Getting the support you need while a loved one is receiving hospice care: Caregivers supporting caregivers- Part One
By Terre Mirsch
When a loved one is diagnosed with a serious illness, it is natural to have many questions and concerns. You may rely on a healthcare or hospice team to provide the necessary information and support needed for decision making and the provision of care. You may depend on family and friends for emotional support, in addition to practical assistance with daily tasks. There is, however, another important network of support that is often unrecognized and underutilized: other caregivers. The benefits derived from the support of others experiencing situations similar to yours has long been recognized.
Caregiver and bereavement groups provide a forum for verbalizing feelings in a caring and non-judgmental environment, asking questions and sharing solutions, and gathering information about what to expect for the future, in addition to providing a social outlet for those that are often isolated. Traditional caregiver support groups and educational programs occur in a healthcare or other institutional setting. They provide opportunity to learn from and get support from both professionals and other caregivers. For many, this direct personal contact is comfortable and practical. I’ll share more information about these support networks in Part 2 of this blog post next week.
But other caregivers or bereaved may find they prefer anonymity that may be difficult to maintain in the traditional support setting. Or they may find the rigors of caregiving preclude attendance at these events. Today, it is not necessary to leave the comfort of your own home to receive support from other caregivers. Social media provides opportunity for caregivers to connect with others anywhere in the world through Facebook, Twitter, YouTube, online groups, and blogs.
Facebook caregiver groups provide a chance for caregivers to post pictures or network with others. Caregivers can listen to the stories of others, learn how to perform important caregiving tasks, or explore care options on YouTube. Online forums such as Inspire.com connect people that are experiencing common health related problems or concerns.
Since the inception of Caring with Confidence, I have discovered a community of caregivers who support each other and learn from each other’s experiences through the social media environment. Sites such as Caregiving.com provide opportunity for caregivers to receive information and support from other caregivers. Additionally, there are many caregiver bloggers, several of which follow Caring with Confidence. I have had the privilege of following their blogs and learning about their daily challenges and concerns.
Beth, from Middlescapes, shares her courageous journey in caring for her mother, who is now receiving hospice care. Last week, Beth nominated Caring with Confidence for a fun, pass it forward blog award, One Lovely Blog. She stated “Caring with Confidence, Support for end of life caregivers, is of great use to me now. Not just for the practical information it shares but for the courage and humility with which it grows my confidence as an end of life caregiver.” Thank you Beth! Caring with Confidence is a team effort, just like hospice care. We are thrilled to know that our efforts and insights are making a difference for caregivers like you.
In keeping with the rules of the One Lovely Blog Award, we are posting the award logo. And I refer you to our About tab for the seven facts blog nominees are asked to share, so that you can learn more about our contributors. In keeping with the spirit of the award and the purpose of this blog site, I share a few sites of other caregiver bloggers that may be helpful to you, as a caregiver:
In Conscious Departures, Preparing for what ultimately lies ahead, Ira Wood shares his journey in caring for his wife K. His site is dedicated to encouraging and helping people begin a conversation with their loved one about what to do when faced with end of life, and is focused primarily on the choice to die at home.
Let’s Talk About Family shares the challenges associated with caring and advocating for elderly parents. Lori’s mother died on hospice care, and today, she plans for her father’s care needs while also exploring options for the care he will need in the future.
Marty Tousley, CNS-BC, FT, DCC of Grief Healing provides useful information on caregiving, grief, and transition. Marty, a bereaved parent, bereaved daughter, and bereavement professional, expands the realm of support to include those who have suffered the loss of a pet.
In Griefministerdotcom, Larry Barber, LPC-S, CT passes along the same support, comfort, encouragement he received following the tragic loss of his wife and child. He shares his knowledge about grief to others who are struggling after the death of a loved one.
I am confident that there are other blogs and online forums that may be useful to caregivers of those facing advanced illness and end of life and I look forward to learning about them. Please share any additional sites that you feel might be of value to other caregivers in the comment section below. Expanding our caring community will serve to reduce isolation, improve coping, and increase confidence as we tackle the daily challenges of caregiving.