Being Prepared

Caregiving often comes with new responsibilities and unfamiliar tasks, yet most caregivers never receive education.  The following information may help you with a current situation or prepare you for what may happen.

Decision Making - Has the person you are caring for told you their wishes for end-of-life care?  In the event that you are asked to make or help make decisions it is important for you to talk about issues, including thoughts about potential life-prolonging treatments.  Advance directives are tools that enable people to write down their preferences on a legal form and appoint someone to speak for them if they are no longer able.  A living will, health care power of attorney, financial power of attorney, and a plan for funeral arrangements can help ensure peace of mind for the ill person as well as you, the caregiver. 

End-of-Life Care - Hospice is end-of-life care that involves a team-oriented approach to quality medical care, pain and symptom management, and emotional and spiritual support tailored to your needs.  Hospice is available to anyone who has a life expectancy of six months or less.  Hospice provides medical equipment and medications related to terminal illness.  Support is given to you as the caregiver, including social workers to talk to, nurses and aides to teach you how to provide hands-on care, volunteers to help lighten your load and non-denominational chaplains to aid with any spiritual issues and/or concerns.
 
Community Resources -- In addition to hospice, there may be other community resources that can help you and your family member or friend.  Your local Area Agency on Aging, the Eldercare Locator and other organizations may offer services to ease your burden.  These may include meals on wheels, caregiver training classes, transportation, friendly visitors and respite care so that you can have a break.  For more information, see the section below entitled What Resources are Available to Help Caregivers.

Home Modifications -- Home modifications include adapting the home to make it easier and safer for the person to be cared for in the home.  Installing grab bars in the shower, a stool riser for the toilet or a wheel chair ramp by the front door are just a few examples of accessible home modifications.  Your local durable medical equipment company (DME) or community organizations such as Centers for Independent Living or Area Agency on Aging may be able to assist you in finding a local organization to help.

You’ve just reviewed a few of the basics you should know as a caregiver, including how to be prepared for new responsibilities and tasks, providing physical and comfort care and some of the services that are available to help caregivers.

As you may have experienced, caring for a family member or friend is not easy, nor is it something most of us are prepared to do.  Like most people, you have probably had questions about your family member or friend’s illness or condition, and have spent time finding answers to those questions.

Now that you have learned about the basics of caregiving, and better understand how to provide care, there may still be times when you feel overwhelmed or unable to care for your family member’s or friend’s needs.

This section will give you information and practical tips for managing the stress of being a caregiver by attending to your personal needs.  Though they may seem selfish, these ideas will help you continue to provide care for as long as your family member or friend needs it.

Caring for the Caregiver:  Acknowledging You Need Assistance

Caregivers of chronically ill older persons or those with disabilities are generous, compassionate individuals. They care for family members or friends in the familiar surroundings of their own home or community.  These caregivers are “on call” 24-hours a day, 7 days a week because they want to see their family member or friend remain in the comfort and security of their own environment.  But at some point, even the caregiver needs a break, a rest, or a breather.

As caregivers, we sometimes become so involved in the day-to-day efforts to keep things going we may forget to let others know we need additional assistance with providing care, or just need a break from the routine of caring for someone. 

Some ways to make your needs known include:

• Work Options.  If you are a working caregiver, it is important to discuss your needs with your employer. Telecommuting, flextime, job sharing or rearranging your schedule can help to minimize stress. Increasingly, companies are offering resource materials, counseling, and training programs to help caregivers.
• Involve Older Children.  Older children living at home may be able to assist you and/or your older family member.  Such responsibility, provided it is not overly burdensome, can help young people become more empathic, responsible, and self-confident and give you needed support.
• Ask Others to Help.  You can and should ask other family members to share in caregiving. A family conference can help sort out everyone’s tasks and schedules. Friends and neighbors also may be willing to provide transportation, respite care, and help with shopping, household chores or repairs.

Create a list of things that need to be done, such as grocery shopping, laundry, errands, lawn care, housecleaning, or spending time with the care recipient, and put it on the refrigerator or near the front door.  If someone says, “let me know if there is anything I can do to help” you can point to the list.

• Take a break from caregiving.  Even if it is only 15 or 20 minutes a day, make sure you do something just for you.
• Exercise.  Most experts recommend at least 30 minutes, three times a week.  This is a great way to take a break, decease stress and enhance your energy.
• Eat healthy.  To help give you more energy, avoid foods that are high in:
  • Saturated fats
  • Sugar
  • Salts, chemical preservatives and additives
  • Calories
• Your health and nutrition is just as important as the person you are caring for so take the time to eat three nutritious meals a day.  If you have having difficulty do that, ask for help and get others to fix meals for you.
• Subscribe to caregiving newsletters or Listservs for advice/support.
• Attend a support group for caregivers.  Check with your doctor, hospice or local Area Agency on Aging for groups that meet for this purpose. See also Family Caregiver 101 for more about caregiver support groups.
• Seek professional help.  Many caregivers have times when they are lonely, anxious, guilty, angry, scared, frustrated, confused, lost and tired.  If you feel like these feelings are overwhelming you, call your doctor, hospice or another community resource (see below) for help.

Glossary of terms about end-of-life decision-making

Advance directive - A general term that describes two kinds of legal documents, living wills and medical powers of attorney. These documents allow a person to give instructions about future medical care should he or she be unable to participate in medical decisions due to serious illness or incapacity. Each state regulates the use of advance directives differently.

Artificial nutrition and hydration: Artificial nutrition and hydration (or tube feeding) supplements or replaces ordinary eating and drinking by giving a chemically balanced mix of nutrients and fluids through a tube placed directly into the stomach, the upper intestine or a vein.

Assisted suicide - Providing someone the means to commit suicide, such as a supply of drugs or a weapon, knowing the person will use these to end his or her life.

Benefits and burdens - A commonly used guideline for deciding whether or not to withhold or withdraw medical treatments. A benefit can refer to the successful outcome of a medical procedure or treatment. Outcomes can be medical (e.g. the heart beats again) or functional (e.g. the person is able to walk to the bathroom after being incapacitated by a stroke), or it supports the patient’s values (for example, the patient is able to die at home as he wished).  However, a benefit from one point of view can be experienced as a burden from another and might be viewed differently by doctors, patients and families. For example, if a patient is resuscitated and the heart starts beating again, this is a successful outcome from a medical point of view and a doctor may consider it a benefit. To the patient who is dying from a serious illness or disease, resuscitation may cause further injury and only contribute to the overall experience of suffering. This success, from the doctor’s point of view, might actually be experienced as an additional burden by the patient. Discussions of the benefits and burdens of medical treatments should occur within the framework of the patient’s overall goals for care.

Bereavement - The period after a loss during which grief is experienced. The time spent in a period of bereavement depends on how attached the person was to the person who died, and how much time was spent anticipating the loss.

Best interest - In the context of refusal of medical treatment or end-of-life court opinions, a standard for making health care decisions based on what others believe to be "best" for a patient by weighing the benefits and the burdens of continuing, withholding or withdrawing treatment. (Contrast with "substituted judgment.")

Brain death - The irreversible loss of all brain function. Most states legally define death to include brain death.

Capacity - In relation to end-of-life decision-making, a patient has medical decision making capacity if he or she has the ability to understand the medical problem and the risks and benefits of the available treatment options. The patient’s ability to understand other unrelated concepts is not relevant. The term is frequently used interchangeably with competency but is not the same. Competency is a legal status imposed by the court.

Cardiopulmonary resuscitation - Cardiopulmonary resuscitation (CPR) is a group of treatments used when someone’s heart and/or breathing stops. CPR is used in an attempt to restart the heart and breathing. It may consist only of mouth-to-mouth breathing or it can include pressing on the chest to mimic the heart’s function and cause blood to circulate. Electric shock and drugs also are used frequently to stimulate the heart.

Clear and convincing evidence - A high measure or degree of proof that may be required legally to prove a patient’s wishes. A few states require clear and convincing evidence that an incompetent patient would want to refuse life-support before treatment may be stopped unless the patient has completed an advance directive authorized by the state's law.

Do-Not-Resuscitate (DNR) order - A DNR order is a physician’s written order instructing health care providers not to attempt cardiopulmonary resuscitation (CPR) in case of cardiac or respiratory arrest. A person with a valid DNR order will not be given CPR under these circumstances. Although the DNR order is written at the request of a person or his or her family, it must be signed by a physician to be valid. A non-hospital DNR order is written for individuals who are at home and do not want to receive CPR.

Emergency Medical Services (EMS) - A group of governmental and private agencies that provide emergency care, usually to persons outside of health care facilities; EMS personnel generally include paramedics, first responders and other ambulance crew.

Euthanasia - The term traditionally has been used to refer to the hastening of a suffering person's death or "mercy killing". Voluntary active euthanasia involves an intervention requested by a competent individual that is administered to that person to cause death, for example, if a physician gives a lethal injection with the patient’s full informed consent. Involuntary or non-voluntary active euthanasia involves a physician engaging in an act to end a patient’s life without that patient’s full informed consent. See also Physician-hastened Death (sometimes referred to as Physician-assisted Suicide).

Grief - Grief is how one reacts to a loss.  Grief reactions may be experienced in response to physical losses, such as death or in response to social losses such as divorce or loss of a job.  All loss involves the absence of someone loved or something that fulfills a significant need in one’s life.

Guardian ad litem - Someone appointed by the court to represent the interests of a minor or incompetent person in a legal proceeding.

Incompetent - See "Capacity."

Healthcare agent - The person named in an advance directive or as permitted under state law to make healthcare decisions on behalf of a person who is no longer able to make medical decisions.

Hospice care - A program model for delivering palliative care to individuals who are in the final stages of terminal illness. In addition to providing palliative care and personal support to the patient, hospice includes support for the patient’s family while the patient is dying, as well as support to the family during their bereavement.

Intubation - Refers to "endotracheal intubation" the insertion of a tube through the mouth or nose into the trachea (windpipe) to create and maintain an open airway to assist breathing.

Legislation - Laws enacted by state or federal representatives.

Life-sustaining treatment - Treatments (medical procedures) that replace or support an essential bodily function (may also be called life support treatments). Life-sustaining treatments include cardiopulmonary resuscitation, mechanical ventilation, artificial nutrition and hydration, dialysis, and certain other treatments.

Living will - A type of advance directive in which an individual documents his or her wishes about medical treatment should he or she be at the end of life and unable to communicate. It may also be called a “directive to physicians”, “health care declaration,” or “medical directive.” The purpose of a living will is to guide family members and doctors in deciding how aggressively to use medical treatments to delay death.

Mechanical ventilation - Mechanical ventilation is used to support or replace the function of the lungs. A machine called a ventilator (or respirator) forces air into the lungs. The ventilator is attached to a tube inserted in the nose or mouth and down into the windpipe (or trachea). Mechanical ventilation often is used to assist a person through a short-term problem or for prolonged periods in which irreversible respiratory failure exists due to injuries to the upper spinal cord or a progressive neurological disease.

Medical power of attorney - A document that allows an individual to appoint someone else to make decisions about his or her medical care if he or she is unable to communicate. This type of advance directive may also be called a health care proxy, durable power of attorney for health care or appointment of a health care agent. The person appointed may be called a health care agent, surrogate, attorney-in-fact or proxy.

Non-hospital DNR Order - A physician's order that directs emergency medical providers and other healthcare workers not to attempt CPR for persons being cared for at home. Laws and regulations governing their use vary from state to state.

Palliative care - A comprehensive approach to treating serious illness that focuses on the physical, psychological, spiritual, and existential needs of the patient. Its goal is to achieve the best quality of life available to the patient by relieving suffering, by controlling pain and symptoms, and by enabling the patient to achieve maximum functional capacity. Respect for the patient’s culture, beliefs, and values are an essential component. Palliative care is sometimes called “comfort care” or “hospice type care.”

Respiratory arrest - The cessation of breathing - an event in which an individual stops breathing. If breathing is not restored, an individual's heart eventually will stop beating, resulting in cardiac arrest.

Surrogate decision-making - Surrogate decision-making laws allow an individual or group of individuals (usually family members) to make decisions about medical treatments for a patient who has lost decision-making capacity and did not prepare an advance directive. A majority of states have passed statutes that permit surrogate decision making for patients without advance directives.

Withholding or withdrawing treatment - Forgoing life-sustaining measures or discontinuing them after they have been used for a certain period of time.