04 March 2009

Dealing With Alzheimer’s Losses: Four Tasks

Dealing With Alzheimer’s Losses: Four Tasks

© Fr. Francis C. Zanger, D.Min., CT

Watching a loved one, a husband or wife, mother or father, descend into Alzheimer’s can be a painful, life-shattering experience. Hopes and hopes dashed, prayers seemingly unanswered, the ongoing pain of watching a once active, vibrant person, with a once sharp mind, slowly, insidiously, begin to decline… Alzheimer’s is one of the hardest diseases to deal with for many family members.
In many ways, the emotional response of family members to Alzheimer’s is similar to mourning a death, yet made more complicated, more painful, by the patient’s continued presence… and by the knowledge that the patient will probably die of the disease, forcing grief to begin all over again. Dr. J. William Worden, a psychologist at the Harvard Medical School, is one of America’s top experts on grief, and I am adapting some of my ideas in this brief article from his book, Grief Counseling and Grief Therapy[1].
Dr. Worden writes of Four Tasks of mourning, which are,
Accept the reality of the loss
Experience the pain of grief
Adjust to the environment in which the deceased is missing, and
To withdraw emotional energy and reinvest it in another relationship.
While designed to describe the tasks that are necessary for a mourner to work through the death of a loved one, they may also describe ways in which the loved ones and caregivers of Alzheimer’s patients may take care of themselves through what may be a slow, gradual loss of their loved one, but a loss none the less.
The first task, to accept the reality of the loss, may be difficult because of the disease’s slow, insidious onset. When the symptoms of Alzheimer’s begin, they may appear minor and unimportant. It’s easy to accept that, “Grandma’s just a little scatterbrained sometimes—she can never remember where she left her car keys.” We naturally look for the best possible face to put on it, so “He’s just a little absent minded sometimes,” is much easier, much safer to think about, than having to face an Alzheimer’s diagnosis. And once we establish that “absent-minded” is okay, it’s easy to go on to, “He just got more set in his ways when he got older,” when we’re explaining why he doesn’t want to deal with unfamiliar surroundings or people, and when we look for excuses (her eyesight, the changed forms) when trying to explain why Mom can no longer balance the checkbook.
Accepting the loss, though, is important for both the patient and the caregiver. Early diagnosis gives the patient access to medications that may act to delay the onset of worse symptoms, enabling the patient to live a normal life longer. For the caregiver, it is also important—by accepting the reality of the diagnosis, by escaping the normal human desire to deny the painful truth, the family member will be better able to care for the patient, and will also escaped the psychic stress of having to come up with excuses for each new symptom as it emerges.
That said, accepting the diagnosis can be painful. The second task, experiencing the pain and grief, is important too. It is okay—it is normal—to feel real hurt and grief in the face of Alzheimer’s. I would add another normal, appropriate emotion—it’s okay to be angry as well. In the face of their loved one’s deterioration, family members and caregivers may get angry at themselves, angry at the patient, angry at God. That anger is normal. Alzheimer’s is a terrible disease, slowly robbing the patient of ability after ability, strength after strength, until there may be nothing left but an empty shell, and worse, an empty shell that still looks like the person you loved.
You may also feel guilty—guilty for not having noticed the symptoms quicker, guilty for finding enjoyment in activities the patient can no longer do, guilty because there have been times, in your frustration and pain, you may even have wished the patient would just die and get it over with. It’s important to remember—Alzheimer’s is not your fault! There is nothing you could do to cause it, and virtually nothing you can do to slow its progress by much. Your having dinner with friends, your seeing a movie, isn’t going to make the patient any worse, but the time away may recharge your batteries for dealing with the patient’s symptoms.
Don’t try to bottle up the feelings or deny them… they are real, and appropriate. Be willing to accept help, not just with caring for the patient, although for patients living at home Hospice or home health care nurses can be tremendously helpful, particularly in the later stages of the disease, but accept help for yourself as well. Take advantage of Respite Care, places that will watch over your loved one in order to give you a break to go shopping or to a movie. Take advantage of support groups. With Alzheimer’s, family members and caregivers can feel terribly alone. There can be tremendous benefit just in being with people who really understand what you’re going through because they’re going through it themselves.
Dr. Worden’s third task for mourning a death is to adjust to an environment in which the deceased is missing. With Alzheimer’s, although the patient isn’t dead, he or she may slowly, inexorably seem to become more and more “missing”, week by week and month by month. The adjustments are thus ongoing. In a family where the patient always took care of the finances, the caregiver must now take over the checkbook and figure out how to pay the bills. In a family that once had an active social life, visiting with other couples, going out to eat or to movies, perhaps traveling together—all that must be changed, must be readjusted because of the Alzheimer’s... and readjusted again and again as the disease progresses and the patient becomes less capable.
The fourth task might on the face of it seem not to apply, but it does. Dr. Worden says it’s to withdraw emotional energy and reinvest it in another relationship. What’s important to understand is that this task does not mean to “replace” the husband or wife with a new mate! Rather in dealing with a loved one with Alzheimer’s, it’s important to recognize that all the emotional energy you’ve put into the way the relationship was pre-disease must be shifted to the new reality—to the way the relationship now is.
If some of the happiest times in your relationship came from playing as partners in a competitive bridge club, or having the patient drive you on long country drives, then it is important to focus more on the activities you can still share, rather than emphasizing the things that you have lost. Try to reinvest your energy in the things which continue to be positive and life-giving. This may not be easy, and you may and will still miss some of the things which have been lost, but that’s okay.
Loving someone who has Alzheimer’s can be challenging just by the nature of the disease. It is helpful to remember that it’s important to take care of yourself, in order to be best able to help the one you love. Utilizing these Four Tasks is one way you can do that, in the face of the tremendous challenges with which you have been confronted by Alzheimer’s disease.

Fr. Francis C. Zanger, D.Min is the Bereavement Coordinator at Heartland Hospice in Charleston, SC. An Episcopal priest and retired Navy chaplain, he is an ADEC Certified Thanatologist (Death, Dying and Bereavement) and a Diplomate of the American Academy of Experts in Traumatic Stress.
[1] Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner, 3d Edition, Worden, J. W., Springer Publishing Co., New York, NY, 2002

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