It is well-recognized that patients with long-term illnesses such as terminal cancer or Alzheimer’s Disease go through phases of inevitable decline. Transition into a new phase requires the medical team to make appropriate adaptations to patient care. Through my work with caregivers serving family members with such serious illnesses, I have found that while the changing needs of the patient are anticipated and met, the concomitant change in the needs of the caregiver are often overlooked.
In some cases the family member, usually a spouse or daughter, is the primary caregiver. In other cases the family member oversees home healthcare professionals who provide direct care on a daily basis. Both situations generate significant levels of stress for the family member. To sustain her own physical, mental/emotional, and spiritual health, the family member needs to be intentional about her own self-care. Self-care programs need to be flexible and dynamic. Strategies that served the caregiver well in the initial phases of her loved one’s illness need to be reassessed and changed as the illness progresses.
Prolonged involvement in stressful environments takes a toll on a person’s physical and mental health. This is certainly the case for caregivers dealing with the inevitable decline of a loved one. Prolonged stress leads to increases in cortisol and other stress-related hormones that can depress the caregiver’s immune system making them more prone to health problems. Caregivers often live with interrupted sleep as they respond to patient’s needs during the night. Exhaustion and an ongoing sense of loss and grief can contribute to depression and a sense of hopelessness.
Far too little attention is given to the tremendous stress such caregivers live with on a daily basis. In my work I help caregivers take a close look at the state of their physical, mental/emotional, and spiritual health. What strategies are they using to help themselves sustain health in all these areas? Which strategies are working well, which are not? As the patient declines further and the stress on the caregiver increases, what adaptations are needed in self-care?
Caregivers are often very observant of the changes in their loved one’s mental, physical, and spiritual health. At the same time, they may be giving no attention to the significant changes occurring in their own health. They cannot assume that strategies that served them well early in the family member’s illness are going to be sufficient to see them through a long journey. Failure to recognize the inevitable increase of stress they are under can lead them to feel they are becoming less patient, less compassionate, and less competent. Caregivers report increased feelings of being overwhelmed and a diminishing sense of confidence in their ability to function well. Failure to address these issues puts the caregiver at greater risk of illness and reduces their ability to provide the care their loved one needs.
The specific components of a self-care plan will vary for each individual. In this brief paper, it is impossible to cover the range of issues that caregivers face. However, I want to address a few critical considerations that are relevant to nearly all caregivers.
Interdependence of Caregiver and Family Member with Illness
Although there are many reasons why caregivers fail to give sufficient attention to their own self-care, one major reason is their failure to appreciate the profound interdependence of the caregiver and the family member in declining health. One way to probe this interdependence in speaking with caregivers is to consider the caregiver as a fresh water well.
Fresh water wells penetrate deep into the earth and tap underground water reservoirs. Reservoirs are continuously fed by underground streams that are in turn fed by rainfall and snow melt. A well with a deep reservoir can provide fresh water to sustain the lives of families and whole communities for many years. Deep, well-built wells function beautifully for long periods of time. However, they cannot function in isolation. If the streams and underground resources that feed them dry up, an otherwise excellent well provides no water.
It can help a caregiver to imagine herself as a fresh water well. As long as her water–her energy, her physical, mental, and spiritual energy–is being fed by deep streams, she can provide for her loved one’s needs. However, if she runs dry, if her physical, mental, and spiritual energies are depleted, she will be unable to care for her loved one with the strength, patience, compassion, and competence that is needed. Sustaining her own health requires intentional self-care.
I use the term “self-care” to represent ways caregivers sustain their physical, mental, and spiritual health. Wise self-care does not eliminate the significant stress involved in caring for a loved one. Rather it supports the caregiver in sustaining the balance and energy to face the challenges of each day.
The deep underground streams that feed a fresh water well represent unique sources of energy that fuel a particular caregiver’s physical, mental/emotional, and spiritual health. A factor that often complicates caregivers’ willingness to engage in adequate self-care is guilt. Many caregivers report feeling conflicted about going out to eat, to movies, spending time with close friends, or participating in groups away from home because their loved one is unable to do those things. They feel guilty enjoying themselves or getting help for themselves personally when their loved is suffering. Such guilt can be debilitating and self-defeating.
If caregivers think seriously about the need for their own reservoirs to be continuously fed so they can care for their family member, they may be able to release or minimize the feeling of guilt and realize that they are serving their loved one by taking care of themselves. This is not rationalization or self-justification. It is a reality that when they are in good physical, mental/emotional, spiritual health, caregivers are in a better position to care for their loved one with patience, compassion, and competence.
It is true that there are caregivers who feel so resentful and angry about having to care for a family member that they run to engage in outside activities every moment possible. In this case, feelings of guilt may be an honest reflection of underlying conflicts that need to be addressed with a counselor or therapist. They may feel it is unfair that they should be in this situation. Expecting life to be “fair” is ill-advised. There are no families untouched by illness, reversals of fortune, great disappointments. Mental health emerges from the ability to face reality as it is, not clinging to ideas of what we wish it were or think it should be.
It is important to note that the best of caregivers sometimes wish to just run away. They feel overwhelmed and can’t imagine how they are going to continue. Such feelings along with anger, resentment, and self-pity are to be expected in the course of such trying conditions. When the feelings occur, it is important to acknowledge them, be kind to oneself, breathe deeply, and remember these are just thoughts. Excellent caregivers are human beings, not saints. Developing healthy outlets to release such negative thoughts and feelings is important. Beating oneself up for having such thoughts is self-defeating and does nothing to help the patient.
Recognizing the interdependence of the patient and caregiver can help caregivers accept the need to assess the adequacy of their self-care on a periodic basis. The following aspects of self-care are important considerations for all caregivers. The specific forms self-care takes will vary for each individual.
Developing a Safety Net of Support
Caregiving in particularly challenging situations is a high wire act. Living at such dizzying heights requires a good safety net that provides protection and solace for the caregiver. Caregivers need to be intentional about developing, evaluating, mending, and augmenting their support safety net on a regular basis.
Nets have many nodes that keep them strong. There may be a few large nodes that are critical to the strength of the net – key people on whom one can rely. These may be professionals who provide information and/or counseling. There may be one or more family members and friends who serve as major nodes. These critical people are available, reliable, and respond in ways that serve the particular needs of the caregiver.
People who serve as critical nodes may change over time. With prolonged illness, caregivers find that some people who were supportive initially become less and less available. Caregivers need to be aware of such changes and take steps to repair and modify their nets. As the patient declines, the caregiver’s needs will change. Individuals who previously served the caregiver well may not be able to meet their changing needs. It is important to mention that the failure of close friends or family members to sustain involvement with the patient and caregiver over time is common. This can cause great pain, disappointment and anger.
Joining a local support group or finding one on-line may be useful for some caregivers. The internet can provide information about groups related to a particular illness.
A well-functioning support group offers participants:
Monitoring Physical Health
The demands of caregiving can make it difficult to pay attention to one’s own physical health. Developing an intentional plan for attending to one’s diet and exercise is critical.
If is helpful to have food in the house for easy, nutritional meals. Many caregivers report that they don’t take time to eat well. They snack during the day rather than sitting down and eating a good meal. When we are tired and under stress our bodies often crave foods that do not serve our long-term physical health. Keeping high quality, nutritional food available in the refrigerator or freezer can make it easier to maintain a diet that promotes physical health.
Caregivers report the need to feed the patient at mealtime can make mealtime difficult and unpleasant. Some find eating at the table alone upsetting. These factors may also contribute to a caregiver eating poorly. While certainly understandable, it is important for caregivers to find workable ways to eat healthy food on a consistent basis.
It can be enjoyable and relaxing to have a glass of wine with a meal. Caregivers report the need to monitor their drinking and use of prescription medications, however. With prolonged stress, it is easy to begin drinking too much or relying on medications in ways that undermine physical and mental health.
Physical exercise plays a key role in sustaining health. For some this may involve going out for walks regularly, going to the gym, or putting music on and dancing in the house. When we are tired it is easy to think exercising is just too much. However, most caregivers report that their energy increases with exercise once they get themselves going. Over time they develop increased stamina. For some it works best to have an exercise partner, perhaps a neighbor who likes to get out for brisk walk through the neighborhood. The key is to find something the caregiver can do easily and regularly that works well for her body.
Caregivers need to pay attention to changes in their own physical health and check with their doctor if symptoms persist that might indicate an underlying problem.
Monitoring social engagement with others
Caregiving can lead to a sense of isolation. It is important for caregivers to engage in the forms of social activities that are most nourishing to them. Spending time with good friends is an important way to replenish the deep reservoirs we need to stay healthy. Many caregivers report feeling guilty if they go out with friends because their loved one can’t participate. This can lead caregivers to forego pleasurable activities that actually contribute to their ability to care for their loved one to the best of their ability. As the patient experiences steeper decline, it may be important for the caregiver to increase the amount of time she spends with good friends in order to deal with the increasing stress of caregiving.
Monitoring and adapting self-care as stress increases requires evaluating what social engagements are healthiest. With the increasing demands of caregiving, it is critical to prioritize the time one spends with others. Rather than spending time with people based on old habits, caregivers are wise to evaluate what encounters strengthen them. Some people drain our energy and leave us feeling tired and edgy. When one is under the continual stress of caregiving, it is wise to limit time spent with such people. Some caregivers feel energized engaging with large groups of people; others are energized by engaging with just one or two people at a time. Caregivers need to be self-aware and make intentional choices about the people with whom they spend time.
Recognize that talking on the phone and being connected to people can be both energizing and enervating. Many caregivers report that others want to support them, talk to them, and be there for them at a time when they are exhausted and don’t want to talk. What they really want and need is to read a book or take a bath. This leads to some delicate issues. Caregivers may need advice and support in learning how to let others know that they appreciate the concern but need to be quiet. There can be conflict and misunderstandings if adult children want to offer support with their daily morning or evening call. As grateful as the caregiver may be for their love and concern, it may be exhausting and unhelpful to the caregiver. There are no easy answers to these issues. Caregivers may need to engage the support of a wise friend, a support group, or a therapist to work through ways of handling these situations. Ideally friends and family appreciate the tremendous stress the caregiver is under and will not be defensive if the caregiver says it is not a good time to talk. Unfortunately, many people are unable or unwilling to make it easy on the caregiver to set up healthy boundaries.
Beyond the time and energy involved in conversations with close friends and family, the content of conversations can also be a source of stress. Well-meaning family members or friends may inquire frequently about patient care: has the caregiver taken the patient outside, recorded the patient’s eating habits, or arranged for a new medical test? Some callers may doubt the adequacy of the caregiver and believe different, better care is needed. Others may believe the caregiver is doing a great job. Yet they believe it would be helpful to ask questions about what kind of care is being given and report on new approaches the caregiver might consider. Whether the caller is motivated by critical feelings or intends to be helpful, the effect on the caregiver may be the same. Questions about the care being given and suggestions for new options may add more stress and contribute to feelings of frustration and exhaustion. The caregiver may need help from a friend or professional to develop ways of handling debilitating calls to reduce the toll it takes on the caregiver.
Many caregivers are engaged in multi-generational relationships. A wife whose husband has early onset Alzheimer’s Disease may also have parents, children, and even grandchildren who are also important in her life. Caregivers in these situations may need to find new ways to “be there” for these family members as the demands of patient care change. It may be necessary to establish or re-examine the boundaries and limitations within relationships that may not have been needed before.
With self-care in mind, many caregivers find simple ways that do not demand much time or energy to let others know they are thinking of them. It is important to the caregiver to express their love and interest in friends and family members whom they may rarely have a chance to see in person. The caregiver’s needs are well-served by knowing they are expressing their love to those people who are special to them while respecting their own limitations.
Social engagement need not always involve verbal interaction with others. Many caregivers report that participating in a yoga class, for example, provides a time of gentle movement and relaxation with others whom they enjoy seeing.
In addition to social engagement with people, many caregivers derive significant social support from pets. Dogs and cats often provide a critical source of love and companionship.
Monitoring Mental/Emotional Health
Developing and engaging a social safety net, attending to one’s physical health, and monitoring one’s social involvement with others contribute to one’s mental/emotional health. Prolonged stress and exhaustion affects mental function. Caregivers may find it helpful to have a specific notebook in which they keep notes about the patient’s condition, dates of appointments, changes in medication, and information about on-line resources, etc. In the past one’s memory may have been excellent and easily able to hold the changing data. When we are tired and stressed, our memories do not function as effectively. When caregivers begin to make mistakes, it adds further stress and contributes to a cycle of frustration that can contribute to depression. For some caregivers tracking information on a smart phone or tablet is the easiest way to keep and access information. For others, learning new technology to track information just adds frustration and a sense of incompetence. Caregivers need to be encouraged to use whatever means serves them best whether the technology is old-fashioned or new.
There are simple deep relaxation and meditation techniques that can be used throughout the day for brief periods of time to release the buildup of stress in the body and clear the mind. For example, one can sit in a comfortable chair, tense and release the muscles of the body a couple of times, then take ten slow, deep diaphragmatic breaths. On the inhalation, the belly should extend, allowing the oxygen deep into the lungs. Exhale slowly and fully. When we are under stress we often breathe shallowly, using only the upper part of the lungs. This puts more stress on our cardiovascular system and reduces the amount of oxygen going to the brain. Ten slow, deep breaths followed by 2 or 3 minutes of sitting quietly can help break the stress cycle that builds in the body. There are also energizing breathing techniques one can learn to give oneself a quick boost of energy.
It is wise to intentionally plan several of these breaks throughout each day. Such brief breaks add up during the day and help to replenish the caregiver’s reservoir.
If caregivers enjoy movies or watching television, it is helpful to choose shows that are funny, uplifting, encouraging, or strengthening in some way. During periods of high stress, it is not helpful to watch depressing, violent shows. Researchers have found that our brains respond to what we watch whether the story is true or imaginary. Frightening films can raise our blood pressure and lead to the production of stress hormones as if what we were watching was actually happening. A few minutes of belly laughing changes the chemistry in the body and increases energy. Taking time every day to intentionally read or watch something that makes them laugh, along with retaining their sense of humor in general, can calm the mind and feed the caregiver’s energy reservoir.
Many caregivers find it essential to check in with a trusted therapist regularly to talk through what they are feeling and experiencing. Therapists can help them understand what is happening mentally and emotionally as they care for their loved one and can guide them toward constructive ways of coping with their reality.
The spiritual dimension of life involves our deepest values, our ways of understanding the meaning and purpose of life, our view of what life is all about. Some people find their spiritual life is fed by participation in a community of faith. They derive understanding and solace from the teachings and beliefs of their faith.
Some people do not associate their spirituality with a particular religious tradition. Despite diverse spiritual perspectives, many caregivers report that their sense of life’s meaning and their deepest values are clarified in the fire of daily caregiving. They are challenged to look at themselves deeply and learn what they are capable of. When self-reflection is done honestly with a large dose of gentleness and self-compassion, caregivers find themselves becoming wiser, stronger, more resilient people, despite the trauma of their daily life.
Through daily spiritual practices such as inspirational readings, prayer, and meditation, many caregivers find the strength they need to face the day. They learn to find beauty and goodness in small things and small acts of kindness – cardinals and chickadees that visit the bird feeder daily, a neighborhood child who smiles and waves as she passes the house, a card from a dear friend. They seek to appreciate the strength the loved one has left, the unexpected song he begins to sing when the radio plays, a loving touch. So much may be gone, but there is still much for which one can be grateful, if one chooses that view. When we focus with gratitude on what we have in our life rather than on what we do not have, it feeds the reservoirs of our life in every possible way.
Approaching Self-Care as a Dynamic Process
Caregivers need to be encouraged to see their own self-care as a critical part of caring for their loved one. This requires that self-care be intentionally planned and regularly monitored. When caregivers understand self-care as a dynamic process, they will be in a better position to develop and sustain their physical, mental, and spiritual health throughout the strain of a long illness. This, in turn, will help them provide competent, compassionate care to their loved one.