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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.

Caring with Confidence Receives One Lovely Blog AwardIn 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.

7 Comments Post a comment
  1. i know this is coming for my brother, but i hope it is a long ways a way for me, but he, himself, is ready to go and lets me know all the time

    July 23, 2012
    • I am sorry to learn that your brother is so ill, but he is fortunate to have you as his caregiver. Your care and compassion are evident. I am glad that you have access to the information and support that you need during this difficult time and hope that our site, in addition to other sites, is helpful to you. Please feel free to share with us any questions or topics of interest that you would like us to address in future posts. Our objective is to meet your needs, as well as the needs of others who are facing the challenges of caregiving for those with advanced illness. Thank you for sharing your story and for following Caring with Confidence.

      July 23, 2012
      • I wish you were here in Indiana

        July 23, 2012
      • I wish you were here in Indiana
        my brother is in the freezing mode more and more and it seems like he gets very confused with his topic he is speaking about, and gets frustrated, and sometimes stutters getting the words out. he tells me he dreams of death and has had conversations with God also

        July 23, 2012
      • Terry- Although many miles separate us, it is wonderful that we have this forum for providing guidance and support. The symptoms you describe are not uncommon in the advanced stages of Parkinson’s disease. I am glad that your brother is comfortable talking with you about his dreams and conversations with God. I am sure that he appreciates the ability to share these experiences and I hope that they bring you both peace and comfort.

        July 24, 2012
  2. Thank you for this post Terre and especially for the kind mention. The internet has its good and bad points, but when it’s good, it’s really good. No other time in human history have we had the ability to communicate with vast communities of people globally, with such ease and with almost immediate response times. After K had passed and I discovered grief I found a forum managed by Hospice of the Valley in AZ specifically for people grieving like myself. It’s a really wonderful, honest forum. It was a great comfort to know that I wasn’t going crazy and that others understood what I was experiencing. It even has a section for “anticipatory grieving”. You can find it here: http://www.hovforum.ipbhost.com/ Having resources like this, your own professional insights and all the others you mentioned is a tremendous gift for us. Thank you for all your efforts.

    July 23, 2012
    • Yes, Ira- you are correct that the Internet does indeed have negative aspects. Anyone can post information on the Internet so it becomes imperative that people have access to trustworthy, validated sites. Vulnerable individuals that are looking for answers to many questions can be too easily misled by biased or inaccurate information. And I also agree that when it is good, it is really good. We can access information and support 24/7. Thank you for sharing the information about Hospice of the Valley’s bereavement forum. Marty Tousley of Grief Healing facilitates these forums and is doing amazing work in this field. I am so glad that it was helpful to you. As always, thank you for sharing your story with others.

      July 23, 2012

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