Preparing for Caring When ... Caring FOR YOUR PARTNER

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 couples in close relationships in which one partner has a progressive and/or sudden illness or injury requiring care from the other partner. 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 Partner is Ill. Where do WE start?

You may have just learned that your partner (often a husband or wife) has an illness that will require many changes in both of your lives and the close relationship you share. You will put your heads, hearts and hands together to deal with these changes.

Your heads ... will be filled with new information and new questions requiring each of you to search for answers from your health care providers, others who may have experienced the same illness, local community agencies, and of course, the internet. As thoughts about the illness experience often lead to difficult feelings ... from shock and denial to anger and sadness, you will need...

Your hearts... More than ever, chronic and /or life-threatening illness demands talking and listening to each other. Your love and relationship skills will be tested. You will both want to express your feelings, maintain the friendship and intimacy of your partnership, cope with your feelings, and exchange support. You will hold...

Your hands...You will both work hard to maintain your health and independence. You will write lists and keep records. You will change responsibilities for maintaining your lives, families, jobs and home. The well partner 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 his or her ill partner.

This introductory "Preparing for Caring" booklet will help you get started in planning for your future together. Once you and your partner 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 online 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 creates a Novel Experience for Both Partners.

Couples facing illness demands may be coping with the diagnosis of a new disorder such as cancer, serious infections such as HIV or hepatitis, 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 - and may lead 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 due to unhealthy diets, cigarette, and drug and alcohol use, and poor exercise, sleep or relaxation habits. Dementia, brain damage, and some severe mental disorders may limit the partner's ability to participate in planning with the caregiving partner.

Your health care team of doctors, nurses and others will help you anticipate and understand the impact of the illness on future health and needs for care. 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 partner 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

Both of you will have new responsibilities to manage, control, and cope with these health changes. Illness and injury creates new situations and novel experiences for both of you.

In addition to discussions with your doctors, nurses and therapists, you may do what many people are now doing to get additional information about illness and treatments ... checking out the WEB. Often, the well partner, 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 your health care provider, and understanding the causes and changes in the body.

Your lives will never be the same.

With the diagnosis or progression of an illness or disease, you and your partner are suddenly aware that your lives will never be the same, and that there are many new things to understand in order to protect each other's health and your close relationship. With the ill partner as the center of attention, the well partner is left to hold things together. In fact, the well "caregiver" has been called the "silent patient." The diagnosis of chronic and /or life-threatening disorders increases risks to physical and mental health for both partners.

Why? Multiple changes --- shifts in home and family responsibilities, job-related and financial concerns --- add to the stress of dealing with illness. Prolonged stress may increase blood pressure, blood sugar, and depress your abilities to fight infections and cancer. Illness is a crisis for both partners.

Dealing with NOW.

Understand and Share Your Feelings Early.

While one partner 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, the other 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. Some of the feelings listed below occur in both partners and in other health disorders.

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 partner whose lifestyle may have increased illness risks is difficult to handle.

Guilt related to thoughts about causing the illness or injury may be experienced. Well partners 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, lacking energy and interests in being with your friends and 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 for both partners. New research and treatments are improving the quality and quantity of life. Being hopeful and optimistic provide the energy to move forward.

Both partners are often on an emotional roller coaster. Expression of feelings with respect and empathy for the other partner's health may help to ease them. Hiding feelings and information from your partner in efforts to overprotect him or her often results in their distrust and declining self-esteem.

Focus on Communication with Your Partner.

Planning to make decisions related to treatment and care, working through the feelings that result, and rebalancing family, home and work responsibilities require good communication. Even if you have already developed healthy patterns of sharing information and feelings, new issues and problems may challenge you. Dr. Carol E. Cutrona in her 1996 book, Social Support in Couples, offers many excellent suggestions:

• It is important that partners be "there" for each other. Practice being supportive every day to feel good and strengthen your relationship. Giving support helps relationships grow and builds trust.
• Respect each other's differences in asking for and receiving help and in coping.
• Even if you do not talk to your partner about a problem, he or she will know something is wrong, may draw the wrong conclusions, and will not be able to support you.
• Share your positive feelings and intimate thoughts with your partner.
• In times of severe stress, stay close to each other. Hug, cry, and fight the illness together. Do not withdraw. Reach out to each other, and make a plan to get the help and support you need.
• Remember both of you are experiencing the crisis of illness, and will feel angry - Be angry at the disease, not at each other. Try to explain the cause of your anger and upset as specifically as you can, so you can focus on the problem. If on the receiving end, listen and understand without defending yourself.
• Talk openly about your fears. Be afraid together.
• Talk about the imbalances in the responsibilities and work created by illness. Consider options to deal with inequities.
• Beware of the tendency to overprotect each other. Talk often and openly.

Strengthen your relationship patterns to improve communication, including listening. Refresh yourselves on the steps of problem solving, negotiation, and compromise. Tell each other what kind of support is most helpful, exchange support and find simple ways to appreciate it.

Support Your Children.

In talking with your children, 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 parent'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 occurring when a parent becomes ill create loss 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 are helpful in getting them through the changes, losses and grief they feel.

Check out the rest of the Spring 2003 special edition of Mainstay focused on "wellspouse kids" - particularly "Resources for Wellspouses Raising Young Children" by M. Guenther.

Keep the Lines of Communication Open with Your Health Care Provider.

You have probably had a variety of experiences in talking with your health care team. Remember both of you are the most important members of the team and respect for everyone's involvement is critical. Better, less stressful and more satisfying care for both partners will result. You should have expectations from your health care providers that include involvement and consideration from the well partner. If you are not satisfied with your doctor, you may want to get a second (or even a third) opinion concerning treatment. You may want to interview other doctors who are more likely to meet your needs. Remember, you will be working closely not only with the doctor or nurse practitioner, 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 partner 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.

Talk with Your Employer(s).

If employed, each partner should schedule a meeting or telephone conversation with their manager and a member of the Human Resources or Employee Assistance staff, if available. Discussions are needed related to sick time and leave policies, health and disability insurance, and other support or allowances that will help both of you. Remember to plan what you will share with your employers. 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 you or your partner 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.
• 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.
  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 or visiting www..DSAAPD.com

Take Long Term Look.

In some situations, the need for long term care may be anticipated early. For some families, the needs 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.

Accept Help from Friends.

Plan with your partner what you wish to share with your family and friends about your situation. Some couples want many of their friends to know, while others prefer to keep matters confidential. Anticipate that the more who know - the more offers of help you are likely to receive. Your friends and family will often ask you how they can help. Advice from Delaware couples dealing with cancer includes:

• Make a specific list of things that you need and offer it to those who want to help.
• If a meal is on the list, be specific about what you and your family like.
• Do not forget to include a couple of hours of time away from caregiving. An ill mom may wish for someone to come over in the late afternoon to help her children with their homework or to start dinner. A caregiving partner may wish to take a break to do something enjoyable.
• One man noted that the sign of a true friend is one who offers to clean the bathrooms.
• Active families confronting illness often benefit from offers of transportation - for kids' activities, picking up groceries, prescriptions, or even a movie rental.
• Even occasional phone calls and planned visits to socialize, to update, and to discuss things of interest beyond illness are important.
• Another man who was caring for his wife sent out an email regularly to update his friends and family about how he and his wife were doing. When his wife died, he continued the emailing every 3 months to let all know how he was feeling and what he was doing to move through his grief gradually.

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 caregiving partner, parents who are able to help, siblings, and the couple's children, as appropriate. Sometimes, the ill partner attends the first meeting, but many primary caregivers prefer to wait and include their partner 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 caregiving partner 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 parents from age-appropriate housework to answering the phone, and keeping their sick parent company.

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