Patient-Advocate Panther's Guide to
Elder Support and Home Care (note 1)
A few "to-dos", "don't dos" and some "beware ofs" when care giving.
I am writing this during a period of
grieving, because I do not want anyone else to be caught so off
guard as were I and my Mom, by a system that is not professionally
trained to TRAIN the family. The family needs training in how to
care for a family member who is elderly and ill and progressively
facing a disease cycle like Alzheimer's and Parkinson's, with the
other age related heart disease and vulnerability to illness that
inevitably follows. The various foundations we encountered
were largely useless donation absorbing organisms with little to
offer us. Day care was largely about having a family member
sleep in a chair. Volunteers in day care always meant well and
did what they could, which was not unappreciated. But it was
largely not useful.
First and foremost a WARNING:
Pneumonia, Kidney Failure, Renal Failure and Urinary Tract/Digestive
Tract Failure from In Hospital Stays is quite common, because they
THROW antibiotics at your elder patient and usually don't cure these
corollary diseases fully, which lead to sepsis (broad infection in
the heart and lungs) and death. Don't accept these illnesses as some
kind of "normal" if your practitioner says so. INSIST on long term
cultures of the Sputum, Urine, Blood and Stool, to determine WHICH
MICROBEs (diseases) infect your family member's lungs, digestive
tract and kidneys. IF THE DOCTORS USE THE WRONG
ANTIBIOTICS, YOUR ELDER FAMILY MEMBER WILL DIE OF THE COMBINED
EFFECTS OF THE DISEASES NOT BEING CURED, AND THE WEAKNESS CAUSED BY
THE WRONG ANTIBIOTICS BEING USED. This is probably the
number one cause of institutionally induced death among elders
today. The Doctors may claim they did "lab work", PUT YOUR
FOOT DOWN! Insist on "long term cultures that outlive the
antibiotics in their system allowing the underlying microbial source
of these infections to be revealed and the proper antibiotics
SPECIFICALY TAILORED to the actual cause of the pneumonia, kindey
infection, UTI or other infection properly prescribed." This
may be the only way to save your family member, and MOST Doctors
will actually lie to you about the applicability of the
antibiotic they are using to the pathogen infecting the patient.
While the Federal Government is attempting to CRACK DOWN on this bad
practice, which tends to drive up Medicare Costs by 90%, while
killing the patient, YOU, THE CARE GIVER, must take action early on
to protect against the practice (which may be deliberate on the part
of some Hospitals and Rehab centers). Discovering this sad and
tragic negligence the hard way will cost you the life of your family
member, as we learned the hard way.
I and my Mom did everything in our power
to keep my father alive and comfortable during the worst of it, over
the course of a 16 year period that found us without the sympathy of
the system, without the sympathy of society and without even the
sympathy of employers, the law, even of the medical doctors who were
charged with providing services for which we paid untold hundreds of
thousands of dollars. We persevered only because it was for
Dad, recognizing that he faced the choice of either a terrible death
outside of his control or prolonged illness with comfort and love,
with our help, that was the only choice before him. We chose
the latter, because the former was unpalatable to either of us.
We had no illusions that we would get good help from the System.
We got little for years, but later on found how to get the System to
help us. My Dad was home cared for from 1988 to 2005. It
was a 24x7 strenuous battle against bias, malice, illness, financial
hardship, abusive facility personnel, poor quality professional
help, horrifying facilities and yet I know like you, I'd do it all
again, because you only get one father, one mother, and one chance
to help when they are very ill. In America, not everyone is up
to it. But if you are not, don't blame others.
We had a very bad
experience with professional help while caring for my Dad.
the final year of his life he was in and out of hospitals. It
was unfortunate. He has since passed away, but had we had good
instruction from medical professionals early on, we'd have been able
to save him at least some discomfort and illness. We struggled
for 16 years between 1990 and 2006 with bad advice from Doctors, negligent abandonment by
Doctors, Professional Arrogance, poor instruction, improper treatments,
and then during the last year: overdosing by facilities,
bad food in facilities and some Nurses and/or Aides who simply had terribly bad
ideas or were abusive or unresponsive or in many cases unable to
read or speak English. There was significant professional
incompetence, largely from his primary care physicians and from
certain sub-Acute care doctors. We got lucky finding a
gerontologist practitioner who was able to keep Dad going for six
months. But, the offices suffered from negligent abandonment
justified by the limits of their practice: once returned home he was
left to suffer without home aid. We struggled with the system,
even getting home doctors to schedule blood tests fell on deaf ears.
Mainly, we discovered that when Dad was in a facility, the facility
was very understaffed or had poorly instructed Aides. Then, in any
transition between hospitals or facilities, the Doctors simply did
not oversee proper medication transitions. We had to interject
ourselves to overcome negligence. Medicare did not compensate
for very vulnerable patients. And they did not support
"maintenance" of very sick patients. The system of Medicare is
not for the very ill or dying, it can not cure, it does not make
comfortable, it is up to the Patient's Advocate. And the so-called
appeals system is fostered by the professional arrogance of Doctors
who view the very elderly and the very ill as unworthy of their
extra efforts, in 7 out of 10 experiences. It was appalling.
America is kidding itself if it thinks it has an Elder Care program
that is even remotely up to the values of what we owe our parents
and the generations that came before us. I, personally, am
horrified that Congress thinks Medicare is working. It's not 1/3
what it should be. It needs sustainability in its care for elders,
soup to nuts reworking in the notions of home based care, it needs
to understand that its standards are killing the elder patients.
And not saving money - it is wasting it by applying it wrongly, and
being ripped off by medical sub acute and nursing facilities that
pay lip service and leave the patient to become part of a vicious
cycle of billing and treatment that accomplish little in too many
cases. I personally can not blame the VA system for its
shortcomings, it has administrative failings, but it does work
miracles and cares superbly for elder Veterans. However, it
has intellectual shortcomings and errors that need correcting.
Those are things I can get fixed, so they will not be addressed here
because I will be forever grateful for the hospice support provided
as my father died.
Then there were our Angels: some of the Doctors, Nurses and
Aides who were quite skilled and shared their knowledge and went the
extra yard. Not all of the Medicate system is bad, most of it
is not. The biggest problem is the fear engendered by the expression
"Medicare will not pay for..." whatever it is your elder really
needs, that leads to the elder being cut off usually under the mask
of what looks for all the world like a patient who is recovering
enough to be discharged. Unfortunately, in elder care, the
recognized standard for patient discharged covers a long zone of
illness from which the elder him or herself may not recover. The
later Doctors we found for Dad were competent and the VA system was very
skilled, they did whatever was possible to make Dad comfortable.
However by late 2006 Dad was too elderly to physically sustain
all the ailments and at his age, the damage he'd incurred to his heart
in his 50's compounded by ongoing treatment problems. So at 90, he peacefully passed
away from heart failure just as he looked like he might be getting
better. He will be sorely
missed by his entire family and his friends. Note, however, that
when he first grew ill in 1988, he was given 3-6 years to live. He
lived 18 largely due to having excellent Patient Advocacy, in spite
of our own lack of knowledge during it all: we learned as quickly as we
were able. Note that Elder Care is very tiring, but you will
lose weight and that is a positive. We worked exhausted, we
worked tirelessly, we took abuse, we were insulted by institutions,
and doctors and nurses, we were scolded by records personnel,
ordered to move our car, blocked from entering sometimes, told to
leave while my Dad was being changed, but refused to insure he would
be treated gently. We gave it our all. We were
privileged to have at least 10 extra years with Pop. For that
I think God and have elected to write this document, despite the
fact that my own attorney has suggested I could get sued for even
rendering an opinion piece like this as I am not a medical
professional, neither is mom. Read on, for my recommendations, below.
Don't go into this blind. We had to learn the hard way, over
the course of a progressive disease that lasted between 1988 and
with my Dad would have perhaps been the same, but the Medical Profession, in
my opinion, is considerably negligent in that it does not really
publish a guide that is capable of walking you through what to do.
This seems largely because it wants you to rely on professionals
alone, for which Medicare will, up to a point, pay. If you do
not early on get into the System and get good support from Hospice
or Social Services, you can end up with an elder in bad need of
maintenance care, and with you without either the knowledge nor the
skill to provide it. When I hear of people complaining that a facility they
then put their elder in was "negligent", I warn: "Where were you?"
We ABSOLUTELY MUST be there for our elder family, as the system is
not set up in all cases to insure they survive. It requires
our participation, no matter how difficult. When the system
fails them, it is often and inevitably our fault for not having
acted as their patient advocate. Expect to spend all visiting
hours with your elder if in a facility, or to have someone there to
observe and help and feed them or help feed them. Likewise for
Home Care. Do not rely on the facility to do all that is
needed: as it will not do more than the basics.
when it comes to proper diagnosis, also NEVER rely on your Doctor and Medicare alone, as Medicare does not
support "maintenance" care for an Elder, and your Doctor will only
do that which Medicare will pay for. While Medicare claims it
does not direct the Doctor what to do, that is a HYPOCRISY built
into the system. Medicare has some very poorly defined limits
to the care it will provide (e.g.- "pay for"), for patients who are
on the fringes, such as very vulnerable, very elder patients, are
forced off the Medicare Map by those standards failings in the area
said patients really need extensive care within. So take heed and make
certain to understand how to care for your elder, as I will attempt
to relate to you here from my experiences. Please note that all sharing here is
done without liability, you must consult with a physician.
Furthermore, take advantage of Medicare's Home Care support, if your
elder is a Veteran, get the Veterans to bring in either Hospice or
traditional Home Health Aids and skilled nursing, with weekly or
bimonthly blood tests, urine and stool tests - WARNING: Do not let
them soft peddle this need, do not put it off, TEST REGULARLY: because elders can develop serious heart,
lung, kidney or brain ailments on very short notice, if their blood
chemistry, stool and so on are not regularly tested, along with
heart, pulse, blood pressure, etc. The bane of elder existence is
nominally called "Sepsis", infections that spread to the heart or
kidneys- these are fatal if not prevented or responded to. If
too much happens, your elder will no longer be curable by antibiotic
therapy and will, as in the case of my Dad, pass on. Home care is really about
duplicating as well as you can, a combination of the Emergency Room,
the Hospital and the Sub Acute care facility, such as may be adapted
to your home. Take heed: if you leave the entire process of
Elder Care up only to professionals, if you have a delicate elder,
you will run the risk of a very finite life span. And if you
see trouble, respond to it, get help immediately, get them into a
Hospital and be careful to insure they get gentle, supportive,
hydration, proper oxygen therapy, good food, and NEVER let them
become UNEXERCISED. Exercise, even in bed, is their life
preserver. Remember that. And if there are two of you to help,
share and learn from each other. You'd be surprised how much
you can do if both of you take on the task of observing, learning
and teaching the other. Bad things happen fast, deterioration of
the body's organs are the thing to prevent, and you need to be
alert, even if you become tired.
I personally opened up a
whole new door in the human definition for "tired" during my care
giving. I'd do it again for my father. So would my mother, in
her mid 80's.
And everyone I've met caring for a family member in person, has said
the same thing. You aren't alone. While its not pretty,
its worth the extra time to be with your elder, and they will be
grateful for your effort, even if they can not fully communicate
with you... Remember: YOU ARE OFTEN STANDING UP FOR A PERSON'S
RIGHTS, AN ELDER WHO CAN'T FULLY SPEAK ON THEIR OWN BEHALF
(depending upon their disposition, of course.) That's what the
patient advocate's job is all about.
and LATE STAGE
To perform elder care
at home with a patient requiring significant bed rest or who is bed
ridden, you must take certain steps that will prevent the elder from
developing various ailments, keeping them clean, well nourished,
hydrated, exercised and in a comfortable, soothing environment. Get
the assistance of a Nurse Practitioner, to come into your home
weekly at least. She can guide you beyond the below basic
steps in the finer points of elder care, if she is skilled enough.
Also, make certain to schedule various tests in home with her for
even month. Don't fall behind in the testing, it can be fatal,
as elders can take a turn for the worse in a day.
At all times be
gentle with the elder. They need loving, gentle care, not
quick, overly strong movements. Keep their temperature moderate and
their room reasonably dry. Keep them hydrated per
recommendations of a Doctor, for example, Pedialyte, Organic Coconut
Water (for example: Harvest Bay), and other drinks are most helpful. However, remember: as we
get older, we tend to inhale rather than swallow. This leads to
Aspiration of food which can cause Pneumonia. Have your elder
tested for good swallow. If they have a weak swallow, use
something like "Thicken It" to thicken fluids. Do not FORCE
FEED. Note that you can find local hospitals who will test for
"Aspiration", and help you determine the safe way for your Elder to
eat, depending upon their state. If you must, you can find
ways to get them to open their mouths. Dementia can be very
frustrating, if present, but use patience and observe what foods
they like. If you are forced to use pureed food, you can
supplement with Organic Baby Food for the 2nd Year, that is
something we found helpful. It is available in most
supermarkets. We avoided non-Organic foods because they
contain a variety of toxic factors that can harm a very vulnerable
elder's digestion, blood and overall health. In fact,
non-Organically grown foods are not always good for you or me
either. The difference between Organic and non-Organic, is a
certified process of fertilization with organic fertilizers and no
use of chemical pesticides and/or no use of GMO (genetically
modified organisms) in the food at large. It's the food our
grandparents ate before the advent of modern, chemically enhanced
farming. It is healthier, in general terms, to eat organic
than not. But use suitable precautions, like cleaning the produce,
even if it says washed, wash it and steam it.
need, for starters -
The Bed, etc.
remember, if your
Doctor prescribes it without which your elder would be in
significant danger to their health, Medicare should cover it.
Top Air Mattress
- I'd recommend an Air Mattress from a Professional Medical
Supply house. Medicare may cover this. Without it,
you enhance the risk of bed sores which can be fatal or lead to
fatal consequences even if treated. Don't learn this the
hard way. The Air Mattress will allow you to avoid putting too
much pressure on delicate skin and tissues, and by using
pillows, you can turn the elder properly every so often (2 hours
is recommended) by placing one under the backside. Keep this
mattress as clean as humanly possible, even though it is best
used with a soft, elastic cotton fitted cover sheet(s).
Bed - A fully
crank able or electric bed frame and mattress / box springs is
highly recommended. That way you can elevate the elder to
change their clothing and bathe them, change their leg and back
positions to shift and redistribute weight, and sit them up to
feed them or let them view TV or read. It should be equipped
with matching box springs and spring mattress for under your Top
Air Mattress. In extreme cases of bedsore sensitivity, you
should get a Hill Rolls or other Enviro Air Bed with complete
inflate ability, by the way. Warning, however, the Hill Rolls
Enviro and other kinds of extreme inflation and temp control
beds with complete system of bellows, mattresses and inflators,
does have sand in it (which can spill and cause trouble) and can
develop dangerous fungus or mildew that can endanger the elder.
So, I personally prefer the Top Air Mattress and regular
electric bed frame with springs/etc. Consult with your
supplier, if you aren't sure.
Quilted Bed Pads - these are heavy duty pads with quilted front
and woven back. Get plenty of them. They go under
the elder above the fitted sheet, and are invaluable for turning
the patient, because they are very strong. The White Quilt
is designed to distribute the pressure unevenly throughout the
elder's back, leading to ripple-ee skin, do not be alarmed,
simply gently stroke the ripples away if your Doctor approves,
or leave the elder on their side a while until they return to
smooth on their backs and then return them to supine.
Pads (available at most Drug Stores and Medical Supply
Companies) - this is a personal preference, these smooth, paper
pads range in size from 2x3 foot to larger, can be placed above
the White Quilted Pads, to serve to catch urine, feces and food,
and are easily replaced at changing time.
Sheets. Get plenty of hospital grade
sheets. These are stronger and softer than home sheets.
The Bed is made with fitted sheet, then Hospital top sheet, then
a Draw sheet (side to side, folded double, edgewise under the
patient's thigh to back region), then a Quilted Bed Pad (or
two), the patient, then a cover sheet, and the blankets, as
needed. The Draw sheet, the Hospital top sheet and the 2nd
Quilted Bed Pad are optional. Remember you are on an Air
Mattress Pad, so you need to carefully secure the sheets so they
don't come loose.
Blankets - remember that temperature control is vital, as
elders are susceptible to cold and heat. Making certain
you have excellent air condition during the heat of summer is
vital (always keep the filters clean on room and central air)
and that you have excellent house heating during winter, too.
And, year round, always keep your elder warm, not boiling hot,
and do not let them get chilled. One or two light weight,
yet warm blankets help, you can add or remove an extra blanket,
turn down one blanket, or remove the blankets altogether if it
gets too hot in the room.
Leg and Foot protection.
You'll want good hose that you change regularly, to avoid foot
infection. Use the type with rubber bumps on the soles if
your patient walks, to provide traction on the floor. Make
certain no exposed wooden floor have splintering. And you should
double rap a light blanket or heavy towel and put it under the
patient's heals avoiding contact between the feet and the
footboard, to avoid pressure sores.
Hand and skin protection.
The occasional dementia sufferer may tend to scratch
and infect their skin unconsciously. If so, use tarry
cloth half socks as mittens, like a child with chicken pox
wears. You can get them at most supermarkets.
If you take them to a facility for special care, take the
mittens with them and write your elder's name on them.
Use good skin moisturizers, to keep the skin from becoming dry,
brittle and develop cracks or tears. Take the time.
Your elder will appreciate your placing the moisturizer on the
skin of the back if you make it a gentle massage like
experience. It is very relaxing for them. The souls of the
feet should be applied as well, you may want to pick up a book
on relaxing foot massage as well.
SUPPLIES: You can get diapers, pads,
creams etc from any Medical Supply house, or online from places
like Hocks.com and AmericanRX.com, at good prices, and have them
UPS'd or FedEx'd in. NOTE TO VETERANS, if your elder is a
Veteran, ask the home nurse practitioner to order these supplies
for you, they are generally free to Veterans in the lower
numbered classes of care, along with medications (at a very low
co-pay) and most health care. Leverage the Hospice and Home
Health Care systems at the VA for help, and don't be shy.
Sometimes you may have to get in their face. If not a
Veteran, take advantage of the Home Health Care program provided
by Medicare as long as you can, and if your elder needs home
care help but is being denied, do not be afraid to lodge
complaint after complaint if it is needed to insure care is
provided, and/or return them to the emergency room, after their
60 day mandatory home care period, and to otherwise find
whatever Medicare will support your elder with. Use the
system wisely, call Medicare for advice.
How to insert
and remove the pads, sheets, blankets, bathe and turn.
REMOVE: Turn the patient to one side using the Quilted Pad on
that side, have your partner hold them gently in that sideways
position. If they complain and appear to be in pain,
IMMEDIATELY return them to the supine position and stop this
effort, contact a physician.
"whatever". Now, grasp the "whatever" you wish to
remove (remember, the bed has layers of sheet, pad(s), etc,
under the elder) from the side opposite the direction they are
facing. Roll it into a tube like shape TOWARDS the
patient's back with the roll on the top of the "whatever", when
you reach the elder's back, roll in and down as far as you can
under their back, without causing them discomfort.
Now using the Quilted pad from on the other side, turn them side
to side in the other direction until they are facing the other
way, on their side (if they appear in serious pain, lay them
back and contact a physician). Now see if you can gently
rock them over the roll you turned under them. If you can,
it will be free and you can continue rolling the "whatever".
If not, gently grasp the whatever's flat side and pull it out
from under them, while your partner leans them away from you.
d. TO INSERT:
roll up slightly more then 1/2 of the whatever, side to side,
with the curl part on the top. Lean the elder away from
you first. Then place the roll under their back
side, and roll THEM over the curl, and unroll it to complete the
Bathing. This requires regular changing of the
above, and use of two tubs, one with soft soapy warm water, the
other with clear water, two good soft towels, paper toweling and
towel-ettes, and a lot of patience. Wash from the head to
the toes in small sections, drying immediately, so the patient
does not get a chill. Keep most of the patient covered by
sheets, to keep them warm. Remove the shirt first, then
replace it as you dry. Then the pants and likewise.
When completed make certain they are dry and keep them warm with
an extra blanket for 20 minutes until you are sure it is safe to
reduce blankets. Drain and clean the two tubs immediately,
and take all wet linens out of the room for cleaning and drying.
f. Turning. Regular turning
means "every two hours", you grab the reusable Quilt, tip them
onto their side, and put a full size pillow under the fanny and
hip and pelvis bone, returning them to about a 30 degree angle
to one side or less, as comfortably as possible. Alternate
sides every two hours! If they are developing a redness on
the backside on one side or the other, immediately identify this
to your Nurse Practitioner and take steps to protect THAT SIDE
more, removing pressure from it as much as possible. She
or he will advise you on how to avoid a Bedsore.
g. Smooth, Even Bedding Means Even
Distribution of Pressure. This statement is critical.
Make certain the entire bedding is smoothed out and no wrinkles
or doubling under the Elder. If such wrinkles develop in
the quilt, top sheet, sheet, or pad, you may cause a Bed Sore to
develop. The same thing applies to the pillows and any
padding you place under the heels of the feet, as well as
keeping the arms, head and hands off the Safety Rails of the
Bed. Avoid uneven distribution of pressure and contact with hard
objects at all cost.
Elders have very
little ability to control their bowels or urine, and vomit.
It is incumbent for us to be prepared as care givers, for the
worst. You will get used to it. Remove ALL FECES
from the undercarriage and out of the rectum, using a wet cloth.
Spray the Feces first with an antiseptic like cleanser such as
PERI-GUARD Cleanser, only a little, so as to set down an
antiseptic shield. It also is used to gently wash the delicate
skin, using a daubing motion and toilet paper and wet towlettes.
and Heat as well as Feces and Urine can damage skin and that can lead to bedsores
or sepsis. Do
NOT put a sheepskin cloth under the elder, no matter how many
nurses tell you to, it will lead to a terrible bed sore.
What you'll need
addition to constantly changed bed pads above the Quilt, you are
going to need DIAPERS. Get them on the large size, so as
not to harm the elder's skin with undue pressure, but not so
large as they leak. You can supplement them with direct
application pads. CHANGE THE DIAPERS REGULARLY, even if
the elder does not appear to have urinated or defecated.
This, done properly, will insure no fecal matter, urine, etc.,
can macerate the flesh and infect the patient. It also
gives you an opportunity to use moist Huggies or Pampers or
other towel-ettes to wash the under parts GENTLY. Use
caution not to washcloth the skin, it can tear.
Diapers can be rolled under the patient the same way as above
instructed you, only avoid sticking the Diaper Tapes to
anything, so as not to tear them. Keep them clean so they
don't come loose.
The patient's skin may need moisture barrier, so acquire Sensi-Care
Ointment in the 4oz tube and Peri-Care Ointment too (or A&D
Ointment). Sensi-Care is drier and better for the
backside. Peri-Care or A&D are more liquid and better form
the front side. Do not over apply. But, do get good
coverage before diapering. Apply the more liquid barrier
around the crotch and genitals, the more dry barrier to the
rectum area around the backside and to any sign of redness or
pressure impression. Keep TURNING THE ELDER from side to
side on a two hour schedule if you notice pressure impressions
on their back or backside.
This is available in plastic bottles as is peri-cleanser. Use it to wet paper
toweling for cleansing purposes. Always THOROUGHLY CLEAN the
nether region and genitals after defecation and urination and
then apply a good moisture barrier, anti-infection cream AFTER
DRYING the region.
A BUCKET and
SEVERAL SMALLER WASH BASINS. These are self explanatory.
Keep them very clean using Lysol or similar anti-bacterial.
You should use soft soaps such as Dial or as recommended by your
latex (or if you or the elder is Latex allergic, NON-Latex)
Medical Gloves (the skin tight kind with slight powder on the
inside to ease them on and off) by the hundred box and keep them
handy. Do NOT handle the elder without putting on gloves,
EVER. You can catch or transmit untold trillions of
organisms that are dangerous to you or the elder when you do.
Throw the gloves away when you take them off, DO NOT REUSE THEM.
SOFT PILLOWS with
PILLOW CASES. These are critical. You'll need one on
each side of the bed (on a table) to catch the Elder's HEAD when
you roll them on one side or the other. You'll need one to
prop them as you turn them from side to side, to avoid Pressure
on one spot all the time. Pressure on one spot all the
time is the first step to TISSUE MACERATION and a potentially
fatal BEDSORE. Avoid having to have BEDSORE Surgery, the
consequences can lead to pneumonia, urinary infection, and loss
of life, due to exposure to our wonderful Hospitals and Sub
Acute facilities. They are carriers of infections that elders
are hard pressed to survive.
PERSONAL and OTHER HYGIENE.
Keep yourself bathed. Wash your own genital and under parts
regularly, to avoid transmitting fecal matter. Use a Lysol
or similar spray in the Bathroom after you use the toilet, and
always wash your hands and lower forearms THOROUGHLY after you
do, and every time after you are done caring for the elder with
personal contact. Keep your nails short (and the elder's),
and clean under them before going into contact with the elder.
Keep your hair tied back, and wear a hair net or bathing cap if
you are shedding scale, dandruff and/or hair. The mites in
your hair carry bacteria that can enter the elder's lungs and
skin, leading to infection. Keep the HOUSE clean and swept
to the best of your ability. Always immediately wash any
spills in the patient's room with good soap. Use BLEACH
and HOT WATER on all clothing from the Patient and Bedding.
Same with your own. Change the filters on your air
conditioners and clean them regularly. Keep any facial
hair short and clean, and if you have a cold, flu or other
illness, get a substitute care giver to spell you.
GARBAGE. Get plenty of
medium size plastic grocery sized bags with carry handles.
Do not toss large fecal dumps out in the trash, flush them.
Pack filth into paper before placing in a bag, tie the handle
then place it inside another and tie the handle plastic.
Take all garbage out to at least your back hall after every
changing, and take the garbage OUTSIDE THE HOUSE as soon as
possible. Do not store garbage in the elder's room, remove
it from the room upon its generation. Do not store garbage
on the same floor, remove it from the floor upon finishing with
a changing or bathing or grooming or therapy session. Get
the Garbage out of the Home as soon as humanly possible, into a
Garbage Can. After removing Garbage and/or taking it
outside, WASH YOUR HANDS AND FOREARMS again with good soft soap
and warm water.
KEEP BEDS and WORK SURFACES
IMMACULATE. This prevents transmission. Move any
removed fecal matter from the elder's immediate area so he or
she does not breath in any fumes from it. This is a source
BE WARY OF CATHETERS.
They can lead to infection, and if a condom catheter, extreme
discomfort. You may be better off using larger, super
absorbent Diapers (we'd used up to 2 at a time) plus the paper
absorbent pad OVER the Quilted reusable pad, and change the
Elder much more frequently than normal. Once you get into
the Rhythm of changes, they are easy, routine, and can be done
very safely. Many an elder has died of infection from an
inserted Catheter, at the very least they WILL get a Urinary
Tract Infection. If a Catheter is used, it gets changed
REGULARLY at your insistence, and monitor the blood color for a
UTI (urinary tract infection) as these tend to worsen the
patient's condition and can be fatal.
Food is terribly
personal. You are going to have to select consistency
based on the condition of the elder's teeth. You are going
to have to select volume based on their weight. An average
150 lb male elder needs 75 grams of protein just to sustain
their weight. Here is what I believe.
Organics. Organic food has less chemical toxins as a
result of no pesticides used and no chemical fertilizer used.
While there is no absolute rule that says you should use them:
In the case of an elder, this could prevent certain dementia
effects and toxin inflow and that might prolong their life.
Start there. Use only CERTIFIED Organic foods if you use
Organic foods, there are a lot of opportunists out there
claiming to sell Organic foods, who aren't. Also, note
that the chemical fertilizer companies are trying to bias the
public against Organically fertilized food industry, so who
knows what THEY might do. I also strongly recommend
AGAINST Genetically Modified Foods, as they are not necessary.
All RAW Organic produce MUST BE VERY WELL WASHED and it is
recommended not to use them RAW, but to STEAM THEM, at a good
temperature or COOK THEM at as high a temp as is appropriate, to
insure no bacteria or viruses are transmitted. The same
thing applies to ALL produce, organic or not.
Supplements. A good consultation with
could provide you an excellent Elder Care vitamin regimen.
It is highly personalized, so you should take full advantage of
professional consultations. Do not listen to the "Vitamins
don't do anything" crowd, that's bull malarkey based on the
misconception that food will suffice nutritionally - we have
found many Doctors incredibly DENSE on this subject - not in a
patient too weak to completely masticate or from food that
itself is inadequate. Modern Food growing and
processing and the eating habits of the elder, can lead to
serious deficiencies, which can be moderately compensated for in part by a decent
vitamin regimen. Vitamins from plant sources of the
Organic variety are of the top quality.
in America generally have TERRIBLE FOOD. When and if your
elder is in a facility for a while, bring your own food.
Get the Doctor's permission, and bring in foods he or she is
used to. The food in institutions is TERRIBLE, without
exception. Don't count on it to sustain your elder.
Expect that if your elder develops a sickness state or injury
that they may have to be transported to a Hospital and then a SubAcute facility in what we used to call a Nursing / Rehab
Home. Do NOT rely solely on either their personnel nor
their food. Stay right on top of things, advise them you
are their patient's advocate and Family. Insist on the
proper nutrition and care.
Peril. Elders are highly susceptible to CDIFF, GASTRITIS
and other diseases of the bowel that can be fatal. A good
rule of thumb is to ALWAYS provide supplemental Acidophilus
Lactobacillus for the digestive tract, unless your Doctor
overrules you for fear of hurting the elder. This includes
supplements, Soy Yogurts such as Silk, and other foods that have
beneficial flora. Furthermore, a good ProBiotic like
Florastor, a special yeast, can displace other infections and
may need to be used in some cases, and wouldn't hurt in others.
Lastly, there are other supplements such as Milk Thistle and so
on, that can help clean the Liver, consult with an expert such
to find out more about proper use of Pro-biotic Supplements.
Find out what your elder is allergic to. Then avoid it.
If in a facility, do not allow them to feed him or her anything
they are allergic to. Elder reactions to allergens is
quite pronounced. Food allergies such as dairy, caffeine,
wheat, sugar, etc., should be respected. Try and avoid
sedating your elder with comfort food. Temptation or not.
Most comfort foods are loaded with allergens. Go for
healthy diet and good vitamin supplements, organics, etc., and
avoid the easy way out, as that is usually also the fatality way
out. If you want your elder to live longer, do the time and
a critical goal.
This is a tough one. I'm not
certain how, but keeping Fecal matter and infectious agents out of the air
intake is vital.
A good clean air flow helps, as does regularly cleaning the hind
area. Pneumonia is common and the most common cause of
death in Elder Care. It got my Father. Most
antibiotic treatments are pointless, as they either cause other
infections or side effects, or are simply ineffective.
Regular Hydration is critical, along with good food, and most of
all: REGULAR EXERCISE. It appears that the most common
cause of Pneumonia among Elders is INACTIVITY. So enlist
the help of a consulting Physical Therapist, and get your elder
up three times a week at the very least, for exercise.
Walks of 100 feet or so, are very conducive to keeping the lungs
clear of Pneumonia. We ran into negligent institutions who
simply refused to take the time. Don't stand for it. Insist on
your elder, if at all possible, to spend 3-5 hours in a chair
each day, and to be walked in a Gym by TWO PHYSICAL THERAPISTS
at least 3 times a week, or as much as they are able to endure.
This is probably the PRIMARY FACTOR for keeping them from
succumbing to Pneumonia. In may Dad's case, his heart
became too weak over time to continue walking. I had tried
everything to keep him up and around, and finally he just said:
"I can't, I can't" and often just collapsed. Some Physical
Therapists were better than I at getting him to walk.
Others just gave up. Do whatever it takes. However,
since your elder may have infirmities that might be harmed
by exercise of this sort, consult with a Professional Physical
Therapist FIRST. I can not understate for you the
importance my spending 8-10 years walking my Dad down the
driveway, up and down the stairs to and from Bed and to and from
the Bathroom each day had to his reaching his 90th birthday.
Remember, they are our Family, and we do have an obligation to
do what is possible. If you are unable to accommodate what
I had to, the daily changing's, the physical movement, the care
for my other parent, simultaneously, while being in a business
(I got lucky in my timing of events), then HIRE someone who can
fill in for you. Do NOT neglect Physical Movement if it is
at all possible, AND DON'T LET ANY ARROGANT PROFESSIONAL OR
NEGLIGENT PROVIDER TALK YOU OUT OF IT. It's a life or
elder care life preserver.
Exercise can take the form of any reason to get your elder up
and around. Bathrooms are a great reason. Walking from the
living room UPSTAIRS to the bathroom three times a day or more
is an excellent way to keep them moving. Taking daily
walks to the end of the driveway and up the block to a neighbors
home and back, are too. Bringing them along to go
shopping, if they are able to walk and lean on the shopping
cart: excellent! Even just getting them to leave bed and
walk down and sit in a chair. Steps are terrific exercise.
But use caution, and it helps to enlist a young family member
hearty enough to give them physical support. I walked Dad
up a double flight of stairs three times a day to an upstairs
bathroom, and up and down twice a day from his upstairs bedroom.
Sometimes he gave me a real fight, he'd sit down suddenly on a
stair or go limp and become a dead weight complaining "I can't!"
Largely a Parkinson's or Alzheimer's behavior, I could get into
quite a match with him to get him up and walking again.
Yet, it got his heart pumping, his lungs breathing. I'd make up
stories, even sing to him, mock anger, make jokes, get him to
laugh, anything I could think of. Yet, that exercise kept
him from developing Pneumonia. Once his exercise was
interrupted by hospital treatment or he became more sedentary,
Pneumonia became a serious threat that eventually got to him.
Neither Medicare nor the VA system have discovered that
enforcing a daily regimen of "up and in a chair for several
hours" and "up and walking to the extent the patient is able"
will keep them from developing a prolonged and deeply congestive
case of community acquired pneumonia and is conducive to their
longevity. Medicare won't even pay for it, instead it lets
them get sick while sedentary, then treats them with medicines
and related treatments, rather than supporting diagnostic
therapy such as daily physical exercise. It can get very
difficult keeping a Parkinson's patient moving. But, do it
anyway. One of the problems with Day Care for Alz and Park
sufferers is the facility sits them in a chair and lets them
sleep all day. Believe me, if your elder is sleeping all
day and not moving, you want to do something to change that, it
could be a death sentence. Sleep does not allow the body
to develop anaerobic or aerobic defenses to various illness that
are ultimately fatal.
backed by loving care.
Remember that your elder has wants like you. It helps to
entertain them. Just leaving a TV running is not optimal.
My Dad loved classics, so we played Beethoven, Mozart, etc.
When I asked him even as he laid dying if the music was great,
he'd dig up a heartfelt "yeah!" Talk with them, tell them
where you are going, what you are doing, don't keep secrets from
them, even if they suffer from Dementia. You'd be
surprised what a person with Dementia is capable of
comprehending. Read to them. I brought in New Car
brochures and talked up buying Dad his next car (he had no
license, but the idea made him happy). I gave him books
and newspapers, even when he was no longer able to read, even
just looking at pictures seemed to make him happy.
REMEMBER: Take an active role in their being entertained, it
will be appreciated. If TV is present, watch shows WITH
the patient, don't ignore them, and don't just play the TV for
Remember when in a sub acute or other care facility, to ask the
Recreation Director to supply the appropriate music if your
Elder is or was a music fan, they will truly appreciate it.
At home, we put stereos were Dad sat and where he slept. I
will always remember his appreciation as long as I live.
afraid of taking action, but tread lightly around Doctors.
Doctors have us by the short hairs and they have very short
fuses and near hair triggers. Yet, we need to protect our
Elders from what is often the most unresponsive and misleading
form of medical care, geriatrics. Doctors don't know they're
being cruel, to them, if the life of the patient is extended,
that they traumatized the Elder near to death is not part of
their observation, they did their "job". They have a
different standard that says "procedure over patience". You
are the only voice your Elder may have in their camp, the only
family they have, do not be afraid of taking action. When
it comes to Doctors, be firm, not argumentative - they have
placed laws in each of the 50 states that lets them abandon a
patient with 30 days notice, if friction occurs, so avoid it in
order to keep from having what often happens, being left without
a Doctor. If you think the doctor is wrong in his treatment,
question, don't criticize, Doctors are among the most thin
skinned often prima donna-ish people in this country. They
can be incredibly insensitive, even ignorant (imagine having a
Doctor tell you that a Multivitamin has no benefit for someone
with infection, how many times have you heard that nonsense?)
Doctors will say to you, without a wince: "The Pharmaceutical
Industry controls the Medicine Profession" as if they are afraid
to anger them. They are. Don't you be. If you wonder if a drug
is right for your Elder, call the help number for that
Pharmaceutical from a Cellphone marked "private" to block
tracing, and question it. Don't give your right name, if
you think they might retaliate. As to the doctors, though: avoid
arguments with Nurses and Administrators, Doctors will not
reprimand them no matter how cruel they may be treating you or
the Elder, if the Doctor wants to drop your Elder. We had
a nasty nurse refuse to include me in Care Giver reviews with
one Dr., a Dr. in Warren, NJ, and he not only dropped me as a
patient because I dared complain after his Nurse, in her own
defense, accused me of being inappropriate, when one of my
Elders asked him to include me in the Care Giver reviews as I
was the PRIMARY CARE GIVER, he dropped her and my father, on
very short notice, after being their Doctor for 30 years. No
arguments, no friction, just a request and a complaint about a
nurse being confrontational over silliness. This was the
behavior from a doctor who was well regarded by all of us, and
the community. He bugged out. Remember that the Doctor has
to make references available and give you at least 30 days
notice IN WRITING before doing so. Nonetheless, we learned
rather quickly that even the slightest disagreement over
procedure, even though the Doctor was complete wrong, usually
leads to a swift boot out the door.
Over time, I'm going to work with the US and State Attorneys
General to insure that these "contract breach" laws that have
been adopted in the 50 states and make it impossible for a
patient to protest and likely that they will be booted if they
even make an error in following their Doctor's instructions are
legally invalidated and Doctors held accountable to patient
advocacy. And Doctors wonder why they're being sued all
over the place for malpractice? Because there are a number
who are malpractice-ing which invites likewise lawsuits that
compound the issue, as Doctors do not take the time. The
practice of medicine needs to be made more humane, the
environments in Hospitals and Rehabs need to be cleaner,
Hospital and Nursing Facility Air and Cleaning programs need to
be vastly improved to remove environmental bacteria and viruses
which spread through them like wildfire, Hospital Aides need to
have "English as a first or second language" tested and proven
prior to employment, Doctors need lessons in nutrition, the
facilities need Nutritionists with real knowledge of life
extending food provision, the list of changes needed are
endless. The "four food group's" and this bizarre "See no
Vitamins and Supplements, prescribe none, perish the thought"
approach to nutrition needs to come to an immediate end.
Doctors need an education in Nutrition and Life Extention,
because the ignorance possessed by a group of professionals,
which by their own admission, is imposed upon them by the
Pharmaceutical Industry, is appalling. Even the
Pharmaceutical industry needs a swift boot in the backside,
because the Supplements and Vitamins used, are COMPLIMENTARY to
their own products, and can safeguard the patient taking their
Prescribed Medications, reducing the risks every Pharmaceutical
firm faces with every drug they manufacture, if used properly.
The risk reduction VASTLY outweighs the prospect that a
particular drug might be obsoleted by a homeopathic. That
will likely never happen. The Pharmaceuticals should be
investing in the supplement companies, not banning their
products and threatening doctors over their use.
Extended is its own reward.
They gave my Dad 4-6 years to live in 1989-1990 when his
Alzheimer's became apparent. Between myself and my Mom,
with Dad's help, the three of us gave my Dad ten years more than
they predicted. During that ten years, Dad was with his
family frequently and with us daily, we could joke around even
with limits to his capacity, we did whatever together knowing
how sick he really was, he had his classical music, watched TV,
took walks in the park, chasing the Geese, and long walks
outside that became progressively shorter. There were
times he could lounge, books he actually read, newspapers,
participation in family get togethers, dinners and lunches out,
holiday celebrations and more. It was a living Hell on
earth for myself and my Mother to give up as much as we did,
particularly in the last few years, and particularly on the face
of abuses by Doctors, professional care facilities and some of
the less sensitive aides we had to cope with. My father
died after several days of holding on wanting to stay and be
with his family more, waiting until virtually every member of
his family was able to reach him and say goodbye, in a
semiconscious state, barely breathing yet perceptibly holding my
and my Mom's hands.
Dad died at 11:45 AM on a Friday in a VA Hospital were he had
been given excellent care, his heart finally gave out. He
had beaten repeated rounds of Klebsiella-pneumonia, chronic CDIFF,
Diarrhea, Proteus mirabilis, Scabies, Thrombotic Arm from a
poorly administered Pik catheter, all of which he had contracted
either in Union Hospital or in Cornel Hall Rehabilitation
Sub-Acute Center (part of Union Hospital, in Union, NJ, of the
St. Barnabas system, not to be confused with Cornel Medical
Center in NY). He was misdiagnosed and mistreated by an
extraordinarily ignorant Doctor at Cornell Hall who didn't take
the time to properly culture his illness to find out its real
cause, failed to diagnose proper antibiotic treatment, using
Zosyn 4 therapy to treat infections only responsive to Invanz,
using the wrong ones and treating him wrong with a Pik catheter
that penetrated his pericardium, and then, almost on a schedule,
discharging him sick as a
dog after expending literally all of his Medicare coverage, requiring us to take extraordinary steps as she and her
partner, his primary care physician, abandoned him and ceased
returning phone calls. She should be delicensed permanently and
legally punished, as should her training physician partner. Try as
we could, we found the system so lacking, that we have concluded
that many of the Doctors are in it for the Medicare payments and malpracticing (frenetically) to such a degree that they are,
quite simply, defrauding the patients, defrauding Medicare and
literally killing those they were supposed to be caring for,
through bad procedures, bad diagnostics, filthy peri-care, with
both good and bad doctors making the same fundamental mistake:
failing to do adequate lab work to isolate the cause of illness
and failing to schedule follow up lab work when discharged. They
are therefore using the wrong antibiotics, allowing these
community infections to run rampant throughout their medical
facilities, worsened by the fact that, in Union Hospital case,
it is a training hospital with higher than normal instances of
such infections. Do not take your patient to a training
hospital unless you absolutely have to. I wish I had know the
medical professions attitude towards "training hospitals" where
humanity is, well, basically a guinea pig.
As my father passed he pulled us closer to him with his last
gasp of breath. I will be haunted by my Father's death for
the rest of my life. To lose a loved one is, well, basically
heartbreaking, particularly after giving them 24x7 care for
many, many years. They almost become a part of you.
We went through bloody hell with the facilities (other than the
VA Hospital) and Doctors (other than the VA Doctors) who we
interacted with, and caring for him was literally Hell on earth,
as he deteriorated the last six months, our family is quite
close, and Dad was always the strong backbone of the family, it
hurt to see him treated inappropriately. We quite
literally threw ourselves physically between him and the abuses. The
system put us through hell, in being "active" care giver
advocates for him, during it all. And we even contracted and had
to be treated for several of these diseases from exposure in
those facilities. Mom had Norwegian Scabies, which in your
80's is life threatening, I contracted a lesser case, no less
torturing, and I developed a serious granuloma, from it,
requiring surgery. We both of us experienced such stress
and anxiety, we experienced heart palpitations, frequent chronic
extreme exhaustion, skin infections and trouble sleeping and
eating. We went through hell, for several years we simply got
very little sleep.
Yet: I'd do it all again. You only get one Father, and
mine was a particularly rare bird. It was worth whatever I
went through. However, I wish I had had the benefit of
THIS ARTICLE before I did. I wouldn't feel as if I'd let
him down on the face of the extreme negligence of Union
Hospital, Cornell Hall, and the practitioners there who
completely misdiagnosed and mistreated him. While it led
to his death, he passed from the natural causes of his
progressed age and stress on his heart.
As a Care Giver, I hope you now understand why I've written
about it. I will have a very difficult time ever forgiving
those medical professionals who were either blatantly negligent
nor obvious malpracticers. I will however authorize a vast
army of lawyers in my service to take legal steps to see to it
that their reign of terror over their elder patients is brought
to an end, nationwide, and that Elder Care becomes a matter of
proper, dignified treatment, careful and thorough diagnosis,
provision of comfort and quality of life, and so on.
During it all, no matter whether we were at home or in the last
year, in a health care facility, we managed to make my Dad
comfortable, keep him from the fear and horror that dying
ordinarily accompanies, and able to be with his family and enjoy
his music. He never once complained when we were there.
As I greeted him a few days before he passed, as sick as he was
he said: "that's the one!" He had 15 good years, and 1
where he became very ill, during which his family was with him,
and his life was extended, with quality and dignity and love.
A Life Extended is its own reward. Making all the effort
getting there worth it.
There will be more to come..., this document will
be updated with more information and resources. Check back.
And for those facing the responsibility of Care Giving an Elder: be
graceful, you are doing a blessed duty, we have an obligation to be
there for our families, as children, as spouses, as siblings, for
they are all we really have.