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Healing Your Grieving Heart When Someone You Care About Has Alzheimer's
100 Practical Ideas for Families, Friends and Caregivers
By Alan D. Wolfelt, Kirby J. Duvall
Center for Loss and Life TransitionCopyright © 2011 Alan D. Wolfelt, Ph.D. and Kirby J. Duvall, M.D.
All rights reserved.
GENTLY EMBRACE THE REALITY THAT YOUR LOVED ONE HAS DEMENTIA OR ALZHEIMER'S
For anyone experiencing the onset of dementia — the person affected as well as those who care about him — there is often an instinctual need to push away your new reality. You may be reluctant to consider Alzheimer's or even use the "A-word."
Usually the onset of this disease is very subtle. Often only in retrospect do family members put the pieces together and recognize the disease's early symptoms.
Your loved one may have experienced a string of tests trying to find something else that would account for her behavior changes. Since Alzheimer's disease is a clinical diagnosis with no one definitive test, it may have been difficult to reach this conclusion, with several doctors involved.
You and your loved one may be understandably fearful to look into your shared future. You may not be able to accept this new reality all at once. But slowly, a little at a time, and as difficult as it is, you must mourn the loss of the future you expected and instead gently embrace your new reality. The first step in responding to this disease is acknowledging its day-to-day reality.
Review the steps that have been taken to diagnose your loved one with Alzheimer's disease or dementia. Are you satisfied that this is the correct diagnosis? Reviewing the diagnosis one more time with the primary physician may help you begin to accept it. Getting another specialist's medical opinion may be needed for this acceptance to begin.
RECOGNIZE THE DIAGNOSIS AS A LOSS
Someone you love has been diagnosed with dementia or Alzheimer's disease. This may feel overwhelming, both to you and to the person you love. You are both likely fearful of what the future holds.
Your loved one has probably already had some memory problems, grown more easily confused, and even gotten lost in familiar places. You may have noticed personality changes, frustration in doing simple tasks, and obsessive worry or repetitive questions or actions.
These losses are a result of a brain disease that first strikes the memory center then progresses to other parts of the brain, resulting in increasingly diminished cognitive ability.
As the person you love experiences each new loss, you also have a corresponding loss. You lose a part of the person you loved and a part of the relationship you had. You may progressively lose your personal closeness, the understanding you had between you, and even the activities and human interactions you enjoyed together.
Even though your loved one is still alive, you are already beginning to feel the loss.
Make a list of the losses, big and small, that you have already experienced since the person you love began to be affected by dementia or Alzheimer's disease.
UNDERSTAND GRIEF AS A PART OF LOSS
Grief is a word we usually think of in association with the death of someone we love. But actually, grief follows every significant loss in our lives. The losses you are experiencing as a result of your loved one's illness certainly cause you to grieve, too.
We grieve when we lose something we value, someone we care about. With grief comes a wide range of emotions. Shock, numbness, confusion, anxiety, guilt and regret are common. Anger, blame, resentment, sadness and sometimes relief are also often part of grief. These feelings may arise one at a time or, more typically, may blend together in a kind of ever-changing grief stew.
In the days after your loved one's diagnosis of Alzheimer's, the pain you feel may be ever-present. It's OK to escape for a few hours each day and take a break from your feelings. You could seek refuge by going for a walk, reading a book, watching a movie, spending time with family, exercising, or having coffee with a supportive friend.
Today, do something that brings you comfort. Maybe it's working in the garden, baking a pie, taking a long bath, or sitting by the fire. What comforts you? Indulge yourself with a comfort break today.
KNOW THE COMMON SYMPTOMS OF GRIEF
Symptoms of grief can vary widely among those who love someone with Alzheimer's, but common ones include:
- denial that the person you love is ill
- periods of helplessness, despair, and depression
- changes in appetite or sleeping patterns
- feelings of anger or frustration toward the person with Alzheimer's
- withdrawal from social activities, friends, family, and even the person with Alzheimer's
- feelings of anxiety or confusion
Especially if you are the primary caregiver, you may be too busy and feel too overwhelmed to recognize that you are grieving the slow loss of your loved one. You may just pass it off as just being down or stressed from the situation. Recognize that you are in grief and need to allow yourself to actively mourn.
Allow yourself to feel and express the pain of your loss, in doses.
Which grief symptoms have you experienced so far? Take time today to relieve these symptoms by doing something you enjoy.
RECOGNIZE FEELINGS OF SHOCK, NUMBNESS, AND DISBELIEF
You may find yourself not feeling much of anything. If so, you may be in shock. Feelings of shock, numbness, and disbelief are common, especially early after the diagnosis of Alzheimer's or dementia.
These feelings are nature's way of protecting you from the full reality of your loss. Like anesthesia, they help you survive the pain of early grief. If this diagnosis shocked you to your core, it may be a blessing to feel numb.
You may think, "I'll wake up and this will not have happened." Early grief is like a dream. Your emotions need time to catch up with what your mind has been told. Your body slows in response to this emotional shock, and you may not feel like doing anything.
Feelings of passivity often go hand-in-hand with numbness. You may feel childlike or even neglect basic needs, like food, water, and sleep. Simple decisions may be hard when you are in shock. If your friends or family urge you to make decisions when you are experiencing shock, tell them you need time to absorb your new reality before you can think further ahead.
If you are feeling numb, cancel any commitments that require concentration and decision-making. Let yourself regroup. Find a safe haven where you can retreat for a few days or for a few hours each day.
BE IN TOUCH WITH YOUR BODY
When we are grieving, we often feel bad physically. We may feel fatigue, headaches, stress, high blood pressure, and even body aches and pains. These symptoms are messages telling us that we need to slow down and turn inward to our grief.
If you are in shock, your body will naturally slow down and your senses will be numbed. Your body is wise in this slowing. Well -intentioned people may divert you from honoring this slow-down. Society expects you to take just a day or two to regroup and then carry on dealing with the disease and your life. Ignore these expectations and go at your own pace.
Stay in the present and focus on what you need to get through today rather than worrying about tomorrow. Just "being" may be all you are up to right now.
Take care of your body. Say to yourself, "Right now I just need to breathe in and breathe out." Get plenty of rest, eat healthy foods, drink plenty of fluids, and walk or exercise if you are up to it. Make sure you are getting regular check-ups and medical care yourself.
If you are the sole or main caregiver to someone who needs around-the-clock care or supervision, ask for occasional help. You cannot take care of your own health if you are constantly caring for someone else.
Right now, sit in a comfortable position. Take ten deep, slow breaths — filling and emptying your lungs completely. When you finish, consider the essentials of what you need to do to get through this day. Just this day.
BE GENTLE WITH YOURSELF AS YOU EXPERIENCE THE REPEATED LOSSES OF ALZHEIMER'S
"I'm in awe of people who deal with Alzheimer's, because they have to deal with death 10 times over, year after year."
– Maria Wallace
Just as when you lose someone to death or divorce, you also feel loss when someone you love has Alzheimer's. But unlike a death, the advancing brain disease causes repeated and progressive losses.
You lose the person you love a bit at a time. Like slowly removing a bandaid, it can seem more painful than one quick loss.
With Alzheimer's, early losses often include the loss of the status quo of your relationship. There may be a painful redefinition of the relationships between parent and children, husband and wife. Have you already lost a sense of what is normal?
As the disease progresses, caretaking becomes a full-time job, and if you are the primary caregiver, you may lose other parts of your life, including much of your free time and social life. The behavior changes of Alzheimer's may make caregiving difficult, and you may ultimately feel the loss of the close, loving relationship you once had.
Be compassionate with yourself as you struggle with a new aspect of loss.
RECOGNIZE THE UNCERTAINTY IN YOUR LOSSES
"I often hear people say that the person suffering from Alzheimer's is not the person they knew. I wonder to myself, 'Who is he then?'"
– Bob DeMarco
Everyone who loves someone with a debilitating and fatal disease experiences loss. We call the type of grief that comes with a terminal cancer diagnosis, for example, anticipatory grief, because it encompasses all the losses experienced on the journey as well as the anticipated death. When someone you love has dementia, you too experience a form of anticipatory grief, but yours may extend over a longer period of time (for some, as long as 20 years) and be socially unrecognized and surrounded by uncertainty.
Psychologists call losses with some degree of uncertainty "ambiguous losses." As a caregiver, companion, or family member, you are faced with the loss of someone who is physically present but psychologically absent. What was once normal is now changed in your relationship.
You may feel, "This is not my husband even though he looks like my husband" or, "My mother would never act like this." Even with the person present, your old relationship is engulfed in change. The grief you feel is naturally complicated by this ambiguity.
To experience emotional and spiritual distress when confronted with the chronic illness of someone you love is very appropriate and understandable.
Have you had any times of confusion or ambiguous feelings since your loved one was diagnosed with Alzheimer's? List them. Do you feel grief over these ambiguous and uncertain losses? Write your feelings down on paper.
RESPOND TO FEELINGS OF HELPLESSNESS
It is not uncommon for family members to feel helpless, discouraged, or demoralized in the face of dementia. These feelings can be made worse if doctors or other professionals are not understanding and empathetic.
But you have many resources within you. Although you cannot control or cure the disease, you can learn to shape your experience of it:
- Take one day at a time.
- Things seem worse when you focus on everything at once. Instead, focus on small things that you can change to improve life today.
- Be informed about the disease. Read and learn from others about managing challenges.
- Talk with families who face similar problems. Maybe join a support group.
- Get involved in exchanging information, reaching out to others, or even supporting research.
- Discuss your feelings with a doctor, social worker, psychologist, or clergyperson.
- Maintain some personal hobbies and interests.
- Eat healthy foods.
- Get daily exercise, if only a 20-30-minute walk.
Talk with someone close to you if you are feeling helpless. Focus on a single, simple idea to make your life easier or better. Having one success can lead to others.
ASK FOR HELP
When you experience a major loss, you need love and support from others. As you experience the cumulative losses that result from dementia or Alzheimer's disease, you especially need and deserve ongoing love and support. You may also need help just getting through each day if you are a caregiver.
Don't feel ashamed of your heightened dependence on others right now. Don't expect yourself to do everything for your loved one or to handle your sense of grief and loss alone. You may need to talk this through with others. You may also need help with chores at home, medical appointments, or finances. Take comfort in the thought that others care about you and are available to help.
Don't hesitate. Ask your friends and family for their support and patience. Those who love and care for you truly want to help. You just need to ask. Tell them specifically which tasks or chores they can do to help you right now. Also share with them how they can best help you process your emotions and acknowledge your loss.
Excerpted from Healing Your Grieving Heart When Someone You Care About Has Alzheimer's by Alan D. Wolfelt, Kirby J. Duvall. Copyright © 2011 Alan D. Wolfelt, Ph.D. and Kirby J. Duvall, M.D.. Excerpted by permission of Center for Loss and Life Transition.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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