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Caregiving: to the Patient – to the Caregiver

“When my wife was diagnosed with cancer I was shocked and frightened. Not only did I fear losing the one person that I felt that I loved and needed most in the world, but I wondered about my ability to care for her. I wondered, was I up to the task?”

A cancer diagnosis brings a myriad of emotions and feelings for patients, partners and family members. Cancer affects the entire family as roles and expectations change. The more disabled the patient becomes, the more disrupted routine life is and the need to provide personal care increases. Most patients experience some change in their ability to function independently whether this is transient (i.e., during a period of treatment such as surgery, chemotherapy or radiation) or more permanently from consequences of the treatment and/or progression of the disease. Those who are closest to the patient often must step into a role as caregiver, which can require a considerable amount of time, fortitude, energy and emotional strength. Caregiving is a challenging task for most and can be extremely stressful for many.

Caregiving is a word that is innately understood, yet does not exist in most dictionaries. Its definition evolves out of the responsibilities that become assigned to it. In a study conducted by the National Family Caregivers Association (NFCA) the types of tasks that the caregivers reported as doing serve to define this role:

  • Housework, meals, laundry and groceries 69%
  • Activities of daily living including feeding and dressing 61%
  • Emotional support and companionship 54%
  • Guardianship, legal responsibilities, financial management 35%
  • Transportation 23%
  • Healthcare tasks such as bandaging, giving medications, etc. 21%

These activities are often done in addition to jobs outside the home and child-rearing responsibilities. A common set of emotions also defines these roles and establishes a bond among caregivers. In an article entitled The Common Bonds of Caregiving these feelings are noted as follows:

  • Sadness that comes from wanting the miracle of normalcy;
  • Upheaval of changing family dynamics that occurs because life has been turned upside down;
  • Grief which caregivers and care receivers all experience in their own personal and private way;
  • Stress from feeling that they don’t have enough leisure or personal time;
  • Frustration because it is so difficult to get things done;
  • Isolation that comes from living outside the norm.

The emotional well being of the caregiver is a concern that emerges. Caregiving often leads to decreases in sleep and in pleasurable social activities that then lead to isolation, fatigue and depression. Multiple studies have shown a relationship between caregiving and clinical depression. In the NFCA profile, 61% indicated that they had more depression, 51% reported sleeplessness, 41% reported back pain, 24% had stomach disorders, and 27% had headaches. In a recent study presented at the American Society of Clinical Oncology, researchers found that there was a higher rate of divorce in couples in which the woman was the patient. All of these studies suggest that caregiving takes its toll and emphasizes the need for intervention.

Before turning to strategies for coping, however, I must note that there are data to suggest that caregiving has its rewards. Many caregivers indicate that there is great satisfaction in their acts of giving even though this supportiveness can be extremely difficult to do. The NFCA study listed the following three positive outcomes reported by caregivers:

  • They found an inner strength they didn’t know they had 70%
  • They developed a closer relationship with the person they helped 36%
  • They learned proactive skills 34%

Harry Cole, who cared for his wife after a stroke, wrote in the book Helpmates: Support in Times of Critical Illness:

“Caring for someone whose personal well-being may totally depend on us presents us with a singular opportunity to discover our capacity for loving another person while learning about our strengths and weaknesses and the values that shape our lives. It is a time for intense, albeit painful, self-encounter and growth . . . which, as I believe from my own experience, is the only time when real growth occurs.”

His words are particularly relevant because they provide a perspective that care giving provides an opportunity for personal growth. Many patients speak of the cancer experience in this way, and it can be true for caregivers as well. Getting to this place, however, is not easy. The tasks are difficult, the demands are often great, and the rewards may be subtle and of a more personal nature that must be searched for through self-examination and reflection.

What might I offer to those caregivers who read this article? First, I offer recognition of how important, necessary and valuable caregivers are. Second, I offer some ideas about how to cope and some potential resources. The following suggestions are a beginning step in this process:

Get information. Understanding the disease affecting the person you are caring for can go a long way in helping to facilitate care. The information you need may change as the patient’s disease status changes. Continue to seek information from medical care providers, social workers, and mental health professionals so that you are fully informed about the course of the disease and the necessary care. The Resource Center has many pamphlets on cancer, pain control, etc. In addition, we highly recommend the book, Caregiving: A Step-By-Step Resource for Caring for the Person with Cancer at Home, (Houts, P. and Bucher, J., American Cancer Society, 2000).

Set realistic priorities and goals. When you become a caregiver, you have assumed another responsibility. It is unrealistic to think that you can continue to do everything exactly as you did prior to this event. Be realistic about what are the most important goals each day, each week, each month. Set priorities and stick to them as best you can. Think of a three-drawer dresser with the top drawer holding the highest priority items. Imaging putting the needs in each drawer, and work to the best of your ability on those items in the top drawer. Remember that you cannot do everything, and feeling guilty about what you cannot do is not going to improve the situation. Remember to acknowledge what you do accomplish, not just what you do not do.

Seek and accept help from others. It is very easy to think that you can do it all and that you need to be self-reliant. This is a “thinking” error that will lead to increased stress. First, think of saying “yes” when friends and family offer to help. Second, think of a list of things that they can do to help you and do not be afraid to tell them exactly what you need. Third, if unsolicited offers do not come from those in your network of friends and family, then call them and ask them to help. Many people feel great satisfaction in helping, but they may need you to direct them. Be concrete in stating the help that you want unless you have creative people in your environment who have great ideas.

Maintain your physical health. If you get sick, the person you are caring for is going to be in real trouble. You must maintain your health by eating nutritional, well-balanced, healthy foods, sleeping an adequate amount, getting some physical exercise at least three times per week, taking your vitamins and/or medications, and seeking the proper medical consultation when problems arise. Do not delay in seeing your physician for your routine exams or to assess new problems. Too often, these basic issues are neglected, and the consequences can be severe.

Take a break and allow time for yourself. Many caregivers have a hard time taking time for themselves. Even though the patient you are caring for may be suffering, you will burn out if you do not get away regularly. You need time to see that the world exists separate from the illness, to meet some of your own needs and to regroup so that you can come back to your giving with a desire to give. Anger and resentment can build in these relationships and taking breaks can help to diffuse these feelings. Breaks are not optional – they are a necessity. Be careful that you and those around you do not start to regard routine tasks such as shopping as breaks. A break should be a time when you do something that brings pleasure to you, is of your choosing, and allows you to think about something else. It might be a special class, a meal with friends, seeing a movie in a theater or playing tennis.

Learn stress-reducing strategies. Being a caregiver is stressful. You are required to meet the physical and psychosocial needs of another person. The person who is being cared for may be sad, depressed, angry, and resentful about all that happened to create the current situation. It is common for a caregiver to absorb these emotions, in addition to all his or her own feelings. If the stress levels get too high, there is an increased chance of emotional explosion. There are many stress-reducing strategies that can be helpful, many of which the patient and caregiver can do together. These include techniques such as meditation, deep muscle relaxation, deep breathing exercises, guided imagery, and mindful meditation. Our Resource Center offers a class called Mind/Body Approaches to Coping with Cancer. It is open to patients and an adult family member or caregiver. A variety of techniques are taught in this class, and I highly recommend it to all caregivers. If the person you are caring for is not well enough to attend the class, then arrange for someone to take care of that person while you come learn some techniques for yourself.

Evaluate and get treatment for depression. Research indicates that depression is a potential side effect to the trauma associated with cancer and caregiving. Pay attention to your mood and sleep patterns and look for the symptoms listed below. If you think that you may be suffering from depression, especially if you have had depressive episodes in the past, seek professional consultation. You can start with a consultation with your family physician, but a psychiatric consult may be more appropriate. Appropriate evaluation with the possibility of medication may be helpful. Some of the signs of depression include:

  • Severe disruption of sleep patterns – difficulty falling asleep, staying asleep, or waking up.
  • Persistent appetite changes, including a significant decrease or increase in food intake.
  • Inability to experience joy in any activities.
  • Significant and persistent difficulty in getting through the day.
  • Persistent feelings that life is “not worth living” or intrusive thoughts of suicide.
  • Unremitting feelings of sadness.
  • High anxiety levels and/or recurring panic states.
  • Impaired cognitive function, i.e., a noticeable decrease in your ability to think clearly or concentrate such that it is difficult to work and carry on normal activity.

Participate in support groups or classes. Support groups and classes that are oriented toward relationship issues, family, friends, and caregiving responsibilities have the potential to be helpful. It is important to know that you are not alone and that others may be experiencing similar emotions and difficulties. Groups can provide support and information that may lead to creative problem-solving. Different support groups offer different advantages so it is important to identify what you need. Talking with an oncology social worker can help you to sort out which groups might best suit your needs. Some recommendations offered at UCLA that are high on my list and provide different kinds of support are:

  • Couples Together: A support group for patients and their partners. Two therapists, male and female, facilitate the group. Even reluctant partners have found this group to be very helpful in improving communication, increasing the positive experiences between partners, reducing stress, and creating greater understanding. In light of the recent research on couples, I highly recommend this group for couples, especially when the partner with cancer is in the early phases of the disease and treatment.
  • Family and Friends: A support group for family and friends who have someone close to them with cancer. The group is an open discussion format led by a mental health professional. It is an opportunity to share experiences and find support among others who are struggling with caregiving.
  • Caregiver Program: This is an educational and support program co-sponsored by several oncology programs at UCLA. It is a six-week program designed to equip caregivers with relevant information about caring for someone who is quite ill from cancer and its treatments. It includes information on medical management at home, hospice care, family issues, pain control, etc.
  • Mind Body/Approaches to Coping with Cancer: Usually offered on a Saturday morning at our Center, this seminar is for patients and/or significant others. A variety of stress-reducing strategies are taught.

Understand your emotions. It is natural to have a host of emotions during times of prolonged or intense caregiving. These emotions include anxiety, stress, sadness and loss, as well as frustration and anger. These are normal reactions to difficult situations. Anger is particularly common, and is normal. It is important to understand these feelings and to find ways to manage them to reduce the likelihood or frequency of their being acted out in the caregiving relationship. Professional assistance may be important because it offers you a place to work through your feelings. One way to help manage feelings is to keep a journal and take time to write about your feelings. The expression of these feelings can help relieve the pressure. Positive and negative feelings are a normal part of this process.

Find some joy without guilt. It is very hard to have fun in the face of tremendous loss and hardship. This is a real challenge, but it is an important one. Try to find ways to have some joy or fun in life, even if only for brief periods of time. Joy helps to renew you and give you greater strength to manage the stresses, sadness, and difficulties. Feeling guilty about enjoying yourself is counterproductive, and so it becomes imperative to find ways to have joy without guilt. It is common for people to talk to themselves inside their heads. These words produce feelings of guilt. This “talk” can be altered and reframed to be supportive rather than guilt-inducing. It may take a conscious effort and practice. Here are some suggestions for reframing your self-talk:

  • “If I experience some joy, I can bring this joy back to the person I am caring for, and it will do both of us some good.”
  • “If I can find a temporary relief in some feelings of joy, I will be happier and more loving when I return.”
  • “My feelings of guilt will not change the circumstances, but having some fun can change my attitude and ability to cope.”

Know when to listen and when to deflect criticism. It is easy for those outside your situation to have clear ideas about how you should do your job as a caregiver. Friends, family and relatives may have helpful suggestions, but their words can still feel like criticism. It is important to try to listen to other’s suggestions and try to evaluate whether their ideas might be of value to your situation. It also is important to recognize that they are not the ones providing the care and coping with all the stresses. If you and the individual you are caring for are comfortable with your caregiving, let this be known. It also may help to look for ways in which the other people may be able to help you and to become involved in the caregiving process. Sometimes you just have to listen, and then go on. Consider having them read this article, including the suggestions below on “Supporting the Caregiver.”

Avoid self-destructive behaviors. Relying on coffee or other stimulants, cigarettes, alcohol, certain drugs and or overeating are destructive ways of coping with stress, depression, and anxiety. They lead to physical and psychological difficulties, including disruptions to sleep cycles. While they may appear to be helping you in the short run, over time they will only add to the difficulties at hand. Try to use some of the strategies listed above as alternatives.

Utilize any respite care you can find. There are a variety of ways in which you can get help, including paid nursing or caretaking support. Evaluate your resources. Find out if the patient’s insurance covers any outside help for nursing or nursing aids, and if it does, use it even if only for brief periods and for specific tasks such as bathing the patient. It may be helpful to hire someone for several hours each week to provide breaks.

SUPPORTING THE CAREGIVER

If you are concerned about someone who is actively caring for a person with cancer, you may want to think about ways in which you can help care for the caregiver. At times, you may wonder what you can do, but there is usually something that you can do to be helpful.

Keep in mind that different people have different levels of “the need for control.” Try to be respectful of these needs and offer your services in such a way that your offer does not produce additional stress. For example, some individuals want things done in a very particular way and are reluctant to let go of tasks because they feel they will not be performed in the way that they want. Be aware of this and ask exactly how they want the task done. In other situations, a caregiver may find that having to give explanations and suggestions is more tiring than carrying out the task. The caregiver may need you to step in and take charge even if you make mistakes. If the caregiver needs this type of help, tell him or her that you will take charge. When you are finished, let the caregiver know that you are willing to take suggestions for improvement so that next time you can provide better assistance. Being sensitive to these needs and the nuances of style can make your help even more valuable. Here are a few specific suggestions:

Volunteer your services. Volunteer to perform any task that is within your capability. Your assistance can be helpful whether you are taking care of the patient or unburdening the caregiver of other responsibilities. If you can drive, shop for groceries, provide transportation to a doctor visit, make a meal, clean the house, call friends and give reports or organize others, then you have services that can help. Be specific about what you can do. Don’t leave it up to the caregiver or patient by saying, “Call me if you need anything.” A better introduction to offering help is to say, “Let’s think of things I can do that might help. Here are some ideas that I have. Do you like any of these ideas or do you have something else I can help you with?”

Help the caregiver to get a break. Every caregiver needs breaks. The caregiver may be the only one who really knows how to do certain tasks, but many times others can learn how to do the tasks, or breaks can be scheduled at times of less intense need for the patient. Be willing to take over bathing, grooming, feeding, or even companionship for the patient. Having the chance to get out and take a walk or some other form of exercise is extremely important for the caregiver.

Be supportive of the caregiver’s efforts. The caregiver is under a lot of stress and does not need additional stress that comes from criticism. If you are genuinely concerned about the patient’s needs being met try to talk to the caregiver in a non-threatening and understanding way. Acknowledge that you recognize how difficult the task is and everything that the caregiver is doing well. Try to determine if the patient is in jeopardy or if your criticisms are more about your own personal preferences. If you are not providing the bulk of the care and you are not willing or able to help, your criticism/suggestions could be more harmful than helpful. Keep in mind that the caregiver may already feel that he or she is not doing the task as well as he or she would like to be doing it. Sensitivity to the caregiver’s struggles is very important. Try to acknowledge the caregiver’s efforts whenever possible.

Listen, listen, listen. The caregiver does not have cancer, but that does not mean that the caregiver is not suffering. They may be suffering from their own sense of loss at many levels. They may be stressed and having profound frustration as they manage the changes. Being available to just listen is quite helpful. The patient may have been the caregiver’s greatest source of support before he or she became ill, so the caregiver now is facing the greatest stress of his or her life without that support. Your understanding and comfort may be especially helpful during this time.

Support guiltless fun. The caregiver needs moments of joy. If you are able to provide some support in this way, and the caregiver is open to taking it, then do it. Invite the caregiver to your home or suggest ways that you can help provide a little fun. Encourage the caregiver to have fun without feeling guilty. Let the caregiver know that you understand how important this is.

SUMMARY

Caregiving is a difficult task that is both rewarding and exhausting. It requires considerable emotional and physical stamina and lots of support from friends and family. The ideas presented here should be used as stepping-stones to more information and support. If you are taking care of a person with cancer, please remember that your well-being is important and that it is essential to the patient who depends on you.

Anne Coscarelli, Ph.D.
Wallis Annenberg Director’s Initiative in Psychosocial Oncology

© Anne Coscarelli, Ph.D. All rights reserved. 2002.
For reprint authorization, contact SimmsMannCenter@mednet.ucla.edu.

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