Alzheimer’s:
Coping With Care Giving
Jacqueline Marcell was living a nightmare.
Her once adoring father had turned into a maniac,
launching sporadically into volatile mood swings that resulted in
anything from hurtful
name-calling to violent attacks. Scared and confused by his actions,
she took him to various doctors to have him tested and observed.
Each time, he put on his best behavior and was able to score within
the normal range. However, when they would return home from the
appointments, Jekyll would turn back into Hyde, and soon Marcell
was again living in fear for the safety of her mother and herself.
This cycle was repeated countless times over the course of one
year—a long,
emotionally-taxing span during which she lost her home, hours of sleep, and at
times, nearly her sanity.
It wasn’t until her father was finally diagnosed with Alzheimer’s
disease (AD) that Marcell, a former television producer, was able to start piecing
her life back together. Doctors prescribed medications to slow down the progression
of dementia and manage her father’s aggression; with his mood swings under
control, Marcell was able to find a caregiver for her parents who wouldn’t
quit after a few hours.
However, Marcell wasn’t quite ready to return to her old life. Enduring
such an agonizing experience—during which she was misled by medical professionals,
abused by her father, and cleaned out financially—had changed her forever.
So, despite the fact that she lacked any professional writing experience whatsoever,
she decided to put her ordeal into words, and the result is a “combination
nonfiction novel and self-help book” called Elder Rage (www.elderrage.com)
that has touched a nerve nationwide.
A survival guide for those who care for the estimated
4.5 million people with AD, Elder Rage is described by Marcell as
a “fun read” that offers “solutions,
hope, and humor” through personal accounts, behavior modification guidelines,
advice, useful information about AD itself as well as a section entitled “Physician’s
Guide to Treating Aggression in Dementia” that is required reading
in several universities.
The exasperation felt and lessons learned both
by Marcell and the caregiver she eventually hired to look after both
of her parents are expressed in anecdotes
that put a light-hearted and even amusing spin on the often difficult and
thankless task of caring for a loved one with a serious and chronic condition;
as Marcell
points out, sometimes humor is the best way to reach and touch people.
“Once people read my stories, they realize that they don’t have it
so bad,” she said of her publication, a Book of the Month Club selection
that has been endorsed by countless associations, news organizations, political
officials, medical establishments like the Johns Hopkins Memory Clinic, and celebrities
Ed McMahon and Regis Philbin.
“People love it because it reads like a novel. They get so into the characters
that they don’t even notice the nuggets of wisdom that are woven in there,” said
Marcell. Peppered with references to television characters and theme songs recognizable
to Baby Boomers, the book is directed not just at those who are currently caring
for ailing parents, but also to those who might one day go through a similar
ordeal. This way, said Marcell, they can use the book as a reference, and hopefully
they will be able to anticipate the experiences that took her by surprise.
“I was misdirected for a whole year,” recalled Marcell. “But
then I thought, if this can happen to me, it must be happening to everyone. There
must be other horrendous experiences out there. If I can get people to read this
before their parents get older, I’ll have accomplished what I set out to
do. This way, when they get there, they’ll know what to do.”
Marcell can laugh now about some of the trials
she endured, but before she knew that there would be a light at the
end of the tunnel, the
only laughing
she did
was when she caught a glance of her medical bills. If her father’s condition
had been diagnosed earlier, not only could she have saved a great deal of money,
she said, but his cognitive function most likely would have faded at a slower
rate.
According to the Alzheimer’s Association, diagnosing
AD at
its onset can grant families more time to plan for the future and
make choices that maximize quality of life, lessen anxieties about
unknown problems, and most importantly, grant the patient “a
better chance of benefiting from treatment.”
An article in
AARP Bulletin Online reports that “brain cells are more sensitive to cholinergic
drugs in early, mild cases” of AD, allowing drugs like donepezil
(Aricept) to improve thinking and reasoning abilities in patients,
and delay by 21 months the average period between the initial diagnosis
and the time the patient enters a nursing home. “By understanding
lapses in the individual’s thinking and behavior, families
can take steps to keep the individual safe and functioning as long
as possible,” the article reports. This enables patients with
AD to participate in decisions about treatments, living arrangements,
and financial and legal issues.
“If you can delay the progression of AD, you can extend Stage One by 2-4
years,” said Marcell, who in addition to her book also hosts a radio show
focusing on Alzheimer’s disease issues and is a speaker and advocate for
the cause. “It is imperative that families get started early.”
The problem, however, is that many people ignore the symptoms for the first
few years, attributing memory lapses, confusion, and even aggressive behavior
to old age. Although a decline in recollection ability can be a normal part
of aging, according to the Fisher Center for Alzheimer’s Research Foundation,
there are specific signs that may indicate the onset of AD. Mild symptoms include
confusion and memory loss, disorientation, problems with routine tasks, and
changes in personality and judgment. Some of the more moderate symptoms include
difficulty with activities of daily living like eating and bathing, anxiety,
suspiciousness, agitation, sleep disturbances, wandering, and difficulty
recognizing family and friends; severe symptoms include loss of speech, appetite,
weight,
and bladder and bowel control, and a total dependence on caregivers.
”
Finding out that a loved one has Alzheimer’s disease can be
stressful, frightening, and overwhelming,” according to the
Alzheimer’s Disease Education and Referral Center (ADEAR).
However, it is crucial to begin assessing the situation as soon as
possible, in order to assure that the best possible options are explored
for everyone involved. ADEAR advises those dealing with
the diagnosis of a loved one to follow five steps designed to make
the entire process
easier for both the patient and his or her family:
- Educate yourself about AD and the treatment methods available.
- Contact organizations for information about caregiving resources
(some community groups may offer classes to teach caregiving,
problem-solving, and management skills).
- Find a support group.
- Research adult day care and respite service,
options that can ease the day-to-day demands of caregiving.
- Plan
for the future by assessing your financial situation and investigating
long-term care options.
First and foremost, patients and their loved ones
need to reach an understanding of this very puzzling and complex
disease.
Fortunately, a great deal of reliable, useful information
on AD is available
via
the Internet. We’ve assembled some of the top
AD-related sites in our resource center (end of article),
where Internet users will find
links to sites that feature facts about AD, advice
and tips for family members, a glossary of terms, financial
planning advice,
contact
information for support groups, information for advocates,
and more.
The short explanation is that AD is “a neurological
condition in which the nerve cells in the brain die.” The
Alzheimer’s
Association notes that AD progresses at varying rates—usually lingering
for three to 20 years—and strikes first at the areas of the brain that
control memory and thinking skills. As the disease advances, cells in other
regions of the brain die, causing the patient to eventually require complete
care. If he or she doesn’t develop any other serious illnesses, the
loss of brain function itself will ultimately lead to death.
Because the patient’s abilities to reason and think clearly are so greatly
affected, it is crucial that she or he have someone who can offer care at all
times, especially in the later stages of AD. The difficult part comes in determining
whether the best method is seeking outside help, moving the patient into assisted
living, or having a family member stay with the patient. In order to facilitate
this process, FCA has devised a list of questions that all patients with AD
and their loved ones should consult before making a decision. Posted on the
FCA site, the list includes such questions as “How much are we willing
to spend for paid care?” “Who in the family will take charge of
caregiving?” “Can we get used to having a stranger in our home
to help us?” and for those who do want out-of-home care provided, “What
kind? How often? And [for] how long?” (www.caregiver.org).
The first consideration that should be addressed is the often exorbitant
cost of care. The Alzheimer’s Family Relief Program (AFRP)
estimates the cost of caring for a patient with AD in the home
at $18,000–$20,000 per year, most of which is paid out of
pocket. The cost for nursing home care ranges anywhere from $35,900
to $166,700, with an average of nearly $57,000 (www.ahaf.org/afrp/afrp.htm).
And here’s the most alarming financial statistic: the average lifetime
cost of care for an individual with AD is $174,000 (www.alz.org/AboutAD/Statistics.asp).
This is particularly disturbing because, according to information compiled
by AFRP, “many Alzheimer’s-affected families have little recourse
for obtaining competent care other than to provide it themselves. Most of the
care of an Alzheimer’s patient is considered custodial care, and insurance
policies typically do not cover it.” Established by the American Health
Assistance Foundation (AHAF), AFRP provides direct financial assistance for
the continued care and support of patients with AD and their caregivers,
awarding grants totaling more than $1.9 million to patients and caregivers
in 49 states
since 1988.
For those who don’t qualify for an AFRP grant, there are five basic methods
of covering the steep costs of medical care: private payment, social security,
Medicare, Medicaid, and veterans benefits plans. Private
payment – This plan is exercised when the patient
and/or family members have the resources to pay for long-term care.
It is recommended that those who participate in private payment plans
consult an estate planner and/or elder law attorney for a consultation
in order to protect their interests, as long-term care can quickly
deplete a family’s funds. Private planners should also consult
tax attorneys, as some states offer tax credits for long-term care
insurance.
Social Security – All
caretakers should be aware of Supplemental Security Income (SSI) and
Social Security Disability Insurance. The latter “pays
benefits to you and certain members of your family if you are ‘insured,’ meaning
that you worked long enough and paid Social Security taxes.” SSI, on
the other hand, was created to provide funds to low-income, elderly, handicapped,
and disabled people to aid in the purchase of food, clothing, and shelter
(www.ssa.gov/disability).
For more information about these programs, visit Social
Security Online. Medicare – Billed
as a “health insurance supplement for older adults,” this
product of the US government offers limited coverage of services such as
nursing home and home-care benefits, hospital insurance, inpatient hospital
care, hospice
care, and medical insurance for patients who meet the necessary eligibility
criteria (www.ec-online.net). Most
long-term care plans, however, are not covered under the umbrella of Medicare.
For more information about the various Medicare programs, visit www.medicare.gov.
Medicaid – A state and federally funded medical assistance program for
people with minimal funds, Medicaid varies from state to state in eligibility
requirements. For information on the coverage standards for your area, visit
www.cms.hhs.gov/medicaid.
Veterans Benefits – Individuals who qualify as veterans are entitled
to various federal, and in some cases, state benefits, in addition to the separate
set of benefits given to the retired military. In some cases, spouses and dependents
of veterans and retired military are eligible for certain benefits. For more
information, refer to the Department of Veterans Affairs website at www.va.gov.
Despite the availability of several different programs designed to
ease the exorbitant costs involved in obtaining hired care for
patients with AD, many families still face considerable financial
and emotional burdens, prompting many spouses, children, and other
relatives to care for these patients themselves. According to the
FCA, more than seven out of 10 people with AD live at home, where
almost 75% of their care is provided by family and friends (www.caregiver.org/caregiver).
Tending to the needs of a person with AD, however,
is a very difficult task that “can become overwhelming at times,” according
to the Alzheimer’s
Association. “Each day brings new challenges as the caregiver copes with
changing levels of ability and new patterns of behavior. One of the biggest
struggles caregivers face is dealing with difficult behaviors often exhibited
by the loved one with AD. Dressing, bathing, [and] eating—basic activities
of daily living—often become difficult to manage for both the person
with AD and the caregiver” (www.alzheimers.org).
To help alleviate some of the stress that accompanies
the job of the caregiver, ADEAR has compiled a list of guidelines and
suggestions caregivers can use
when developing a plan
of care. Included are tips on how to improve communication,
simplify activities such as bathing, dressing, eating, and exercise, and
alleviate problems associated with sleep, incontinence, home safety,
driving, doctor
appointments, holiday visits, hallucinations and delusions, and selecting
a nursing home.
When it comes to planning daily activities, the Alzheimer’s
Association offers a list
of guidelines that caregivers can use to make
sure the activity
is appropriate for patients.
Before initiating an activity, starting a project, or embarking on a trip
with the patient, ask yourself the following questions: • Will it bring meaning, purpose, joy, and hope to the person’s
life?
• Will it use the retained skills and abilities of the person with
dementia?
•
Will it help normalize the person’s life?
• Does it involve family and friends?
• Is it dignified and appropriate for adults?
• Is it enjoyable?
• Is the process more important than the final product?
An activity should ideally build on the
patient’s existing
skills and talents, and when possible, it should relate to his or
her work life. For example, someone who worked as a farmer or gardener
might enjoy working in the yard, whereas a former business person
might respond well to tasks like putting coins in a holder, assembling
mailings, or maintaining “to-do” lists. The most important
aspect of the activity, according to the Alzheimer’s Association,
is that it focuses on enjoyment, not achievement. Finally, take into
consideration the environment by making sure the activity doesn’t
involve dangerous tools or instruments, and minimize distractions
by turning off the television or turning down music.
Even if caregivers follow every single suggestion offered, they are still going
to experience stress, according to the Fisher Center. “Changes in a
loved one’s personality, the need to provide constant, loving attention
for years on end, and the physical demands of bathing, dressing and other
caregiving duties are major reasons for caregiver exhaustion and depression
and for placing persons with Alzheimer's in nursing homes” (www.alzinfo.org/treatment/familysupport).
The Fisher Center also reports that caregivers
who are under chronic stress may develop a diminished immune response,
which can cause them to heal more
slowly after injuries and make them more susceptible to common infections
such as the flu or common cold. “To combat this, caregivers
need to learn how to manage stress and find ways to relieve the tremendous
burden of constant
care for a loved one.” On its helpful resource page entitled, “Taking
Care of You: Self-Care for Family Caregivers,” the FCA advises caregivers
to get proper rest and nutrition, exercise regularly, take time off without
feeling guilty,
participate in pleasant, nurturing activities, seek and accept the support
of others, seek
supportive counseling, identify and acknowledge feelings, view situations
in a positive light, and set realistic goals. For more specific information,
visit
the site at www.caregiver.org.
The most important advice anyone can give a caregiver,
however, is to become educated. As so many Americans now know, AD
is a devastating disease that
can rob a person of his or her mind and personality and turn a family relationship
that was once loving into one characterized by pain, anger, and stress.
However, when caregivers are armed with education about the disease,
its effects,
and
the available treatment options and management strategies, caring for someone
with AD can feel more like the selfless, loving experience it is meant
to be, and less like an ordeal. Related
Resources
Tighe
Blazier guests on "Coping with Caregiving."
|
Listen to Tighe Blazier’s
guest spot on Jacqueline Marcell’s Internet radio program “Coping
with Caregiving,” which aired on Saturday, July
10. To hear the interview, click
here. For more information about Jacqueline, author of “Elder
Rage,” go to http://www.elderrage.com.
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