A Proactive Approach to Handling Anticipatory Grief and Alzheimer’s Caregiving

Joan and Charlie had been married for 55 years, and she just assumed they would spend the rest of their years together. Then one day Charlie was installing a door, a simple project he had done many, many times, and yet this time he put the door on backwards. For the next few years Joan saw Charlie gradually slip away---forgetting how to get to a location he had been to hundreds of times before, struggling to remember names he had known for years, and slowly continuing until he no longer knew who Joan and those dearest to him were anymore.

As this similar, heartbreaking scenario plays out in the lives of those who have Alzheimer’s Disease (Charlie) and those who love them (Joan), anticipatory grief will probably occur, on the part of Charlie, Joan, and other’s involved in their lives.

Anticipatory grief refers to a grief reaction that occurs in anticipation of an impending loss. Anticipatory grief provides family members with time to gradually absorb the reality of the loss. Individuals are able to complete unfinished business with the dying person [e.g., saying “good-bye,” “I love you,” or “I forgive you”] (“Anticipatory Grief”).

Since those who love someone with Alzheimer’s have years from the time their loved one moves from Level 2 [Forgetfulness] to Level 7 [Late Dementia] (Ferris, Leon, Crook: 1982), one would be tempted to assume that Joan would have done the majority of her grief work before Charlie dies, and that she would be one of the most unlikely persons to have a complicated grief reaction after Charlie’s death. Yet, research has shown that is often not the case.

Therese Rando, a highly respected grief researcher, in her book Treatment of Complicated Mourning, lists the types of death which are most likely to contribute to complicated mourning. Number two on her list is “death associated with an overly lengthy illness” (Rando, 1993). She outlines several problems facing someone who has been in a long-term caregiver role, some which are especially applicable to Alzheimer patient caregivers, such as:

1. managing the effects of lengthened periods of anticipatory grief, uncertainty, anxiety, and the consequences of chronic and unremitting stress;
   
   
2. dealing with the demands of responding to dying as a gradual process in which family members, on a long-term basis, must contend with and balance opposing tasks, clashing responsibilities, discordant roles, and a love one who while still living is also slowly dying;
   
3. handling increased financial, social, physical, time, and emotional demands;
   
   
4. surviving long-term family disruption and disorganization;
   
   
5. witnessing the overall progressive decline of the loved one and coping with the emotional responses of family members to that decline and their inability to stem it;
   
6. coping with consequences commonly observed in families of the dying: psychological conflicts, emotional exhaustion, physical debilitation, social isolation, and family discord, as well as with the typical emotional reactions of guilt, anxiety, sorrow, depression, anger, and hostility (Rando, 1993).

Going back to the scenario of Joan and Charlie, Joan experienced most, if not all, of the conditions listed above. Their children, all grown and moved away, wanted to help Joan as much as possible, but due to the distance and their own family responsibilities, they were unable to help her with the daily demands of caregiving. Joan devoted all of her strength, energy, and attention to caring for Charlie, and felt she was at her breaking points many times. She had a couple of friends who offered to give her respite, but their limited availability caused Joan to use them only she determined she had to get out of the house to do something only she could.

During Charlie’s prolonged illness, Joan lost contact with the majority of her support system and felt as though she was all alone. Charlie was there in a physical sense, but due to the disease process, he could no longer support her emotionally, as she had been accustomed to him doing. She didn't’t take care of many of her own medical problems, because she could not leave Charlie alone to go to her doctor’s appointments, and not too long into the illness she could no longer take him with her, due to safety concerns.

As the years passed, and the stressors became nearly unbearable, Joan caught herself having moments of thinking, “I am so tired, and I wish this would just be over.” As soon as the thought would come, she would feel guilty and mentally beat herself up for even allowing such a thought to cross her mind. Also, there were moments when Charlie would seem to “snap out” of the fog, and he would be his old self for a brief time. Although Joan appreciated those moments dearly, the emotional roller-coaster they created was hard for her to bear. All of these factors combined to wear Joan out, emotionally, mentally, physically, and psychologically. She even felt spiritually depleted, due to her inability to participate in her faith community, which has been such a source of comfort to her in the past. Is there anything Joan can do to help herself overcome all of these obstacles?

WHAT CAN I DO?

If this article ended here, the reader would probably be asking, “So, isn’t there something one can do to overcome the grieving challenges created by loving and caring for someone through an overly-lengthy illness, such as Alzheimer’s?”

Thankfully, there are some things that one can do, and the findings of one particular study, back up that statement. The findings of this University of Pittsburgh-study, published in the August 2006 issue of the American Journal of Geriatric Psychiatry, revealed unexpected but extremely important results.

The initial purpose of the study was to “establish methods for preventing depression and increasing coping skills during the caregiving process” by determining which caregivers “were at risk for complicated grief and depression after their care-recipients died.” The findings showed that the intervention “aimed at preventing depression and easing the burden of caring for a relative with dementia” also “helps to prevent complicated grief and depression following the death of the loved one.” The caregiver interventions were aimed at “reducing caregiver burden, treating depression prior to death and providing supportive psychosocial or skills training.” Richard Schulz (Ph.D., principal investigator, lead author) stated regarding the “totally unexpected” findings:

Our findings show that caregiving is closely intertwined with the bereavement experience that follows. Family members caring for relatives with advanced disease would not only benefit from traditional caregiving interventions designed to ease the burden of care but also from pre-bereavement treatments that would better prepare them for the impending death of their loved one. (All information regarding intervention study was taken from “Strategies,” 2006):

In other words, a pro-active approach, centered around taking care of oneself physically, mentally, emotionally, psychologically, and spiritually can improve the grieving process after the loved one has died. Why might this be true? For starters, taking care of one’s physical needs while one is caregiving allows more energy for dealing with the emotional issues. Grief work is difficult, whether one is working through grief which comes in anticipation of a loss or grief which comes after a loss occurs.

Using the results of the intervention study as a framework, here are some suggestions and helpful internet links for resources aimed at helping one work through one’s anticipatory grief more effectively and better prepare oneself to deal with the grief which will be experienced after a loved one’s death:

1. Reducing Caregiver Burden
   
   
   1. Share the Care (http://www.sharethecare.org/) --- a model for how to organize a group to care for someone who is seriously ill
      
      
   2. Respite program of Alzheimer’s Services of the Crescent City (http://www.alzheimerservicescc.com/
      Resources/respite_care.html)
      ---providing some much needed “time off” for caregivers
      
      
   3. Adult Day Care (http://www.alzheimerservicescc.com/
      Resources/adaycare.html)
      ---would give one time to run errands, go to doctor’s appointments, spend time with supportive friends, etc.
      
      
   4. Family Caregiver 101 (http://www.familycaregiving101.org/)
      
      
2. Treating Depression Prior to Loved One’s Death
   
   
   1. “A Depression Recovery Lifestyle” (http://www.webmd.com/depression/
      depression-recovery-lifestyle)
      ---Excellent article on WebMD with main points:
      1. Exercise
      2. Get some sunlight.
      3. Get enough sleep -- but not too much.
      4. Eat a healthy diet.
      5. Do things you enjoy.
      6. Avoid alcohol and drugs.
         
         
   2. Chat Room of Alzheimer’s Services of the Crescent City (http://www.alzheimerservicescc.com/chat.html)
      --- Finding someone to speak with who understands what one is experiencing
      
      
   3. Exercise (http://www.mayoclinic.com/health
      /depression-and-exercise/MH00043)
      ---“Depression and Anxiety: Exercise Eases Symptoms” article by the Mayo Clinic
      
      
3. Providing Supportive Psychosocial or Skills Training
   
   
   1. Local Grief Support Services --- providing anticipatory grief counseling, as well as counseling for after loved one passes
      
      
      1. Alzheimer’s Services of the Crescent City (http://www.alzheimerservicescc.com/Resources/
         grief_support.html)
         
         
      2. Seasons’ Grief and Loss Center
         (http://www.seasonsgriefcenter.org/)
         – located in Metairie, LA (504-834-5957)
         
      3. Hospice agencies --- if a patient is in the latter stages of Alzheimer’s disease is deemed hospice appropriate and referred and admitted to a local hospice, psychosocial services are provided as part of the Hospice Team approach
         
         
   2. Online Grief Resources---providing online information and resources
      1. “Grief and Bereavement”
         (http://www.alzinfo.org/resources/end/grief/default.aspx)
         
         
      2. “Caregiving for someone with dementia: Grief and Bereavement” (http://www.alzheimers.org.uk/Caring_for
         _someone_with_dementia
         /Relationships/advice_grief.htm)
         
         
      3. “Feelings”
         (http://www.alzheimers.org.au/upload/tcotc02.qxp.pdf)
         
         
      4. “Grief and Loss”
         (http://www.alz.org/Care/Coping/griefandloss.asp)
         
         
      5. “Grief Knows No Bounds Over Alzheimer’s Course” (http://www.usatoday.com/news/health/
         2004-06-22-alzheimers-caregivers_x.htm)
         
         
      6. GriefNet.org (http://www.griefnet.org/)
         
         
      7. The Grief Blog (http://thegriefblog.com/)
         
         
      8. The Dougy Center (http://www.dougy.org/)
         --- for grieving children and families.

FINAL THOUGHTS

Loving and caring for someone with Alzheimer’s Disease presents many challenges, not only in the caregiving role, but in the grief process as well. However, challenges do not have to be hindrances. Dr. William Worden, in his book Grief Counseling and Grief Therapy states: “The time preceding a death can be used very effectively and can have an important impact on subsequent grief if the survivor is encouraged to take care of unfinished business” (Worden, 2002).

So much of the Alzheimer’s process seems so out of control and seeing a loved one die a little each day can seem more than one can bear. Yet, if this crucial time and limited energies are used productively, this lengthy process can help the caregiver’s healing process after a loved one’s death. Take the initiative, use the resources, allow someone to walk with you through the darkness, and cherish the special moments as they come. They will become precious memories when you look through the lens of the past.

Kim Smith
St. Joseph Hospice & Palliative Care Bereavement Coordinator

RESOURCES

“Anticipatory Grief,” Accessed online at
http://www.cancer.gov/cancertopics/pdq/ supportivecare/bereavement/HealthProfessional/page4 on February 22, 2007.

“A Depression Recovery Lifestyle.” (2005) Accessed online at http://www.webmd.com/depression/depression-recovery-lifestyle
on February 22, 2007.

Rando, T. A. (1993). Treatment of Complicated Mourning. Champaign: Research Press.

Reisberg, B., Ferris, S.H., M.J. and Crook, T. (1982). “The Global Deterioration Scale for Assessment of Primary Degenerative Dementia.” American Journal of Psychiatry

“Strategies That Teach A Caregiver to Manage A Loved One’s Illness Also Helps in Coping With Death (August 6, 2006).” Medical News Today. Accessed online at
http://www.medicalnewstoday.com/
printerfriendlynews.php?newsid=48852 on November 17, 2006.

Worden, J. W. (2002). Grief Counseling and Grief Therapy. New York: Springer Publishing Company.