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Although
the Media has finally discovered Alzheimer's Disease as a subject worthy of
exploration, how they traditionally represent this illness leaves a great deal
to be desired.
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The thrust is about institutionalizing our
people .
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There is
a general lack of information about the illness and so symptoms are
misrepresented .
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There is yet
to exist a program that portrays home care as a viable or preferred way to care
for our people.
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The public gets a very skewed version of this disease, one
that probably pleases the nursing home industry but one that does very little
for those of us who strive to keep our people home.
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The universal message is that
home care can't be done.........when it is in fact doable and for a large
percentage of us, the preferred choice.
For
the most part the media, and by media, I mean every avenue of information
available to the public that functions as a reporting venue, has consistently
portrayed this disease on a level that does not reflect the actual symptoms of
the disease or the reality of the caregiving that is being done.
Rarely,
if ever, is the Alzheimer’s person ever portrayed as having any worth.
The focus is always on how difficult it is for the caregiver and never is the
basic humanity of the person with the disease ever raised. People with this
disease are always spoken of as having lost their dignity, as being a burden, as
their care being a needless sacrifice, because to lose your cognitive function
is to lose your worth as a human being in this society. Our people become "Something
to take care of," instead of "Someone to care
about."
As
a result, those of us who care at home for our people are treated as if we are
candidates for a psychiatric classification because we continue in spite of the
fact that they can’t identify us properly. After all, how can it matter where
or who does the care to someone with this disease when they don’t even know
where they are or who their caregivers are? And when they die the caregiver isn’t
given their due even then. We aren’t even allowed to grieve. Instead we are
expected to get on with our lives because the ‘burden’ is finally
over.
These
negative attitudes about this particular disease and the people who get it,
permeate every aspect of society from those who are mandated to help those of us
dealing with this illness to strangers in the parking lot of the local
supermarket. Everyone has
something to say about the care of our people. This is nothing less
than bias, a bias so accepted it isn’t even recognized as bias and it affects
how our people feel about themselves and it affects the moral of their
caregivers. As examples of the prevailing attitudes and how they are translated
by the media, I offer the following:
TALK
SHOWS
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I
haven’t seen one network talk show on Alzheimer’s Disease, in the last
10 years that ever had a late-stage home caregiver on the panel of
caregivers. The panel members were people who already had their family
members in nursing homes or people who would be sending their family
member to a nursing home. This is not reflective of the true picture of
the caregiving that is being done and it sends a faulty message to those
watching these programs. The message is that all Alzheimer’s people are
eventually placed in institutions which simply isn’t true. Those of us
facing home care needs are literally left out in the cold to fend for
ourselves. Home care continues to be the best-kept secret in the country.
The Alzheimer’s Association states that over 75% of the care is done in
the home. Home-caregivers face different issues than caregivers who have
opted for the nursing home choice. The home care issues aren’t even
raised, let alone represented.
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I
have yet to hear home-care even offered as an option in care, or the
problems inherent in finding adequate home-care services discussed on any
television show. There are millions of viewers facing this illness and
millions who will be facing the illness, and yet they aren’t even being
made aware that over 75% of the care is being done at home. Its no wonder we
home-caregivers feel isolated. We don’t even get the feed back that
home-care is even being done. That does little to bring the plight of the
millions still dealing with the care at home to the attention of those
serving this population.
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All
the talk about the cost of late stage care has traditionally centered about
the cost of nursing home care. In fact, when long-term care costs are
mentioned the general assumption is that the reference is to nursing home
costs. And yet there is a growing industry of home-health care and day-care
that is going largely ignored, untapped, underdeveloped and unregulated.
While quality of care in nursing homes is an important issue in the seminars
and workshops I regularly attend, I have yet to hear the same issues
discussed with regards to the industry that services the home-care
population in any real depth.
And
when home-care is mentioned, too often, the example they give is someone
like Jay Rockefeller who’s family spent $300,000 a year to maintain his
mother in her home as the standard. The message here is just
another way of saying home-care can’t be done unless you’re a
Rockefeller. My costs were half of what a nursing home would have cost and I
paid for 30 hours a week for a home-health aide, and frankly I could have
survived with less hours. I was one of the millions who couldn’t afford
the nursing-home option.
TELEVISION
MOVIES
Television movies that have been made about this illness have ended in
nursing home placement as the only option, with the usual downward spiral of
doom and gloom focusing on loss of memory and the inability to recognize the
caregiver. The focus has always been one of justifying separation. There has
yet to be a movie made for television that speaks to the positive connection
that can exist between family and the family member with this illness and no
one in which the behaviors were dealt with positively and creatively. There
simply are no positive role models at all for families facing this disease.
This is not so for any other disease group portrayed on the little screen or
the big screen.
Do
You Remember Love, Joanne Woodward, Richard Kiley, 1985. Joanne
portrayed a professor who began exhibiting symptoms of dementia. The writers
were effective in showing the drama of her initial awareness of her deficits
and progresses into the mid-stages of the illness. The lead character was
placed in a nursing home at the end of the movie and I understand it is
based on a true story. Although the acting was wonderful, this movie set the
standard, the formula, if you will, for all movies about this disease that
would follow. Never are practical ways for the spouse and other family
members to deal with the problems given the message being that the ‘problems’
are always too difficult.
In
this particular case the ill spouse herself ‘made the choice’ to go into
a nursing home because she didn’t want to be a burden on her family.
Ah! That Permission Thing.
I
talk in more depth about ‘this permission thing,’ that everyone grasps
at, in my book. Tom gave me permission as well. At some point they all
give ‘permission.’ Our reality is that ...
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we
didn’t have the money even if I wanted to place him in the nursing home
without going bankrupt, and
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I
decided that he was better off in his own home, and,
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by
the time most people go into nursing home placement I realized I had
already been through the worst of it.
The
last stage of care was actually the easiest and the most rewarding in terms of
our relationship because all the behaviors were behind us. We were then able
to get back to the loving and caring and there were still moments to cling to
and treasure, moments I would have missed had he not been home.
The
reason most of us keep them home is because we ignore the ‘permission’
and do what we have to do in order to get ourselves through this
disease. We don’t see commitment, sacrifice, or unconditional love as bad
things and believe it or not, the majority of us come out of this illness
strengthened in ways that others simply cannot understand. This is an aspect
of care that has yet to be dramatized in any movie dealing with this
illness. There have been a number of television movies made about this
disease and I wouldn’t recommend any of them to anyone starting out on
this journey of care. However, there is a television movie that was made in
1991 that is about aging and this I do recommend.
Fire
in the Dark, Olympia Dukakis, Lindsay Wagner, 1991. This movie
follows the Dukakis character as she faces the death of her spouse and the
problems of living independently as an aging woman. We gradually see the
family dynamic unfold as one sibling is unable to take on the challenge of
the mother’s increasing needs and the other sibling, the daughter who
finds herself assuming more and more of the tasks. What is so unique about
this film is the accurate portrayal of the daughter’s initial reluctance,
her frustration at being divided between her own family and her mother’s
needs and her mother’s intense desire to remain independent. We are
allowed to see her transformation from daughter to caregiver and we get to
see this family make the journey with her, not without pitfalls but
ultimately with a degree of grace and an awakening to the concept of what
unconditional love is.
This
is both the dilemma and the goal of families facing Alzheimer’s. How do we
enter their space without demeaning them? How do we alter our lifestyle to
accommodate someone who can no longer do it on their own without losing
something ourselves? This movie shows the transitions with such awareness
and sensitivity that I feel it is a map for all families facing the chronic
needs of aging parents. There is one poignant moment when Ms. Dukakis, as
the mother, utters the following to her daughter: "You know, it isn’t
death that I fear, it’s what happens to me before I die that scares
me." I think that statement should be branded on the foreheads of
anyone who has the gall to speak of our people in less than human terms
because they have lost their cognitive abilities. The assumption is that our
people aren’t capable of feeling these fears when the reality is they feel
little else for as long as this disease permits them to feel. Instead of
being assured they will be loved in spite of what this illness does to them
they are subjected over and over to the belief that they are nothing but a
drain on society, a drain on their families, a drain period. Why censor what
you say in front of them when everyone knows they don’t know what’s
going on anyway? Is it possible to imagine the horror they feel?
This is a movie about living the human drama instead of
running away from it. I highly recommend it.
THEATER
MOVIES
There
have been some positive theater movies about caring for the elderly, but not
one on Alzheimer’s Disease that hasn’t used euthanasia as a solution for
the long-term care needs of the Alzheimer’s character.
"Folks,"
Tom Selleck, Don Ameche, Anne Jackson, 1992. The Don Ameche character had
Alzheimer’s and spent most of the film trying to commit suicide in order
to not be a burden to his family. The family spent many slapstick moments
helping him achieve this goal. A real madcap group of self-centered cartoon
characters that reflected no caregiver and no person with Alzheimer’s
Disease that I ever met. The Alzheimer’s character remained charmingly
cute through the end of the movie. Apparently, standing in a closet with a
dumb look on the face was considered high comedy by the writers. In the end
this character was kept home but again, the portrayal was of a cute but
ditzy person who’s behavior had little to do with this disease. If this
disease was that cute there wouldn’t’ be any need for nursing homes. We’d
all be able to keep them home. They’d be no trouble. It is of interest
that Leonard Maltin’s review of this film had the following quote: "…blame
this one on the writer and the director."
"DAD,"
Jack Lemmon, Ted Dansen, 1989 showed the growth of a caregiver as Mr. Lemmon’s
character succumbed to the effects of his illness and growing ancillary
confusion. This was a movie about relationships and the development of a
caregiver in warm glowing terms. It was not a movie about Alzheimer’s
Disease. However, the fears this man felt and his response to the
acceptance of his son of his disability is not unlike the process that
happens to our caregivers. For that reason I recommend this movie.
"Nothing In Common,"
Jackie Gleason, Tom Hanks, Eva
Marie Saint, 1986. A film about relationships and the development of a
caregiver. The Gleason character does not have Alzheimer’s, but he
does have a wounded relationship with his son and a critical illness. The
movie centers about the changes that occur as the son steps in to take over
his father’s care. While we are dealing with someone who still has their
cognitive abilities in this movie, the process for caregivers facing
Alzheimer’s care is not that different. The bond that develops for
Alzheimer's caregivers follows much the same course as the one that develops
in this movie. If nothing else it is as least a positive role model that
doesn’t denigrate concepts such as obligation, sacrifice, unconditional
love and all those other stalwart ideals that have fallen into disrepute in
recent decades. In today’s world, to be a caregiver of someone with
Alzheimer’s is to be: co-dependent, unrealistic, a martyr, controlling,
symbiotic, or a saint, none of which reflects the true act of giving care
which is more about unconditional love and less about a psychiatric
classification.
"Iris,"
As
sensitive and as well written and acted as this production was, even this
woman was institutionalized in the end.
TELEVISION
DRAMA
Television
drama, for the most part, portrays our people as better off dead. They
either blow them away, put them in nursing homes or have them commit suicide
because ‘they’ would never want to live ‘that way.’ Never have they
offered the public the opportunity to see these people cared for, lovingly,
at home with the real issues of care and connection explored. Apparently the
writers of these programs subscribe to the ‘They’re better off dead’
approach to long-term care for persons with Alzheimer’s disease. And why?
Can it be that they don’t see any value in those who can’t speak for
themselves? I think its because they have no idea what this disease is about
and they are too lazy to find out. And besides, killing them off boosts
ratings.
"L.
A. Law,’ had a character who exhibited an uncontrollable urge
to dress up like Ralph Kramden spouting verbatim dialogue from the ‘Honeymooner’s’
when his "Alzheimer’s kicked in." He ended up in a nursing home
and died a death that conveniently terminated his character and tied up the
story line, but which had no relationship to Alzheimer’s.
Picket
Fences,’ and
‘Sisters,’
both blew their
character away and then had a trial justifying the homicides. In both of
these dramas the writers spoke about the loss of dignity and how painful it
was for their family member to watch them deteriorate. I wonder, is it
easier for a family to watch a child die of leukemia, a subject that is
always treated with respect and empathy? And there is the fact that
euthanasia isn’t really an option in the real world of caregiving. The
final episode using this character had their mayor, Howard, running around
in an American Indian costume, wearing an adult diaper in place of the
requisite ‘loincloth,’ blithely reminding the cast they he was now
incontinent. He then excused himself in order to change is own diaper. Seems
to me they got to insult two groups on that one.
‘Sisters,’
had real potential
until the Alzheimer’s character was given an overdose of sleeping pills. I
actually thought for a moment that this character was going to make it
through to the end of the disease. The care techniques were in place, the
writers had done some research into the disease, the acting was superb, and
then it was over with the requisite trial exonerating euthanasia. To go so
far and then miss the opportunity to share in this character’s dying in
his own home with a sense of completion with the other characters in the
story line was a real shame.
"Any
Day Now," had their character commit suicide. Keep in mind this
character was so confused she had her bowel movement in bed, a scene most
graphically portrayed for the audience. She couldn’t recognize the need to
relive herself, but, she was able to figure out a plan and follow it
through. This involved finding paper and pen, writing a letter of good bye
waxing profoundly to her granddaughter with no apparent problems with
spelling or syntax. She then somehow got downstairs without help, (She was
unable to walk without assistance) find her gun, load her gun and aim her
gun. I’m sorry, but Alzheimer’s just doesn’t work that way. And of
course the cast spent the remaining minutes of the episode talking about how
Grandma went out on her own terms. I was too tired to write another letter.
On
the flip side…..
"Homicide,
Life on the Streets," and
"ER,"
do get my applause for
portraying Alzheimer’s characters realistically, although I admit it would
be difficult to blow Rosemary Clooney away while she sang so sweetly in the
halls of the ER. Both programs dealt with realistic situations in care and
brought up ethical issues that need to be explored in more depth, such as
the rights of the individual with the disease, the misconceptions that
surround elder abuse, and the challenge of reworking old relationships into
new ones. Obviously someone on both programs had first hand experience with
Alzheimer’s, someone who was able to glean something positive and life
giving in that experience.
"Homicide,
Life of the Streets," called
up the issue of caregiving to someone who was physically abusive to the
caregiver as a child. It dealt honestly with the issue of how this caregiver
faced the dilemma of caring for a man who was hated. And yet, the character
found a sense of peace, of having the opportunity to see his tormentor in a
different light, of seeing his role in their history from a different place
because he allowed himself that luxury. Their relationship wasn’t
developed in the series past the one episode, but it was clear that this
character was making decisions for his uncle based on something other than
hatred. If you think that all caregivers enter in the caregiving role
because of a deep abiding love of the person with Alzheimer’s then you are
greatly mistaken. We are all reluctant caregivers at best.
I
know a woman, as just one example, who was sexually abused by her father, as
were other members of her family. She had every reason to walk away from his
care, but she ended up being the only one in the family to take on the
challenge. She actually put her career on hold, moved into the family home,
took him out of the nursing home and cared for him until he died. Did she
ever get what she needed from him in terms of a verbal admission of the
damage he had done to her, to the entire family? Was she ever thanked by him
for her sacrifice? The answer to both of those questions is "NO."
But after he died, she did walk away with a deeper sense of herself, a
feeling of completion, an ability to put the horror behind her and finally
get on with her life. There is value in that.
"ER,"
in 1999, added a surgeon character who exhibited symptoms of the disease
through several episodes. The transition was done with taste, obvious
research, dignity and sensitivity. The character expressed his fears of his
future, a future in a nursing home, unable to take care of his own hygiene,
unable to express his basic needs. That, unfortunately is the reality for
people facing this diagnosis. The fear that fills them has to be beyond mere
words and what do they get in response to these fears? As a rule, they get
to hear from the world at large that they will be a burden to their
caregiver, if they have one, they won’t know what planet they are on let
alone who their caregivers are, and they will hear their caregiver being
told over and over that they belong in nursing home care. What they don’t
hear is that they will be loved in spite of what this illness does to them.
ER made an attempt to do that in these episodes and I applaud them for it.
Another
episode of ER dealt with the too quick judgment of family abuse because the
patient was elderly, suffering from dementia, emaciated and suffering with
bed sores upon admittance to the ER. The initial assumption was that he
had been neglected by his family. Social Services was called, the man was
separated from his family and placed in a nursing home. Unfortunately, the
attending doctor revised his opinion of what had happened as he began to get
a clearer picture of the dynamics of the family and the desire of the elder
to remain in his home with his family.
The
writers didn’t shrink from the reality of how the initial assumptions
affected this family unit. The beauty of this episode is that it
showed how quickly those on the outside, the parameters of the chronic care
needs of someone with Alzheimer’s are so ready to point the finger at the
family when problems develop.
The
reality is that few family members are coached in terms of how quickly a
pressure point can turn into a deep bed sore if not treated immediately.
Bruises are common in the late stages because of poor circulation, lowered
skin quality, a depressed immune system and a myriad of other problems. Just
moving someone from bed to wheelchair can cause bruising. The emaciation
happens in the late stages because the body no longer gleans nutrients from
the food they ingest no matter how much they eat or how carefully prepared
the food is. These are things qualified personnel know. Those who operate on
the fringes of this disease see only what they want to see, a family taking
their frustrations out on the victim. They rarely if ever see the family as
the advocate who needs tools, resources, training, support, encouragement.
It is so much easier to jump to the other conclusion and the hurt that is
done when an accusation isn’t warranted is beyond measure. The scars last
for years, and long after the person dies of this disease.
DOCUMENTARIES
Documentaries
have fared somewhat better showing some home care in
the late stages, but the general viewing public probably doesn’t watch them
with the same devotion or interest as they give to a show like Pickett
Fences or Sisters. It isn't a pretty picture even though those of us who
see it through get past the picture part and relate to the person with the
disease on human terms that transcend the images others see.
NEWS SHOWS
News shows tend to couch information on research studies in terms
of how long nursing home placement can be staved off, as in: "Vitamin
E can stave off nursing home placement for 6 months. Good news for families
facing Alzheimer’s Disease." One wonders just what population these
studies canvas given the fact that you can wait 6 months to get your person
placed in a nursing home even when you’ve already made the decision. And for
what its worth, since at least 75% of the caregiving is done in the home I
guess one might rightly surmise that whatever the new ‘study’ shows, it
results in staving off nursing home placement indefinitely for at least
75% of those with Alzheimer’s Disease.
One local show touted a three day series. "Crossword
Puzzles and mazes can stave off Alzheimer’s." The story was
about the recently released Snowdon Study regarding the nuns who had donated
their brains for Alzheimer’s study after death. Snowdons’ study revealed
the same approximate breakdown of healthy nuns and those nuns exhibiting
Alzheimer’s like symptoms as exists in the general population. The well nuns
were video taped answering the same questions put to the nuns exhibiting Alzheimer’s symptoms. There were obvious marked differences in the responses
of the well nuns from the ailing nuns over a period of time. However, upon
researching the brain tissue of well nuns after death in order to compare
differences with the brain tissue of those who died with Alzheimer’s, it was
discovered that at least one of the well nun’s brain tissue showed that she
had Alzheimer’s but had not shown any symptomology of the disease while she
was alive. She died of a cause unrelated to dementia.
The question then arose what made the difference in the nun
who had the disease but not only maintained her abilities but actually showed
some improvement in her cognitive skills and the nuns who obviously developed
the symptoms to the point where they were diagnosed with the disease before
their death. The assumption made is that something caused one to not develop
the progressive symptoms the others experienced. The only differences between
them is that the nun who didn’t develop the symptoms had not experienced a
trauma, had remained physically and mentally active, had a deeper sense of
self and operated on a fairly high cognitive scale of intelligence. There was
no way of assessing if she too might have developed symptoms had she not died
of other causes. In short, once symptoms became noticed in the other nuns
their disease ran the predictable course of anyone else diagnosed with Alzheimer’s. The
study did not prove that mental exercises would stop the progression of the
disease once symptoms developed to the point of diagnosis under present
diagnostic procedures.
The newscasters completely missed the point of the study
gleaning a comment about the need for us to remain active, to use our
abilities to continue to learn new things and exercise our brains as a way of
stopping the progression of Alzheimer’s before the symptoms become obvious
BOOKS
AND PUBLICATIONS
Books and publications written by practitioners in the service providers
and medical field state, either as fact or innuendo, the inevitability of
nursing home placement for Alzheimer’s people. I have listed those books I
found helpful in the Resources Section as well as reservations I have about
most books that are presently on the shelves. Books
I found most helpful. I
refer you to "It's Just Poop People," which demonstrates the
differences with how long term care is portrayed
Alzheimer’s care is no more difficult in the last stages than is the
care of someone with Parkinson’s, MS, ALS, or stroke. The only difference
is that most of these people keep their cognitive function whereas
Alzheimer’s people don’t. The fact that they cannot communicate does not
automatically make their care more difficult. It makes it more solitary and
that is the only difference.
STATISTICS
AND TRAINING TOOLS
Even the graphs that show the downward progression of this disease show
this bias. While the Early and Mid Stages of this illness are always
described in terms of function, such as confusion, forgetfulness, loss of
motor control, etc., etc., the description listed by the Last Stage will
often end in the words: Nursing Home Placement, instead of a more
reflective description of the care that is needed, i.e.: Patient becomes
totally incapacitated and needs help with all aspects of care. I attended
the Annual Public Policy Meeting in Washington several years in a row. My
last visit was marked by a seminar led by one of the great researchers in
our country. This is a man who knows the vast majority of care is going on
the homes and yet the graph he put up list nursing home placement as the
final stage of care. I spoke to the president of the association after that
talk and he agreed that was not a true reflection of how care is
administered in this country and that the speaker, himself did not believe
that it was. The only explanation is that he too is a victim of having
swallowed the jargon. Hear it enough and it becomes truth whether its true
or not.
THE
PUBLIC
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You can’t make fun of the deaf, the blind, cancer or the insane, because
that is considered reprehensible, but stand-up comics as well as the public
at large seem to feel Alzheimer’s Disease is open territory for ridicule.
Someone misplaces something at work and someone else will invariably accuse
him or her of having Alzheimer’s Disease. And people laugh. And while it
might be considered gallows humor,§ it
nevertheless creates an aura of complacency and misconception that goes
largely unchallenged. A caregiver I know once challenged her co-workers
after one of them made a joke about Alzheimer’s. She was accused of being
the Politically Correct Police and that she had no sense of humor. "Just
because you’re crazy keeping your mother home, doesn’t mean everyone
else is," was the statement one of her co-workers threw at her.
THE
ALZHEIMER'S ASSOCIATION
Firstly, there is a large portion of us who aren’t so shallow
that we can’t care about someone even if they can’t identify us
properly.
Secondly, my husband was curled into the fetal position and
weighed under 100 lbs. as a result of this disease when he died. There is
more to it than just memory loss and if the public had any notion of how
horrifying this disease really is, there would be a hue and cry across the
planet demanding that this illness be eradicated. And our Congress would be
leading the charge in allocating money for research if for no other reason
than to preserve their own chance to function as they age. As it is, why
worry about a bunch of people with ‘Old-Timers Disease,’ who walk around
forgetting who their relatives are and who have outlived their children’s
ability to take care of them?
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The Alzheimer’s Association sponsors a Public Policy Forum which takes
place every year in Washington. The conclave is there to address members of
Congress about the needs of people with this disease and the needs of their
caregivers. The highlight is when the Senate Aging Committee hears from
actual family members. I have yet to see a caregiver who still has their
person home during the last stage of this disease speak. I quote from the
"Public Policy Up Date, dated May 1999 and published by the Alzheimer’s
Association Public Policy Division in Washington.
"(name deleted) who was diagnosed with early onset
Alzheimer’s at age 56, spoke about his experiences with the disease.
Accompanied by his wife, he told the Aging Committee about their life since
the diagnosis and how they are planning for the future. "All of the
necessary legal and financial plans have been put into place. As I require
more assistance, we will hire a live-in caretaker to help when my wife is at
work. Naturally, I want to remain independent as long as possible but when the
time comes, we anticipate that a nursing home will be necessary." The
emotional and financial burdens this will place on the family are painfully
obvious to all of you sitting here today."
It is a shame that this family can’t even fathom the
possibility of keeping this man home until he dies. If they can afford live-in
help now they can probably afford it later and his care really won’t require
a 24 hour-a-day nurse. If anything, his care needs will actually get easier in the
last stage of this illness. There is also adult-day-care, volunteers, family
involvement, private home-health aids, to help in the daily care as well as hospice
to aid in the final care. Obviously, this family isn’t getting information
about alternative choices. And isn’t it a shame that this man already sees
his care needs as a burden. What a burden for him
to carry through what remains of his thinking life.
So how can we blame our service providers or the public at
large for that matter, for their inexperience and misconceptions about this
disease.
There are 4,000,000 people with Alzheimer’s Disease in this country,
and according to the statistics, 75%, roughly 3,000,000 are being cared for at
home by one other person, usually a family member. In reality, the numbers at
home exceed the 75% figure with the addition of paid home health care, adult day
care, supported living arrangements and family, volunteer, and hospice
involvement.
With the numbers of those with this disease increasing as our population
ages, that is a whole lot of people being left out of the publicity loop in my
opinion.
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