Caregiving: Advice for Your Family Members

By Roger C. Bone, MD, reprinted with permission

In Reflections: A Guide to End of Life Issues for You and Your Family, distributed by the National Kidney Cancer Association, the author, a physican who is facing his own death, offers some essential advice help patients understand how to work with their loved one as they all face a terminal illness together.

Nancy L. Mace and Peter V. Rabins address the needs of family caregivers in their book, The 36-Hour Day.* Although the book is primarily intended to give guidance to those caring for someone with a dementing illness, such as Alzheimer's, the authors outline general principles that can also be used by dying individuals and their families. The major point of the book is this: the person or persons responsible for your care require special attention and advice. Most people are inexperienced at knowing how to act or behave when someone they love is dying of a terminal illness.

There are some important issues you need to keep in mind when family members assume the responsibility of your care. First, loved ones will react to your prognosis in a variety of ways. Some may express their emotions intensely while others may not exhibit any outward signs of distress. Facing the reality of losing a loved one can also lead to mixed feelings of love and anger directed at the person who is sick. Doctors or other health care professionals may also become the target for their anger. They may even feel betrayed by God.

Secondly, as a result of your illness, your family members will be saddled with new responsibilities that may cause some stress in their lives. The future is now uncertain and the threat of separation often leads to a feeling of chaos. Although you are the one with the terminal illness, its effects touch the lives of everyone around you. Your family members may feel trapped by accompanying you to frequent medical appointments or providing full-time assistance at home. Your children, siblings, or spouse may be required to assume new roles in the family that make them feel inexperienced or uncomfortable, such as balancing the checkbook or washing the laundry. It may be difficult to drop everything at a moment's notice when you need them or to make plans that depend on the status of your health. Balancing their already busy schedules with your care can lead to exhaustion and fatigue.

Lastly, medication or the illness itself sometimes causes the sick to say or do negative things. Consequently, caregivers often feel abused and succumb to complex emotions, such as depression, hopelessness, embarrassment, guilt, intense sadness, and isolation. They may use alcohol, sleeping pills, tranquilizers, or other drugs to relieve the stress. However, taking these types of drugs may lead to even more fatigue, greater depression, and physical illness.

I do not want to make it sound as if your care were a burden for your family members. You will find that your spouse, children, siblings, or distant relatives will step forward to provide an inordinate amount of assistance. They want to help you. However, we all have limitations that can result in some natural, but unpleasant, human emotions. There is no right way to react to the impending death of a loved one, but there are steps your family members can take to lessen the grief for themselves.

Since their help is extremely important to you, make sure they know it. Acknowledge their efforts and let them know you love them. They appreciate it if they are asked how they are and how they feel they are managing. If you think a family member is experiencing too much stress, advise him or her to seek help from a social worker or clergy member. Talking with other individuals outside of the family who have experienced a similar situation can also be empowering. Family members should consider exercising, visiting a friend, taking a vacation, walking, or simply relaxing with a pet if they feel they need a break. During these difficult times, laughter and happiness may seem out of place; however, we all know that a simple smile can instantly improve someone's spirits.

Caregivers should focus on one thing at a time, one day at a time. Your family should make it a goal to be informed, to exchange information with everyone involved in your care, and to support medical research. If someone in the family is required to learn new skills in order to effectively manage your state of affairs, advise him or her to seek guidance from experts, to purchase a book, or to ask other friends for their ideas. Again, let them know they are not expected to suddenly become a whiz at financial decision making or managing the housework. Remind them to compromise and to delegate responsibility to other family members.

When more than one family member decides to play an active role in your care, it is imperative that everyone involved meet and exchange ideas. Family members who are unfamiliar with the day to day responsibility of your care may be too critical or unsympathetic toward the primary caregiver. Social stereotypes regarding which family member should be in charge of what may be employed in making decisions instead of truly analyzing the best course of action. On the other hand, family members who take care of the daily operations need to remember that distant relatives care just as much. When everyone makes the commitment to listen to each other, compromise is the most reliable method to solve family crises.

The approach to caring for a terminally ill individual at home requires patience, flexibility, and sufficient resources. As mentioned in earlier chapters, some homes may not be conducive to providing quality care and certain accommodations need to be made. As you become weaker, tasks such as walking around the house, climbing stairs, or washing and dressing yourself will become increasingly difficult. Several aids and adaptations can be introduced in your home in order to make it safer, such as a handrails on the stairs or by the toilet. A walking stick or a wheelchair will give you the confidence to leave your house and take in some fresh air. A low chair, bed, or toilet may be difficult for you to negotiate as your energy level decreases. Bed blocks and chair and toilet raisers can often fix this problem and can be found at pharmacies or medical supply stores.

As a terminally ill patient's condition deteriorates, he or she will be spending more time in bed. You may want to make a suggestion that your bed be moved to the family room so you can continue to take part in the lives of everyone around you and feel less isolated. However, this may not be an option if privacy is a concern for you. You may not want to reveal to family and friends some of the unpleasant physical aspects of being severely ill, such as catheters, sores, and iv's, as you start to lose some of your independence.

Caregivers often feel uneasy about maintaining a loved one's personal hygiene. They may want to consult a nurse or other health care professional about ways in which to protect your privacy and to make you feel comfortable. There are also certain adaptations that can be made in the bathroom in order to make it safer. Handrails and "shower seats" are commonly used and can be easy to install. Patients in the advanced stages of cancer also experience a decrease in appetite. Consequently, caregivers often become overly attentive of the dying patient's diet. However, strong smelling meals, fatty foods, and large portions may not be the answer. Instead, caregivers may want to consider smaller portions at regular intervals and prescribed food supplements.

The dying patient's needs may rapidly change as his or her disease progresses. Caregivers constantly need to assess and anticipate your needs before they become a problem. When caregivers feel like things are getting "out of control," a nurse or other health care professionals can provide advice, information, and support. Many medical centers now have palliative support teams who serve as an important asset for many caregivers and terminally ill patients. Nurses and occupational therapists and physical therapists often visit patients' homes.

Many family members are frightened by how they will react when a loved one dies at home. However, there is usually some indication that death is near and caregivers can prepare for it by following the guidelines I outlined in earlier chapters. It will also help if a physician explains to them the changes in levels of consciousness and breathing prior to death. They may request that family members and/or a religious guide be present during this time. They may also want to keep your physician's telephone number or pager by the telephone if they feel like they are going to panic. Once death has occurred, it is important that a doctor certify the death and sign the appropriate paperwork.

Your caregivers will be able to provide quality and loving assistance if they balance your physical and emotional needs with their own. They can feel that they are playing a positive role if they make a commitment to stay informed, to continually assess your needs, and to monitor their own health. It would be wrong to look solely at the needs of the patient and to neglect those of the family. Each family is unique and will respond to the challenge of providing home care differently. At the same time, relatives should not feel guilty if they find that a hospice is more suitable for your needs. It is important to listen to your loved ones, to explore any fears they may have about your illness, and to identify the options available to them.

[* NOTE: By clicking on the title and buying this book from Amazon.com, you help support LPO.]

© Copyright 1997, National Kidney Cancer Association