K is for Knowledge and Kindness - ABC's of Inspired Hospice Volunteers

All hospices are not created equal!  I’ve always believed that we volunteer with a good hospice, but now I really and truly know what an incredibly great hospice Inspiration is. 

This last month, a very sick friend in Las Vegas had been sent home from the hospital after being told that there was nothing more they could do for her.  She is alone in the world and was too sick and weak to take care of herself, so I readily volunteered to get hospice set up for her, fully confident that one or two phone calls would have a nurse rushing off to her aid to get her admitted.  Knowing how simple our hospice tries to make it for families in such stressful times, I had no idea of the nightmare this would become! 

First, I’d learned previously from Shar while searching for hospices for my mother-in-law in Pennsylvania, that I wanted a National Hospice and Palliative Care (NHPCO)accredited organization. 

Having located  those online at NHPCO.org, I started making calls, but it was a Sunday morning, so every hospice I reached had an answering service that promised a call back from a hospice representative within a half hour.  If your family member was in crisis, would you like to be relying on a hospice that is using an answering service?   I wouldn’t. 

Inspiration has a nurse and doctor on call 24 hours a day, 7 days a week!

When the Las Vegas hospices finally did return my call, they told me they could get someone out there the next day although I found one who would send a marketer out that afternoon, but for informational purposes only.  

Inspiration will have a nurse out within the hour to do an admit!

By this time I was so frustrated!  Then I learned that they wanted nothing to do with her because she didn’t already have a doctor’s order for hospice.  They don’t want to admit a patient until they are guaranteed they’ll get paid for every bit of effort they put into them.

If Inspiration cannot reach a patient’s doctor because it is a weekend, they will admit the person anyway because they have 48 hours to get the admit.  If the  patient is denied for whatever reason, then Inspiration assumes the costs and calls it a loss!

My friend’s story did not end well.  In the end, the only hospice that would talk to us, insisted she call an ambulance and go back to the hospital before they would admit her.  My sick, stubborn friend was determined to remain in her home and so there was nothing more I could do.  My sister was driving down to be with her and she took it from there, but still couldn’t get her onto hospice, because they said her disease wasn’t considered end-stage. 

Inspiration, in this same situation, would have admitted her for failure to thrive or debility!

My sister took care of her for the next several miserable nights and days, hurting her back and shoulder in the process.   Knowing my sister had to leave soon, the friend was so desperate that she resorted to attempting suicide because she wanted to die at home. That failed and obviously the  friend was  too far beyond what my sister could physically deal with, so she was forced to  call an ambulance and have her admitted back into the hospital.  The friend was extremely upset with the situation.  This story could have been so different if we could have located a truly knowledgeable, kind hospice like ours.

Inspiration Hospice, from the founding principles, to the protocol, to the staff they employ and volunteers they attract, is truly all about knowledge, kindness and compassion.  I think of the poem:

I have wept in the night

For the shortness of sight
That to somebody’s need made me blind;
But I never have yet       
Felt a tinge of regret
For being a little too kind.

^Anonymous

Now 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