Thursday, September 22, 2016

Vigils, Doulas, Saints and Angels

Vigils, Doulas, Saints and’s hard for me to distinguish among these. 

A few weeks ago I had the privilege of leading part of a training event for our Vigil Volunteers (as we call them…others call them doulas).  I think saints and angels might be better.


What a group…Willing to go to the bedside of the dying at all hours of the day and dark hours of the midnight shift…soul-shaking commitment.


Who was I to try to tell them how to do their work?  It’s either in your heart or it isn’t. I have sat by the bed of many a person dying, no family, no friends, no one.  Dying alone doesn’t remotely sound inviting.  Heart cries out to heart, soul reaches out for soul…we need each other, particularly at life’s final moment. “I’m afraid.” “I feel cold.” “Does God really love me?” “Where am I going when I close my eyes?”  “Can you hold my hand, please?”  Then, silence…  Death is approaching.


Providing vigils with readings, methods, boundaries, and the like are necessary.  Heart is more necessary.  I can’t teach that.  I sat in awe as I read the “Loss Exercise” and watched this group weep over what they were choosing to lose when it came to their own health (as they related to the story in the Loss Exercise).  If you don’t have that piece, ask and I’ll send it.  Tenderhearted group.  I urged each to be sure they took care of themselves as tenderhearted people sometimes get lost in the chaos of life.


So, these are my thoughts on vigils, doulas, saints and angels.  The ground I trod that training day was surely holy ground…

Wednesday, September 21, 2016

Reflections on hospice care …

A dying person said to Cicely Saunders, “I am a traveler on the journey from one life to the next, and I need a place where I can be welcomed and looked after and cared for and be myself on that journey.” No, we do not have the power to control their illness or make it go away, but as hospice people we reach out with an outstretched hand, a listening ear, an understanding mind. Our kindred spirit helps to share their feelings, thoughts, and fears. We are an essential part of the road map of their daunting journey.

What a privilege and blessing to be part of the hospice team! Patients and families openly and honestly express their inner emotions so that plans of care will meet their unique needs.


On one hand, when the unfortunate, dismissive words are uttered, “There is nothing more to be done,” hospice is both death accepting and life enhancing. Hospice is not disease centered but patient focused. When cure is no longer possible, giving our utmost in care becomes the ultimate concern. Often when asked, “How can you work with people that are dying?” you probably answer, “You get more out of it than you give working with a great interdisciplinary team.” You understand the words of Ecclesiastes 7, “It is better to be in a house of mourning, than a house of fasting.” Confronted with the finitude of life we rethink your priorities, refine our goals, and redefine our futures.  We become better people because of hospice.  How blessed we are.


Based on “In The Face of Insanity, How Do Caregivers Maintain Their Own Sanity” by Rabbi Earl A. Grollman

Tuesday, September 13, 2016

The tension to pray at every visit...

Many Chaplains feel a tension to pray at the close of every visit.  Is it necessary to pray at the close of every visit?  Where does the tension come from?  Could it be that prayer was the expectation of church members when you were a pastor and you carry that into chaplaincy? 

How do you pray for an atheist?
How do you pray for a Muslim?
How do you pray for a Jewish patient?
How do you pray for a Hindu?
How do you pray for a Sik?
How do you pray for ........?

The list goes on and on.  But, the question must be answered.  Is it ever ok to simply say that "in my prayers I will remember you"?

Would it then be in order to seek the patient's permission to invite local spiritual caregivers of their faith to provide spiritual support along with you? 

There is much to think about when it comes to prayer.  Our study on the Clinical Use of Prayer deals with these issues and many more.  Prayer makes for good discussion, but too often we are more interested in doing prayer than talking about the patient's understanding of prayer and the patient's experiences with prayer.

So...back to the question at the beginning of the article...Where does this tension come from that you experience when you are coming to close of a visit?  Must you offer to pray?  Why or why not?

Thursday, September 8, 2016

What the Chaplain does not see … but hears about later, sometimes.

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."


A Caregiver’s Story: Getting Into a Dementia Patient’s Head

Caregivers are special.  I am sure I could many other words to describe their self-sacrifice, their patient endurance, their hard work, and most of all their love.  Their stories need to be told and retold.  They remind us of the depth of family bonds and what it means to go the extra mile(s).  As I was preparing for my Alzheimer’s support group I came across this story at Always Here Home Care website.  I give them credit for publishing this wonderful story:

Dad was adamant. He was waiting for his medical degree to come from the University of Minnesota and wondered why it was taking so long. I did what I usually did, and waited a few days to see if this episode of delusion thinking would pass. It did not. So, I went to my computer and designed a medical degree with my dad's name on it, scribbled some "signatures" on the bottom, put it in a mailing envelope and brought it to him, in the nursing home, the following day. He was delighted.

I added it to the other awards and degrees hanging on the wall; the entomology "degree," his legitimate college degree, some other earned awards, an "award" for helping direct Lawrence Welk's band. The wall was cluttered with the real and the fake, but I knew I would need to find room for more. Dad's brain would tell him he had earned something and eventually I would need to produce it.

Dad had, indeed, gone to medical school at the University of Minnesota, but that was before World War II. He took some time off to be an archaeologist and then the war broke out. During maneuvers in the Mohave Desert, Dad passed out from the heat. He smacked his head against the baked desert floor and sustained a closed head injury. He was in a coma for months and had to learn to walk and talk again. He succeeded, and stayed in the army until the war ended, but kept Stateside and trained as a sanitarian.

Dad became director of Sanitation for the city of Fargo, meanwhile raising a family and, like so many returning soldiers, he went back to school. He attended school at night and worked during the day.  I remember going to his college graduation. I was 14. Dad continued taking any graduate classes that would help his work or simply because they interested him, and he became very successful in the world of public health.

As Dad aged, fluid started building up behind the scar tissue in his brain. He had surgery to drain that fluid, but the surgery backfired and he came out of it with severe dementia – and bonded with a voice in his head we came to call Herman.

That is when reality changed for all of us.

Dad moved to a wonderful nursing home, a block from my house, and for the first few years, my mom was still able to live at home, so I'd take her each day to see him (eventually, my mother entered the same nursing home). Everyone in the family wanted to help Dad, but I was the only one who could really get into his head and be who he wanted and get what he wanted.

I was his office manager. I brought him his brief case. I made a graphic letter head for him, and made him business cards. I took dictation. I mailed letters, and "received" letters – and of course – made degrees and awards.

What Dad could remember was attending medical school at the U of M. Why wouldn't he have a degree, then? He watched Lawrence Welk on public television. I even bought him a baton because he wanted to direct the band. Why wouldn't he have an award for that?

One day, a couple of years into this saga, a psychiatrist caught wind of what I was doing. He chewed me out royally. I was supposed to ground Dad. Bring him back to reality. Redirect him. I had no business playing Dad's game.

Hogwash, I thought. I know my dad. I know he is not capable of coming into my "reality" and I wasn't going to torture him by trying to drag him along. If I argued that he was delusional, he would feel degraded and disrespected. It made no sense to me. I still had my brain. Why couldn't I put his anxiety to rest by traveling into his world – his "reality"?

The funny thing is, a few years later, a different psychiatrist stood looking at Dad's award and degree covered wall. A nurse stood next to him. "I didn't know he was a doctor," the doctor said. "He's not," the nurse said, with a grin. The doctor burst out laughing. Later he asked me where I learned my "technique."

"I'm his daughter," I said. That's all I needed.

Now there is an actual theory about this called "validation theory." It makes me smile. I didn't need a theory to know what Dad needed. I just needed love.

Validation is exactly what Dad needed, because what was real to him was real in his world. Yes there were times when I would try to explain true reality, but I chose my battles wisely. I tried to keep him from seeing television news because he would insist that the war going on (there's always a war going on somewhere) was in our town, right outside his window. I'd try to get him to walk to the window with me, but no, he knew the war was outside and I shouldn't belittle him by saying it wasn't.

Okay, I wasn't going to "play his game" and say, "Sure Dad, there's a war outside and they will blow us up anytime." If I couldn't convince him of the reality that we were in a "safe zone," so to speak, I would calmly say, "I'm sorry you can't believe me, but we are okay. We'll talk about it another time." Usually, these things happened when he was having a particularly bad day, and we'd just have to weather it.

However, the rest of the time, I'd just agree with him. What did it hurt that he thought he was helping plan the new zoo in Fargo, including finding an elephant? It kept him busy. What did it hurt that he needed to study "Grey's Anatomy?" I found a copy in the used book store. What did it hurt that he needed a copy of "Roberts Rules of Order"? I found that, after a search, online.

My point is this: Dad's reality was as real to him as mine is to me. Why should I, who supposedly can use my brain, make his life miserable by continually telling him he is wrong, when going with the flow was not hurting anyone else, and it was making Dad's life a little more bearable? Why would I not do what I could to help him have some feeling of accomplishment? I'm his daughter. He would have done as much for me.


Tuesday, September 6, 2016

What I have been doing these past few weeks...

I want to thank you for your continued interest in Embraced by the Heart of Hospice in spite of the fact that I haven't posted many new articles.  These last few weeks have been very work, with CPE and with house projects.  I am one of the most fortunate persons in the world working at Cornerstone Hospice.  There are so many positives about this sacred place.  I am blessed.  Preparing for our inaugural unit of CPE has been very consuming.  The curriculum is now completed and day one could not come soon enough!  This is a dynamic and challenging curriculum with powerful didactics, many opportunities for our group to excel with verbatims and weekly reflections, and personal and professional growth expected.  Our new CPE program will upgrade the level of spiritual care in the Central Florida area I am convinced.  Thanks goes to our visionary leadership team who gave the go ahead for this.  God bless them!

Prioritizing your Life and Work

I was reading a Facebook post that listed a number of special days in September.  It seemed excessive so I googled "special days in September".  I selected a nice sounding page to visit:  Oh my…nearly every day in September has a special day attached to it.  Here is the list:


Month-long Observances


National Photo Month

National Mental Health Month

National Military Appreciation Month

National Inventors Month

Young Achievers of Tomorrow Month

National Family Month


Week-Long Observances

National Family Reading Week - May 1 - 7 (first week)

Children's Mental Health Week  -  May 1 - 7 (first full week)

Teacher Appreciation Week - May 2 - 6 (first full week, M-F)

Children's Book Week - May 2 - 8

Screen Free Week - May 2 - May 8

Wildflower Week - May 2 - 8

Astronomy Week - May 9 - 15

Reading is Fun Week - May 8 - 14 (second full week)

National Backyard Games Week - May 23 - 30 (week before Memorial Day)


Special Days and Holidays


First Four Days

May   1 May Day

May   1 Mother Goose Day

May   1 Law Day

May   1 Make a Book Day

May   1  World Laughter Day (first Sunday)

May   2  Sibling Appreciation Day

May   2  Teacher Appreciation Day (Tuesday of first full week)

May   3  Sun Day

May   3  Kite Day

May   4  Intergalactic Star Wars Day


May   4 National Weather Observers Day


Next Eight Days

May   5  Museum Lovers Day

May   5  Cartoonist Day

May   5  National Day of Reason (first Thursday)

May   6  No Homework Day

May   6  International Space Day (first Friday)

May   6  Tuba Day (first Friday)

May   7  Space Day (first Saturday)

May   8  Mother's Day

May   8  V E Day

May   9  National Children's Mental Health Awareness Day

May   9  Peter Pan Day

May 10  Windmill Day

May 11  Eat What You Want Day

May 12  Limrick Day

May 12  International Migratory Bird Day


Next Six Days

May 13  Frog Jumping Day

May 13  Tulip Day

May 13  Blame Someone Else Day (first Friday 13th of the year)

May 14  Star Wars Day

May 14  Stars and Stripes Forever Day

May 15  International Day of Families

May 15  Over the Rainbow Day

May 16  Biographer's Day

May 17  World Telecommunications Day

May 18  International Museum Day


Last Week

May 20  Endangered Species Day (third Friday)

May 21  Armed Forces Day (third Saturday)

May 22  National Maritime Day

May 23  World Turtle Day

May 24  Scavenger Hunt Day

May 25  Nerd or Geek Pride Day

May 30  Memorial Day (last Monday)


I grew weary just reading the list.  What about you?  It is almost silly to attach such titles to nearly each day of the month.  We might say that someone has September’s priorities a bit messed up.


Chaplains have to be masters at prioritizing.  There are new patient’s that have to be seen/contacted in their first 5 days of admission.  Ongoing patients have to be seen every 30 days.  Crises must be addressed each day.  IDT meetings must be attended.  Chaplain meetings must be attended. Documentation must be up to date. The unexpected requests must be addressed.  How does the Chaplain get a grip?


Here are three basic guidelines that will help the Chaplain:

  1.  Place all known meetings (IDT, Chaplain meeting, and any other known meeting) on your Scheduler first.
  2.  Place your compliance visits on your Scheduler so you have direction, then fill in on a day to day basis with new patient visits.
  3.  Learn to say, “No” to requests that someone else can fill.  For instance, if you are gifted in speaking you may be asked to present at a meeting of some sort, but this meeting conflicts with compliance or new patient visits.  You must say, “No” and put the blame on your manager.  I always understand when a Chaplain  contacts me about this added stress and they need a way out.  I contact the organizer and either do the meeting myself or recommend someone to do the presentation other than that Chaplain. 


We are human and have so many hours in a day.  The expectations are always high; therefore, we need to be certain our priorities are in the right place…not like the calendar I referenced above.