoded at some deep molecular level in our DNA, and that the collective unconscious is home to that mysterious urge to buy a new outfit, or big red pencils in a pretty box each August.
With the first early morning sighting of a blinking yellow light chiding us to pay attention, we realize where that little ache was coming from: it’s back to school time! And with a sigh, a chuckle or perhaps a shudder we recall some of our own “first days.”
The memories that most readily come to mind tend to be The Best and The Worst. Happily, in the sweet light of retrospection, the Best get better, and so the do the Worst! We have become more tolerant, more compassionate, and more appreciative with the passage of time. Those “I do know now what I didn’t know then” insights enable us to reframe the unhappy into character building experiences, or simply to shrug and feel relief that those times are done, and that we survived and yes, even thrived.
Such reminiscing is not “living in the past.” Mostly, our memories provide a safe network of trails to past triumphs and traumas. Those reflections supply important opportunities to integrate experiences, celebrate strengths and successes, reconcile conflicts and ultimately to feel okay about things, past and present. Talking therapies have long focused on using insights from the past to better manage the present through reminiscing. In that forum, “letting go” of a troubling, or otherwise dysfunctional past may be the ultimate goal. Equally as important as working through life’s bad stuff is celebrating the good.
For older adults, and especially those with dementia, reminiscing is a powerful tool for making connections with others, for supporting self esteem, and a sense of self- “ego integrity.” Sometimes it is the only tool. No matter that the time or the tale is fleeting. There is still great benefit to participants when stories are heard and valued.
Sight, hearing, smell, taste and touch provide countless ways to reach out to cognitively impaired elders in a manner that honors them and supports their dignity and wholeness. Sharing photographs, music, special foods, and so many more activities help to access important past life experiences. I ran across a study recently that found that reminiscing about shared laughter increased relationship satisfaction! [Bazzini et al; 2007] This research fully supports my firm belief that we should all reminisce about more funny stuff! The study was actually focused on romantic couples, but I think the findings are entirely generalize-able.
Reminiscing is as easy as saying “Tell me about…” We like to tell our stories. We need to tell our stories. It is important for us to tell our stories. Our journeys to wholeness are found in our stories, including our many “first days.”
Someone with dementia may only give you a small piece of themselves — all there is, and enough, at that moment. That small piece is precious and may become a strand or thread woven into your life as well. The fragments may, like the creation of a mosaic, gradually be pieced together and something new is created. (Coaten, 2001, p 21)
Speaking as one steeped in the challenges of everything Alzheimer’s I am excited about our upcoming program, and hopeful that it will be well attended. Is that about raising plenty money for Alzheimer’s Tennessee to improve care for patients? Well, yes, it is. But first and foremost I believe the material we plan to share will help Alzheimer’s patients, their families and professionals providing care and guidance in the field.
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!
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:
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.
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!
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:
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!
Part 1 in this series introduced you to the need for increased focus on options for effective palliative and hospice care for patients in late stages of Alzheimer’s disease. Today, we’ll review some of the issues that relate to this need.
Some of the issues:
In late stage Alzheimer’s disease behavioral problems are common and often herald the move to a higher level of care. Not surprisingly, these patients are also experiencing a declining ability to communicate, increasing incontinence episodes and overall greater dependence with most if not all other activities of daily living. They are falling more frequently or have stopped walking altogether. Eating difficulties and weight loss are often part of the clinical picture.
On average, 40 percent of a person’s years with Alzheimer’s are spent in this, the most severe stage of the disease — longer than any other stage, according to Generation Alzheimer’s: The Defining Disease of the Boomer Generation, the Alzheimer’s Association’s recent publication. This important report also notes that by age 80, 4 percent of Americans enter a nursing home. However, for people with Alzheimer’s, 75 percent end up in a nursing home by age 80. Unfortunately, the nursing home design and care models in our community are incompatible with the needs of our late stage Alzheimer’s patients. And yet, these same nursing homes are the only resource available for most families. Where financial resources are available some later stage patients may be effectively cared for in assisted living.
At home, in assisted living or nursing home, these patients often endure inadequate pain, mood and behavioral management. Unable to advocate for themselves they may be subjected to multiple hospitalizations, unnecessary procedures, and inappropriate treatment that prolongs suffering, destroys dignity, and demoralizes families.
And none of this is happening because folks aren’t trying to do what’s right…
Addressing significant behavioral problems present for those in the later stages of Alzheimer’s disease typically begins with hospital admission for several reasons:
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.
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.
How come we seldom seem to achieve the goals we set for ourselves? Join your Life Care Team for a very special program on setting “SMART” goals for the New Year!
THURSDAY- DECEMBER 15, 2011-3:30-4:30
44931 Homberg Drive