J is For The Journey of Love - ABC's of Hospice Volunteers

I have never been a caregiver to an aged parent or sick spouse; though I’m sure my time will come.  There is no teacher like experience though and so I feel sometimes that it limits me as a volunteer when I’m trying to empathize with the caregivers I meet. 


I can only imagine what a lonely, scary thing it must be as one is thrust, often quite suddenly, onto this journey that they are totally unprepared for.  For example, there is much research to be done when you are still young and caring for an elderly parent.  After all, what do you know of Medicare part D, incontinence, social security, osteoporosis and such?  Or what does the healthy person know of catheters, bed sores and long term care insurance?


Walking this road of care giving day after day can take a toll on one’s own health as all the time and effort seem to go into the patient’s well-being.  Sleepless nights are compounded by a lack of exercise and of course, the grief that all involved are experiencing.

Oftentimes, one cannot maintain their employment while being a full time caregiver. This can lead down a road of financial strain and even wreckage. 

A person’s social life can be lost by the wayside if they have no respite care and can’t get out of the house to go to lunch, church, work or even the store.  Such isolation is not healthy.


If one has dependent children in the home, things are even more stressful as there simply isn’t time for one person to meet everyone else’s needs.  The caregiver finds him or herself on a path that branches off into several directions, each needing to be traveled now.  The guilt will eat at them as they must choose just one, leaving the others for another day.  Even spouses and grown children can feel neglected in this situation, and often, of necessity, they are!


Is it any surprise that care givers are often more depressed than the sick that they care for or that they have a death rate 63% higher than their peers?


This journey of care giving, however fraught with obstacles, is a true journey of love.  It can bring frustration and fear, but also wonder and fulfillment.  Finding the joy in the journey though, often requires finding help. 


Sometimes you may wonder if the patient you visit really gets much out of your visits, but it may be that the caregiver is the one that needs you most, whether it is for respite care, physical help or just emotional support.


Here are a few ideas for helping the caregiver:
·      Make sure that you ask after the caregiver’s health and well-being.

·         Express your admiration that he/she has willingly taken on this role and stuck with it.

·         Express your understanding of how hard it can be.

·         Allow them time to open up and share the difficult parts.

·         Laugh with them over the humorous aspects of care giving.  

·         Ask how you can lighten their burdens. 

·         Often times, they won’t come up with anything, so mention specifics that you would be delighted to assist with. 

·         Follow through!

·         Let them know how it helps you when they allow you to serve.

We can never alleviate all their stress or make the illness go away, but we can certainly brighten their path and lighten their load as they proceed on this journey of love that we call care-giving.  That’s Inspiration!

Things that were bitter to bear are usually sweet to remember.

I is for Infection Control - ABC's of Hospice Volunteers

But wait!  Don’t leave!  There is more than one kind of Infection Control!  While the OSHA standards (p.56-59 of your Training Manual) of infection control are very important information, it’s the other kind of infection that we want to discuss today.

Remember my friend I mentioned last month who is going through chemo (amidst several other trials)?  I sent her the column, thanking her for the inspiration and mentioning how sad it is when is someone attempts to make the grieving person feel better by being falsely cheerful.  The effect this can have is that it causes the mourner to feel guilty for feeling pain, as if they needed anything else to feel bad about!

My friend concurred, but added “Or, when the grieving person has to try and console the one who is supposed to be doing the consoling.  It's so draining...”

We would never go in and dump our problems on these already troubled souls and likewise we mustn’t make their own burdens any heavier for them to bear.

We must balance our words and actions.  We should empathize, and provide understanding of their pain, but not to the point that they are comforting us!  They have a lot of exhausting mental work to do as their lives draw to a close and we are supposed to be there to help and support, to cheer and to comfort, not to spread pessimism. 

I know that when I am troubled, my favorite people to turn to are those that can listen to my woes, sympathize with me and then turn around and help me laugh about them!  Why not?  I can laugh or I can cry, but crying just gives me a headache and makes my eyes red and puffy. 

With practice, each of us can help our patients by: 


1. Finding out what is troubling them.

2. Empathizing with their problems and making sure that their pain is recognized.

3. Utilizing the hospice support services team of chaplains and social workers as needed. 

4. After they feel understood, trying to help them see not only how they can learn and grow from their trials, but the humor hiding in them, laughing with them about the ironies of life.

When my friends with young children bemoan some disaster their little ones have created, I always ask them if they have taken a picture.  In the stress of the moment, they often can’t figure out why, but I know that as the memory of the mess and the anger fade, that they will be able to look back on the situation and laugh.  The situation may even become a favorite family story down the road.  I also know that the sooner they see the humor in the situation, the better for all involved!

Laughter is liberating!  It means that you choose NOT to be a victim of circumstances, giving you a sense of control.

Laughter is uplifting!  It releases those feel-good endorphins that serve as natural pain killers. 

Laughter is healing!  It is the best medicine.  No prescription is required, it’s terribly cost effective and there are no side effects!

For anyone facing a terminal illness, I’d say that laughter is not just a coping mechanism, but a kind of courage. 

Anatole Broyard wrote about the final days of his life in “Intoxicated by My Illness”.  He said, “Illness is primarily a drama and it should be possible to enjoy it as well as to suffer it... Illness, after all, is not all tragedy.  Much of it is funny.”

Your goal as a hospice volunteer, is not to transmit the toxins of gloom and drear, but to be infectious with laughter and cheer.

Hospice patients are going through some of the darkest, scariest days of their lives, and yet they are days that need to be cherished for both them and their families. 

Have you noticed how being around happy people helps you be happy?  A positive attitude is contagious. 

Have you ever been where someone is laughing uncontrollably and soon everyone else is joining in even if they are just laughing at the one who started it?  Humor is catching! 

Control the kind of infection you spread.  Enter any care center where the halls are lined with lonely people in wheel chairs anxious for the touch of human kindness.  Something as simple as your gentle words and your tender touch can start a real pandemic… of joy!  That’s Inspiration!

"There ain’t much fun in medicine,

   but there’s a heck of a lot of medicine in fun."   

(Josh Billings)

H is for How to Help them Grieve - The ABC's of Inspired Hospice Volunteers

A little girl once went to visit a neighbor who had lost his wife.  When she returned, her mother asked what she’d been doing.  She replied that she had helped the neighbor.  When her mother queried her further on how she had done that, she said simply, “I sat with him and helped him cry.”

It really can be that simple! 

As hospice volunteers we work with many grieving people.  As we all learned in our training though, grief isn’t just about death.  We can lose loved ones to mental illness, divorce or simply bad choices.  We can grieve over lost jobs, houses or life styles.  We can grieve lost hopes and dreams. 

Our patients are grieving for the children or grandchildren that they will not see grow and have families of their own.    They are grieving the betrayal of a body that has seen them through so many years.  They are grieving the loss of friends and family that suddenly stay away because they don’t know what to do or say.  They grieve for the hobbies and skills they can no longer enjoy.  They grieve their lost independence.  They may grieve as they regret the way they lived their life.  Grief begins when they find out that they are going to die and then it morphs and changes throughout their last days. 

Please don’t negate their pain.  Don’t tell them that “everything will be okay”.  Acknowledge their loss. 

I have a dear friend whose husband lost his job and was forced to relocate to a distant state and while she remained behind trying to sell their home, in the middle of preparing for her daughter’s wedding, she got cancer and another un-related family crisis arose.  Just today, right after another surgery, she was handed more bad news.  Rather than try to paint a rosy picture and say everything would be all right, I wrote to her, “When this is all over you will look back on this time and think about how you grew more during these several months of trials than you did in the previous several years put together.  In the meantime though, only the language of our children can describe it adequately:  This SUCKS.  Big time.”

 As we visit with the patients we mustn’t be afraid to say that yes, they’ve been handed a raw deal.  Put yourself in their place.  When someone minimizes our pain, it seems to hurt even more.  Once our loss is recognized however, we can often move forward. 

Give them an opening, an opportunity to share and let them decide what to do.  Anger is natural.  Some may choose to scream, or beat on a pillow to vent their feelings.  Some people prefer to grieve in private and that is okay too. 

I have a long-admired friend who lost her young adult son in a terrible accident.  As the day that he was supposed to get married approached, I thought often of her and wondered if she might need some company that day.  When I asked her though, she said that she planned to send the kids off to school that day and have some private grieving time.  I was so inspired by her answer.  I had been going through my own grief and in the years after she told me that, it escalated dramatically as I watched helplessly while family members self-destructed.  There were several days where I followed her advice, sending the children off to school, turning off the phone and having my scheduled time to grieve.  By the time my husband and children came home I felt better and had applied make-up and a smile, able to fully function once again.  I also found that it cut down drastically on the nights that I’d wake up and be unable to return to sleep for the grief. 

When someone you know is grieving, it can leave you feeling utterly helpless.   You know that you cannot ever eliminate their grief.  It is something that each person must work through at some time in our lives, some more than others.  Nobody can do it for us, and it can’t be avoided, though many try through alcohol or other drugs.  You may not be able to lessen their pain, but you can bring them some measure of comfort, thus allowing them to work through it more effectively.   Open your training manuals often.  Refer to page 82 and review the information on how to help grieving people. 

Each person grieves differently and for different reasons.  If you are prepared and trained, then the right way to be there for each person will be apparent to you, whether it is talking, listening or simply sitting with them and helping them cry.  That’s Inspiration!

G is for Give Them Purpose - ABC's of Inspired Hospice Volunteers

Sometimes as I ponder the sweet souls I’ve met through hospice, I wonder about how my journey on this earth will end.  I can think of nothing worse than to live my final days and years as my grandmother did, considering herself to be nothing more than a burden to others.  She begged God to let her die and join the husbands she’d already buried.   I hope that at the end of my life, I will be as independent as possible, but more importantly, I want to be able to give back and serve others till the day I die.

As their bodies fail them, our patients have been suffering for extended periods before we ever even meet them.  Suffering is a very self-centered activity so anything we can do to help them focus on the needs of others is very beneficial physically and mentally to both them and their families.

I’ve always been impressed by my husband’s grandfather.  His gallant ways bridged the language barrier between us.   He never failed to hold my arm as we crossed the busy streets of Berlin.   I was even more impressed when he found himself in a nursing home in East Germany.  The wall had just come down and things had not yet become “westernized”.  The facilities were wretched and the nurses even more so. 

His attitude saved the day though.  After overcoming the initial shock of finding himself there shortly after the loss of his wife, he took it upon himself to be the gentleman he had always been.  The women in the facility loved him for his attentions and manners!  He had found a purpose for himself and brought light and joy to the lives of others as a result.  He thrived so well there that his health improved enough for him to return home for several more years. 

 How can we as volunteers help the patients we serve feel like they are still contributing members of society through their final days?  I’ve come to the conclusion that we can help some be as independent as possible, but most importantly, I believe that we can help give each of them purpose, even if they are bed ridden.  I believe that everyone of us can learn, teach, grow and give to the very end of our lives.

Sometimes all these patients have left are their mental faculties.  Ask for advice, and seek their wisdom and experience.  If there is anything they do or say that you can learn from and apply to your life, be gracious and let them know.  Ask them to expound upon lessons they’ve learned throughout their lives and tell them how interesting that information is to you.  You may be the beneficiary of gardening tips, parenting advice or ideas on riding out the recession from those that survived the Great Depression!

You may never find an opportunity to use the information you learn from these grand folks, but what a joy it is to see their eyes light up as they share with you.

Are there other ways that they can still feel useful?  Perhaps they can knit or crochet or are willing to learn.  Maybe their creations will go to their family members as a legacy, or maybe they’ll go to the homeless, living on and giving comfort and warmth to the needy after the patient has passed on.  Could they write letters or cards to distant loved ones or soldiers, or could you write those for them?

 We all need to be needed.  Recording a life story can accomplish this.  Many times a patient will tell you that none of their family wants to hear about their life, but remind them that these things often change after we pass.  Perhaps it will be a grandchild or unborn great-grand that will someday cherish this link to their ancestors and learn from their experiences. 

Many people become more spiritual as the physical body declines.  If the patient is a prayerful person, they may benefit from being asked to pray for a certain individual who is in need.  Even the bed bound can do this and it can give them a sense of productivity right into their final hours, shifting their focus off of their own losses.

 Every one of our patients has gifts that can be shared.  Often, they are a buried treasure that we must hunt for.  Once we dig them up and find ways for the patient to share them, they can leave this treasured gift behind as a part of their legacy.   We volunteers can give these folks a sense of purpose and usefulness.  All that is required is our time, attention and a sense of adventure.  That’s Inspiration!