Who Cares For The Caregiver?

Who Cares For The Caregiver?

The Caregiver’s Dilemma

The last time you were on an airplane, the flight attendant showed you the oxygen masks which deploy in an emergency.  Remember her counsel?  “If you’re sitting next to a young child, take the mask for yourself first, then help the child!”  She doesn’t want you to make the mistake so many caregivers do, taking care of everyone else except themselves!  

What is a Caregiver?

In one of every 3 households, at least one of the members is a Caregiver.  In the USA today, there are 44 million of them.  Over half are women, some men, unfortunately, some are children!  They’re looking after someone who can’t fully take care of himself or herself.  In some cases, it’s a temporary disability.  In other cases, it’s a progressive disability, like Alzheimer’s.  In many, it is terminal.   And in almost every case, the Caregiver makes a huge and commendable effort looking after the care-receiver.  Caregivers are magnificent and generous people,  but they stubbornly look after themselves last, very much to their detriment.

“Caregiving is universal.   There are only four kinds of people in the world:  those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.”  Rosalyn Carter

What is the value of Caregiving?

The Reverend Greg Johnson, a member of the President’s Committee on Caregiving, and a recent Keynote Speaker for our events, estimates the market value of Caregiving at $450 Billion in patient services per year.  That’s a  B not an M!  The math says that each caregiver spends over 20 hours a week, and provides $110,000 of free medical services a year.  Our organization is committed to the support of Caregivers.  Because when Caregivers discover they are shortchanging themselves in the business of living a life:-  having feelings, relationships, adventure, and personal purpose-  they’re  astounded.   And then, slowly,  they begin to make choices.

Our mission is to create support groups all over Long Island where Caregivers can make good choices.  Our vision is that similar processes can easily be generated nationwide.

The Caring For The Caregiver Program.

1. The Caregiver’s  Fair.  Working with local organizations and church groups, we invite all the members of the community to the Caregiver’s Fair. We’ve had many such events over the last 3 years.  In April of 2010, we had 82 attendees to our Caregiver’s Fair at St. Bede’s Episcopal Church in Syosset, NY.  The excitement was tremendous,  evaluations were overwhelmingly positive,  Caregivers left with a new awareness of their life choices, and a copy of the Caregiver’s Bill of Rights.  Subsequently, we hosted Caregivers fairs in Smithtown, East Setauket, Massapequa,  and Mineola.  In January of 2012, we had 126 attendees at a Winthrop Hospital fair.

2. The Caring and Healing Circle.  Four times a month,  local caregivers have met in Syosset, Long Island for an afternoon or evening to discuss their care-giving experiences.  Here, caregivers discover that they can talk about issues they could express at no other place.    Admission to the group is restricted to caregivers exclusively. And even the two trained facilitators must be or have  been a Caregiver.  At the end of the meeting, members are gently encouraged to consider or take action, and report back at the next meeting.

What differentiates these programs from other support groups is that this is not just an opportunity to dump your pain and get sympathy.   What’s unique is that, since all the members of the group are caregivers, they quickly set about counseling and healing one another! Over time, the group members move one another from being victims of their own generosity to taking care of their own well-being while they develop greater skill and efficiency as Caregivers.   In fact, in a few weeks they  give up being victims, and in 3 months, most are considering or taking action.  We keep careful records – see the diagrams following.

At each session of the Caring and Healing Circle, which follows the Caregivers’ Fair, our facilitators keep careful score of the “healing process” which takes place.

Actual Progress of Caregivers Attending the Caregivers’ Caring and Healing Circle

Each chart displays a participant’s healing progress, session by session.

 Each data point is an average of his/her comments during a single session.


Level 1 Victim The whole world’s against me and there is no way out.
Level 2 Complaint The caregiver expresses unhappiness or dismay at his/her situation.
Level 3 Reporting The caregiver is just reporting facts.
Level 4 Insight, Humor, Intention to Act The caregiver sees a brighter picture, and is thinking about making changes.
Level 5 Taking Action or Feeling Gratitude The caregiver understands his/her situation, is taking steps to manage his/her own welfare, and embraces the support he or she is perceiving/receiving,

Upward Movement on the graph indicates healing.


This is described as an Ordinal Descriptive Scale, and is an acceptable method for documenting attitude change.   We have kept careful records for the past 18 months, and, while each participant responds differently, they invariably show significant progress and upward movement within the first month, and usually get to Level 4 or 5 within 60 days.


One evening last year,  the members of the Syosset Caring Circle told us what value they  were getting.

  • They were not alone!
  • They had found  a place to speak and be heard which existed nowhere else in the world.
  • They were getting a means to experience understanding and acceptance of  that which was unique to them.
  • They had found a place which would honor their efforts to solve their own problems, the problems of the caregiver:   each problem unique, most apparently unsolvable.
  • They’d discovered both the meaning and the power of giving, something which gave meaning to their lives.
  • “I discovered that I had found meaning in my life by helping others find meaning in theirs, and helped others help others.”
  • “We all discovered that this was a place where we all “belonged” -  it had no cost, we were making it work, and it was perfect, and great, as were we.”

How you can help or participate.

If you are part of a religious or social community, would you like to help us bring our program to your location?  Our program, as set out above, takes about 3 months in the preparation.  There is a significant cost to the advertising, promotion, and staff cost to create this event.  However, we have funding we can contribute.  We have a clear timeline and activity calendar to produce the Caregiver’s Fair event; and we also provide training for the Caring Circle Facilitation group to manage the support group going forward.  Please call or email us if you’d like to explore further.

Who are you?

If you are a Caregiver, we invite you to join one of our support groups.  See “Members Comments” if you think you might like to visit us.

If you are a charitable organization, we would be pleased to have a conversation with you, or apply for a grant to support the Caring For The Caregiver program – as aligned with your objectives and interests.

If you are a corporation, an average of one in 10 of your employees is a Caregiver.  For most, caregiving takes precedence over the job..   Your caregiver employees come late, leave early, sometimes miss entire days and are on the phone with their care receiver when you’re trying to reach them.  Met Life’s most recent study says that Caregivers cost their employer about $2200 per year in absences and inefficiencies.   Our programs can help them, and help you, at the same time.

 If you are interested in helping us grow our program, and can contribute either money, time and/or effort, please contact us, tell us what you think you would like to contribute, and let’s see what we can set up.

The Caring for the Caregiver Team.

Craig Jennings, Founder      Roger Schilling,  Champion    Karen Schief, Executive Director   Bob Schief,  Audio, Video, Printing, .      St. Bede’s Bishop’s Committee,  funding and extraordinary inspiration.

www.cariingforthecaregiver.org   info@caringforthecaregiver.org  516 944-6454

Caregiver resources on Long Island.  CLICK HERE for addresses and phone numbers.

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