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Caregiver's Nightmare

The behind the scenes experiences that go on in the lives of family caregivers of patients with dementia can be traumatizing.  Alzheimer’s aggression is not uncommon. Where does this leave the Chaplain?  How does he/she respond to the family caregivers as they try to process the rage that explodes all over them in such an experience?  The caregivers, no doubt, are already weary and could very well be worn out.  They need the Chaplain to just listen and empathize with them.  A gentle suggestion of respite care might be in order, but an empathetic presence is always in order.  As you read the following story from “A Place for Mom” ( ask yourself how you would be that empathetic presence for this family.


Charlie Powell feels like he lost his dad a long time ago. His dad, who has Alzheimer's disease, doesn't just forget who Powell is-he sometimes becomes violent.


"Once, me and mom disabled his car so that he couldn't drive it, and he soon realized what we'd done," Powell, 50, says. "He rushed across the living room and literally growled at me like a bear in the most frightful way. Thirty seconds later, he didn't know he'd done it, and everything was fine."


The "bear incident" is just one of many that eventually caused Powell and his family to put their 86-year-old father into a nursing home. "Once, the doctors noticed that mom's eardrums were both ruptured, and they realized dad probably slapped her upside the head and cupped her ears."


Unfortunately, Alzheimer's aggression is fairly common among Alzheimer's patients. There's cursing, hitting, grabbing, kicking, pushing, throwing things, scratching, screaming, biting, and making strange noises. More than 4.5 million Americans are diagnosed with Alzheimer's disease every year, and up to half can show some of these behaviors. The number of total Alzheimer's sufferers is projected to balloon to 16 million by 2050. 


Alzheimer's aggression is one of the main reasons most people put their parents in nursing homes. Fortunately, new medications and coping methods can help, though agitation and aggression are still a misunderstood aspect of Alzheimer's.


"The public thinks Alzheimer's is a memory disease," says Dr. Ramzi Hajjar, a geriatrician at St. Louis University in Missouri. "But, in fact, there are lots of neuropsychiatric symptoms. Alzheimer's patients often develop delusions. They think their family is stealing things from them, for example. And they get very aggressive and irritable towards their spouse." He stresses that families need to always remember that Alzheimer's aggression really has nothing to do with them. "The child always wants to take it personally, which causes unnecessary anxiety," Hajjar says.


What's Behind the Behavior?


No one knows for sure why some Alzheimer's patients lash out and others don't, but one University of Kansas study showed that recognition was the strongest predictor. Forgetting what something was, or what was inside something, was the most common cause of aggressive behavior.


Other studies have shown that Alzheimer's patients sometimes act out because of side effects like headaches, constipation, and nausea from some anti-anxiety medications such as Xanax® (alprazolam), Ativan® (lorazepam), and BuSpar® (buspirone). Patients who can't communicate often express their discomfort from those symptoms by becoming even more agitated and combative.


The first step in managing difficult behavior in the care for Alzheimer's patients is to find out where it's coming from and what it means. Does the agitation or combativeness mean the patient is hungry or thirsty or scared? Is it a reaction to something threatening or uncomfortable in their environment?


"I've seen people strike out because of their distress," says Dr. Ruth Tappen, director of the Louis and Anne Green Memory and Wellness Center at Florida Atlantic University in Boca Raton, Florida. "Once, a Holocaust victim would have his memories return at night, and he'd get aggressive, yelling and carrying on at his wife; twice he even brandished a knife. He was defending himself from long-gone dangers."


Other times, agitation starts when patients get frustrated with themselves, as simple memories start slipping away. They might forget where they put the keys, or what time their dinner appointment is that night. After asking a few times, everyone around them becomes irritated, and they get agitated.


But it's sometimes hard to know exactly why some lash out. That's what author Jacqueline Marcell learned, the hard way. Marcell, who wrote the book Elder Rage after an entire year of experiencing her father's Alzheimer's aggression, says she grew to learn what situations would trigger her dad's outbursts. But first, it took a year of doctor visits to even diagnose him correctly with Alzheimer's.


Managing and Treating the Aggression


Using medications to manage aggressive behaviors in dementia patients is considered very controversial. Doctors have tried using traditional (first-generation) antipsychotic drugs such as Mellaril® (thioridazine) and Haldol® (haloperidol), but their effectiveness was limited and carried some unpleasant side effects such as vomiting and nausea. Atypical or second generation, antipsychotics (such as Seroquel® and Risperdal®) have been found to be somewhat more effective in reducing behavioral problems, but they have not been approved for use in dementia patients by the FDA. In fact, the FDA has issued a warning in April, 2005 regarding "atypical" (second generation) antipsychotics in dementia patients. The warning states "that older patients treated with atypical antipsychotics for dementia had a higher chance for death than patients who did not take the medicine." Because this warning does not actually prevent doctors from legally prescribing these medications for this type of "off-label" use, it is extremely important that families understand the potential risks involved and proceed with caution.


Fortunately, drugs aren't the only answer. There are other ways that you can improve your situation. The following are some techniques and strategies that have helped many people successfully care for Alzheimer's patients and manage the Alzheimer's aggression:


Label and use signs, suggests Beth Nolan, PhD, author of the University of Kansas recognition study (see above: What's Behind the Behaviors). Place signs on rooms to say what they're for, put name tags on guests when they visit, and put labels on common items, like clocks and telephones. Tape explanatory phrases on doors or cupboards to tell them what's inside.


Know what the triggers are, and try to divert them. Typical triggers include getting people undressed for showers-they find the shower rooms cold and echoing. Or, being in a crowd can trigger the fear of getting lost. "If what you're doing is causing them to react, stop and step away," says Patricia Drea, RN, a 20-year eldercare veteran who works with Visiting Angels, a company that provides in-home care for the elderly. "Then, redirect them to another activity. Say, 'Here, let me help you stand up,' then move them to the next thing you'd like them to do." Try to distract the person with a pleasurable topic or activity. Arguing will make things worse. If necessary, leave the room and give the person time to calm down.


Use logic and reason. "When my mom-who also had Alzheimer's-left her watch in the sugar bowl, I didn't accuse her," Marcell says. "Instead, I said, 'Mom, why is there a watch in the sugar bowl?' She'd say, 'I don't know,' and I'd say, 'How do you think it got there?' Using logic helped her a lot."


Validate their feelings.  Tell them it's OK to be frustrated, or sad, or lonely.


Use a gentle tone and reassuring touches. Studies consistently prove this works. "Always smile, and look kind and gentle," Drea says. "Your face is an important signal that everything is alright." 


Stick to a regular routine. This will help minimize the number of unexpected and stressful events.


Ignore the angry behavior-if distraction and support do not work. If the situation is threatening, make sure he is unlikely to harm himself and stay clear until he calms down.


Maintain a sense of humor. "Anticipating that there will be ups and downs, and maintaining patience, compassion, and a sense of humor will help you cope more effectively with difficult behavior," says Catherine Johnson, PhD, a psychologist who specializes in dementia at St. Joseph's Hospital in St. Paul, Minnesota. "It's important to remember that it's the disease, not the person, causing the behavior."


Try music. Sometimes singing an old favorite song can get someone to calm down instantly. The American Academy of Neurology recommends using music to reduce many problem behaviors. They say it's most effective during meal or bath time. If you don't sing, play a song from their old collection.


Learn how to debrief after an incident and identify what caused it.  Ask yourself, "'What can I do differently the next time, to avoid the aggressive reaction?'" Johnson says. "Learn to resolve the emotional reaction you as a caregiver had. Then, you can move forward effectively. Take care of yourself."


Seek support for yourself as a caregiver. Finding support groups and counselors to help you cope is one of the most important things you can do. Not only can you help yourself deal with the difficult times, some of the people you meet may have some useful advice on managing the aggression. Some good places to begin include The Alzheimer's Association ( and the Alzheimer's Disease Education and Referral Center (ADEAR) (


Perhaps the most comforting thing about Alzheimer's aggression is that, for many patients, it's a phase that will pass. While the dementia itself is irreversible and will continue to worsen, for many patients the aggressive behaviors do seem to subside over time. Because this is a phase that can last for years, however, trying to wait it out without dealing with the behaviors is usually not an effective strategy for coping with the problem.


For some, the challenges of handling Alzheimer's aggression can become too great, and they may decide that they must place their loved one in a skilled nursing facility. Although this is never an easy decision, those like Charlie Powell know they have done the best they can, and that relying on the professional care available in a nursing home is the smartest choice.


"I know my dad is getting the best possible care now," Powell says. "And that's all that matters."


Richard Behers


CPE: What's the big deal?


From time to time, a Chaplain will have a case that is complex. This is one reason why I am adamant that a hospice Chaplain have 4 units/courses of Clinical Pastoral Education and Board Certification. CPE prepares a Chaplain for the rigors of hospice chaplaincy. For many hospices one unit of CPE will suffice. In my opinion, that does an injustice to the patients and families. An untrained Chaplain can inadvertently wreak havoc on a vulnerable patient, spiritually abuse a patient into doing what the Chaplain thinks will do his soul well; and, use a cookie-cutter approach to the Spiritual Plan of Care.  Those are just a few inadequacies of an untrained Chaplain. If a hospice is only concerned about getting a minimum wage type Chaplain, then so be it. However, there will be a time to pay the piper and that is when the caregiving family completes the Family Satisfaction Survey and the public has the opportunity to review it before they select a hospice for the care of their loved one.

What, then, is CPE? CPE is a hands-on experience that incorporates such matters as pastoral formation and pastoral reflection in order that the student develops a methodology of ministry that will provide spiritual care to persons of all faiths or no faith. The issue of religious countertransference is often an issue that requires hard work for the Student. CPE is a process. For this reason, there are four units/courses of CPE required as a minimum for a Student to seek Board Certification. Each unit is comprised of 400 hours of supervised study and clinical practice under the guidance of the CPE Training Supervisor/Educator. The end result of CPE is a Chaplain who knows him/herself and has the means to identify those issues that could jeopardize the pastoral encounters with patients and families. Further, the CPE trained Chaplain possesses the ability to read what Anton Boisen, the founder of CPE, called the "living human document." One of the key reasons I endeavored to attain Board Certification, even though hospices do not require Board Certification or even more than 3 units of CPE, was to develop the skills necessary to benefit the patients and families I would serve. My Board Certification was earned through the Association of Professional Chaplains with a specialty certification in Hospice and Palliative Care.

At this point, I find invaluable to state in a more detailed fashion what pastoral formation and pastoral reflection include. Pastoral Formation enables the Student to articulate an understanding of the pastoral role that is congruent with their pastoral values, basic assumptions, and personhood; demonstrate competent use of self in ministry and administrative function which includes: emotional availability, cultural humility, appropriate self-disclosure, positive use of power and authority, a non-anxious and non-judgmental presence, and clear and responsible boundaries. Pastoral reflection enables the Student to establish collaboration and dialogue with peers, authorities and other professionals; demonstrate awareness of the ethical standards of both chaplaincy and the local hospice; demonstrate self-supervision through realistic self-evaluation of pastoral functioning. Over the course of 1,600 hours of clinical work and classroom supervision, a Chaplain's theory and theology of pastoral care is very well developed. Therefore, based upon the preparation a Board-Certified Chaplain has undergone he or she becomes able to work with the complex cases with other members of the care team as a fully participating partner all for the patient's good. In posts to come will be examples of my understanding of pastoral formation and pastoral reflection.


Richard Behers


Chaplains as Conduits of Hope


Caregivers shoulder physical, financial, emotional, and spiritual issues that for most would be back-breaking.  How many of us in hospice and palliative care chaplaincy haven’t witnessed the exhaustion of the caregiver of an AD/dementia patient? or of the Parkinson patient? or ALS patient?  That is not to exclude the stress and mental, emotional, and spiritual exhaustion caregivers of COPD, cardiac, or cancer patient’s experience.

It is in the purview of the Chaplain to foster hope in the caregiver.  How?  “Previous research conducted by Benzein and Berg [Benzein E, Berg A. The level of and relation between hope, hopelessness and fatigue in patients and family members in palliative care. Palliative Med. 2005;19(3):234–240.] noted that family members of patients in palliative care had significantly lower hope than the patients, indicating that the family members' suffering may be greater than the patients. One reason for the lower level of hope noted by Benzein and Berg was that the needs of family members of patients in palliative care were insufficiently met, especially in regard to information and communication from healthcare professionals. Caregivers in the study by Perreault et al [Perreault A, Fothergill-Bourbonnais F, Fiset V. The experience of family members caring for a dying loved one. Int J Palliat Nurs. 2004;10(3):133–143.] also identified the lack of support from healthcare professionals as a factor that negatively affected their caregiving experience. Thus, it was postulated that encouragement and support offered by healthcare professionals can provide family caregivers with the strength, confidence, and comfort necessary to participate in the caregiving process, which can ultimately foster hope and lead to a positive experience for both the family caregivers and their loved one.[Benzein and Berg] Similar findings were noted by family caregivers in the current study, indicating that physical support, informational support, and reassurance offered by healthcare professionals and other supportive individuals were necessary to maintain hope during the caregiving experience.” [The Lived Experience of Hope in Family Caregivers Caring for a Terminally Ill Loved One, Sara S. Revier, RN, ACNS-BC, Sonja J. Meiers, PhD, RN, Kaye A. Herth, PhD, RN, FAAN Journal of Hospice and Palliative Nursing. 2012;14(6):438-446.] (emphasis mine)

Each Chaplain will have to decide how this information informs their approach to spiritual care, but there are several huge targets at which to aim one’s care: informational support, encouragement, and reassurance.  While it seems that these three arenas of support require a good bit of talking, they also require a good bit of listening.  I can recall listening to the exhausted pleas for help of the daughter of one of our dementia patients as she was at the end of her patience and emotional strength after what seemed to be several sleepless nights.  She needed to be heard more than she needed to be talked to.  I did, however, give the nurse a call to explain some of the issues she was having with her mother and have her provide education on those


matters.  The daughter just needed to talk it out.  In addition to listening and affirming the pain, this caregiver was experiencing I provided the intervention of clinical prayer.  For this woman, prayer inspired new hope even in her most exhausted moments.  It provided a sacred break in her world.

To further inspire your thinking and brainstorming the ‘how’ to being a conduit of hope, The Seven Desires of Every Heart by Mark Laaser and Debra Laaser provide an outstanding presentation of the desires of every individual.  Those desires are: to be heard, affirmed, blessed, safe, touched, chosen, and included.  Professional hospice and palliative care Chaplains are trained to actively/attentively listen in order to understand their clients and to help them feel safe through pastoral counsel which will focus on relieving anxiety and the “What ifs” that have become so prominent in this chapter of their lives.  Further, through a caregiver support group the Chaplain leads, caregivers will feel affirmed, will voice their pain, will feel a part of a greater group of fellow-caregivers.  This, Chaplain Colleague, is the power of chaplaincy.  

In my Clinical Pastoral Education groups, I teach the power of presence.  I do so using a discovery made in my Hebrew studies.  There was an assignment to exegete the word “glory”.  As I did, I gleaned two magnificent truths that inform my chaplaincy.  The first is presence, the second is weight.  The concept of presence spiritually is seen in the Old Testament when God shows up in all of His glory.  Everyone notices that God is present.  Application: When the Chaplain enters the room, be it the patient’s sickroom at the hospital, hospice house, bedroom at home, the dynamic of the moment changes.  That is the presence and power of chaplaincy.  Further, the concept of weight has to do with worth, value, and significance.  The words, body language, statements of the worth of the patient and caregiver carry immense weight.  When the Chaplain says to the weary caregiver, “You are doing a great job.  It’s obvious yours is a labor of love. You are amazing,” tired eyes regain their glow, stooped shoulders begin to straighten up, and their inner person feels resuscitated.  They can face another moment because of your influence.

In summary, hope is the result of all I have shared in this article.  Without question, I affirm the worth of chaplaincy.  My last anecdotal involves a member of my Alzheimer’s Caregiver Support Group.  June (not her real name) came to the group weary and guilty.  Weary from the physical aspect of caring for her dementia-stricken spouse, guilty because of what was facing her that neither she nor her husband wanted…placing him in a memory care facility.  She was faithful in her attendance.  She felt included and part of the group.  She realized she was not alone with her emotional challenges.  Each meeting had an agenda, but the participants always had the lion’s share of the time to talk and get out what was burdening them.  The day came when June’s husband died.  It was a Monday that he went to heaven.  June came to the group the next day.  There was a bit of tension in the room as June’s group wasn’t sure what to say or do.  June


relieved all of that when she spoke, “I want to thank each of you for your wisdom and encouragement.  You and Dr. Behers have given me what I needed…hope.  And, I thank you for it.  I must go now and attend to the funeral and other matters.”  Hugs and tears and well-wishes were the benediction to the meeting for June and the group. 

Hope… It’s really not that elusive.  Give people what their hearts desire.  Engage in the Divine/Human relationship with prayer, sacred text, and spiritual affirmations.  Then, watch what happens. 

Blessings to you, Hospice and Palliative Care Chaplains!


Richard Behers

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