A Charitable Research Foundation Devoted to Education, Consumer Protection, Scientific Advancement and Freedom...

  document Index | first magazine Section | main Archives

                                 about donations join H home media i about ( contact   

The Patient-Advocate Panther's Guide to
Elder Support and Home Care
(note 1)
   by Anonymous

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.  During 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 2006.

The outcome 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.

However, 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.
 

BED RIDDEN,
TENDER CONDITION
and LATE STAGE
DEMENTIA
ELDER CARE.

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.

  1. What you'll 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.

    Reusable White 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.

    Absorbent Paper 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.
     

  2. How to insert and remove the pads, sheets, blankets, bathe and turn.

    a.  TO 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.

    b.  Removing "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.

    c.   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.  Voila!

    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 process. Voila!

    e.  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.
     

  3. Avoiding Infection.

    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. 

    CAUTION: Moisture 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 for starters.

    DIAPERS. In 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.

    SHIELDING.  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.

    STERILE WATER.  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 Nurse Practitioner.

    GLOVES.  Get 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 of Pneumonia. 

    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.
     

  4. Food Recommendations. 

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.

a.  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.

b. Vitamin Supplements.  A good consultation with http://www.garynull.com 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.

c. Institutions 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.

d.  Gastric 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 as http://www.garynull.com, to find out more about proper use of Pro-biotic Supplements.

e. Allergies. 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 effort.

  1. Preventing Pneumonia: 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 death decision.
     

  2. Exercise: the 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.
     

  3. Entertainment 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 sound value.

    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.
     

  4. Don't be 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.
     

  5. A Life 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.
 

 

OFFICIAL NOTICE: The opinions expressed in this article are not necessarily those of ACSA or its Board which neither endorses, nor necessarily agrees or disagrees with it. Please refer to NOTE 1.

NOTE 1:  Before attempting to provide Home Care for an elder patient or family member, meet with your elder's Doctors, Nursing Professionals, Social Services Personnel and the Hospice and/or Home Care programs of your local Hospital, VA Facility, or Clinic, and obtain SKILLED COUNSELING AND GUIDANCE. 

 
Search our website or the internet:    

Google
web     ACSA

Copyright 2005  American Computer Science Association Inc., ("ACSA") Please review our usage and legal pages listed above. In addition to traditional web presence role, this website also contains published content in a news and research format obtained from third parties, for which ACSA disclaims responsibility. ACSA is a charitable public interest research group and tax exempt private foundation under U.S. I.R.C. 501(c)3. Your donations may be exempt from federal or other taxation, however: please consult with your CPA or other Tax Counsel for further information.   General Contact: email us, or:

ATN: Andrew Vanoceur, Chairman,
General Delivery Box ACSA,
Los Alamos, New Mexico 87544-9999 USA
866-836-1932

a l w a y s   u n d e r   c o n s t r u c t i o n