Good Grief:  Grief and Loss with Alzheimer’s Disease

April 17, 2006

Speaker: Trudy Holman, Director of Hamilton’s Academy of Grief and Loss, (515) 697-3666

The Academy of Grief and Loss is open to anyone regardless of whether they use or intend to use Hamilton’s as their provider of aftercare services.  Most of the services of the Academy are without cost to those who need or want to use the services.  Services include a grief lending library, which is open for lending of materials on grief and loss, and is located at Hamilton’s Westown Parkway facility.  Other services include a professional referral network of local professionals offering their assistance to families following a death, and a community resource book that includes a detailed list of current grief and support resources available in DM. In addition, Hamilton’s Academy of Grief and Loss offers presentations, seminars and short courses regarding death and grief issues, including presentations to children.  There will be a symposium on grief in June and another in November.  The one in November will deal specifically with grief and loss during the holiday time.  Participants of the South Des Moines Alzheimer’s Support Group are invited to participate in either or both of these symposia. You may call Trudy at the number listed above for more information.

Losses

Grief is no stranger to families who live with Alzheimer’s Disease.  It is the price we pay for loving.  When you recognize grief in your life, you need also to acknowledge and look at the secondary losses you experience. You need also to record what those secondary losses are so they don’t creep up on you surprise you with additional things you must tend to when your loved one’s health further deteriorates or your loved one dies.  These secondary losses are attached to the roles your loved one plays or has played in your life.  Perhaps one secondary loss might be the person who carries the trash out to the curb on Wednesday night, or your fishing buddy, or your “go-to” resource on gardening or birding, or the person who pays the bills and balances the checkbook, or a myriad of other roles.  Stop and think what your secondary losses are, and record them now.

Burnout

Alan Wolfert, author of a number of good resources on grief, has a book out entitled “Caring for Oneself As a Caregiver”,  an excellent resource for those with a family member who has Alzheimer’s Disease.  In this book, the concept of caregiver burnout is discussed.  Burnout is the end stage of stress.  Contained within his book is a Grief Bereavement Caregiver Burnout Survey (BBCBS). Take a moment to step back from your situation and complete the survey.  As you review your life over the past 12 months, answer the survey questions.

Grief Bereavement Caregiver Burnout Survey (BBCBS)

Alan D. Wolfelt, Ph.D.

1.      Do you generally feel fatigue and lacking in energy?

2.      Are you getting irritable, impatient, and angry with people around you (home and or work)?

3.      Do you feel cynical and detached from the people with whom you work?

4.      Do you suffer from more than your share of physical complaints like headaches, stomachaches, backaches, and long-lasting colds?

5.      Do you generally feel depressed or notice sudden fluctuations in your moods?

6.      Do you feel busy, yet have a sense that you don’t accomplish much at all?

7.      Do you have difficulty concentrating or remembering?

8.      Do you think you have to be the one to help all those people experiencing grief?

9.      Do you feel less of a sense of satisfaction about your helping efforts?

10. Do you feel that you just don’t have anything more to give people?

To monitor your potential for burnout, ask yourself to how many of these questions you answered “yes.” In general, if you answered “yes” to two to four of these questions, you may be in the early phases of burnout. If you answered “yes” to five to seven of these questions, you are quickly moving in the direction of total burnout. If you answered “yes” to eight to ten of these questions, you are burned out.

Our attitudes about stress and burnout in general sometimes make it difficult to make changes. However, one important point to remember is that with support and encouragement from others, most of us can learn to make positive changes in our attitudes and behaviors.

• Recognize you are working in an area of care where there is a high risk of burnout.
• Create periods of rest and renewal.
• Be compassionate with yourself about not being perfect.
• Practice setting limits and alleviating stresses you can do something about
• Learn effective time-management skills
• Work to cultivate a personal support system.
• Express the personal you in both your work and play
• Work to understand your motivation to help others with grief.
• Develop healthy eating, sleeping and exercise habits
• Strive to identify the unique ways in which your body informs you that you are stressed.

Grief

Earl Grollman and Kenneth Kosik, M.D. have written a book entitled “When Someone You Love Has Alzheimer’s”.  This book describes the grief process of the caregiver of the person with Alzheimer’s Disease. There are several emotional reactions to grief: 

• Shock:  Numb may initially insulate you from the enormity of the pain.  It is a protective mechanism, allowing the grimness of the reality to seep in gradually. Allow yourself time and space for adjustment. One day at a time, one step at a time.
• Denial: Denial is a coping too, a part of grief. It can give us time and space to gather the strength and courage we need to face the pain of losing our loved one to a terrible disease.  While you can, share the pleasures, no matter how small they may be, that still bring you both delight. Explore local resources for both of you. Begin to build a community of support.
• Panic: Will she forget who I am? Will he wander away and get lost? How can I take care of him? Who’s going to pay for all this?  Panic makes your chest grow tight, knots you stomach, can cause you to be disoriented. You may feel like you want to flee.  Accept that you do not have the power to control the disease or make it go away, but know also that you can still care for your loved one, show kindness and affection and celebrate small achievements.
• Guilt:  The sense of “it’s too late”.  You may now feel trapped or embarrassed at your loved one’s conditions and actions. Guilt and anger may plague you throughout the duration of your loved one’s disease. The reality of life is that all of us let loving feelings go unexpressed. All of us fail people who care about us. Accept your fallibility. You are only human. Your resources are limited. Treat yourself with compassion. When you berate yourself, you sap yourself of needed energy. Forgive and move on to tomorrow.
• Anger: Your sense of helplessness and mourning may turn to overwhelming rate. Fury toward God, your loved one, the medical team, your own inability to help your loved one, your family and friends, yourself for succumbing to rage. Anger is a feeling, a part of grief. It doesn’t have to be right, it doesn’t have to make sense. You need to acknowledge, express, and resolve these painful feelings. Understand the REAL reasons for your hostility. Anger may be a more comfortable and empowering response to a dreadful situation than vulnerability and fear. Distinguish between current anger and old unresolved anger. Know that anger and revenge are not the same thing. Find constructive ways to release your rage so that your fury does not become a curse, so that your anger does not cost you too dearly in terms of inner stress, fractured relationships, and your own health and strength. Direct your anger at the disease, not your loved one. Take some time off and renew your patience periodically. Seek help if you need it.
• Depression:  You may feel worthless, incapable, inadequate. Simple tasks are intimidating. Depression ahs been defined as “anger turned inward.” See a caring and knowledgeable advisor to help you negotiate your way through these trying and difficult times. To acknowledge our problems and seek help is often the most courageous and responsible act any of us can take.
• Bodily Distress: You don’t fee l good most of the time. The physical problems are real. You are not a hypochondriac. Our body is responding t the strain of bereavement. Stress weakens your resistance to disease, aggravating former medical conditions, creating new problems. An aching heart takes a physical toll on the rest of your body.  Especially at this time, you need to take care of yourself. Consult an understanding physician. Ad you work through your grief, your symptoms may begin to diminish. 

Remember there is no right or wrong way to grieve, no prescribed time it will take you to adjust. Each of us experiences grief in our own way. Focus on what you CAN do.  Step by step, day by day, find your own way through.

What Can I Do About My Grief?

1. Keep a journal of your feelings/grief work
2. Write a letter to the person whose loss you grieve
3. Don’t avoid “family days.” 
4. Tell others clearly what you need and want,.
5. Eat right and exercise
6. Set small goals
7. Reach out to others
8. Be open and talk about your feelings
9. Seek informal counseling
10. Seek formal counseling with professionally trained counselor or therapist
11. CRY!
12. Use outside stimuli such as a movie, play, music or book
13. PRAY
14. Concentrate on breathing deep breaths
15. Rely on friendships and outside help.
16. Create a safe place and go there in person or in your mind
17. Write lists of good things about the person you are losing
18. Write down the loving things they said to you that you never want to forget
19. Take care of something other than you.
20. Do activities that you enjoy
21. Groan in the shower, imagine the shower washing away the pain and fatigue.
22. If you feel stuck, DO something new
23. Pace yourself
24. Enjoy good memories
25. Talk to the person
26. Consider memorializing your loved one, perhaps in a memory book
27. Consider a support group
28. Reminisce
29. Visit nature.

Avoiding Compassion Fatigue and Burn-Out

1. Pay attention to your health
2. Identify the ways your body informs you of stress
3. Practice setting limits and alleviating stresses within your control
4. Learn effective time-management skills
5. Cultivate a personal support system
6. Express the personal YOU in work and in play
7. Work to understand why you do what you do.
8. Create periods of rest and renewal DAILY
9. Be compassionate with yourself about not being perfect
10. Laugh as often as possible.