Preparing for Caring When ... CARING FOR YOUR PARENT

An Introduction to the Preparing for Caring Program, an Initiative of Delaware's Caring Partners

The Preparing for Caring Program is designed for family caregivers age 60 or younger. This introductory kit focuses on the needs of middle-aged adult children anticipating the care of their aging and /or ill parents. The Jessie Ball duPont Fund has graciously supported the development of the Caring Partners initiatives.

It was authored in 2005 by Dr. Christine A. Cannon, a University of Delaware Nursing Professor, who conducted the original research in 2002 to identify the impact and needs of Delaware's caring families.

My Parent is Ill. Where do WE start?

You may have just learned that your father or mother is ill and that this will require many changes in his or her life as well as yours. He or she may be losing the ability to care for him- or herself. Perhaps you just realized the need to help your parent give up his / her driver's license as changes in sight, hearing, and motor control have become apparent. When you visit, you may begin to see subtle changes in how your parent takes care of his / her home, health and appearance. You may notice changes in your parent's mental health or abilities to remember and solve everyday problems. Many of the disorders that increase as one ages, such as arthritis and osteoporosis, cause pain, limit walking, the use of one's hands, and ultimately, impact abilities to maintain activities inside and outside of home. Progressive losses often result in depression. Age-related changes and multiple chronic illnesses present challenges to the many daughters and sons who, like you, find themselves in positions of needing to share the care of their parents. You will put your heads, hearts and hands together to deal with these challenges.

Your heads ... will be filled with new questions and dilemmas requiring a new level of collaboration with your parent(s), sisters and brothers - as each is available to participate. You will need to search for answers from health care providers, local community agencies, the Internet, and of course, other sons and daughters with the experiences you anticipate. As thoughts about the health of your parent often lead to difficult feelings ... from denial to anger and sadness, you will need...

Your hearts... More than ever, aging and / or chronic, often life-threatening, illnesses demand talking and listening to each other. Your love and relationship skills will be tested. You will want to express your feelings, maintain the closeness of your partnership, cope with your feelings, and exchange support. You will hold...

Your hands...You will work hard to help your parent maintain his / her health and independence. You will write lists and keep records. You will change responsibilities for maintaining your lives, families, jobs and home. As a daughter or son, you may gradually take on the work of caregiving ... driving, shopping, cooking, cleaning, paying the bills and assisting with hands-on personal and medical care of your parent.

This introductory "Preparing for Caring" booklet will help you get started in planning for your future together. Once you and your parent have reviewed the contents and discussed your current and anticipated needs, you may wish to start "preparing for caring." The six program modules of the Preparing for Caring Program are available to help you and your family find the information, references and links to some of the best resources available. All of these will help you plan now - to reduce stress later. Check out the "Caring Partners Program" brochure to take advantage of the program modules and individualized in-person, telephone, and on-line support from the Caring Partners Coordinator.

The information in the "Preparing for Caring Program" was selected based on research and experiences in coping with illness and caregiving. The italicized information includes findings from research conducted with family caregivers, and community experts who care for families facing illness in Delaware. In addition, an internet survey of caregivers, who are members of The Well Spouse Association on-line listserv, provided italicized information on their needs and changes in their personal and relationship well being. Local resources and community agencies in Delaware are highlighted in this color.

Illness and Aging create Health Needs for Both the Parent(s) and Their Daughters and Sons.

Ill and/or aging parents and their daughters and sons face needs related not only to their physical health, but also to their emotional, marital and social well-being. Illness-related demands may stem from the diagnosis of a new disorder such as cancer, serious infections, nervous muscular system disorders such as multiple sclerosis, Parkinson's disease, Alzheimer's disease and other dementias. Injuries due to trauma of falls, auto accidents or violence may disrupt the structures of the body -- the skin, bones, muscles and the brain and nervous system. Age-related changes affecting sight, hearing, bones and muscles, immunity and more threaten a parent's ability to maintain independence, leading to the need for long-term caregiving.

Chronic heart disease, hypertension, lung disease, and diabetes may cause acute life-threatening complications that leave people with decreasing functions of major organs and symptoms such as chronic pain, breathlessness, limited physical activities, and increasing fatigue. Often, a medical emergency such as a heart attack, stroke, pneumonia or coma occurs before the underlying disorder has been diagnosed. Some of these disorders are associated with years of increasing risks related to nutritional, exercise, sleep or relaxation habits, and cigarette, drug and alcohol use. Dementia, brain damage, and some severe mental disorders may limit the parent's ability to participate in planning with the caregiving daughter (s) and son(s).

In addition to concern for your parent's health and future needs, you are most likely to try to figure out how you and others will manage to take on increasing responsibilities. Many sons and daughters are working hard to support their spouses and children, and to sustain their homes and full-time employment. Separation of parents and their adult children by distance complicates caregiving even more.

As you will learn in the Preparing for Caring Program, the demands of caregiving often increase work and stress. Less time to take care of personal health needs (like sleep, exercise, nutrition, and check-ups) combined with the increased risks for stress-related disorders can lead to physical and emotional health problems. Relationships with parents, siblings, spouses, children and friends may change in a variety of ways. Opportunities to strengthen relationships with your parent(s) and siblings may take time away from your marital, parental, and social relationships that provide the support you need. This program and other aspects of the Caring Partners Program will help you and your family find the information and support you need to rebalance your lives.

The Challenges Ahead

For aging and / or ill parents who are gradually facing losses in their physical, cognitive, and social functioning, the ability to maintain their independence is threatened. How difficult it must be to know that driving to the grocery store or pharmacy involves great risks or that one forgets so easily, or can no longer take care of the yard and home as needed. Control may feel as if it's slipping away, and who knows what next week or next year will bring. Mourning for life's losses creates sadness, depression, anger, and sometimes, a protective denial of changes in one's abilities. No one wants to give up what he or she has learned and earned in living life, particularly his or her roles, control, self-care, and independence. Acknowledging and discussing these changes with others is tough. Asking for help is difficult for many.

When one experiences the physical symptoms of illness - such as pain, shortness of breath, fatigue and problems related to the functioning of bones, joints, muscles, the heart, lungs, and blood vessels, physical activities are often greatly restricted. The distress of nausea, vomiting, diarrhea, constipation and poor bladder control often prevents one from leaving home. Disorders of the nervous system, particularly the brain, that compromise thinking, behavior, and the coordination of many parts of the body, take a tremendous toll on health.

Spouses, daughters and sons often may become aware of these changes in their loved ones early. It is hard to acknowledge that the person you love and who cared for you, now needs your help. Seeing someone so dear to you experience uncomfortable symptoms, loss of functioning and control, difficult feelings, and mental alterations can be heart wrenching. It is a reminder of our own, as well as our loved one's mortality. Helping your parent(s) requires dealing with your own feelings. Depending on the type of relationship you have with your parent, you may find the challenges ahead to be important opportunities for both of you.

Now may be the best time to focus on supporting your parent's independence. The place to start - opening lines of communication should begin as soon as possible before a crisis occurs. You might start with a discussion of your feelings and concerns about your parent's situation and then encourage him or her to do the same. Sometimes, your parent will mention a concern or problem that can open a conversation about his or her needs, preferences, and plans. You may want to start planning by organizing your health, financial, and legal documents, and ask your parent if his or her documents are in order.

Some Things You May Want to Do Now...

Getting Information for Planning

It is a good idea for the person who is most responsible for day-to-day care to assume the role of the "family spokesperson" on the health care team. The family spokesperson advocates for his or her parent and coordinates communication between the health care team and the family. To prepare, you will need to understand the impact of the diagnosis on your parent's needs for care. Ask your parent's doctors and nurses what to anticipate. Their guidance is invaluable in preparing you for what to expect beyond diagnosis and initial treatment. If you have not discussed the illness impact and future needs with your health care provider, bring these issues up and get the information you need. Both you and your parent(s) will want to learn everything you can do to

• identify early changes signaling problems
• control symptoms
• seek emergency care early when needed
• limit the disease or injury
• reach a new level of "normal" in your lives

In addition to these discussions, you may do what many people are now doing to get additional information about illness and treatments ... checking out the WEB. Often, the well parent, a friend or family member takes on this job early after diagnosis. Working at home, the library, or at work, this person may do an Internet search for websites with information on the disorder, treatment, care, community services and non-profit organizations.

It is very important to be able to evaluate the health information on the web - particularly if it is being used to help you make treatment decisions. Check out...

You will find a wealth of disorder-related information and recent research from government sites such

• www.nih.gov (National Institutes of Health),
• www.cancer.gov (National Cancer Institute), and
• www.aoa.gov (Administration on Aging)

This information will help you in making decisions with the health care provider, and understanding the causes and changes in the body.

Dealing with NOW.

Understand and Share Your Feelings Early.

While a parent undergoes tests and treatments such as surgery, therapy, and other medical treatment and tries to cope with symptoms such as pain, breathlessness, or loss of a part of their body or its function, adult children and the other parent may be feeling shocked, angry, and helpless, in disbelief and doubting their ability to deal with so many changes.

"Taking Time..." discusses common feelings in the diagnosis of cancer. These normal feelings often occur in other serious conditions and affect close family members. Some common feelings are:

Denial that gives you time to adjust and be hopeful.

Anger at the disease, people, God, or from anxiety, frustration or helplessness is common. Anger at the ill parent whose lifestyle may have increased illness risks is difficult to handle.

Guilt related to thoughts about causing the illness or injury may be experienced. Family caregivers may feel guilty about being impatient, angry, and unable to do enough.

Fear and Worry about pain, feeling and looking sick, living with losses and death, caring for your family, keeping your job, having income to pay your bills,

Feeling Stressed and Out of Control causing you to feel sick to your stomach, shaky, weak and uninterested in eating or sleeping, Heart palpitations, tightness in your chest, headache, nausea, and/or diarrhea may occur. You may feel helpless, disorganized, and have a hard time adjusting to new routines and restrictions imposed by illness.

Sadness due to real or anticipated losses and depression that makes you feel more helpless, hopeless, less interested in being with your friends or doing the activities you enjoy. Sleeping and eating habits are often disrupted. Frequent, lengthy bouts of crying and thoughts of suicide and death require immediate mental health care.

Hope for the future is important. New research and treatments are improving the quality and quantity of life in many serious illnesses. Being hopeful and optimistic provide the energy to move forward.

Expression of feelings with respect and empathy for your parent's health may help to ease difficult feelings. Hiding feelings and information from your parent in efforts to protect him or her often results in their distrust and declining self-esteem.

Help Your Children Understand

In talking with your children about an ill grandparent, consider

• Tailoring your explanations to their ages and developmental stages.
• Seeking the help of a medical social worker or school nurse. Depending on the reactions of the child, counseling from a qualified professional may be supportive.
• Checking out the growing number of books, booklets, and websites that offer information on helping children deal with the kind of feelings, including losses, they experience. Local organizations (such as The Wellness Community of Delaware, community centers, and places of worship) often sponsor support groups for children dealing with crisis and loss.
• Searching websites that provide an array of easily accessible resources.

Remember, that in the course of a grandparent's illness, children often do not receive the attention they usually have from both parents. Their feelings may be reflected in behaviors such as acting out and attempts to gain more attention. Sadness and loss may lead to withdrawn behavior and difficulties in concentrating.

Many of the changes that occur when a grandparent becomes ill create other losses and grief. Listening to your children's fears, anger and confusion, and the threats they are experiencing is critical. Providing love and support as well as an understanding of what is happening will help them get through the changes, losses and grief they feel.

Have a Family Meeting.

The purpose of a family meeting is to pull everyone together to work as a team in supporting the ill member and his/her primary caregiver. The group often includes the primary caregiver - an adult child and a spouse who is able to help, siblings, and grandchildren. Sometimes, the ill parent attends the first meeting, but many primary caregivers prefer to wait and include their parent at a second meeting. If everyone cannot be there in person, a telephone conference call or use of the speakerphone option allows participation. If that is not possible, audiotape or videotape the meeting for the absent members.

Some suggestions:

• Introduce the idea of getting together, suggesting a place and time.
• Make an agenda and give out ahead of the meeting.
• Be prepared with the latest information from the doctor.
• Provide an opportunity for everyone to share his or her feelings (fears, sadness, anger, etc) about the illness and caregiving.
• Discuss and list caregiving needs, financial concerns, decision-making responsibilities and how each member would like to help.
• List the support needs of the primary caregiver such as
  • emotional support,
  • respite
  • help with housework and shopping
  • transportation to therapy, doctor appointments, etc.
  Discuss ways in which needs can be addressed by family.
• Remember younger children - not present at this meeting - want to help, and that there are many things that they can do for their grandparents from age-appropriate housework to answering the phone, and keeping their sick parent company.

Keep the Lines of Communication Open...

...with the Health Care Provider.

You should have expectations of your parent's health care providers that include your involvement as the primary caregiver. If your parent is not satisfied with his or her doctor, or if you have major concerns about the care planned, a second (or even a third) opinion may be sought from other doctors concerning treatment. Remember, you will be working closely not only with the doctor and nurses, but also with the office staff. Get familiar with the staff and how they manage client needs related to emergencies, appointments, medical information including payment and insurance issues, scheduling tests, etc.

It is very important to have your parent sign a release authorizing the members of the health care team and health institutions to share medical information with the primary caregiver. Under new health information privacy regulations (HIPPA), patients must provide permission for their information to be discussed with specific family members.

... with Your Employer(s).

If you are employed, you may want to schedule a meeting or telephone conversation with your manager or a member of the Human Resources staff. Discussions are needed related to family leave policies and employee assistance services to support you during caregiving demands. Many employers now realize how important it is to support family caregivers. They are learning that when allowances are not made, stressed and fatigued employed caregivers are less productive.

Take opportunities to help your employer learn about the work of caregiving by sharing your experiences. Check out the manager's workbook, When Employees Become Caregivers, a 2004 publication of the Center for Medicare & Medicaid Services (publication #11035), made available through AARP. Take a copy to your employer's human resources specialist.

Review Your Finances.

Illness brings the burden of many unanticipated costs even if you have good insurance coverage. If your parent is hospitalized for emergency care, diagnosis and initial treatment, take the opportunity to meet with the hospital social worker and/or discharge planner to discuss eligibility for Medicare, Medicaid, VA benefits, Social Security or other programs to provide help.

• Check out the latest version of "Guide to Services for Persons with Disabilities in Delaware" for local social service and government agencies that can provide important financial support information and counseling. Go to www.dhss.delaware.gov/dhss/dsaapd/publica.html for this directory and other publications available online from DSAAPD.
  The Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers by M. M. Meyer & P. Derr (1998) by CareTrust Publications LLC is an excellent book for new caregivers. It includes information to assess financial resources (page 52) plus more. Get this book free by calling the Delaware Helpline at (800)464-HELP.
• Find out about community-based services that provide meals, social and health care services without cost to you. Eligibility is often based on age, income, and specific diagnosis.

Take Long Term Look.

In some situations, the need for long term care may be anticipated early. For some families, the need for assisted living and nursing home care may be evident soon after the diagnosis of a devastating illness or sudden severe injury. Sometimes, nursing home admission is needed at hospital discharge.

The Most Important Elements of Maintaining Daily Life and Health as described by Delaware Caregivers...

• Making personal health a PRIORITY
• Getting emotional and social support from
  • conversations with friends and family,
  • individual and family counseling,
  • telephone support from peers, professionals,
  • local support groups, global Internet support groups,
• Finding reliable and understandable information quickly from trusted professionals and other sources
• Having understanding, support, and work schedule flexibility from employer
• Being able to take time away from caregiving with reliable respite care delivered at or away from home,
• Having the needed
  • financial resources for care services needed, including respite
  • home care services, childcare
  • professional nursing care that is flexible in availability, dependable, and affordable
  • community services from transportation to adult day care and crisis intervention
  • access to health professionals who understand the needs of caregivers and their families