Navigating Care Choices is Hard Work

Why does it have to be so difficult? When we are in “the situation” of navigating care choices for a loved one, it is hard enough. Now imagine you being older and trying to navigate care choices – what comes to mind?

Fix it comes to mind immediately for me!! Realistically, it is important to understand the lingo – the phrases and acronyms to prepare for our older loved ones and ourselves. Here we go! The following is a primer for you to learn!

EOB’s (Explanation of Benefits) from medical insurance and/or Medicare for my parents was an eye opener. EOB’s aren’t on the AARP list (below), yet I found them very helpful to reconcile billing for mom and dad. They contain:

  • The services provided (to the patient)
  • What the doctor or hospital charged (all charges)
  • What your insurance covered and did not cover
  • What your insurance agreed to pay
  • The amount you must pay (amount you are responsible for)

ADL’s are the Activities of Daily Living including:

  • Self-feeding
  • Functional Mobility
    (moving while performing activities, getting in and out of bed, in and out of a chair)
  • Dressing
  • Bathing or Showering
  • Personal Hygiene
    (includes brushing/styling hair, shaving, grooming activities)
  • Toilet Hygiene
    (includes getting to the toilet, self-cleaning, getting up from the toilet)

AARP has a comprehensive listing (75 terms!) of acronyms for Caregivers: https://www.aarp.org/caregiving/basics/info-2019/caregiver-glossary.html Here is a recap of their list:

• Activities of daily living (ADLs). The actions a person must do by themselves to engage independently in everyday life, including bathing, dressing, eating, being mobile, moving from bed to a chair and using the toilet.

• Acute care. Medical care given for a short time to treat a specific illness or condition. This can include doctor visits, short hospital stays or surgery.

• Adult care home, also called adult family-care home (AFCH) or group home. A small assisted living residence where employees provide for disabled adults or seniors who need help with certain tasks but want to remain as independent as possible. They are an alternative to more restrictive, institutional settings, such as nursing homes, which provide 24-hour nursing care.

 Adult day careCenters that provide companionship and help to older adults who need supervision during the day. The programs can help give a break to a round-the-clock caregiver.

 Advance directives. Written statements that communicate individuals’ medical preferences if they are unable to make their own health care decisions. Two types are possible: 1) A living will spelling out the types of medical treatment they want at the end of life if they are unable to speak for themselves. 2) A health care proxy, who is appointed as a health care agent — or attorney-in-fact — to make health care decisions on their behalf. That appointee becomes the individual’s spokesperson on medical decisions set out in the document if the ability to communicate is lost.

• Alzheimer’s disease. A type of progressive mental deterioration, affecting memory and the ability to process thoughts, that is one form of dementia.

 Assisted living facility (ALF). Housing for those who may need help living independently but do not need skilled nursing care. The level of assistance varies among residences and may include help with bathing, dressing, meals and housekeeping.

• Assistive technology devices. Products that improve a person’s ability to live and function independently. Low-tech assistive devices include canes and pill organizers, and high-tech items include electric wheelchairs, hearing aids and smartphones.

• Cardiologist. A medical doctor who specializes in heart disorders.

• Chronic disease. A condition that lasts one year or more and either requires ongoing medical attention or limits a person’s ability to bathe, care for themselves, dress, eat or walk.

• Cohousing. A small planned community in which single-family homes, townhouses or rental units are clustered around amenities such as a community kitchen and dining room, common areas for sitting, craft and meeting rooms, gardens and potentially adult and child day care. The goal is to design a neighborhood where people of all ages and family statuses can rely on the informal, mutual support of neighbors to help out.

• Comorbidity. The presence, or coexistence, of more than one disorder in the same person. They can occur at the same time or one after the other. Interactions between the illnesses can worsen the course of both.

• Competence. In a legal sense, a person’s ability to understand information, make a choice based on that information and communicate that decision in an understandable way.

• Conservator. A person whom a court appoints to handle someone’s affairs when that person cannot do the job. Usually, a conservator handles only finances.

• Consumer-directed personal assistance program. A Medicaid program available in several states that permits chronically ill and physically disabled people to choose, train and supervise workers who help them with activities of daily living such as bathing, light housework and meal preparation so they can remain in their homes. Some relatives and friends of the recipients of the program can qualify to be paid through this program.

• Continence. The ability to control bowel and bladder function.

 Continuing care retirement community (CCRC). Housing that offers a variety of living options and services — including independent living, assisted living and skilled care, often all on the same campus — and is designed to meet a person’s changing needs.

• Copayment. Sometimes called copays. A fixed amount — $20, for example — that one pays for a covered health care service after payment of the deductible. Let’s say your health insurance plan’s allowable cost for a doctor’s office visit is $100. Your copayment for a doctor visit is $20. If you’ve paid your deductible, you pay $20, usually at the time of the visit. If you haven’t met your deductible, you pay $100, the full allowable amount for the visit.

• Custodial care. Nonmedical care that helps individuals with bathing, dressing and other basic care that most people do themselves, such as using eye drops. It can occur in a range of environments including adult day care, assisted living centers and residential care facilities.

• Delirium. Short-term confused thinking and disrupted attention usually accompanied by disordered speech and hallucinations.

 Dementia. A general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is an example. Alzheimer’s is the most common type of dementia, but not all dementia comes from Alzheimer’s disease.

• Dermatologist. A medical doctor who specializes in skin disorders.

• Discharge planner. A professional who assists patients and their families in developing a method of care for a patient following a hospital or nursing home stay.

• Do not resuscitate (DNR) order. A type of advance directive in which a person states that health care providers should not attempt to restart the heart through cardiopulmonary resuscitation if the heart or breathing stops.

• Durable power of attorney. A legal document that gives someone you choose the authority to act financially, legally and medically in your place even if you become incapacitated and unable to handle matters on your own. It remains in effect until the person who grants it either cancels it or dies.

 End-of-life doulaalso known as a death doula. An individual who provides nonmedical comfort and support to a dying person and their family. This may include education and guidance as well as emotional, spiritual or practical care.

• Endocrinologist. A medical doctor who specializes in hormonal and metabolic disorders, including diabetes.

• Extended care. Short-term or temporary care in a rehabilitation hospital or nursing home with the goal of returning a patient home.

 Family and Medical Leave Act (FMLA). A federal labor law that provides certain employees with up to 12 weeks per year of unpaid job-protected leave to accommodate some family and medical situations. It also requires that their group health benefits be maintained during the leave.

• Family or informal caregiver. Any relative, partner, friend or neighbor who has a significant personal relationship with and provides a broad range of assistance for an adult with a chronic or disabling condition.

• Gastroenterologist. A medical doctor who specializes in digestive disorders.

• Geriatric care manager, also called an aging life care professional. A specialist who assesses a person’s mental, physical, environmental and financial conditions to create a care plan to assist in arranging housing, medical, social and other services.

• Geriatrician. A medical doctor who has completed a residency in either family medicine or internal medicine and focuses on older adults.

• Guardianship. A court-sanctioned legal relationship in which a person is given legal authority over another when that other person is unable to make safe and sound decisions regarding his or her person or property.

• Health care proxy. A type of durable power of attorney in which people appoint another person to make health care decisions for them if they become unable to do so.

• Hematologist. A medical doctor who specializes in blood disorders.

• Home health agency. A company or nonprofit, often certified by Medicare, to provide health-related services — such as nursing; personal care; social work; or occupational, physical or speech therapies.

 Home health aide (HHA)A trained and certified health care worker who provides assistance to a patient in the home with hygiene and exercise and light household duties such as meal preparation. The worker also monitors a patient’s condition.

• Homemaker services. Light housekeeping, meal preparation, washing clothes, shopping assistance and escort tasks that state-certified agencies provide to help people who need assistance in their homes. Medicare does not cover these services, but some states’ Medicaid programs do allow low-income adults to qualify for financial assistance.

 Hospice care. A treatment program that focuses on a person’s psychological well-being and symptoms of a disease instead of the disease itself for those who have an advanced, life-limiting, often incurable illness. It is considered a type of palliative care. A team of professionals works to manage symptoms so a person’s last days may be spent with dignity and quality, surrounded by loved ones.

• Incontinence. Inability of a person’s body to control bowel or bladder functions.

• Independent living. An age-restricted option for a house, condominium or apartment — sometimes offered as part of a continuing care retirement community — that has few services as part of the basic rate. Those that are included are more often related to convenience, such as grass cutting or a clubhouse.

• Informed consent. The process of making decisions about medical care or medical experimentation based on open and honest communication among the health care provider, the patient and the patient’s family.

• Licensed practical nurse (LPN). A person who has completed nursing or vocational training and obtained a state license that authorizes the person to take care of basic duties in settings such as hospitals, nursing homes and long-term care facilities.

 Living willA legal document in which the signer requests to be allowed to die rather than be kept alive by artificial means if disabled beyond a reasonable expectation of recovery.

• Long-term care insurance. This coverage can pay part of the cost of care received in the home, an assisted living residence, a nursing home, or for other designated services depending on the policy.

• Long-term care ombudsman. An advocate for residents of nursing homes, residential care homes and assisted living facilities. Ombudsmen are trained to resolve problems; they provide information on how to find a facility and what to do to get high-quality care.

• Meals on wheels. A service that delivers daily hot meals to the homes of elderly or disabled people.

• Medicaid. A type of American health coverage for eligible low-income adults, children, pregnant women, elderly adults and people with disabilities. States administer Medicaid according to federal requirements. States and the federal government jointly pay for the program.

• Medical doctor (M.D.), also called an allopathic physician. A health care professional who has graduated from an approved medical school, received additional training in a hospital, passed a federal medical licensing exam and qualified for a state license. Specialists must complete an additional three to nine years of postgraduate work in their practice area.

 Medicare. A federal government program that provides medical insurance if you are 65 or older, younger than 65 and receiving Social Security Disability Insurance for a certain amount of time, or younger than 65 and diagnosed with end-stage renal disease (ESRD). Medicare Part A is hospital insurance, and Medicare Part B covers certain doctors’ services, outpatient care, medical supplies and preventive services.

• Medicare Advantage, also called Medicare Part C. Medicare beneficiaries receive Medicare-covered benefits through private health plans instead of through original Medicare. The plans often include additional benefits such as prescription drug coverage, dental and vision coverage, and even gym memberships. Enrollees pay Part B premiums plus the premium for their Medicare Advantage plan. Some Medicare Advantage plans have no premium at all, leaving the beneficiary to pay only the Part B premium.

• Medicare Savings Program (MSP). A federally funded program administered through each state for people with limited income and resources that helps pay some or all of their Medicare premiums, deductibles, copayments and coinsurance. Four types of MSP are available: Qualified Medicare Beneficiary (QMB) for people also enrolled in Medicaid; Specified Low-Income Medicare Beneficiary (SLMB), which helps pay for Part B premiums only; Qualifying Individual programs (QI and QI-1), which have slightly higher income limits but still help pay for Part B only; and Qualified Disabled & Working Individuals (QDWI), which helps pay for Part A premiums.

• Medicare telehealth services. Use of interactive two-way telecommunications to provide some medical services, including office visits, psychotherapy and consultations from an eligible provider who isn’t at your location. In 2019, these services are available in rural areas under specified conditions. Starting in 2020, Medicare Advantage plans may offer more telehealth benefits than original Medicare, benefits will be available no matter where you’re located, and you can use them at home instead of going to a health care facility.

• Medigap policies, also called Medicare Supplemental Insurance. A private health insurance coverage designed to pay for costs not covered using original Medicare. Depending on the plan, these costs can include some of what you would spend for copayments, coinsurance and deductibles, as well as services original Medicare doesn’t cover, such as travel outside the United States.

 Memory cafe. A gathering place that provides a safe and supportive environment where individuals with dementia or other brain disorders and their caregivers can socialize, provide mutual support and exchange information.

 Memory care communities. Separate facilities or specialized units of an assisted living center that focus on helping people with Alzheimer’s disease and other forms of dementia, where the staff is specifically trained to deal with recall problems and other impairment.

• National Family Caregiver Support Program (NFCSP). A grant program to states and territories to support a range of projects, such as respite care, that assist caregivers in helping their loved ones at home for as long as possible.

• Nephrologist. A medical doctor who specializes in kidney disorders.

• Neurologist. A medical doctor who specializes in nervous system disorders.

• Nurse practitioner (NP), also known as advanced practice registered nurse (APRN). A primary-care provider with graduate training in advanced practice nursing who has the authority to order tests, write referrals and prescribe medicines.

• Nursing home. A public or private residential facility providing a high level of long-term personal or medical care for chronically ill and older people who are unable to care for themselves properly.

• Oncologist. A medical doctor who specializes in cancer treatment.

• Ophthalmology. A medical doctor who specializes in eye disorders and surgery.

• Orthopedic surgeon or orthopedist. A medical doctor who specializes in bone and connective tissue disorders.

• Osteopath (DO), also called a doctor of osteopathic medicine. A doctor who has completed four years of medical school and has had 300 to 500 additional hours in the study of hands-on manual medicine and the body’s musculoskeletal system. These doctors are state licensed and may have completed a two- to six-year residency and passed state examinations to become board certified.

• Otolaryngologist or otorhinolaryngologist. A medical doctor who specializes in ear, nose and throat (ENT) problems.

• Outpatient care, also called ambulatory care. Health services provided without overnight hospitalization as compared to in the home or in a clinical setting.

• Palliative careThe goal of palliative care is to help people with serious illnesses feel better. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Hospice is one type of this care, but it also can be given at the same time as treatment to try to cure a disease.

• Patient advocate. A professional who can resolve concerns about someone’s health care experience, particularly problems that cannot be taken care of immediately.

• Personal care services (PCS). A broad term used to refer to help with personal hygiene and other self-care, such as bathing, dressing, eating, going to the bathroom, maintaining personal appearance and walking. Some programs also can include help with meal preparation, grocery shopping and money management.

• Personal emergency response system (PERS), also known as a medical alert system. An alarm system designed to permit an individual to signal, by pushing a button, a medical or personal emergency they are experiencing. Such systems feature three components: a small radio transmitter, a console connected to your telephone, and an emergency response center that monitors calls. Transmitters tend to be lightweight, battery-powered devices that you wear around your neck, on a wrist or on a belt, or keep in your pocket.

• Physician assistant (PA). A health care professional with a master’s degree who works in collaboration with a medical doctor or doctor of osteopathic medicine, often in a primary care setting.

• Podiatrist (DPM). A doctor with specialized training in treating foot and ankle problems.

 Power of attorney (POA)A legal document that gives someone you choose the authority to act onyour behalf, usually on financial matters.

• Primary care physician (PCP). The doctor that you see first for checkups and health problems. Sometimes these health care professionals specialize in family practice for all ages, internal medicine for adults and pediatrics for children.

• Psychiatrist. A medical doctor who specializes in emotional and mental disorders.

• Psychologist. A specialist, but not a medical doctor, who can talk with patients and their families about emotional and personal matters and can help them make decisions.

• Radiologist. A medical doctor who specializes in X-rays and related procedures such as computed tomography (CT) scans, magnetic resonance imaging (MRI) and ultrasound tests.

• Registered nurse (RN). A health professional who has graduated from a nursing program, passed a state board examination and has a state license.

• Rehabilitation hospital. A medical facility providing therapy and training for rehabilitation, which is the restoration to an improved condition of physical function.

• Remote patient monitoring (RPM). A subcategory of telehealth services that allows patients to use mobile medical devices and technology to gather patient-generated health data and send it to health care professionals. Common physiological data collected include weight, blood pressure and heart rate.

 Respite care. Short-term or temporary care of the sick or disabled for a few hours or weeks, designed to provide relief to the regular caregiver.

• Rheumatologist. A medical doctor who specializes in pain and other symptoms related to joints and additional parts of the musculoskeletal system that also includes bones, cartilage, ligaments, muscles and tendons.

• Senior center. A physical location providing opportunities for seniors to get active, enjoy various social activities and improve their overall quality of life.

• Skilled care. Nursing or rehabilitation services that a doctor orders and that licensed health professionals such as nurses and physical therapists provide.

• Social SecurityInitially conceived upon its passage in 1935 as economic insurance for retired workers 65 and older; benefits for a retiree’s spouse and minor children were added in 1939, and disability benefits were added in 1956. Benefits are based on payroll tax contributions made during a worker’s life, but the program itself uses current payroll tax receipts to pay benefits, sometimes dipping into the Social Security Trust Funds to finance a deficit.

 Social Security Disability Insurance (SSDI)A program that pays monthly benefits to workers no longer able to work because of a significant illness or impairment that is expected to last at least a year or to result in death within a year. Benefits are based on the disabled worker’s past earnings, paid to that person and dependent family members and reviewed periodically to make sure the disability continues to restrict a person from working. To be eligible, a disabled worker must have worked jobs where Social Security taxes were deducted from the paycheck.

 Sundown syndrome or sundowning. A state of confusion that occurs later in the afternoon and into the night. It is most often found in patients who have dementia or Alzheimer’s disease and includes a range of behaviors such as increased confusion, anxiety, agitation and sleeplessness.

• Supplemental Security Income (SSI). A program the Social Security Administration oversees that pays monthly benefits to people with limited income and resources who are disabled, blind, or age 65 or older.

• Surrogate. An individual appointed to act in place of another.

• Urologist. A medical doctor who specializes in disorders of the male reproductive system as well as the male and female urinary tract.

• Vital signs. Signs of life — specifically, a person’s heart rate (pulse), breathing rate, body temperature and blood pressure. They show doctors how well a person’s body is functioning.

Navigating the “big picture of aging” as you can see, is a big deal. Forewarned is forearmed. Breathe!

And, thank heavens there are terrific senior resources, education and specialists to help us. Check out people in your local area plus the online resources. AARP (above) and Aging in Place have information to help you begin. https://aginginplace.org/a-guide-to-caring-for-elderly-parents/

Is it time to ensure you’re ready? Email me with questions/comments: Lynn@thelivingplanner.com. For additional information my work, check out my website: https://thelivingplanner.com

The long weekend is here, make some time for you. –Lynn

#CareForPeople #StepInStepUp #LifeHacks

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