When serious illness or disability strikes, it’s hard to know where to turn for help. As a caregiver, you may be a husband or wife, daughter or son, sibling or close friend of someone who needs your assistance in daily life. You may help out occasionally with chores or transportation, or you may arrange for and provide round-the-clock supervision or hands-on care. Whatever your relationship or degree of involvement, it’s important to prepare for the future by taking the following steps:

Start Planning for future care needs — for legal and financial decision-making; for present and future care needs;

Find Education — about the disease or disability and about caregiving; and

Seek Support — for arranging and providing care; for the emotional changes that accompany caregiving.

The following 10 tips are intended to provide simple guidelines to assist you in your
  planning. The Caregiver Assistance Program at Crisis Clinic's Community Information
  Line is available as an ongoing resource for information and support.

1. Make sure you have knowledgeable and supportive health care providers.
Caregivers are often called on to arrange for and monitor medical care for their family members. Whether disability occurs suddenly, or is the result of a chronic or progressive disease, it’s important to seek out health providers who are knowledgeable, if not "expert" in their fields. It’s important, too, to find practitioners who understand caregiving and value your vital contribution as a caregiver and advocate for your relative. It may take some investigation to find the right health provider, but it’s worth taking the time to choose well. Organizations focused on a specific disease or disability have information about current research and treatment options, and often can point you in the direction of specialists in that field.

2. Get your affairs in order by doing legal and financial planning.
Older adults and adults with disabilities may need assistance now or in the future with legal and financial planning and decision-making. As a caregiver, you may at some point assume responsibility for overseeing business or legal affairs, and making health care decisions, for your family member. It’s a good idea to plan ahead and meet with an attorney specializing in elder or disability law. He or she will have the ability to help you draw up documents that will empower you to act on your family member’s behalf when the need arises. "Durable Powers of Attorney" and "Health Care Powers of Attorney" provide direction about how your family member would want to make future financial, legal and medical decisions. A qualified legal representative can advise you about other measures, such as guardianship and conservatorship, planning for disability and Medicaid eligibility, wills and trusts, joint property and bank accounts.

3. Educate yourself about the specific disease or disability and about caregiving.
Caring for a person who is ill or disabled requires specific knowledge and caregiving skills. Learn about the disease or disability affecting your family member - about treatment options, disease progression and care needs. Knowledge will help you know what to expect in the future and how to manage today. Because the cumulative stresses of long-term caregiving can often be overwhelming, it’s also helpful to learn how it may affect your relationship with the care recipient, your family life and you. Classes and educational materials are available through local offices of disease-specific and disability organizations, at hospitals and senior centers, in books and videos, and on the web. Taking advantage of educational opportunities will improve the quality of life for you and your loved one and will help you make more informed decisions about care.

4. Know what resources are available to help.
Caring for someone with a chronic or disabling illness is physically challenging and emotionally demanding. It’s not possible to do it all alone. There are many services and supports available to help you along the way. Because it may take time to arrange for services, it’s important not to wait for an emergency before seeking them out. For your own peace of mind, you should take time to search out and familiarize yourself with the aging, disability and caregiving resources available to you. Chore services and in-home care, day respite and activity programs, transportation and meals are some of the services available to supplement your care. Contact the Community Information Line or check Community Resources Online for where to turn for help.

5. Hold a family meeting to sort out roles and responsibilities.
When a person becomes seriously ill or disabled, the entire family is affected. Established roles, responsibilities and relationships are interrupted and changed. And though one person may be primarily responsible for care, ideally all should be involved in planning, decision-making and support. Holding a family meeting is one way to make sure that everyone is informed about a loved one’s health condition and included in important decisions affecting care. Disagreements about what to do may arise as family members may have different understandings about what is happening or different beliefs about what can and should be done. Old conflicts or grievances from the past may also reappear when illness or disability affects a loved one. It’s important to allow a time for each person to express feelings, preferences and concerns about what is happening. At the same time, concerned family members should be encouraged to develop a plan for how each person is willing to share responsibilities and support of the primary caregiver. A trained counselor or facilitator can help guide the proceedings and ensure the time is positively and productively spent. Follow-up meetings or conversations can provide opportunities to "check-in" and monitor ongoing progress while keeping the lines of communication open.

6. Develop a "CARE BOOK" to keep information in a central place.
Caregivers who arrange or advocate for services for another person must organize diverse information related to their health and well being. Keeping track of medical, legal, financial and social service information, knowing who has been contacted and what has been said, can be confusing and overwhelming. Caregivers are often asked for the same information over and over again when contacting health and social service agencies for assistance. It’s helpful to compile a notebook where important personal information, phone numbers, documents and notes are kept. You should include pertinent medical, legal, and financial information: including social security number, powers of attorney, insurance policies, health providers and lists of medications. It helps, too, to keep names and phone numbers of any case managers or agencies with which you are working, including a record of your contact with them. Organizing a care book takes some effort, but you can start simply. Ultimately, it will pay off by saving you steps and a lot of stress.

7. Build a strong support system for yourself and use it regularly.
One consequence of long-term caregiving is isolation. As the demands of caring for another "24/7" increase and leisure time is limited, caregivers risk losing companionship and support for themselves. It is essential to having someone to talk to who will listen unconditionally and offer support. Stay in touch with important friends, neighbors, coworkers, your faith community and family. Let them know how you are doing and that you need their help and support. Be specific about what you need and accept help when it’s offered. It’s also helpful to seek a group where you can gain emotional support and share information about caregiving and community resources. Others have walked the road you are walking today, and a support group provides an excellent opportunity to learn from group members’ collective experiences.

8. Accept and honor your limits.
One of the greatest challenges families face is being stretched between too many demands. An estimated 23% of American families are providing assistance to an ill or disabled relative. Caregivers may be working full-time, raising children or grandchildren, or may have health concerns of their own. They routinely experience multiple demands on time, energy and money and, more often than not, those responsibilities conflict. Balancing the needs of work, family and community life often pushes the limits of one’s ability to cope. In our culture, great value is placed upon independence and upon "doing it all." In this climate, it’s understandable to focus on all that "should" be done, but it’s healthier to objectively assess what truly needs to happen. Give yourself credit for all you are doing and permission to say "no" when it’s necessary. Aim to set realistic expectations about how much you can do in any 24-hour period. Knowing your limits is a sign of strength, as is the ability to ask for help.

9. Listen to and express your feelings.
Seeing the illness, decline or death of a loved one is very difficult. It’s not uncommon for caregivers to experience a range of emotions and for those emotions to be ambivalent or to conflict at times. Feelings of love, duty and compassion may occur along with feelings of anger, frustration and resentment. As the decline or disability of your family member progresses, you may grieve the loss of your relationship as it used to be or mourn the loss of future dreams, of life "the way it was supposed to be." These feelings are normal. They aren’t good or bad, nor are they a measure of your caring. What is felt is not as important as how feelings are handled. There is value in acknowledging the truth of your experience and expressing your emotions. A trusted friend, clergy or professional therapist can be a sounding board as you work through difficult feelings; a favorite activity can relieve tension inherent in conflicting or ambivalent emotions. Taking the time to grieve, to understand and make room for your feelings, will contribute to your overall well-being and reduce the chance of stress-related overload in the future.

10. Take time for yourself.
  Rest and renewal are requirements for any person involved in caregiving. Helping an ill   or disabled relative should not mean giving up pleasurable activities or important relationships. In fact, refusal to take regular breaks may lead to caregiver depression, burnout or illness in the long run. You have a right to schedule time away from caregiving responsibilities; doing so will increase your ability to provide ongoing care. There are adult day programs and in-home respite services throughout King County, and sources of funding available for those on low or fixed incomes. It pays to check out and begin using respite care early on in caregiving. Contact the Community Information Line or look up Community Resources Online for respite programs near you.