E is for Empathy - ABC's of Inspired Hospice Volunteers

My husband and I have twins and they are complete opposites.  One is an early bird, the other a night owl.  One likes hot cereals, the other cold.  One is very loud and out-spoken and the other is on the extreme side of bashful and shy.  One is a boy, the other a girl.  Despite their differences, or maybe because of them, they are very close. 

Our son recently started sparring in Tae Kwon Do and took a couple of good hits.  When his eyes, as he put it, “started watering” her eyes immediately welled up.  This made me recall a time years ago, when they received their kindergarten immunizations.  Our son was so brave and hardly flinched.  Our daughter, however, when it was her turn, went into complete hysterics and it was as he watched her distress that he started to literally go into shock. 

The twin bond is a remarkable thing, but what we witness between these two is more important and deeper than that.  They each feel each other’s pain.  They demonstrate a deep-seated empathy for each other.

Empathy is a character trait that I highly value and have worked hard to instill in my children along with a love of good literature.  I think compassion is a wonderful by-product of reading.  How can you be inside the character’s mind and not develop empathy for his or her plight?

The ability to imagine oneself in another's place and understand the other's feelings, desires and actions, from the inside, is a very important tool for hospice volunteers.  It is certainly helpful in maintaining patience with a difficult client! 

A dementia patient’s abilities for instance, change rapidly, sometimes even minute by minute.  An empathetic volunteer will constantly and quickly adapt conversation or games to these ever-changing aptitudes.  This allows the patient to experience a greater sense of independence instead of contributing to their already over-whelming sense of failure and frustration. 

When empathizing with a patient, I try to never say, “I understand how you feel.”  That may seem to negate what they are experiencing since obviously I’ve never been terminal or confined to a wheel chair.  I might say, “I imagine that it must be very _____.” Or phrase it as a question to allow them to open up further.  “What was the hardest part of having to leave your home and move here?”

Naysayers might think that you are making them sadder, by delving into their grief, but I would refute that.  The saddest person is the one who doesn’t feel understood, the one who can’t express their anguish.  They want someone to acknowledge their losses. 

When I was visiting a nursing facility there was a sweet little lady that I loved to talk to.  By the end of lunch however, she was usually distressed.  “I keep telling them that I can’t eat this much,” she would repeat.  The busy aides would tell her to leave it and brush her off.  I, however, had the luxury of time to stop and talk with her and empathize knowing that what you or I could leave on our plate without a second thought was painful to her as a survivor of the great depression.  I had no solutions for her, but how much happier she was, just knowing that someone understood what was for her a moral dilemma!

For the crankier patient, you might have your work cut out gently helping them to call upon their own stores of empathy.  For them to imagine themselves in the caregivers shoes might make a tremendous improvement in their attitude and patience level and consequently, in the life of the beleaguered caregiver.  This will be most successful though, after you have commiserated with them so that they feel understood and ready to understand others.

Each of you by merit of being in this position,  probably already have a well-developed sense of empathy, but the fact that you are reading this shows that you are a top quality volunteer open to new ideas and finding better ways to serve the patients.  That’s Inspiration!

Want to develop greater empathy

in yourself or your family?

Try this game.  I call it “Defense Lawyer”

First, ask your family what a defense lawyer is and what they do. 

Then challenge each other to watch for opportunities to play the game. 

For instance, the family is driving down the road and dad gets very frustrated with a driver in front of you going well below the speed limit. 

Ask, “Who would like to stand up in defense of this client?”

 With some practice, hopefully the kids will pipe up

with legitimate reasons why the driver is so slow, such as

 “she’s searching for an address”,

or “he’s old and scared of the traffic”.

What have you got to lose? 

The whole family becomes less judgmental and more empathetic,

 and with any luck, one of the kids may grow up to be lawyer!

D is for Discerning - The ABC's of Inpsired Hospice Volunteers

I am a retired Air Force wife.  Forget what the commercials say, because that is the toughest job in the military!  You no sooner find yourself transplanted to some foreign land far from friends, family and the English language than they send your husband away for a year or more at a time.  Most often you are pregnant when this happens and several major appliances are guaranteed to break down as well as the car, but not until the most recent hurricane has passed and the power has finally returned!

I jest, but only in part.  There were also lots of wonderful things about being a military wife like the travel, the food and, most importantly, the friends!  We learned to make friends fast and we relied heavily upon each other, forming bonds stronger than most because we were each other's family.  And, because of the nature of our husband’s careers, we got a whole new set of friends every year or so!

 There are certain friendships though that I can seldom look back on without getting teary-eyed.  Those are the friends that were with me through the most stressful times.  Those are the friends that in difficult times discerned my needs and set about resolving them often before I even realized what my needs were!

These women knew the truth in the Hindu proverb, “Help your brother’s boat across and your own will reach the shore”.

I’ve tried ever since to be the kind of friend and neighbor and volunteer that notices others’ needs and sets out to help before they ask, or sometimes even before they realize their own needs.

To discern is to see or recognize something that is not immediately clear or obvious.   As volunteers we need to be discerning first, of where a patient is in their end-of-life journey.  They may be in a stage of grief where they need to vent, or perhaps they may feel the need to plan or they may be in denial and want to discuss anything and everything but their reality.  Some days they may need to reminisce and other days discuss their belief system. 

Secondly, we need to discern what their physical needs are that day.  Things are changing fast for them and so their needs are ever-varying.   You can inquire as to how you can assist, but most often you will find that they don’t want to tell you because that is too much like “asking” for help.  They are ever so appreciative though when and if you can “discern” their needs and fulfill them!  This will require open eyes as you look around their home and open ears as you read between the lines of the conversation.  It will also require an open heart as you examine their situation and wonder what you would want or need were the tables turned and you found yourself in their shoes.  It may even require an open mind as you appeal to your higher power for inspiration.

 While going through some recent trials, I penned this verse which I firmly believe.

Far better than praying for self,

Is when other’s needs we discern,

For when another’s prayers we answer,

Our blessings are multiplied in turn.

There is a secret to being a hospice volunteer.  Others wonder how we can deal with such sad situations and spend all of this time around death.  They wonder how we can bear to lose so many friends.  The secret is, and I think every volunteer will readily admit it- that we get much more out of volunteering than we ever put in to it.  That is what keeps us going.  That is what keeps us strong enough to continue discerning and fulfilling needs.   That’s Inspiration!

C is for Creativity - ABC's of Inspired Hospice Volunteers

Imagine that you are a doctor sitting across from a patient. You hesitate briefly and take a deep breath before looking up into their fearful eyes and uttering those devastatingly hopeless words, “I’m sorry, but there is nothing more we can do for you.”

Thankfully, we in hospice need never even think such a thing. We know that there is always something more that can be done! Right up to their very last breath, we can hold a hand, cool a forehead or comfort a family member.
What about in between though? What can we as volunteers do during the last months of a patient’s life? We can be creative!

If you ever begin feeling awkward, uncomfortable or burned out in your assignment, it may be time to re-evaluate and get creative with the time you spend and how you spend it. Some people are not naturally chatty and need to be busy doing something, but what?

First, find ways to help lighten their load. What need could you fill? Shopping? Gardening? Cleaning? Cooking? Decorating for holidays? Providing the fresh garden produce that they can no longer grow themselves? Writing letters or cards? Clean out a closet and haul a load to the thrift store? Bring cut flowers? I’ve added beds to the back of our property so that I’ll have more to share. Thrift stores are full of good cheap vases that you won’t be afraid to lose.

Second, find some fun ways to help fill the time. Find out what they used to enjoy and begin with their interests, but perhaps introduce them to new ones as well. Card games? Board games? Reading? Baking? Puzzles? Watching old movies? Adapt entertainment to their limitations. I introduced a sweet guy to Bocce Ball (lawn bowling). We found that he could do it from a chair and not only did he get fresh air and a bit of exercise, but as a plus, I got lots of exercise retrieving all of our balls each round!

Third, draw them out. How can we most efficiently get to know them, learn their interests and earn their trust? Start by asking questions. Admire family photos and wall hangings of significance. Inquire about mementos and souvenirs on display. Peruse family albums. Talk to their family members. Record their life story.

Remember that it doesn’t matter what we’ve planned or prepared for on the day of our visit if we are not also courteous of their time and energy. It is not our agenda, but theirs. We must be brief if they appear to need that. We must respect their space and ask permission before carrying out even the best laid plans.

Despite what many claim, nobody is completely lacking in creativity. We are blessed to have inspired, big-hearted volunteers that can always find that “something more to do”. That’s Inspiration!

B is for Belief System - ABC's of Inspired Hospice Volunteers

Belief System can refer to life stance, religion, world view, philosophy or ideology. Think of people you have known throughout your life and you will see that one’s belief system can be a most powerful asset or worst liability. It is made up of a set of core values, on which we tend to base our actions, words and beliefs. It defines us and molds us throughout our lives.
This month we want to focus on the spiritual side of belief systems.

In the medical world, there is little to no room for anything but hard science. In hospice however, we see that anyone giving care to a dying person finds that even the most ordinary things can take on a spiritual nature. Spiritual support is an integral part of a patient’s care.

How can we as volunteers help provide that spiritual support without overstepping bounds?

First, we must respond to patients from their own backgrounds. To do that, we must learn what their background is. Most everyone loves to talk about themselves and this is especially important to someone who is dying as it allows them a bit of a life review as they process the fact that they are indeed at the end of their life. As you get to know a new patient, you can ask gentle questions that give them an avenue to discuss their belief system if they choose. They have to know that you are interested in a non-judgmental way. Recording a patient’s life history, will also likely bring their spiritual beliefs to the forefront.

Once we know what a patient’s background or belief system is, we can be there with them in that place.

It is so important that we never impose our own personal beliefs on patients or families. This can be a delicate thing when we wish to bring them comfort in times of grief, but what succors us may not console another.

Spiritually, everyone has a belief system, even if it is simply that they have no belief in a power higher than themselves. Those that have no higher power can be the hardest to support.

The most gut-wrenching funeral I ever attended was my husband’s grandmother’s in East Berlin not long after the wall fell. Denied freedom of belief system, or religion for so many decades, the young people in the family thought death was simply the end and that they had no hope of seeing her again. They were absolutely devastated by her passing.

We are blessed to live in a time and place where people are allowed the freedom to believe how they wish. We must not do anything to take this freedom away from others.

It is a tragic thing to witness someone in the depths of despair, but all we can do is be with them in their grief and keep the channels of communication open should they desire to explore other ideas.

We have awesome chaplains available to help with patients who are struggling spiritually. Perceptive volunteers will let the staff know when needs are apparent. That’s Inspiration!

A is for Affirming & Advocating - ABC's of Inspired Volunteers

 A is for Affirming:

Caregivers are heroes of the highest caliber. There is no one-time heroic rescue that brings instant fame.  Day in and day out, night after night they quietly give up their lives to care for their loved ones.  Visitors and family focus on the patient and his/her needs, but nobody needs affirmation and assurance like the beleaguered caregiver does.  They need to be reassured that they are doing their best.  They need to hear us affirm that it is hard.  They need someone to whom they can vent when they find that they can’t maintain the long-suffering, saint-like demeanor they often expect of themselves.  They need to be reminded that they must make time to take care of their own needs.  They may need permission to be less than perfect.  Sometimes they simply need someone to look beyond the patient and ask, “And how are YOU?”  That is where the inspired volunteer comes in.

I think of Karen* who faithfully took care of her husband through years of dementia.  All she asked of her volunteer was a couple hours of respite care while she made her monthly trip out to lunch with her girlfriends.  It was a wonderful break for her, but none of her life-long friends had a clue what she was going through.  She found it painful to sit through their complaints about ingrown-toenails and spider veins when she’d been kept up night after sleepless night by her husband wandering the house and falling in his declining condition.  Her volunteer made it a point to never leave until she’d allowed Karen a chance to open up and vent about the difficulties.  Knowing someone understands can make burdens somehow easier to bear and give one renewed strength to go on.

I picture Betty* who faithfully visits the nursing home three times a day to feed her husband his meals.  I see Francis*, her sister, who visits the room next door at least twice a day.  She is visiting her ex-husband, the father of her children, and after visiting, she takes his laundry home.  Neither man recognizes the sisters and yet these wonderful women serve on faithfully.  They need someone who will speak on behalf of the men and express admiration for their devotion and  dependability.  They need someone to quietly point out to their granddaughters what fabulous role models they are blessed with.

I’ll never forget Clara* who so lovingly cared for her husband as dementia took its toll despite the fact that her own body was ravaged by cancer.  Love was never manifested more powerfully.  Not only could her volunteer offer respite care, but a listening ear, an understanding heart and the reminder to take care of herself also.

Volunteers  can make a difference for  caregivers.   Volunteers  can their lighten their loads.  Volunteers can give weary family members the assurance and the affirmation that they need to carry on, because even angels need advocates!

A is also for Advocating:

We mustn’t be afraid to speak up if we see something that may need attention.  If a patient appears to be in distress or pain, a call from a watchful volunteer can get the needed professional on the job.   The hospice team’s goal is to help alleviate the family and patient’s stress as much as possible.  We are part of that all-inclusive team!

It’s likely the easiest advocating you’ll ever do since the entire team has only the best interest of the patient and caregivers at heart.  We can be the eyes and ears of the staff.  We are inspired volunteers assisting inspired professionals in providing exceptional end of life care.  That’s Inspiration!   

*names have been changed to protect patient privacy