DIMENSIONS Summer 1999

FACING GUILT: CHALLENGES FOR CAREGIVERS

Adapted by Julee Carper, CMFT

Note: Each issue of Dimensions features a contribution from one of the Alzheimer's groups in Washington. This article is reprinted with permission from the Alzheimer's Association Western and Central Washington Chapter.

When a husband, wife, family member, or life partner becomes the primary caregiver for a loved one with progressive memory loss, unique stresses can emerge within the relationship. Many changes start to take place, either slowly or rapidly, for both people. The memory impaired person becomes more confused and forgetful, needing more supervision. The "caregiver" takes on more responsibility for chores, meals, finances, medical needs and personal care. Whether at home or through visits to other care centers, many individuals feel various amounts of guilt at different points in the caregiving journey. Feeling guilty is a very common experience for families, spouses, partners, and adult children. The more we try to understand why and how we start to absorb too much guilt in our lives, the easier it will be to accept, support and let go of these difficult feelings. It is true that we take better care of ourselves and our loved ones when there is less resentment and guilt present.

Some feelings of guilt stem from a caregiver feeling angry at their partner for becoming ill, or for the extra responsibilities and supervision required. Although we know rationally that the person had no control over becoming ill, frustration and anger may exist. A husband may lose his temper when his wife with dementia becomes lost in a store or forgets to turn off the stove. A wife may get angry when her husband with dementia puts his pants on backwards, asks repeated questions or leaves the faucet running. There seems to be less time for hobbies and social events, and stress increases for caregivers. Vacation plans may get postponed or cancelled; financial needs may be stressful. There can be many disappointments to be faced. If we try to ignore or suppress anger, sometimes it comes out when we least expect it, then we feel guilty.

Dislike for a spouse or partner whose personality has changed in response to illness is another feeling which creates guilt. Some formerly outgoing and social personalities become more reserved and withdrawn, while the person who used to be quiet and introverted may suddenly become very talkative, express emotions and act more social. A caregiver may miss his or her partner as they used to be, and feel guilty for disliking or feeling uncomfortable around them now. Families can help each other acknowledge the real changes that are happening and talk with each other privately for mutual support. Support groups are also an invaluable help to caregivers who want to talk confidentially. It is normal to have difficulty accepting the changes in the personality and abilities of our loved ones.

Spouses, families, or partners giving care may feel that they should not go out socially or spend time for their own enjoyment while their loved ones have less freedom because of Alzheimer's disease. They often bear an unrelenting sense that they should be doing more for the other person, despite their inability to think of what else could possibly be helpful. Perhaps there is guilt related to past conflicts in the relationship, and the caregiver feels tied to taking care of their partner in repayment for these past hurts and pains. When someone sees their task of care as a punishment, it is usually detrimental for both persons. The person giving care feels anger, sadness or guilt, and the receiving person senses the resentments, hostility and stress. Even with a brain disease, most people know when their caregiver feels agitated, nervous or obligated because of guilt.

When we don't react perfectly or make mistakes, we often feel guilty. We feel like we have failed. However, remember that nobody reacts perfectly all the time, and everyone feels the stress and emotional tensions involved with Alzheimer's disease. You have not failed when anger or guilt overwhelms you. Your relationship is changing and these feelings may be a response to changing roles. Recognize this as a good time to recognize the red flags that signal your need for rest, more enjoyment in your life, and extra support from outside sources. The more a caregiver receives needed rest, nutrition, exercise, social support and help with their loved one, the better quality care they will offer. Read educational materials on Alzheimer's disease and important care issues, or visit a free Alzheimer's Association support group in your area. But most of all, be easy on yourself. Call the Alzheimer's Association at 206-363-5500 or 1-800-848-7097 for more information.


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