Where do I Start?

The best place to start is by contacting your local ALTC office to find out what programs and resources are available near you.

Who is a Caregiver?

A caregiver is anyone who takes care of another person. Last year in the United States, one in four households did this kind of work.

There are many reasons why a family member or friend might need help, and many different kinds of caregiving tasks. You may drive someone to appointments or help with shopping. More than half of family caregivers assist with physical care, such as dressing and toileting. Many also provide nursing care such as giving medications or monitoring vital signs.
For more information about caregivers, contact your local ALTC office.

As a caregiver, how do I take care of myself?

Everyone says it is important to "take care of yourself" but what does this really mean? It means not trying to do the job alone, or for too long. You may need to learn how to ask friends and family for help, or get respite care so you can have some time off each week. You may need to hire some in-home help a few hours a week to assist with housekeeping or caregiving. In cases of stress, depression, or illness, don't forget to get medical attention. Some people find it helpful to consult with their pastor or a long-term care consultant to get fresh ideas and moral support. Most important, give yourself permission to "let go" or ask for help when the responsibilities of in-home care have become too much for you.

What services are available to help in the home?

There are many services that can lighten your burdens and increase comfort and safety. The most common services are: respite care, adult day care, personal care (cooking, bathing, dressing, etc), home health care (checking vital signs, changing dressings, etc), home delivered meals, transportation, hospice (for someone who is dying), support groups for particular medical conditions, and home modification/maintenance.
For a more complete list of services contact your local ALTC office.

What if we need more help than we can get at home?

At some point, it may become impossible to provide care in the home. Necessary care may be too specialized, too expensive, or may be needed 24 hours a day. Residential care may be the right decision if:

• The person has health needs that can't be met at home.
• The caregiver is emotionally and physically exhausted, and community resources have already been tried.
• The person can't be safely cared for in-home.
• The caregiver's safety is at risk.

When care at home is not possible, there are various residential services to consider. The most common are adult family homes, boarding homes (which may contract to provide assisted living services), and nursing facilities.

Some programs offer special care to meet the needs of a specific population, such as people with Alzheimer's Disease or a developmental disability.

I'm exhausted from providing around-the-clock care. Is there any service that can help me?

Respite Care Services are designed to give unpaid caregivers a break in an emergency or on an infrequent basis. It's designed for caregivers who are responsible for the primary care or supervision of a family member or friend. To find out if you are eligible, contact the ALTC office in your area.

How are services paid?

There are a number of financial programs that pay all or part of the costs of in-home, residential, and nursing home care. The most common funding sources are: Medicare (a federal program), Medicaid (a state program), veteran's benefits, and long-term care insurance.

Each has its own limitations. Medicare has many restrictions on the kinds and length of services; Medicaid is only for people with low-income and limited resources; and veteran's benefits have specific eligibility criteria. Long-term care insurance policies vary and are hard to get if the person already has a significant illness or impairment. Many people pay for some or all of their long-term care services with their own money.

What about legal and financial planning?

In the hustle and bustle of providing daily care, it is easy to forget or put off talking about the difficult decisions that lie ahead: costs of long-term care, difficult health care decisions, financial protection of those we leave behind, and so on.

As a friend or family caregiver, you should encourage the person you care for to have the following legal documents complete and up-to-date: a Will, a Durable Power of Attorney, and Advance Directives. It is possible to prepare these documents without an attorney, but many people prefer legal help.

Advance Directives provide guidance to health care providers when the patient is unable to give consent. These Directives commonly include a Living Will, Durable Power of Attorney for Health Care, Code/No Code (Do Not Resuscitate or DNR), and Anatomical Gifts. Caregivers should know and respect the Advance Directives of the person they care for.
It is also helpful to discuss wishes about funeral arrangements and memorial services. The Office of the Attorney General has prepared a useful guide called "Dealing with Death".

How can I help my aging parents?

Many caregivers are adult children caring for their parents. They speak of the awkward feelings if roles are reversed and they find themselves feeding, bathing, or supervising a parent who once took care of them. They speak of the frustration when parents don't listen to advice or accept help. They voice fear that one parent will fall ill or die from the stress of caring for the other parent. While many remember a loving relationship with parents, other adult children find themselves caring for parents they never got along with very well.

Caring for parents can also affect relationships between brothers and sisters. For some, the experience of caring for parents can bring together siblings who have lost contact, and forge deeper family ties. For others, caring for parents can bring out old rivalries, or reinforce old communication problems. The adult child in a caregiving role may experience siblings who fly into town with questions or challenges to existing arrangements. A visiting sibling may not see the problems, because the parent has "rallied" for the visit.

These problems are very common. A support group, long-term care consultant, or family pastor may be able to help you find ways to work things out with your parents and siblings. Individual counseling can also be helpful. To find resources in your community, contact your local ALTC office.

How do I cope with memory problems?

If the person you care for asks questions repeatedly, has trouble performing simple tasks, or forgets recent events, he or she may have a form of dementia. There are several causes for dementia, so you should have the person diagnosed by a doctor. Some dementia may be caused by factors that can be treated, such as severe depression, improper use of drugs or drug interaction, severe diabetes, or severe vitamin deficiencies. If the person you are caring for is very depressed, emotional, or frequently angry, the doctor can also assist with medications.

The most common kind of dementia is Alzheimer's Disease, and it is not curable. Symptoms will get worse over time. Although Alzheimer's Disease is not a "normal" part of aging, it is more common in older people. Almost half of people over 85 will have some signs of the disease.

Alzheimer's Disease is very hard on families. Long-time roles start to change, as you or other family members take on tasks once handled by the person with the disease. When adult children step in to help, they may find that their independent-minded parents decline help or ignore advice.
Here's the good news: there are many helpful resources for families coping with dementia, including organizations, books, pamphlets, websites, support groups, medications, respite care, day care, and specialized residential care. Hard though it is to care for someone with this disease, it can be made easier by using the resources on this website and those available from your local ALTC office.

Is there help for families caring for people with developmental disabilities?

The Washington State Department of Social and Health Services Division of Developmental Disabilities offers support services to families caring for someone with developmental disabilities.

What do I do when someone is still driving the car but shouldn't?

This is a very common problem. Cars give people independence and control, especially if public transportation is not available. You are correct to be concerned.

If you believe someone has a condition that seriously impairs driving, try talking directly to the person and urge him or her to re-take the driver's test or give up the car. If this doesn't work, some family members take direct steps such as hiding keys or disabling the car.
If this approach is not right for you or fails, you may want to contact the person's physician, who can write a prescription advising the patient not to drive.
Physicians can also send a letter suggesting a re-exam to:

The Department of Licensing
Medical Section
PO Box 9030
Olympia, WA 98507-9030

What can I do about feeling sad or depressed?

Caregivers often experience sadness and depression, and so can those they care for. When depression begins to affect thoughts, feelings, physical health, and behaviors, it is a medical illness that should be recognized and treated.
In the case of the caregiver, untreated depression can lead to illness, accidents, abuse, and other problems. In the case of the person you are caring for, stress and depression can increase memory problems and affect other functions.
Thoughts of suicide are common in depression, and the risk of suicide is increased when the depressed person is not treated and the depression recurs. Any thoughts or talk about suicide should be taken seriously; seek help for yourself or another person when these occur.
Depression is not your fault, or the fault of the person you care for. Learn to recognize the signs of depression and ask your doctor for help. To recognize the common signs of depression, go to Signs of Depression. The more signs on this list you check, the more likely you or the person you care for is suffering from a serious depression.
Counseling for depression may also be useful. For information about counseling services in your area, contact your local ALTC office.

Signs of Depression

Reprinted with permission from Depression in Later Life: Recognition and Treatment , by Vicki L. Schmall, LaJean Lawson, and Ruth Stiehl.

Physical Signs

Aches, pains, or other physical complaints that seem to have no physical basis
Marked change in appetite (or weight loss or gain)
Change in sleep patterns (insomnia, early morning waking, sleeping more than usual)
Fatigue, lack of energy, being "slowed down"

Emotional Signs

Pervasive sadness, anxiety, or "empty" mood
Apathy (lack of feeling anything at all)
Decreased pleasure or enjoyment
Crying for no apparent reason, with no relief
Indifference to others
Changes in Thoughts
Feelings of hopelessness, pessimism
Feelings of worthlessness, self- reproach, inadequacy, helplessness
Inappropriate or excessive guilt
Impaired concentration, slowed or disorganized thinking
Forgetfulness, problems with memory
Indecision: unable to make decisions or take action
Recurrent thoughts of death or suicide

Changes in Behavior

Loss of interest or pleasure in previously enjoyed activities, including sex
Neglect of personal appearance, hygiene, home, and responsibilities
Difficulty performing daily tasks - ordinary tasks are overwhelming
Withdrawal from people and usual activities; wanting to be alone
Increased use of alcohol and drugs
Increased irritability, arguing, or hostility
Greater agitation, pacing, restlessness, hand wringing
Suicide attempts or talking about suicide

How do I work with the doctor's office?

The doctor is an important part of the caregiving team, particularly when the person you care for has a serious illness. As noted on other pages, the doctor diagnoses diseases, prescribes medications and watches for possible drug interactions, can help stop someone from driving, provides guidance to a patient who won't "listen" to their adult children or spouse, and refers for certain kinds of care. Financial coverage for some services depends on the diagnosis and recommendation of a doctor.
Doctors are busy people. The lesson here is to work as a team. Don't just wait for the doctor to tell you things. Bring information to the doctor, and prepare a list of questions.
Confidentiality can be an issue. Some doctors hesitate to talk with family members or friends. Some patients do not want their caregiver to talk with their doctor. It is important to work this out between you and the person you care for. If it is decided that you will be working closely with the doctor in his or her behalf, have the person you care for sign a release of confidentiality and give it to the doctor. A Durable Power of Attorney for health can also work.

What if I don't like how someone is being treated?

Abuse is a deliberate action or lack of action that causes harm. If the person you care for seems unusually fearful around certain people, has injuries that are unexplained or caused by another person, or says he/she is being hurt, you should report the abuse to 1-866-EndHarm (1-866-363-4276). Call this toll-free number if you think someone is being neglected to the point of harm. If you are a paid caregiver working for an agency, the law requires you to report mental abuse, physical abuse, or neglect.
If you are being abused by the person you care for, you should take steps to protect your own safety. Contact the person's doctor to see what can be done to address violent behavior. Look for causes in the environment that may be leading to these outbursts. People with dementia can be very sensitive to noise, confusion, or turmoil in their surroundings. Do NOT risk your own health or safety in order to care for someone else. This may be the time to consider more in-home help, adult day care, or residential care.
Caring for someone else can be very stressful. In certain situations, caregivers can be at their wits' end and at the point of yelling or hitting. It is important to get help before you are so stressed that you hurt the person you care for.

What training is available for caregivers?

Training can provide fresh ideas and new solutions. Attending educational seminars, conferences or workshops can also help you find other caregivers who might be interested in keeping in touch and sharing resources.
A training program, "Powerful Tools for Caregiving", is available in some areas of the state. This education program is designed especially for family caregivers. It particularly helps family caregivers of older adults with a chronic condition such as Parkinson's disease, Alzheimer's disease, stroke or cancer. Powerful Tools for Caregiving meets weekly for six weeks to help family caregivers develop and practice self-care "tools" that reduce personal stress; change negative self-talk; and communicate their needs to family members and healthcare and service providers. It also helps people communicate more effectively in challenging situations; recognize the "messages in their emotions" and how to deal with difficult feelings; and make tough caregiving decisions.
ALTC Programs offer training and educational opportunities for family and unpaid caregivers in other ways as well. For example, individualized one-on-one training about a specific caregiving task - such as how to bathe a person, how to help a person transfer or walk, how to manage a complicated dietary issue - may be available.

If you're interested in finding out more about training opportunities for family caregivers in your area, contact your local ALTC office.

My aging parents live out of state. How can I find out which services are available in their area?

The local ALTC office can help "long-distance caregivers" access the resources and services of State and Area Agencies on Aging across the nation.

What if my question isn't listed here?

Need direct assistance or advice from a real person? We recommend you call the ALTC office in your area.