Care for the Caregiver

You have made a choice to care for your loved one at home. This may have been an emotional and difficult decision for you, as it is a time of uncertainty. It’s only natural to be concerned about your ability to provide at-home care. It’s important that their physical needs are met so that they are comfortable and able to appreciate the time you spend together. Still, you should also understand that each person’s abilities as a caregiver are different. Remember, you do what you can. You are only one person and cannot do everything. Your role as a caregiver lets you offer to your loved one great comfort and support.

It is important to understand that although the disease and its symptoms happen to the patient, illness effects the entire family. Emotions may be intense. Your loved one may be feeling angry and may direct this anger toward you. They may be resigned to the reality of their impending death and you may be feeling angry about this, thinking your loved one has “given up.” This anger is often a result of frustration. There are lost opportunities and dreams, especially as your loved one becomes less independent and more debilitated. Your loved one may not realize that they are acting differently or that this is a difficult time for you as well. Try to share your feelings with them. Let them know you still love them, although you are frustrated, sad, or tired. You can share your fears and frustrations with members of the hospice team. The hospice team is available to help the entire family cope with the difficult and unpredictable emotions.

Support Systems

Hospice is unique in its inclusion of support for the patient’s family prior to the patient’s death as well as for a year after the death. Throughout the life cycle, the individual and family utilize support and services from the community in which they live. During periods of crisis, the family must draw on the expertise and specialized services of extended systems in order to ensure its survival. Hospice supports the family in caring for their loved one, recognizing that the family best knows what will make their loved one comfortable and bring enhanced quality of life. This individualized approach to care recognizes the family to be an essential member of the hospice team.

It is important to realize that although disease and its symptoms happen to the patient, illness has an effect on the entire family. Caring for the hospice patient at home can be rewarding, however, it is physically and emotionally draining for both the caregiver and the family.

During the illness, the patient at times may act angry or strange towards the caregivers. This can cause hurt feelings or anger on your part. In most cases, the patient’s lashing out actually means “why did this have to happen to me?” This behavior is most often directed towards the persons the patient knows will continue to love and care for them in spite of these bad moods. Try to realize that this anger is a result of frustration. If the patient does act angry or hostile, try to discuss your feelings with them. Be aware however, that the patient may not realize that they are acting differently. You can share your fears and frustrations with members of the hospice team. They are there to help the entire family cope with this difficult time.

The physical demands of home care for the hospice patient are often strenuous. It is important that you, the caregiver, take time for yourself, as well as take care of yourself. You’ll need moments of rest and relief, if you are to keep physically and emotionally able to help the patient. Plan time for yourself to get out of the house. Other family members or friends can help, and sometimes they are just waiting to be asked.

Try to get at least 6 hours of sleep each night, and take naps while the patient is sleeping during the day. If you find that your are becoming exhausted, let your primary nurse know. She may be able to suggest an easier plan to meet the patient’s needs. Using community help, or perhaps the services of a home health aide, are other alternatives. Try to remember that you are only one person and cannot do everything. Time spent on your regular responsibilities, such as household chores, yard work, and shopping should be lessened, or may have to be taken on by others.

Other Family Members

Each member of the family is unique and will deal with the patient and their needs in their own way. Although facing illness and death as a family makes it easier, not all families can be open and share their feelings. Sometimes sources outside the family (your nurse, social worker, minister, priest, rabbi or counselor) can help with the situation. They can help to bring family members together to talk, listen, and help one another.

Children have some special needs in dealing with illness and the impending death of someone they love. Depending upon their age and stage of development, death may have different meanings to them. It is important to answer their questions honestly and in a way they can understand. Having the children spend time with the patient as well as letting them help with the care of the patient is a good idea. This involvement will usually go a long way to lessen their fears. Children will need extra comfort, affection and structure during this time since their normal routine has been upset.

Spiritual Care

For some hospice patients and their families, a religion, a church community and their own personal relationship with God can be a strong source of strength during a difficult and searching time. You may want your local clergy or a pastoral counselor or minister from the hospice team to become more involved with your family at this time. Your primary nurse can help you contact a clergyperson if you desire one. The nurse can help to explain the patient’s situation to the clergyperson before their first visit to your home. Although some families find meaning and comfort in their faith, others may not find religion

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