Saturday, April 27, 2019



     A good fraction of the work that needs to be done in caring for a patient in the home is “custodial,” the kind of care that might be needed for a healthy baby, rather than “nursing,” the kind of care that requires the training that nurses undergo that makes them medical professionals. This appendix is based on a summary of a book that provides excellent instruction in the elements of custodial home care. We strongly advise caregivers to obtain it.

In 2015, Tena L Scallan published her excellent The Ultimate Compassionate Guide to Caregiving: A Simple Blueprint for Dealing with Today’s Healthcare Crisis Combined with Years of Wisdom and Sound Advice, filled with valuable advice, based on her decades of experience running an agency providing care at home. It has been available as a Kindle ebook for $2.99 and as a 407-page paperback for $14.30. She notes that 1 in 8 Americans are 65 or older, and often children end up taking care of their parents and even their grandparents at a time when both husband and wife may well have jobs outside the home.

Scallan sees the need for practical advice for caregivers, and her book provides it, centering on what needs to be done and how to do it, rather than on how to manage it. It makes an excellent companion to our own book.

Scallan starts her book with a set of “absolutes for giving patient care”–never argue, instead agree; don’t try to reason, instead divert; don’t shame them, instead distract; don’t lecture, instead reassure; don’t say “remember,” instead reminisce; don’t say “I told you,” instead repeat it; don’t say “you can’t,” instead do what you can; don’t command/demand, instead ask/model; don’t condescend, instead encourage/praise; don’t force, instead reinforce.

Scallan lists these principles of care: safety for yourself and your patient; privacy; dignity; communication, explaining everything as you go along; independence; infection control; being a good listener; being trustworthy; dependability; anger management; managing your own emotions.

Scallan’s fine book has the following chapters:
§  Communication
§  Hygiene and Personal Care
§  Medication
§  Patient Care Records
§  Vital Signs
§  Caring and Maintaining a Healthy Environment
§  Nutrition
§  Body Mechanics and Transferring
§  Infection Control
§  Safety
§  Medical Emergencies
§  Emotions
§  Legalities
§  Insurance
§  Expenses
§  Informational Documentation Planner
§  Resource Guide
§  Glossary

We will summarize Scallan’s advice, chapter by chapter. When our patient was paraplegic, needing the care provided by a home health aide rather than by a nursing staff, this book would have been exactly what was needed. In several cases, we employed aides who were experienced but lacked formal training, and the insurance company required that we have a nurse certify that they were able to perform the necessary care-giving activities. Having this book available for their instruction would have been a blessing. Much of the care Scallan describes is needed by patients who are receiving skilled nursing care as well.

Communication is more than speaking and listening, Scallan notes. Caregivers must give considerable thought to how they are going to present their message to their patients. Getting to know your patient helps. Speaking loudly and slowly and face-to-face is also advisable. Maintain eye contact; ask questions to be sure that the messages are being understood.
Although the patients are often as dependent as children, usually their mental abilities are much greater, so it’s important not to be patronizing, not to talk down to them. Empathize with their loss of control over familiar aspects of their lives. Keep it as simple as practical, changing the subject if you note frustration. Realize memory may not be as good as at once was.

Hygiene and Personal Care
There can be a variety of reasons why the patient may be unable to perform many of the usual tasks for personal hygiene. The caregiver has got to supply these, with patience and consideration, maintaining the dignity of the patient. Scallan gives detailed instructions here for mouth care, bathing, back rubs, manicures and pedicures, hair care, shaving, glasses and contact lenses, hearing aids, dressing and undressing, and adult diapers and associated skin care.

Medications include chemicals that require a doctor’s prescription and others that are available without one, “over-the-counter (OTC)” medications. Scallan emphasizes the need to follow the medical instructions scrupulously, including the amounts, the timing, the routes of supplying, careful medical record keeping, expiration dates, warnings, patient reactions to the meds.

     In boldface capital letters Scallan issues the following alert however:

This warning is for practical and legal reasons, and it is one of the ways in which custodial care is distinguished from skilled nursing care. Tips are provided for the healthcare workers for the administration of the medications already prescribed and prepared. Eye, ear, and nose drops need careful techniques, too, given by Scallan. All medications should be recorded: time, date, medication, dose, how given, and the caregiver initials.

Patient Care Records
As Scallan notes, “every patient has a care record. This is a permanent written record containing confidential information that serves many purposes:” documentation of the work done, progress, communication among caregivers, basis for evaluating success of the plan, making available information as history for later examination, providing a basis for examining billing.
Detailed guidelines for head-to-toe examination are given. These include observation of appearances and of performance. The ability to perform the routine Activities of Daily Living is noted, as well as the need for assistive equipment.

Vital Signs
The following are defined in Scallan’s section on vital signs: temperature, fever, thermometer, pulse, respiration, blood pressure; the normal ranges for many of these are given, along with the materials and methods used in measurement. Helpfully, the values of some of these measurements that would necessitate contacting the doctor’s office are listed. These include temperature, pulse rate, blood pressure, and respiration rate. Scallan emphasizes the necessity of care and cleanliness in taking the patient’s vital signs.

Caring and Maintaining a Healthy Environment
To prevent chemical contamination and to help reduce the risk of infection, the home itself must be kept clean. A wide variety of cleaning supplies will be required. Both disinfecting and cleaning solutions must be employed. The kitchen and dishes and silverware must be kept scrupulously clean. Changing the bed linens while the bed is occupied requires special technique. Laundry can present a challenge. Advice is presented for cleaning urine and fecal stains.

For home care given by family and home care aides, nutrition will be much the same as done for the family routinely, unless special circumstances apply.  Scallan provides valuable information, summarizing much dietary/nutritional material.
Certain handicaps, such as blindness or difficulty with using the hands or arms, will require special feeding approaches.

During periods of skilled nursing care, everything that is ingested will be determined in conjunction with the medical team.

Body Mechanics and Transferring
Moving the patient, even moving the equipment associated with patient care, is done more safely if attention is given to technique. Scallan gives tips for exercises by the patient as well as step-by-step instructions for proper handling of the patient during movement from one area to another, such as from bed to floor or from chair to standing up. Back injuries are endemic in the caregiving professions, so proper technique, good body mechanics, is essential.
Bedridden patients require frequent movement to prevent bedsores and promote independence.
A wide variety of assistive devices is available, and their use is well described here.

Infection Control

     Germs are everywhere, including your body, your clothes, your home, household surfaces, etc. Cleanliness is the first-line of defense, especially hand washing. In some cases, gloves and face masks may be required.

Scallan focuses on “how to reduce your chances of becoming a crime victim.” She includes various forms of physical attack and scams.

Medical Emergencies
Scallan provides a strong disclaimer at the beginning of this section, as dealing with medical emergencies presents risk to the caregiver as well as to the patient. No attempt will be made here to summarize her information, for the same reasons.

Emotions have developed partly to enhance our survival chances: fear, need, loneliness, even love play roles. Decision making is aided and harmed by emotions; you must care, but not be paralyzed with fear. Emotions help us set boundaries between ourselves and others, with both positive and negative impacts. Emotions assist our communications. We need both happiness and occasional sadness to feel alive. They help us bond with others.

Managing negative emotions can be aided by identifying them clearly and then determining whether the feeling is healthful. If not, ask what would help. In communicating them: don’t be dramatic, nor let them build up, present them succinctly, avoiding placing blame, and if possible try to diffuse confrontation by offering the other person the opportunity to “safe face,” to back down gracefully. Disappointment arises when reality confronts illusions. Bitterness is extreme disappointment. The patient’s expectations may have been quite unrealistic, however, as may have been the caregiver’s. Discouragement is self-defeating, though understandable.

     Positive emotions include hope, love, affection, friendliness, resiliency, forgiveness, and understanding. Help the patient to focus on these, if possible.
Sometimes, laughter is the best medicine.

Useful legal documents include: letter of instruction, living will, power of attorney, reverse mortgage, long-term care insurance policy, do not resuscitate (DNR) order…and we end this list to quote Scallan, as we agree with her concern, “Inconsistent application of DNR orders means some patients get less-than-optimal care once providers are aware of the presence of a DNR order. There still needs to be more study on this issue, but some health-care providers will even disregard basic care to patients with DNR orders. Because of these issues, for anything other than a terminal diagnosis – like cancer or some end-stage chronic conditions – getting a DNR order may not be the right decision.” Neither of our two home-bound patients had a DNR order.

Common options for medical insurance include Medicare Part A, which is hospital insurance; Medicare Part B, which is insurance for most other medical services, Medicare Part C, sometimes called Medicare Advantage, which allows you to receive your care through a provider organization; and Medicare Part D, prescription drug coverage. We discuss these elsewhere in our book. Besides these options there are various private insurance plans, including those provided by businesses and other organizations. Disability insurance can be viewed as a form of medical insurance. Related forms of compensation include Veterans’ benefits and Workman’s Compensation. Scallan helpfully provides much detail on all of these.

Scallan gives extended advice on managing money during retirement.

Informational Documentation Planner
Scallan presents a detailed form that goes into specifics on recording essentials related to: emergency information, important contact numbers, healthcare contacts, family and friends, services, and numbers and access codes, medical history, family genealogy, bank accounts, foreign bank accounts, automatic bill paying, personal loans, savings certificates, savings bonds, stock certificates, safe-deposit boxes, cash on hand, home safe, credit union, pension, retirement account, and duties, will, trust, living will, durable power of attorney, durable power of attorney for medical care, letter of instruction, religious affiliation, funeral instructions, donor arrangements, autopsy arrangements, cemetery plot, Social Security information, military discharge papers, income tax filings, passport, driver’s license, birth certificate, adoption papers, naturalization papers, marriage license, divorce decree, credit cards, Medicare/Medicaid, health insurance policies, long-term care insurance policy, life insurance policy, disability insurance policy, homeowners insurance policy, auto/vehicle insurance policies, vehicle ownership, real estate ownership, school records, employment history, pet history, with some detailed sub entries for all of these.

Resource Guide

Scallan gives the address and phone numbers and a brief description for each of the following:

§  Administration on Aging
§  Aging Network Services
§  American Association of Homes for the Aging
§  American Association of Retired Persons (AARP)
§  American Geriatrics Society
§  American Health Care Association
§  American Society on Aging
§  B’nai B’rith International
§  Catholic Charities
§  Catholic Golden Age
§  Children of Aging Parents
§  Disabled American Veterans
§  Episcopal Society for Ministry to the Aging
§  Foundation for Hospice and Home Care
§  Gray Panthers
§  National Association for Home Care
§  National Association of Area Agencies on Aging
§  National Association of State Units on Aging
§  National Council on the Aging
§  National Hispanic Council on Aging
§  National Hospice Association
§  National Institute on Aging
§  National Shut-in Society
§  Older Women’s League
§  U.S. Office of Disease Prevention and Health Promotion
§  United Way of America
§  Veterans Administration
§  Volunteers of America

Scallan follows this with similar information on more organizations, categorized by their specific areas of concern: Alzheimer’s disease, arthritis, cancer, caregiving, dental health, diabetes, foot care, health, hearing impairment, high blood pressure, housing/long-term care, incontinence, legal issues, medications, nutrition, osteoporosis, safety, stress, stroke, vision. Next, she gives addresses and telephone numbers for the state offices of aging, from Alabama to Wyoming.

The last third of Scallan’s The Ultimate Compassionate Guide to Caregiving is over one-hundred pages of Glossary, giving in-depth definitions of relevant terms.

To repeat, this is an extraordinarily fine book, which makes a fine companion to ours. Scallan’s is directed primarily toward how to provide custodial care, generally given by those who are not nurses, and ours deals primarily with managing nursing care. In the home situation, custodial care may be being supplied by the family even as nursing care is being supplied by nurses, so that both books may be of use.

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