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Connecting the Dots: The Power of Community During Times of Grieving and Distress

10/26/2010 2:12:36 PM

Having a loved one diagnosed with dementia is emotionally trying — especially when you’re the family caregiver. It’s important to take care of yourself during the journey through dementia, which goes far beyond eating right and getting enough rest. Finding or creating a system of support can relieve a lot of the grief and distress that comes with living with dementia.

What exactly are support groups?

Support groups are groups of people who meet to support each other through various emotional and life struggles. They meet on a regular basis (weekly, bi-weekly, monthly, etc.), and are usually structured as drop-in events. The groups are usually small enough so that each member has the opportunity to meet and get to know other members, as well as share their own personal experiences. Support groups are typically directed by a predetermined, trained leader.

Alzheimer’s support groups range from general to stage-specific (early, moderate and severe Alzheimer’s), and can be focused around certain beliefs or groups of individuals (faith-based, caregiver-focused, etc.).

Support groups offer a way for the family care giver to take stock of their own health while learning from others, notes Erin Schoenecker, a Support Group Coordinator at Alzheimer's Association of Colorado. They can also simply be a place to catch your breath and regroup for whatever comes next.

How can support groups help?

Support groups can help you sort through the feelings, emotions and issues that are arising as your loved one is diagnosed with and goes through the journey of dementia. They can provide a safe haven for you to find support, share your distress and grief, and gain new knowledge and coping skills.

One member of a Alzheimer’s Association-run support group shared that the group is a safe place. “I don’t have to pretend everything is all right, or even that I’m coping well. Sometimes I struggle, I get angry or I can’t stop crying. People in my support group understand what I’m going through.” Another noted, “Each meeting has been such a relaxing and informative experience. I always leave feeling that I can make it through the next day.”

Families living with dementia experience a range of emotions and stress — from day one of the diagnosis through the end. “Spending time with others who are caring for someone with Alzheimer’s disease can provide insight, and often presents a source of practical help and advice,” Schoenecker says. She went on to share that people who participate in Alzheimer’s Association support groups report that they learn from the experiences of one another, as well as enjoy the comfort and support from others. It makes a difference knowing they are not alone during this difficult time — they are with others who understand exactly what they’re going through.

The Value of Community

Caring for someone with dementia is too much for one person to take on alone, and a support system is imperative for the health of the family care giver and the person with dementia. Creating a network of support gives the family care giver someone to confide in — and that someone will know what it’s like.

Dementia can be an isolating and lonely disease, so it is important for family care givers and the person living with the disease to socialize, connect with others, and have fun, notes Schoenecker. Support group members have said they “appreciate the opportunity to share, and also provide support and suggestions to other members.”

Overcoming Reservations

Although attending a support group will inevitably be helpful, you might have reservations. You may be nervous that you won’t find the right group for you, or that your schedule doesn’t allow the time for a support group — or you may be downright fearful about opening up and exposing your feelings to a group of new people.

To find the right support group for your unique situation and set of needs, first start by searching for groups that are convenient to your location and schedule. Many churches, community centers and hospitals host support groups, so chances are there’s one in your area. And, most are scheduled during evenings and on weekends, around working hours. Once you’ve found a support group that’s convenient, don’t feel bad if it doesn’t feel right. Try and try again — there will be a group that’s perfect for you.

If fear is what’s keeping you from reaching out to a support group, it’s important to keep in mind that every member of the support group was most likely nervous to share their story initially, but they all can relate and provide empathy. If you’re uncomfortable sharing in your first visit or two, simply listen and connect with other members — you’ll become more at ease as time goes by, and will share when it’s right for you! “They (participants who were nervous to open up) tell us now that they love how open everyone is about their situation, making them feel as though they are not alone,” according to Schoenecker. Another member said, “I like being with others who understand without me having to explain it.”

“Time and time again, I hear family care givers say their only regret is not coming sooner,” notes Schoenecker.

Seeking Support

Anger, grief, despair, frustration, and exhaustion are common feelings and experiences family care givers have. Schoenecker believes that sharing these feelings with others who relate can help normalize and validate them. Many people do not have a safe place that is free of judgment to share these feelings, and a support group can be that safe and supportive place.

If you are coping with a loved one suffering from Alzheimer’s, you are not alone. According to the Alzheimer’s Association, 5.3 million Americans have Alzheimer’s disease, and every 70 seconds, someone in America develops Alzheimer’s. With the increasing prevalence of this disease, support groups are more readily available than ever. If you’re ready to seek support, visit the Alzheimer’s Association Web site, where you can search for local offices and Alzheimer’s services by zip code.

It can be daunting for a family member to open up and become vulnerable to the waves of emotions associated with coping with Alzheimer’s. Support groups can help you stay strong in times of weakness, help you handle grief, manage stress, and provide a safe place for you to find much-needed encouragement. Do not be afraid to seek out a local Alzheimer’s support group. You will be helping yourself and your loved one by creating this essential support system.

For more information about support groups, or to locate one near you, please visit the Alzheimer's Association.

For more information about Alzheimer’s and Dementia Care:

Download The Homewatch CareGiver’s Guide to Living with Dementia

Read Homewatch CareGiver’s Bi-Weekly Dementia Care Tips

Call for a free Pathways to Memory™ evaluation. Offered exclusively by Homewatch CareGivers, Pathways to Memory is comprised of two distinct service options: Specialized Dementia Care and Focused Memory Training. All Pathways to Memory services are provided by specially trained individuals that bring patience and compassion to an emotionally charged family dynamic.

More About Homewatch CareGivers

Homewatch CareGivers is a premier caregiver agency, providing home care for all ages. We invite you to visit www.homewatchcaregivers.com, where you can read articles related to home health, Dementia Care Tips and home care news; or download PDF home care resources. From health care coordination and hospital discharge planning to home care transportation and daily living assistance, let our family of caregivers care for yours.

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