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Caregiver Basics

Caregiving Terminology – Words to Know

Advance directive? FMLA? ALF? LTC?

Many new caregivers are shocked and overwhelmed at all the unfamiliar terms they are suddenly faced with. For the average lay person, becoming a caregiver can means not just a crash course in nursing, but also in social work, insurance terminology and other intimidating subjects. These are some of the most frequent terms used. Occasionally a doctor or case worker may throw out an alternate term just to trip you up. Don't hesitate to ask them to clarify their meaning.

Caregiving is hard enough without having to learn a whole new language. Once you familiarize yourself with the basic terms though, you will find that negotiating healthcare and legal maneuvers for yourself and your loved ones will go much easier.

Types of Facilities

Maybe you aren't planning to care for a loved one at home. Perhaps a care facility is the best option for your needs. Although it sounds easy enough, there actually several different types of long-term living options for the elderly.

Adult Care Home (ACH) -- This is like a small, personal boarding house for elders. Much like assisted living facilities, an ACH is for the senior who needs some supervision and help with tasks, but not nursing care or round the clock assistance. Unlike assisted living, these homes may only house as few as two senior citizens at a time, and are often run by families.

Assisted Living Facility (ALF) -- Assisted living facilities are varied and diverse in their policies. Some encourage married couples, while others provide care and services only for those who qualify for the level of care offered.

Assisted living usually has medical services available, but not 24 hour like a skilled nursing facility. They may administer medications, serve meals, and provide a laundry service, or these tasks may be done in by the residents themselves in their own apartments.

It can be an option for those with early stage dementia or certain physical disabilities, but it is not always recommended. This is partly because ALFs can be costly. In cases where the resident is expected to need more intense care soon, it can be traumatic for the senior to move and reacclimatize twice.

Continuing Care Retirement Community (CCRC) -- Considered to be the best of all worlds, a CCRC has something for everyone. Instead of all care levels being contained in one building though, there are various facilities available--from skilled nursing to independent living--located on one campus. Not only does this allow a person to transition smoothly to a new facility when their needs increase, it allows couples who have different care needs to remain close together.

Since it is a community, it encourages residents (especially couples) to spend time together regardless of which facility they "live in".

Nursing Home (SNF) -- also known as a skilled nursing facility, a nursing home is more clinical. It focuses on the healthcare of the individual. Residents are usually those who cannot care for themselves any longer, nor can they care for themselves part time under supervision (such as at an ALF).

Adult Day Care (ADC) -- This is a facility or service offered to care for seniors during certain hours of the day. ADC's are very helpful for caregivers who work, as well as for those who just need a day off. Adult day care is similar to a children's day care--providing activities, places to rest, meals and snacks.

Other Types of Care

Home Health Care -- Home Health Agencies (HHA) send nurses and aides to the home to help seniors and caregivers. Aides may help with cleaning, meals, grooming, bathing, etc. Nurses will do general assessments, wound care and advanced care procedures (catheter care, IV's, oxygen, etc.)

Hospice -- Typically, hospice care is sent to the home, but sometimes elders are placed in a hospice house, hospital or nursing facility where the hospice aides and nurses will attend. Hospice providers tend to end-of-life care.

Elderly Sitters or Companions -- If a senior needs supervision during the day, but his or her caregiver must work or be away, a sitter or companion may be hired. Unlike home health aides that visit for only an allotted time, companions can be hired privately and will remain until the caregiver returns.

If the senior still lives in their own home, a live-in companion may be hired. This person may take over housekeeping duties as well as personal care activities.

The Paperwork

Taking care of your elderly loved one means paperwork. And more paperwork. If your loved one is no longer capable of making decisions, or if they assign someone else to make their legal and medical decisions for them, well...that means even more paperwork.

Here are some of the terms (and forms) you may meet.

Advance Directive -- a document written up by a person that states what he or she would like in regards to their future medical decisions. This is in the event that they might lose their capabilities to make those decisions for themselves at some time in the future.

Care Plan -- although it is rarely something you will see or need to understand, it plays an important role in your loved one's care. The care plan is written around your loved one's individual needs and includes strategies and procedures the medical staff believe are in your loved one's best interest.

Conservator -- term for a person who is court assigned to handle financial matters for a person who is no longer capable.

Do-Not-Resuscitate (DNR) Order -- this is usually part of the advanced directive. It is written by the doctor, in agreement with the patient's wishes, and tells other health professionals that the patient does not wish to receive CPR under certain circumstances.

In Iowa, an Out-of-Office DNR Order allows emergency care providers and others in settings outside the hospital to rely upon a physician-issued do-not-resuscitate (DNR) order for an adult individual in a terminal condition. Rules of the Iowa Department of Public Health further detail the out-of-hospital do-not-resuscitate (OOH-DNR) process. Immunities for acting consistent with the statute and rules are provided.

Durable Power of Attorney (POA) -- A contract that gives power to someone else in regards to financial decisions. For a caregiver, this document gives them the legal ability to arrange and pay for their loved one's care.

Durable Power of Attorney for Health Care (DPOAH) -- The senior citizen delegates the right to make decision for their health care to another.

Executor -- Person responsible for carrying out the demands cited in a will.

Guardian -- Usually, but not always, the caregiver. A guardian is the person who is responsible for all legal, financial, and medical decisions for the senior who is no longer capable of making those decisions rationally.

Ombudsman -- Investigator who answers complaints about quality of care in care facilities.

Adult Protective Services -- just like child welfare, this service is in place to investigate potential cases of neglect and abuse to the elderly. They can also be notified if an elder has become violent enough to harm caregivers.

Family and Medical Leave Act (FMLA) -- a law stating that an employer is entitled to 12 weeks of unpaid leave per year to care for a close family member.

Miscellaneous Terms

Without any special category, you may hear a term thrown at you that doesn't sound particularly important at the time. For instance, if a facility agrees to allow your loved one use of durable medical equipment, you might be surprised later to find out that those items have to be to returned.

Durable Medical Equipment (DME) --Beds, walkers, wheelchairs, lifts. Basically any equipment that can be reused from patient to patient. Insurance may cover the purchase, or just the rental fees for certain pieces of durable equipment.

Clinical Trials -- A monitored experiment in which new drugs or treatments are used. The elderly who participate in such studies will usually have their healthcare monitored for free.

Palliative Care -- refers to whole-body care of those with a progressive or incurable illness. Includes emotional and spiritual health.

Activities of Daily Living (ADLs) -- a term used to define the basic activities a person does for themselves under normal circumstances, such as bathing, dressing and eating.

Autonomy -- the ability to make independent choices about one's own care. Many care facilities now strive to help elders maintain as much autonomy as possible.

Enteral Nutrition -- term used to describe food, water, electrolytes, or certain medications administered through intravenous lines or tubes that lead to the stomach.

Home Infusion --term for medications or fluids administered directly to blood stream of certain patients. Also called Infusion Therapy.

Respite Care --a service that provides temporary care for a person and relief to caregivers.

Holistic Approach -- a modern view of medical practice that takes the whole body into account rather than just the most obviously affected area. For example, someone with severe diabetes required an amputation, the holistic approach to medicine would mean not just performing the surgery, but would also involve physical therapy, emotional counseling, dietary counseling and more. It might even include alternative and natural approaches to healing, such as massage, herbs, and hydrotherapy.