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Posted: February 01, 2007

Spousal Caregiving

Support Groups A-Z: What's in it for You?

Bill Andrew

As many readers of this column may already know, I have facilitated an Alzheimer's support group here in Florida for almost six years. There are several reasons why I do this:

(1) my wife of almost 56 years, Carol, has late-stage Alzheimer's disease and is a home-bound hospice patient;

(2) I have been Carol's 24/7 family caregiver for almost 13 years and have learned many caregiving lessons the hard way;

(3) I wanted to share these "hard-learned" caregiving lessons with others who are in the early stages of this journey so that their learning process will not be so difficult;

(4) I often learn myself from the "give and take" -- what I call "sharing and caring" -- with those who attend the support group. In fact, my personal caregiving motto is "loving is giving, giving is loving."

This week, I wanted to share a personal experience with a recent support group I facilitated. In the words of Hank Mersch, chairman emeritus, Polk County Family Caregivers, Inc. and a former 24/7 family caregiver for his wife, Esther, "The interaction and responsiveness of those attending this support group literally blew me away." During the more than 15 years that Hank was a caregiver, he had never before seen nor heard such participation in a support group -- and Hank had attended many support groups in both Ohio and Florida.

I must admit that during my years of attending and facilitating a support group, I have never before seen nor heard the level of "sharing and caring" that we all experienced recently at this Alzheimer's support group meeting. I am sure everyone attending this meeting came away inspired from the testimony of their family caregiver peers and with many "lessons learned" that they can use immediately in their caregiver role.

And that has prompted me to explain the value of a support group, and how a support group can help you. There are support groups for family caregivers and support groups for care-recipients who are afflicted with some form of chronic illness or disability. To give the most authoritative perspective on support groups, I have gone to the "experts" on family caregiving -- the National Family Caregivers Association (NFCA) and what follows is on their website.

Support groups are a fact of modern life, whether for people dealing with divorce or life-threatening disease, or increasingly -- for family/spousal caregivers. According to an article in the textbook Psychiatric Nursing, more than 20% of Americans have participated in some type of self-help group and, with the introduction of online groups, the percentage is growing rapidly. However, deciding to participate in a support group, or finding one that is right for you, isn't necessarily an easy thing to do.

The specific reasons behind the growth in caregiving support groups is worth thinking about because it reflects more than the American cultural tendency to organize into groups. Over the past decade, chronic illness and disability have increased steadily, the life-span of the chronically ill has been extended, the proportion of the population that is elderly has increased, and managed health care has moved much of the responsibility for treatment into the home, and so more and more family members are caregivers than ever before. In addition, research has pointed out the real physical and emotional impact of caregiving and confirmed the importance of social support for family caregivers, as well as for their loved ones, thus legitimizing the role of support groups in the eyes of healthcare professionals.

"Today people are being asked to provide treatment at home that would have been unthinkable even three years ago," according to Dr. Peter Steinglass, executive director of the Ackerman Institute for the Family in New York City. "In addition, there is much greater awareness of the burdens facing family caregivers, due in part to organizations such as NFCA. And fortunately, the availability of support groups has increased substantially."

Steinglass and his colleagues are working to normalize the use of support groups and networks, getting the word out to healthcare providers that joining a support group should be just as important as regular visits to the doctor, consulting with other specialists, and paying attention to treatment. "We hope to make it the default position," says Steinglass.

What benefits can you expect from a support group? How do you go about finding a support group? What makes a support group effective? What questions should you ask before choosing a group? This guide was developed by NFCA to help you answer these questions.

Why a Support Group?

There is broad agreement on what support groups offer. Some benefits are:

 

 

A safe haven for sharing feelings in a non-judgmental atmosphere.

A social outlet where you can make new friends.

Information about reliable products and services.

A place to learn coping mechanisms, saving you much trial and error.

Advice on what lies ahead, so you can anticipate changes.

Support for your sanity and confidence-you are not alone.

Help in dealing with family members.

Tender loving care (TLC) from people who truly understand your situation.

What Makes a Support Group Effective?

While any given group may or may not work for you personally, there are characteristics that make some groups more effective than others. Keep these in mind as you explore your own choices:

 

A caring atmosphere and trust among group members.

A comfortable mix of participants, so that bonds can build.

Clear structure and purpose; members know why they are there and what will happen.

Agreement on group rules, including confidentiality.

A good facilitator.

Many groups rely on trained professionals, but the background of the facilitator is less important than the ability to devise and use an appropriate structure, identify resources, respect group rules, and offer the empathy and concern that members need.

Types of Support Groups

Support groups can be organized in any number of ways. Although effective support groups have similar characteristics, their organizing structures can be very different. It is important to understand the different forms that support groups can take, so that you can decide which best meets your needs.

Condition-specific Groups. These groups focus on a particular disease/disability/condition. They may be organized within a hospital structure, or by an organization such as the Spinal Cord Injury Network or the Alzheimer's Association. They may be open to anyone interested in the condition, or designed for sub-groups, such as patients, family members, or a combination of both. The advantage of disease-specific groups is that they offer access to excellent, up-to-date information on the condition, as well as information about local resources.

Caregiver Groups. These groups are founded on the shared experience that comes from being a family/spousal caregiver, with all the emotions that accompany that role. Because the focus is on the caregiver -- not on the disease or condition -- caregivers can openly discuss their own difficulties. Caregivers seldom take the time or find the place to talk about their own needs, so this type of group may be especially valuable.

Relationship-Oriented Groups. This approach focuses on the relationship of a caregiver to the ill or disabled person as the cornerstone. A group might serve parents of special needs children, children of aging parents, or spouses of the chronically ill. The special nature of the relationship that each member shares makes for conversations that can bring relief and support.

Family-Centered Groups. Closer to a therapy group than a support group, family-centered groups work with the family as a whole -- improving communication and striving to strengthen the entire family as it copes with the illness of one of its members. In most cases, these groups require the structure and leadership that comes from having a professional facilitator with special training.

Advocacy Groups. An additional current trend is for support groups to include some advocacy activities or to connect with advocacy groups. Following the influence of AIDS activist groups and the response of Congress and other funders to organized campaigns for dollars for such issues as breast cancer research, some support groups have taken on advocacy roles. This can be both a healthy outlet for frustration and energy, as well as a way to hasten research, educate the media about a particular issue, or influence legislation.

Online Groups. Online groups provide many of the same benefits as traditional support groups, but have special characteristics. Worldwide self-help communities are possible, access to information is essentially unlimited, and connections can be made from your home. And for someone in a rural area or dealing with a rare condition, electronic connections may be the only way to be in touch with others sharing your struggle. Relief from isolation has always been a principal benefit of groups. A caregiver who cannot leave home can be a contributing member of an online group at any time and in any place.

Questions to Ask

Remember, joining a support group is an experiment. If one group does not work for you, try another, or try the same one again when the time seems better. Selecting a group that works in a way that is comfortable for you -- and knowing what to expect -- makes a big difference. Here are some questions to ask:

 

Who sponsors/runs the group? A hospital, church, or established organization sponsor is a pretty good indicator that there will be an appropriate structure and reliable operation.

Who is the facilitator? Talk to the leader if possible, and outline your concerns and interests. See how it feels. Ask about the leader's background and training, and how long the group has been running.

What is the group's organizing principle? If you are newly dealing with a disease or condition, you may need information and resources that a condition-specific group can offer. If you have been caregiving for a long time, you may need support and a place to let down your hair more than you need information.

What is the makeup of the group? Where and how often does it meet? What is expected of you -- is participation required, or can you just listen? What are the rules of confidentiality?

It's About Caring

As a long-time support group facilitator, people who call me don't usually know what they are looking for. They just hurt and know they need something. I talk with them for a while, and if I think our group can help, I invite them to our next meeting. I also encourage them to come back because the first time may have been too unsettling for them to really get anything out of it. Sometimes I suggest they consider more direct professional help especially if the need seems too great for the group to handle. Mostly, I want them to know that I care about them.

I think caring is largely what support groups are all about. In my personal view, a caregiver support group is all about "caring" for the caregiver. Participation in a support group can be critical for survival as a family caregiver -- AND for the care of the loved one. I can attest "first-hand" to the value of support groups in my personal "journey" as the 24/7 spousal family caregiver for my wife, Carol, for almost 13 years.

If you have any comments or thoughts about the above, drop me a line at ASKBill@caregivershome.com and I will share them with other readers in a future column.

WORDS TO CARE BY . . .

"Those whom we support hold us up in life."

Marie Ebner von Eschenbach (1830-1916)

 


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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© 2007 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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