"Grief, Mourning, and Guilt"

(Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.)

It is common for both the impaired person and the caregiver to experience feelings of loss. Persons with Alzheimer's disease experience feelings of loss when realizing the gradual changes in their own abilities. As a caregiver, you will experience both your own loss and loss for your family member. Your feelings of loss will likely involve the natural phases of grieving: denial, anger, guilt, physical symptoms, and eventually acceptance.

As the disease progresses, and the person's abilities vary, you will notice fluctuations in your feelings. As the person loses more functioning, the realization of seeing the person depart - not through death, but through the gradual loss of memory, thinking abilities, and changes in personality, may become painful. Moving through a grieving process may help you cope with your losses. No two people grieve in exactly the same way. Therefore, an understanding of these processes may be helpful to you. Some common experiences involve:

Denial

Thinking the person is not ill.

Physical Symptoms

Feeling helpless, weeping or sighing.
Changes in appetite or sleep patterns.
Feeling exhausted and empty.

Anger

Feeling frustrated with your family member or the tasks of caregiving.

Guilt

Feeling despair or depression - withdrawing from social activities.
Withdrawing from the person - investing less intense emotional involvement.

Acceptance

Acknowledging that caring for a terminally ill family member has brought meaning to your life.
Observing that the grieving process may impact all aspects of your life.
Appreciating the personal growth involved in surviving life's losses.

Guilt

In the process of grieving and mourning, many caregivers find they are overwhelmed by one particular feeling: guilt. Common reasons for feeling guilty are:

Feeling that something that happened in the past may have caused the person's condition.
Feeling you should have done something differently after the person was diagnosed with the condition.
Feeling badly that you are still able to enjoy life while the person is unable to do so.
Feeling as if you have failed, especially if the person with Alzheimer's must be placed in a nursing home.
Having negative thoughts about the impaired person; wishing that he or she would disappear or die.
Feeling angry with other family members because they live far away, criticize, or prefer to remain uninvolved in caregiving.
Feeling you had a poor relationship with the person before the diagnosis was made.

In many cases, feelings of guilt are linked with unrealistic expectations or thoughts like these:

"I must be perfect."
"I should have done..."
"I must always feel love for the person."
"I must do everything for the person."
"I must visit the person everyday."

To help you work through these feelings, you may want to use the following suggestions:

Action Steps

Confront your feelings

Accept guilt as a normal part of loss and grief.
Ask yourself these questions:
- "Are my expectations realistic?"
- "Did I make the best decision possible with the information I had at the time?"
- "Does it help the situation to feel guilty or does it waste my energy?"
Find ways to forgive yourself.

Share your feelings with a sympathetic friend.

Accept things that are beyond your control, and make responsible decisions for things you can control. Many people turn to their spiritual beliefs for consolation.
Complete unfinished business with others. For example, you may want to write a letter to someone asking for his or her forgiveness. (You don't need to mail the letter.) In addition, reflect on your positive and negative memories of the person with Alzheimer's.
Learn to feel comfortable with deserving good things happening in your life. Begin to change unrealistic expectations or demands. As time permits, get involved in new or meaningful activities you enjoyed in the years before caregiving began.

For many caregivers, switching from concentrating all their efforts on caring for another person, to caring for themselves is difficult. However, caring for yourself can be beneficial to the impaired person as you can gain renewed energy and a feeling of support by taking care of your needs.

Accepting your feelings.

Remember that your feelings are normal for anyone in your situation. By learning to recognize and accept your feelings, you can begin the process of healing.

Turn to others.

Share your grief with another person. Look to a sincere, non-judgmental friend who will let you express yourself freely. If you prefer to talk to a therapist who has professional training in grief and mourning, you may want to interview several therapists and choose someone with whom you feel a special rapport.
Talk to other caregivers and family members. This will give you an opportunity to express your feelings, share your experiences, receive much-needed emotional support, and develop new caregiving skills.
Joining a support group offered by the local Chapter of the Alzheimer's Association, for example, may also help you combat some of the feelings of isolation and loneliness which may accompany caregiving.

Take care of yourself.

Remember that caring for yourself is as important as caring for the person with Alzheimer's disease. Here are some ways to avoid becoming a "second victim" of Alzheimer's disease:

Return to some aspects of your daily routine. You will feel less isolated and out of step with other people.
Bring balance into your life by doing things that bring you joy and comfort. You may want to think of your life as moving along two parallel tracks: one is devoted to caregiving and the other is devoted to caring for yourself. Be sure to schedule time to move from caregiving to the self-care track.
Give yourself time to rest so that you will be less vulnerable to physical illnesses that may result from stress. Consider listening to relaxation tapes, soothing music, or trying deep breathing exercises to help relieve stress.
Allow time for physical exercise, play, or spending time in new surroundings. For example, you may want to get in the habit of taking a vigorous half-hour walk.
Let yourself laugh. Try to find humor even in difficult situations. By recognizing the humor in everyday life and giving yourself the release that comes with laughter, you can reawaken the joy of living beyond the daily chores of caregiving.
Take time to dream. Dreaming is a healthy sign of belief in your future. Allowing yourself to visualize what is to come will help you to remember that your life is more than this caregiving experience. In the process of grieving, old dreams will be released when new ones are firmly in place.

Grieving and mourning are natural processes that caregivers experience. The length of time and when it occurs will vary with the severity and length of the disease. Understanding these processes and how to cope with them should help you provide quality care.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 200 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Carol J. Farran, DNSc, RN, Associate Professor, Rush-Presbyterian-St. Luke's Medical Center, Chicago, Illinois; and Geraldine Monbrod-Framburg, Caregiver, Manager, Inquiries Processing, Alzheimer's Association, Chicago, Illinois.

Additional information was provided by the following Chapters of the Alzheimer's Association: St. Louis, Mid-Missouri, and Lincoln.

Other Resources include:

C.J. Farran, DNSc and G. Monbrod-Framburg. "Loss, Mourning, and Suffering: The 'On-going Funeral' of Dementia," Self-Help -- Concepts and Applications. A. Katz, H. Hedrick, D. Isenberg, L. Thompson, T. Goodrich, A. Kutscher, editors. Philadelphia: The Charles Press, 1992.
D. Jeanne Roberts, MA. Taking Care of Caregivers. Palo Alto: Bull Publishing Co., 1991 Article courtesy Alzheimer's Association, Lincoln/Greater Nebraska Chapter,

Alzheimer's Disease and Related Memory Disorders(Link: http://nncf.unl.edu/alz/manual/WebSection10/grief1 0.html ) (http://nncf.unl.edu)

Article courtesy Alzheimer's Association, Lincoln/Greater Nebraska Chapter, http://nncf.unl.edu