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Posted: April 07, 2005

Spousal Caregiving

Can a Support Group Make You a Better Caregiver?

Bill Andrew

Support groups are a fact of modern life -- whether dealing with a life-threatening disease or dealing with a personal crisis in our lives -- and are becoming more evident and available for family caregivers. As I have said many times, "Caregiver education and support are the two biggest needs that have been identified in recent caregiver studies."

Can a caregiver support group make you a better spousal caregiver? My answer to that question is an emphatic "Yes," especially if that support group provides both caregiver education and support. But, just what is a "caregiver support group," and why should you join one?

A caregiver support group can be defined as a gathering of caregivers, family, friends, and other interested parties that is designed to discuss the many issues related to providing quality care for a loved one who is afflicted with a specific disease. This definition is intended to include both caregiver education and support. Since I am the 24/7 caregiver for my spouse, Carol, my focus would be on Alzheimer's disease caregiver support groups. You may have a different focus; however, our objectives would be the same: to obtain support as a caregiver for our loved one and for ourselves.

Although the American cultural tendency is to organize into groups (the "birds of a feather" syndrome). research indicates that the very real physical and emotional impact of caregiving has confirmed the importance of social support for caregivers. Over the past decade, chronic illness and disability have increased steadily, the life-span of the chronically ill has been extended, the significant growth of the elderly population, and managed care has moved much of the responsibility for treatment into the home. Therefore, more and more people have become family caregivers than ever before, thus legitimizing the role of caregiver support groups in the eyes of healthcare professionals.

Caregiver support groups are based on the shared experience that comes from being a family or spousal caregiver, complete with all of the emotions that come with that role. Because the focus is typically on the caregiver -- not necessarily on the disease or condition -- caregivers can openly discuss their own personal difficulties with their peers. Caregivers typically do not take the time nor have the inclination to talk about their own needs since their focus is on their loved one. Such support groups can be a real God-send to the frustrated and depressed caregiver. I know -- I have been there.

What can a caregiver support group do for me as a spousal caregiver? It can:

  • Provide a safe, supportive, and confidential environment for sharing feelings and coping skills in a non-judgmental atmosphere

  • Provide education and information on the specific disease and caregiving requirements

  • Provide an opportunity to talk and share with other caregivers who are going through, or have gone through, the same experiences -- I call this "sharing and caring"

  • Provide a place to learn coping skills and mechanisms, saving you much trial and error

  • Provide advice on what lies ahead for you so that you can be prepared and anticipate changes that will be occurring

  • Provide support for your personal sanity and confidence -- you are not alone

  • Provide a welcome break from routine caregiving responsibilities

  • Provide an opportunity to develop informal support and social relationships and to make new friends

  • Provide encouragement to participants to maintain their own personal emotional, physical, and spiritual health

  • Provide an opportunity for personal growth and development, especially as it applies to your caregiving role

  • Provide an opportunity to learn more about the specific disease afflicting your loved one and how to be a quality caregiver

  • Provide "tender loving care" from people who really and truly understand your situation because they are all "in the same boat."

What should you look for in a caregiver support group that will make it effective and efficacious for you? While any given support group may or may not work for you personally, there are certain characteristics that make some groups more effective than others. Keep these points in mind as you explore your options:

  • Is there a caring atmosphere and trust among the group members?

  • Is there a comfortable mix of participants representing all levels of caregiving?

  • Is there a clear structure and purpose where members know why they are there and what will be happening?

  • Is there a clear-cut agreement on group rules including, most importantly, confidentiality?

  • Is there a trained and experienced facilitator? Often, the facilitator is a trained professional -- which has value. My personal preference is someone who has personally experienced the caregiver role and can offer empathy and concern for fellow caregivers.

Consider joining a specific support group as an experiment. If one group does not work for you, try another -- or try the same one again when the fit feels better. Selecting a group that is comfortable for you is most important, as is knowing what to expect. Here are some questions to ask:

  • Who sponsors or runs the group? An established organization, such as the Alzheimer's Association, a church, or a hospital, is a pretty good indication that there will be a solid structure and reliable operation.

  • How long has the group been running?

  • What is the group's organizing principle? You may need information and resources that only a condition-specific group can offer -- in my case, Alzheimer's disease and related memory disorders. On the other hand, you may need peer support and a place to "let your hair down" more than you need information. Find what is best for you.

  • What is the make-up of the group? Where does it meet? How often does it meet? What is expected of you? Can you just listen and learn? What are the rules of confidentiality? Is it faith-based? Do you want a faith-based group?

  • Who is the facilitator? Talk with the facilitator and determine if there is a synergy between the two of you. Outline your concerns and interests. What kind of training and experience does he/she have? Has the facilitator been a "hands-on" caregiver?

Typically, caregivers do not know what they are looking for when they seek out a support group -- they only know that they need support from someone, since they are not getting it from family or friends. They just hurt and know that they need something. A caregiver support group is all about caring for the caregiver.

A good source of caregiver-related information is the web site of the National Family Caregivers Association. Other reliable sources include the condition-specific organizations that most closely fit the loved one's disease or disability -- in my case, the Alzheimer's Association.

I hope you'll check in next week when, in my next column, I share my personal caregiver support group experiences -- both as a caregiver and as a facilitator -- and how my experiences may benefit you. Also, you may have support group experiences that you would like to share with other spousal caregivers, drop me a note at ASKBILL@caregivershome.com.

WORDS TO CARE BY...

Whoever requites favors gives thought to the future;

at the moment of his falling, he will find support.

(Sirach 3:31)


Bill Andrew identifies himself as a former “nutritionally-empowered Alzheimer’s caregiver” who attributes the slow-down in progression of Alzheimer’s disease in his wife, Carol – and the growth of his own personal emotional, mental, physical, and spiritual capability and strength to provide quality 24/7 care for her in their own home – to the targeted nutritional supplements they both took on a daily basis. Carol went to her Heavenly reward on June 9, 2008 – Bill continues on to advocate for family caregivers. Contact Bill with your caregiving questions and comments via email at ASKBill@caregivershome.com.

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© 2005 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.

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