A course called “Powerful Tools for Caregivers” was developed by an organization in Portland. You can read general info about the self-care education program for family caregivers at powerfultoolsforcaregivers.org.
As part of the course, class participants receive a copy of a book titled “The Caregiver Helpbook.” Brain Support Network volunteer Denise Dagan is reading the book and will be sharing the highlights, chapter by chapter. If you’d like far more detail that Denise’s summaries allow as well as access to the book’s terrific worksheets, note that the book is available for purchase ($30) in both English and Spanish at powerfultoolsforcaregivers.org.
The title of chapter five is “Learning from our Emotions.” This chapter “explores the difficult emotions connected with caregiving [including grief] – to help you understand and learn from them – and offers tools to help you manage your feelings.” Positive feelings like caring, commitment, and hope are addressed along with negative feelings like grief, resentment, anger, guilt, depression, sadness, fear, and frustration.
Here’s Denise’s report on chapter five.
Notes by Denise
The Caregiver Helpbook
Chapter Five – Learning from our Emotions
“Feelings are referred to as positive and negative, not because they are good or bad, but based on how they often feel. …guilt and anger feel uncomfortable to most of us and are often referred to as ‘negative.’ Love feels good and is referred to as ‘positive.’”
Often positive feelings, like caring and commitment, are accompanied by negative feelings, like resentment, anger, and guilt. This mix of contradictory feelings is normal. It is crucial to identify and accept them before you can accept loss.
Of course, “Only you know your losses since your situation is unique and what you perceive as a loss is based on how you view your situation. Another person may perceive the same situation differently.” Examples include loss of companionship, financial stability, health, sexual relationship, dreams for the future, independence, lifestyle as you’ve known it, etc.
Your care receiver may also be struggling with strong feelings, including sadness, depression, fear, and frustration. Use “I” statements, active listening, assertive and aikido communication styles to communicate as much as possible. There’s an exercise on page 92 to help you identify and communicate about your personal losses together, to maintain and build your relationship.
If/when illness limits your ability to communicate, read your caree’s body language, tone of voice, etc. Much can be said with a touch.
The Essence of Grief
“When you lose precious parts of your life, grief is a natural response.”
“Your grief response is uniquely yours and is determined by what the loss means to you.” How attached were you to what was lost? How will the loss affect your life? How have you coped with change and loss in the past?
“Grief brings…many strong, complex emotions. It may include loneliness, frustration, anger, anxiety, confusion, fear, guilt, resentment, sadness, and depression. Denying, avoiding, or minimizing feelings only complicates your grief response.”
Grieving your own way:
When someone becomes ill in a family, each person will grieve differently. “There is no right or wrong way to grieve, only your own way. … To honor each person’s grief response… makes it easier to accept the differences, rather than let them be a source of conflict.” Talking about it will help you to “respect each other’s feelings and become more supportive of each other.”
Anticipatory grief is a grief response that can be experienced before an actual death. When someone is diagnosed with a long-term illness both family members and the patient can anticipate the loss of abilities and independence, as well as the eventual ultimate loss of life.
Tasks of grieving:
“In his book, Grief Counseling and Grief Therapy, J. William Worden describes four tasks people must complete to reconcile loss and begin healing. They are an ongoing, sometimes slow process. They do not move in orderly stages, but rather in a fluid process that is interwoven with the rest of your life. The tasks are:”
1. “Accept the reality of the loss. Identify and acknowledge each loss. Do not deny or minimize them. This is an emotional and intellectual process and takes time.”
2. “Work through the pain of the loss.” “If you don’t work through your feelings you can compromise your physical and emotional well-being. … Doing grief ‘work’ is a difficult task. It is made more so when others are uncomfortable with your feelings and give you the subtle message that you ‘shouldn’t feel that way,’ or that you should ‘pull yourself together.’”
3. “Adjust to your losses. Adapting to ongoing loss and change requires that you recognize and accept what you can’t change. At the same time, efforts to change what you can will help you focus on pleasures that remain. This can give you a much-needed sense of mastery over your environment. If you strive to hold on to what is lost, you lose the precious opportunities that remain, and your frustration and grief will get worse.”
4. “Reinvest in life.” This, “empowers you to move forward. Rebuild your life, incorporating change and loss.”
A different kind of loss:
“If you are a caregiver for a person with whom you have had a difficult relationship, and are caregiving out of a sense of duty, you may still feel loss. … Your losses have more to do with what has never been and can never be.” Your feelings may “include a mixture of regret, resentment, anger, loneliness, and sadness.” They are, “complex and difficult to sort out.” You may find it, “helpful to talk with a mental health professional.”
These tools may help you grieve your losses:
* Express your feelings in constructive ways, including physical activity, writing, or other stress reduction activities.
* Talk about your feelings with understanding people.
* Give yourself permission to cry. It is a valid way to release feelings and tension.
* Get support. “A disappointment for many caregivers is when friends they thought would be supportive are not.” There are many ways to find someone who is, including other friends, family, a grief support group, clergy, or professional bereavement counselor. Most hospices provide grief support groups that are open to those who didn’t use hospice services. Funeral homes, and hospitals will also have grief support resources and may be able to help you locate a support group. There are also national grief support organizations with local chapters that host support groups.
Feelings and Caregiving
The caregiver’s feelings:
Your feelings are affected by situational factors, including:
* Your relationships with the care receiver. Has is been positive or difficult, for the most part?
* The caregiving situation. Is it 24-hours-a-day? Are you both a full time caregiver and employee? What about time for you?
* Your support system. Do you share caregiving responsibilities with family or friends or are you ‘doing it all?’
* Your strengths and coping skills when dealing with loss and change. Do you have healthy ways to relieve stress?
* Your reasons for entering the caregiving role. Did you feel you had no choice? Did you do so our of love?
* The care receiver’s personality. What impact the disease has had on him/her – emotionally, behaviorally, and physically.
“Feelings can be helpful. They can be a signal to stop and:
* assess what is going on for you.
* determine how you feel about the situation.
* make necessary changes.”
Current loss often resurrects past losses and feelings. Unresolved feelings of grief surface later in different ways, as evidenced by the example of a 54-year-old woman, Jean, who had overwhelming feelings over the loss of her mother when her husband became ill. Her mother had died when Jean was 16, but nobody talked about it. The feelings don’t go away, no matter how much we deny or avoid them. Jean now had to deal with the loss of her mother as well as current losses.
The care receiver’s feelings:
“Anger is a common response to chronic illness, and is often displaced onto others.” You may, “bear the brunt of this hostility,” perhaps because you are the only one there, or are most closely associated with the loss. “Maybe you are the safest person for the care receiver to express anger toward.”
“It’s important to understand all you can about the disease to better cope with the care receiver’s feelings and not take emotional outbursts and expressions personally. This can be hard to do.”
“When anger, resentment, and other negative emotions are directed at you, remember these are complicated emotions and the care receiver’s anger contains hurt and pain. The care receiver is responding to being chronically ill and dependent. Part of his adjustment, as well as part of yours, is learning to cope with difficult feelings. The better you both are at identifying and managing feelings brought about by the illness, the more your situation will improve. See Chapters 3 and 4 for communication tools that are helpful in handling difficult feelings.”
Common Emotions of Caregiving
“Denial – is the way people protect themselves from reality … when it is too painful to absorb all at once. … The situation becomes real, and denial lessens, with the telling of the story to someone you trust.”
Fear and Anxiety – comes with the ongoing uncertainty and stress of living with a chronic illness.
* Fear is directed toward a specific threat that you can identify, such as becoming dependent, pain, loss of control, etc.
* Anxiety is feelings of apprehension in the absence of a specific danger. It occurs when you are trying to control an unpredictable situation. With caregiving, anxiety has many sources, like:
– changing roles and responsibilities
– living with continuous change (emotional, cognitive, financial, and social)
“Often with fear and anxiety, a sense of dread and a vague sense of impending loss accompany a varity of physical symptoms and increased feelings of helplessness. Physical symptoms may include a feeling of uneasiness or agitation, cold hands and feet, and uncontrollable shaking or trembling. Muscles may be tense, especially in the neck and shoulders.”
“Circumstances alone do not cause fear and anxiety; it is what we think about them that affects our response.”
“As the Chinese philosopher Lin Yutang said, ‘True peace of mind comes from accepting the worst. When we have accepted the worst, we have nothing more to lose and everything to gain.’”
“If you are anxious or fearful about a situation, these tools may help:”
* Confront the worst that can happen.
* Educate yourself about the disease, treatment, and what you can expect. Eliminate as much ‘unpredictable’ as you can.
* Break fear and anxiety down into specific components. It is easier to cope with identified concerns than vague feelings.
* Problem-solve. Get the facts, analyze them, make a decision, then act.
There is an exercise on page 102 for problem solving to manage anxiety and fear.
“Anger – is complex…hurt, pain, frustration, and fear often underlie feelings of anger. It may seem easier to deny these uncomfortable feelings.”
“When you feel you are the recipient of unjust anger, these tools may help you handle the situation:”
* Set realistic limits. Try to wait for someone to yell themselves out. Otherwise, excuse yourself to talk about it later.
* Count to 20. Ask yourself if the anger is really directed at you. If not, reframe your perspective. Perhaps, “He is having a bad day.”
* Use humor to lighten the situation.
* Develop an awareness of your own feelings. This makes is easier to respond without anger.
* Develop defusing statements like, “This must be a rough day for you,” or, “I love you,” if appropriate.
* Use the aikido style of communication because emotional situations are ideal for aikido communication.
“Your own anger may appear as frustration, impatience, resentment, and perhaps withdrawal…. How can you admit anger about a spouse having Parkinson’s disease and totally disrupting your lives? After all, ‘he’s the one who’s sick, how can I be angry at him?’ Sometimes anger is displaced onto others, like the doctor or nurse.”
Its important to find healthy ways to manage anger. ’Swallowing’ your anger can have adverse physical effects.
Use these tools to manage anger in constructive ways:
* Recognize and accept your anger. You are less apt to displace your anger onto others.
* Use “I” messages. Avoid using ‘you’ messages and blaming others. See chapter 3.
* Structure situations so it feels safe and comfortable to express feelings. For example:
— Use a private room or place to talk.
— Agree that you will allow each other to express honest feelings without blaming the other. Use “I” messages.
— Set a time limit of 5-10 minutes for each of you to speak.
— Take turns talking. Do not interrupt
* Select the best time to express anger. There is often good reason for the old adage, ‘When angry, count to ten.’”
* Set realistic limits. When you experience unjust anger, say, “I will not stay in this room and listen to anger I don’t deserve.”
“Most importantly, use the energy and fire of anger to make positive changes.”
Resentment – often builds in caregivers who feel the balance of their giving outweighs the nurturing and support they receive.
These tools may help you avoid feeling resentful:
* Give ourself permission to take care of yourself. Maintain activities you enjoy. Find time for yourself.
* Get adequate rest. It is critical to caregiving because an exhausted caregiver is of no help to anyone.
* Set limits. Learn to say no honestly, even to the care receiver.
* Find small but important ways to help yourself, especially enlisting help of the caree. This reduces the caregiver’s burden and feelings of resentment, and maintains the caree’s independence and self-esteem.
* Take time for pleasure. Do activities together that you both enjoy. Don’t let tasks of caregiving dominate your relationship.
Guilt – can become inflated to unrealistic proportions. It is common for caregivers to feel guilty about their complex, difficult emotions, even though they are a normal part of the caregiving experience. You may simultaneously feel guilty as a caregiver for sensing the loss of having an unlived life, even while planning enjoyable activities in order to have a life somewhat independent of the care receiver – and guilty about the fact that you can do what he cannot. Its complicated.
“We all make mistakes and feel guilty. When this happens these tools might be helpful:”
1. Admit your mistake and apologize. Saying, “I’m sorry,” can be healing.
2. Correct the situation in whatever way possible.
3. Forgive yourself.
4. Ask forgiveness from the injured person(s).
5. Try to learn from the experience.
“If you feel guilty without clear cause, ask yourself:”
* Did I actually do something wrong, or do I just wish I dad done something differently?
* Am I feelign guilt or regret?”
“Regret is a sister to guilt and a feeling that is often present in situations involving loss… For example: Mark meant to call his mother. When she died suddenly, he regretted that he hadn’t. … Regret is ‘a feeling of disappointment or distress about something that one wishes could be different.’ Guilt is ‘a remorseful awareness of having done something wrong,’ or ’self-reproach for supposed inadequacy or wrong-doing.’”
“If you are having difficulty with guilt, try these tools:
* Talk with a supportive, understanding person about your feelings to help you clarify and come to terms with your feelings.
* Stop blaming yourself. Ask yourself, “Is this my fault? or do I just wish things were different? Is this guilt, or regret?”
* Ask yourself, “What did I do that was good and right?” Identifying the positive things is a counterbalance to guilt and blame.
* Understand the limits of your responsibility. Identify unrealistic expectations.
* Accept the fact hat no one is perfect. Mistakes happen. Its what we do with them that makes the difference.
* Seek professional help. This is especially important if guilt persists.
Depression – is higher among caregivers than in the general population, and even higher among caregivers of brain-impaired adults. This section discusses two types of depression most relevant to the feelings experienced by chronic caregivers: grief-related depression, and clinical depression.
Symptoms of depression
“Grief-related depression (the normal depression of grief) and clinical depression (depression that requires treatment) can look very much alike.” Both “can experience sadness, tearfulness, sleep problems, and appetite and weight changes. However there are differences. If you can understand these differences, you can better recognize depression in yourself (and others) and seek professional help. Grief-related depression…can develop into clinical depression.”
“Clinical depression tends to be characterized by:
* An inability to experience any pleasure.
* A sense of hopelessness and pessimism about the future
* Low self-esteem, low self-image, and feelings of worthlessness
* Suicidal thoughts or attempts
These symptoms are more severe, last for an unusual length of time (two weeks, or longer), and affect the ability to function.
Clinical depression is also diagnosed by at least five of these symptoms:
* Persistent sad or ‘empty’ mood
* Loss of interest or pleasure in previously enjoyed activities, including sex
* Increased fatigue, being ‘slowed down’
* Marked change in sleeping habits (insomnia, early-morning waking, oversleeping)
* Marked change in appetite; significant weight gain or loss
* Feelings of guilt or worthlessness
* Difficulty concentrating, remembering, and making decisions
* Thoughts of suicide or death that should be taken seriously by family and friends.
Depression is treatable. Up to 80% of people with serious depression can improve significantly with a combination of short-term talk therapy and antidepressant medications.
“Depression distorts our perceptions…we tend to see the glass as half empty and view situations negatively. Cognitive therapy helps identify distorted, negative thinking and learn how to ‘reframe’ those perceptions in a more accurate way.”
“Depression affects relationships. It affects how we think, act and feel toward others…Interpersonal therapy is designed to help people in their difficult relationships with others.”
“Both therapies deal with current thoughts, feelings, and behaviors…not what happened in childhood. They focus is on current difficulties and patterns that contribute to depression.” They “lessen depression by helping you learn new skills and ways of looking at and doing things.”
There are many antidepressant medications to choose from. They are not addictive or habit forming and are generally safe when taken as prescribed. They work by restoring balance of the neurotransmitters and restoring the brain to normal function. They can take a few weeks to work, although some notice improvement in a few days. As with any medications, follow instructions and report side effects to your doctor. You may try a few before finding one that works for you.
Alcohol, drugs, and depression
“Depression is not helped by alcohol or drugs. They only mask the pain from your feelings temporarily. Alcohol and tranquilizers depress your central nervous system and will make emotional depression worse.
Caring For Yourself
“Treat yourself as you would anyone you cherish. Be gentle and compassionate with yourself, not demanding or judgmental. Accept your human frailties, but at the same time, see your strengths.” “Managing the difficult emotions of caregiving…can give you an increasing sense of control over your situation. These tools may be helpful:”
* Participate in activities you enjoy. Rediscover those accomplishments that build your self-esteem
* Treat your body well. Eat properly, and exercise regularly for fitness and stress relief
* Use relaxation techniques. Develop awareness of tension in your body by doing frequent body scans. Go limp with special attention to the tense areas.
* Make use of books and tapes for information and tools for working with depression, stress, emotions, and relaxation.
* Get a good night’s sleep. Insomnia is common but often temporary so don’t worry about it. That causes more stress and sleeplessness. Instead: give up caffeine, avoid sleeping pills, try meditating or repeating prayers, get physically tired, and get up to read or work until you are tired.
* Get social support. Have at least one friend you can tell your troubles to. Avoid isolation.
* Attend a support group. They are a safe, supportive environment to share experiences and learn from each other.
* Write your feelings down on paper to keep in touch with and examine your feelings, as well as release those feelings.
* Change negative self-talk to positive self-talk because your emotions are derived from your thoughts.
Page 112 has an exercise to identify your feelings. It recommends doing it frequently as feelings are ever changing.
“Difficult feelings, including depression and suicide, can be the result of hopelessness and despair. An attitude of optimism and hope contributes to your well-being and even creates the potential for slowing the progress of an illness.”
“It is important to remember that even if you, as a caregiver, feel your situation is hopeless, it does not necessarily follow that the care receiver is without hope.”
“It’s important not to take hope away from another nor to instill false hope.”