HKA fosters  powerful approach to group caregiving:

SHARE THE CARE GROUP         Pat Richards, Visiting & Bereavement Volunteer

 

This is the story of how Hospice King Aurora helped us provide vital group caregiving for someone suffering from a life threatening illness, and, in the process, touched all of our lives for the better.

 

When we first learned that Joyce was suffering from ALS, we knew she’d need daily, ongoing, deeply personal care, love and understanding. Her needs would be too great for her caring,, elderly husband to meet on his own, since their extended family, although very committed, were geographically dispersed.

 

However, they did, however, have a large number of friends, neighbours, and acquaintances nearby. Many were complete strangers to each other, had never been caregivers for a seriously ill person, and found Joyce’s illness very scary. But all had a heartfelt desire to help in a meaningful way and to make a difference.

 

We wanted desperately to help, but we didn’t know each other and we didn’t know what to do. How would we know what Joyce and her husband needed or wanted as her disease progressed? How would we find the right person for each job as it was needed? How would we make it easy to help without getting overwhelmed, burning  out, or duplicating each other’s efforts? And how would we make it comfortable for Joyce and her husband to ask for and accept help, while maintaining their dignity and independence and living their lives more fully?

 

A community parish nurse informed me about the Share the Care (STC) model, which she had studied in a workshop offered by Hospice King Aurora (HKA). The staff at HKA then provided me with support, encouragement, and resources, to create and sustain such a group.

 

The result was a caregiver family that people wanted to be part of, that nurtured not only Joyce and her husband, but also everyone who participated. We discovered that no matter how scared we were, how sick Joyce became, or whether we had ever been a “joiner”, we could participate in a group to make caregiving a meaningful and less stressful experience for everyone. Together we could all help take care of Joyce, and take care of ourselves too.

 

STC is a clear, practical, proven and highly respected group approach for giving care to someone who is seriously ill.  It provides the practical tools and guidance needed, and has been refined through the experiences of many groups. STC doesn’t require any training or cost anything, but rather uses all the skills the members already have, while asking members only to do what they’re comfortable with. The process begins with a meeting in which several group exercises and practical worksheets help put members on the same page, and create both a lasting emotional bond and strong group organization. The model provides a regular check-in process to assess the support and services needed, and to arrange for those services as best as possible. It sustains the group when things get difficult, is innovative, and builds community. To learn more, you may consult the staff at HKA, the book Share the Care: How to Organize a Group to Care for Someone Who is Seriously Ill, or the website: www.sharethecare.org.

 

FEEDBACK

 

from STC Group members:

• The STC Group was a wonderful, cohesive group of caring individuals and I was happy and proud to be a part of it.  Through this I realized, more than ever, how people can come together to take part of the burden from an aching heart.  It was an honour to be asked to be a part of this team. I know together we made a big difference to them....good feeling!

• This program has really enlightened me about what a caring community is all about and what we can do collectively when we all pitch in with our various skills, talents and schedules!

• I wanted to do something to help. It’s so difficult to know what to do and the STC gave us a way to show our care and concern and a real way to do something that could be helpful. It feels good to know that you’re able to do something to lessen their burden in even a small way.

• For me, the STC Group has been an epiphany of what’s possible in the best way when caring people join in a well-structured way, with the goal of meeting needs.  Personally, my time moved from trying to help- to enjoying time with a new friend while helping.  She inspired me in the way she faced the vicissitudes of her illness, and in the work she had done through her life.  I found it satisfying to be able to help in a meaningful way using skills I have and know were needed; they always expressed their gratitude.   Doing this in a group of other caring people connected me with a great community.   

• We get back tenfold what we give. Thank you for the opportunity to meet and work with an incredible group of caring individuals.

• An excellent forum to allow friends, family, acquaintances to assist according to their availability, means and capabilities.

 

from extended family & friends who were geographically dispersed:

• Thank you so much for the continuous updates. It’s hard with a big family to have everyone on the same page. We appreciate this so much! We’re so happy she’s getting such wonderful care and that you all love her as much as we do.

• Our sincerest thanks for all you’re doing to take care of her. It’s so reassuring to know she’s in such wonderful care even though we can't be there.

• You all have been so loving and helpful.

• She sure has wonderful support. We appreciate greatly the affection your group exhibits daily.

• It's obvious they’re in good hands. A friend in need is a friend indeed; your group certainly embodies that axiom. It's comforting to know you're there.

 

from health care professionals:

•  Many thanks for all your incredible efforts. I wish all our clients had access to such support.

• I‘ve never met a more caring and considerate group of people in all my years of nursing.  Good work to all!!!!

 

Clearly the benefits of the STC Group system are enormous. The ill person receives more comprehensive and higher quality care in every sense. Moreover, the caregivers are supported, healed, and even enriched through the experience, so that they can appreciate death and dying not only as an inevitable fact of life, but also as a mystery to be respected and revered.

 

I wish to extend my heartfelt thanks to the staff of HKA for helping me to activate and sustain our STC group. It was their support and guidance that made this experience possible. And I encourage others involved with an individual who is terminally ill, chronically ill, or disabled to create their own STC Group of supportive partners in the caring process. Joyce would have wanted nothing more than for others to benefit from her experience.