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Getting the support you need while a loved one is receiving hospice care: Caregivers supporting caregivers- Part Two

Caregiving may be easier with support from other caregivers

By Terre Mirsch

Last week we began talking about an important network of support and guidance for caregivers: other caregivers. We discussed the internet and social media environments such as Facebook, Twitter, YouTube, blogs, and online forums as important sources of support and guidance.

Advantages of these types of forums include anonymity (if desired) as well as the ability to seek information and guidance at any time of the day or night. Additionally, these forums expand our geographic reach, allowing us the opportunity to connect with others anywhere in the world. This week, Ira Woods of Conscious Departures posted a terrific blog, Roamin’ Forums, explaining the benefits he experienced with online forums, and including an informational primer complete with screen shots for those who are not familiar with this type of forum. I encourage you to check it out if you are interested in learning more about this type of caregiver support. Thank you Ira for sharing this important information!

Other caregivers, however, desire a personal, face-to-face forum for support, or a mixture of both. The decision to participate in a support group, or finding one that is right for you, can present challenges. Understanding what types of support groups are available, how you can access them, and what you can expect from attendance is essential.

Where can I find a support group that meets my needs?

Most communities have support groups for caregivers in addition to bereavement groups for those experiencing loss. Caregiver groups might be general enough for all caregivers, or there may be diagnosis or condition specific groups for caregivers of those with Alzheimer’s dementia, cancer, or Amyotrophic Lateral Sclerosis (ALS) to name a few. Bereavement groups may also be open to anyone experiencing loss, or they may be specific to age, gender, relationship, or type of loss. Groups can be found in just about any location including local healthcare institutions, churches, YMCA’s, senior centers, the local area agency on aging, wellness centers, cancer centers, and hospices. Local associations often sponsor groups that take place in nearby institutions like the library. Information regarding support groups can be found in local papers, church bulletins, through local associations, and on the internet.

What questions should I ask?
Support groups come in all shapes and sizes so it is important that you ask questions to find out if the group seems like a good fit for you. You may need to try a few groups before you find the one that is best for your unique needs. The following questions may help you find a group that is comfortable for you:

• Who sponsors the group?
• Who facilitates the group?
• Where and how often does the group meet?
• Does the group have a specific focus or forum?
• How many people attend the group?
• Is it an open group (members come and go with no defined start or finish) or a closed group where members commit to attending for a defined time period?

Why should I consider joining a support group?

Among the many benefits of support groups is the ability to receive support from others who share common experiences while learning strategies for effective coping. Support groups provide a place for caregivers or the bereaved to gather information, learn together, develop new skills, and share feelings while developing a sense of community and camaraderie. In other words, support groups help you to know that you are not alone in your feelings, fears, and frustrations. For some, support groups also present a social forum where new friendships are formed, and may even provide an outlet for laughter, fun, and hope.

Today, caregivers are asked to provide care in the home that was previously only done in healthcare institutions. This trend enables people with serious illness to receive care in the comfort of their home but can challenge and stress family caregivers. Support groups, whether in-person or online forums, offer a chance to receive needed education and skills while obtaining support that can be sustaining throughout a caregiving or grief journey. They also provide an important forum for helping others while also helping ourselves.

… People, more than things, have to be restored, renewed, revived, reclaimed, and redeemed. Remember, if you ever need a helping hand, you will find one at the end of each of your arms. As you grow older, you will discover that you have two hands, one for helping yourself and the other for helping others.

~Sam Levenson

2 Comments Post a comment
  1. Terre, we seem to be synchronized 🙂 What you posted here is a wonderful, full-bodied explanation about caregiver forums, both virtual and face-to-face. In days past many of us had large, strong extended families or a strong local community of neighbors. Our doctor was down the block and accessible. As that support has eroded, and doctors became more distant, we now find ourselves able to create global communities for support and encouragement during times of caregiving. It would be great to see these forums continue to grow in strength providing an increased source of comfort and help to millions of people who are taking care of loved ones.

    July 30, 2012
    • Yes, Ira, our community certainly has changed dramatically in recent years. Finding new ways to give and receive support during difficult times is critical. The various forums available through social media provide new opportunities for this. I appreciate your willingness to share how helpful these forums were for you following loss. Thank you for your response and for following Caring with Confidence.

      July 31, 2012

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