"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:
Thinking the person is not ill.
- Feeling helpless, weeping or sighing.
- Changes in appetite or sleep patterns.
- Feeling exhausted and empty.
Feeling frustrated with your family member or the tasks of caregiving.
- Feeling despair or depression - withdrawing from social
- Withdrawing from the person - investing less intense emotional
- 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
- Appreciating the personal growth involved in surviving life's
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
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
- 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
- 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
- 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
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
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,
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 (http://nncf.unl.edu)
Alzheimer's Association, Lincoln/Greater Nebraska Chapter, http://nncf.unl.edu
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