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Posted: April 14, 2005

Spousal Caregiving

My Personal Support Group Experience

Bill Andrew

I asked out loud in an earlier column, "Can a support group make you a better spousal caregiver?" And my emphatic answer was "YES" -- especially if that support group provides both caregiver education and support. That said, I would like to share my personal support group experience and how it has benefited me as a spousal caregiver, how it benefited my spouse, Carol, and how it can benefit you.

Getting Started

Like many first-time caregivers, I learned the hard way since I had never had any prior caregiving experience -- at least for a spouse with Alzheimer's disease. My initial reaction was to do what I could for Carol to help her in her hour of need. However, no one seemed able to help me to help her -- physicians, friends, family, church, organizations -- since our area, Polk County, Florida, is a relatively rural county between Orlando and Tampa. Several years went by without any support other than family, friends, and physicians. And believe me, as welcome as that was, it was not enough.

One of our friends mentioned that someone they knew was now the local representative for the Alzheimer's Association. Once I made that contact, I was able to obtain some basic information on the disease and caregiver support. However, the meeting times of the caregiver support groups were not convenient to someone who was a 24/7 spousal caregiver. Then I came upon one that met on Saturday mornings which was convenient for me since I was able to have friends sit with Carol while I attended the support group. This was a real Godsend, helping educate me about the disease process and how to be a better caregiver.

Our church had a support group that met in the evening which was not very convenient for me. The facilitator of that group eventually left and the support group was no longer available. Upon consultation with our priest, I took it upon myself to re-start that support group, and we started meeting on Saturday mornings once a month. This became a special "Christ-centered ministry" for me, and I took it upon myself to learn everything that I could about Alzheimer's disease and caregiving. I also became an accredited support group facilitator. This coming September will mark the fourth anniversary of this "re-born" Alzheimer's support group -- four years of learning, of "sharing and caring," and of helping other caregivers.

I try to offer something educational every second or third monthly meeting, such as the Alzheimer's Association representative, a geriatric physician, a clinical psychologist, a hospice nurse, a memory disorder clinic physician, etc. I have also scheduled periodic workshops with multiple speakers. When we don't have an educational program, we have what I call "sharing and caring," where the participants share their experiences and problems. We also share "coping skills" that we have each developed. Our focus is on providing "Christ-centered" support for the members of our group. More than 90 caregivers have attended our support group at one time or another, and I maintain a mailing list of caregivers who receive a monthly newsletter and meeting announcement.

Benefits

As a spousal caregiver, I have received much more than I have given. Participating in a support group was very valuable -- however, facilitating a support group provides much more value to me since I learn from others. I feel that I am a better caregiver for Carol, and our friends and family agree. Obviously, my being a better caregiver benefits Carol significantly. Her physicians cannot get over how well she is doing despite the diagnosis of late-stage Alzheimer's. I attribute some of this success to what I have learned from other members of our support group.

The makeup of our group is very diverse -- those just starting the "journey," those in the mid-stage of the disease, those of us in the late-stage, and those whose loved one has died. We have spouses, siblings, adult children and those just wanting to learn more about the disease because, sooner or later, it may affect us all. This diverse group is very interactive, and I constantly strive to keep it that way. As previously mentioned, the facilitator can "make or break" a support group; therefore, I try to play a very active role in getting the other participants to also "share and care." I guess that the "proof of the pudding" is the fact that caregivers have indicated that they come to our support group because "we are family."

How can a support group benefit you? For starters, have you tried one? If not, why not? If you have, I would like to hear from you regarding the benefits that you and your loved one have received. How has attendance at a support group helped you? Have you tried attending several support groups in order to obtain a broader perspective on caregiving? What kind of support groups have you attended -- disease-specific, early-stage, late-stage, family-centered, online, relationship-oriented (parents, children, etc.).

Please share your personal support group experiences with the other readers of this column. Drop me a line at ASKBill@caregivershome.com.
 

WORDS TO CARE BY...
 

"The eyes of the Lord are upon those who love him,
a mighty protection and strong support."
(Sirach 34:16)


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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