Caring for an Impaired or Aging Adult: The Caregiver's Perspective

By Susan Hollander  

Family members experience a myriad of mixed emotions when they care for a person with a chronic, debilitating illness. Though they may feel loving, caring and hopeful, they can also feel sad, discouraged, alone, angry and guilty. They can feel tired or depressed. These feelings are appropriate and understandable considering the severity of the medical or psychiatric condition. Sometimes, the family of individuals with a debilitating illness find themselves overwhelmed by their feelings. 

The human condition is highly complex and feelings vary from person to person. People have different ways of handling their emotions. Some people experience each feeling intensely; others do not. Sometimes, people think that certain feelings are unacceptable; they feel that they should not have certain feelings or that, if they do, no one could possibly understand them. Sometimes they feel alone with their feelings. 

At times, caretakers have contradictory emotions. One might both love and dislike the same person. One might feel simultaneously that they want to keep a family member at home and put him/her in a nursing home. Having “mixed feelings” might not seem logical, but it is common. Often people do not realize or fully understand their ambivalence. 

Sometimes people are afraid of experiencing their true emotions. Perhaps these feelings are uncomfortable; perhaps one is afraid that it may cause them to use poor judgment; or perhaps they are concerned how others view them. These and other emotional reactions are not unusual. In fact, most of us will have similar responses at one time or another. 

There is no “right” or “wrong” way to handle emotions. Recognizing how you feel and having some understanding of why you feel the way you do is important, because your feelings affect your judgment. Unrecognized or unacknowledged feelings can influence the decision a person makes in ways that he does not understand or recognize. If you can acknowledge and recognize your feelings to yourself and to others, you then have a choice of when, where, or whether to express your feelings or to act on them. 

This piece provides an overview of some major reactions that you may have experienced in the past, or may encounter in the future.

ANGER 
People with a debilitating illness develop behaviors that are extremely irritating and that can seem impossible to live with. You will understandably get angry and may sometime react by yelling or arguing. It is only human to feel angry when faced with the burden and the sense of loss that one encounters when a loved one presents with a debilitating illness. For example; a caregiver may be resentful and angry about their responsibility. Thoughts like, “This had to happen to me. Why do I have to be the caregiver?” may abound. The caregiver may be angry because other family members are not helpful or involved. The caregiver may be impatient and angry with the patient for their irritating behavior. The caregiver may feel trapped. 

When you find other ways to manage your frustration or anger, the impaired adult’s behavior may improve. 

It is often helpful to think about the differences between being angry at the person’s behavior and being angry with the person herself. Your loved one is ill, and often cannot control her behavior. 

When you find yourself struggling with these emotions, it is important for you to remove yourself as the caregiver and allow yourself some personal time and space. You need to stay emotionally healthy, both for your own well-being and for the well-being of the patient. A support system (a relative, friend, doctor, social worker, psychologist or Rabbi) can help you deal with your emotional turmoil. 

GUILT
Sara, a woman in her mid-fifties with teenage children and a full-time job, had cared for both her parents. Her mother, crippled with rheumatoid arthritis, lived with Sara’s family for five years before she died. Within a year, Sara’s father suffered a stroke and lived with the family for an additional three years before his death. Sara’s teenage daughters resented the amount of time their mom gave to her parents, and her husband became impatient with how little time they had alone together. They had not had a vacation in five years. Since family and friends were not interested in helping her with the care of her parents, Sara and her husband rarely even had a night out alone together. As an employed caregiver, Sara frequently missed work and was distracted on the job whenever she had to consult doctors or take her parents for therapy during normal business hours. She felt alone, isolated, and overwhelmed by the stress. She was physically and mentally exhausted from trying to meet too many demands, not realizing that specialized support services were available in her community, and feeling that she had to be capable of handling these responsibilities on her own. When her mother-in-law became too frail to live alone, Sara knew hew family and job would suffer once again if she tried to balance household duties, a full-time job, and the care of both older and younger relatives. 

The trouble with feelings of guilt is that they can keep you from making clear headed decisions about the future and doing what is most appropriate for the ill person and the caregiver. 

Guilt has been defined as resulting from a sense of inadequacy or perceived offenses. Naturally, a certain amount of guilt helps to maintain a clear conscience and encourages one to behave in a socially appropriate and ethical manner. Yet, feelings of guilt are quite subjective and can lead to much anguish and mental pain. You may feel that you are falling short of your own self-perceived image. Guilt leads to feelings of unworthiness, shame and self-blame. If these feelings continue, the result can be a lifetime of misery. The best way to deal with this turbulent emotion is to share these feelings with a trusted friend or therapist. If healing is to take place, there must be a process of exploration, where the caregiver can understand what is realistic and acceptable. 

In addition to what a caregiver is currently experiencing with their loved one, a caregiver’s guilt feelings may be the result of past experiences with or behaviors toward their loved one. Feelings of guilt may erupt for wishing you did not have the responsibility of care, or for considering institutionalizing your loved one in a nursing home. Guilt may arise for being embarrassed by your loved one’s odd behavior and losing your temper, or for spending time with your friend, away from the person you love. One may feel guilty about denying the patient their independence; you may need to be firm about them not driving or living alone. 

Caregivers need to realize the realities that they must face when caring for a loved one whose medical prognosis is critical, chronic or terminal. For example, in the case of Alzheimer’s disease, a progressive and highly debilitating illness, neither you nor your doctor can prevent this progression. Yet, you can help your loved one enjoy each day, no matter what stage of the illness. For example, keeping the person active will not stop the progression of the illness, but it can help the person use her remaining abilities. 

If you feel guilty about taking care of yourself, or about doing things for yourself, keep in mind that it is important for your loved one’s well-being that your life have meaning and fulfillment outside of caring for her. Rest and the companionship of family and friends will do much to keep you going and may put those nagging guilt feelings in more proper perspective.

GRIEF AND MOURNING 
As a person’s illness progresses and changes, the caregiver may experience feelings of loss. Remembering “the way she used to be”, accompanied by feelings of sadness, discouragement and fatigue, can consume the caregiver. It is important to acknowledge that the grieving and mourning process may begin well before the death of a loved one. As noted earlier, it is advisable for the caregiver to have a support system of friends and family members that will help them care for themselves as well as their loved one. 

At a group support meeting for family caregivers of Alzheimer’s patients, a loving husband talked about his pain and horror over hitting his beloved wife, toward whom he had never raised a hand throughout their forty-two-year marriage. Throughout their marriage, his wife had regularly colored her hair. In an effort to preserve the familiar, the husband continued to color his wife’s hair when she became too debilitated to do it herself. Although normally an uneventful process, during one attempt to color her hair she suddenly became frightened and combative and would not allow him to rinse her hair. The husband tried every technique he could think of to calm his wife down, but his attempts were unsuccessful. Soon the color mixture began to burn his wife’s scalp and she became even more agitated, screaming in pain. However, she still refused to cooperate. With no one to assist him, and fearful for her well-being, the man hopelessly hit his wife in an effort to shock her into submission so that he could rinse her hair. The man was not lashing out angrily, nor was he abusive by nature. He was, however, desperate and alone, and he knew of no other way to help his wife. By the end of this tragic ordeal, both husband and wife were sobbing and heartbroken. The husband felt that not only had he lost his wife and marriage to Alzheimer’s disease, but that he had also lost himself along the way. This uncharacteristic behavior contributed to his overwhelming sense of guilt and repulsion. 

Family members grieve the loss of the person who used to be and who no longer exists as they once knew them. Caregivers may also grieve the loss of a piece of themselves and the role they once played in their loved one’s life. Consequently, not only does the Alzheimer’s disease victim lose his or her sense of self, but so too does the caregiver, who may question “Who am I?” or “Who am I in the context of my changing family?” 

THE FUTURE 
As caregivers, it is important that you thoughtfully plan for the future. The future will bring changes for the person with a debilitating illness and many of these changes will be less painful if you are prepared for them. 

Here are some of the things you may want to consider:

What will the ill person be like as her illness progresses and she becomes increasingly physically, mentally or emotionally disabled?

What kind of care will she need? 

How much will you honestly be able to continue to give to this person?

At what point will your own natural resources be exhausted?

What other responsibilities do you have that must be considered?

Do you have a spouse, children or a job that also demands you time and energy?

What affects will this added burden have on your marriage, your children or on your career?

Where can you turn for help?

How much will the rest of the family give of themselves to help you?

What financial resources are available for this person’s care?

What financial resources will be left for you after you have met the expenses of care?

What legal provisions have been made for your loved one?

Will the physical environment make it difficult for you to care for an invalid? (steps, a large house to maintain, proximity to stores, high crime area etc...) 

As time passes, you, as the caregiver, may change. In some ways you might not be the same person you were before the illness. You may have given up friends and hobbies because of your loved one’s condition or you may have changed your philosophy or your ideas in the process of learning to accept this debilitating illness. 

CARING FOR YOURSELF
As caregivers, we take on remarkable responsibilities. Yet, if we do not care for ourselves, we will have precious little physical or emotional resources to give to others. So remember: Take time for yourself. Keep up with family and friends. Avoid isolation. Make sure to find additional help if you need it. Recognize warning signs of deterioration. Finally, enlist the services of a professional counselor or join a support group. Hopefully, with proper planning and with a realistic and positive attitude, you will get through this tumultuous time—one day at a time.