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Posted: September 29, 2005

Spousal Caregiving

Caregiver Education and Support: What Is Your Score?

Bill Andrew

As most of you already know, I am the 24-hour/day 7-day/week (24/7) caregiver for my wife of over 54 years, Carol, who has late-stage Alzheimer's disease. I was thrust into this spousal caregiving role more than 11 years ago and was totally unprepared (as most of us are) to provide significant clinical care for a loved one.

As with most things in life, we find ourselves in situations that are sometimes overwhelming. But how do we handle those situations? How do we prepare ourselves? How do we react when those situations occur? How does it add up? What is your "score?" I know that mine is pretty good -- considering the "journey" that Carol and I have been on, and are still on.

One of the ways that I prepared myself to be an Alzheimer's spousal caregiver was to become educated on Alzheimer's disease and the ramifications indicated for both Carol as the care-recipient and myself as the caregiver. Another way was to start attending support groups so I could learn from other caregivers. I can say without reservation that both of these strategies worked for me -- and they can work for you, as well.

Both of these strategies were "brought home" to me this past weekend. As a result of my attending support groups, I ended up facilitating an Alzheimer's support group that meets monthly at the church that Carol and I attend. I am now starting my fifth year as facilitator of this support group and I can say, without reservation, that I probably get more out this support group than any other support that I could find. I have a motto -- "loving is giving. . . giving is loving" -- which says it all about how I feel in this regard. I try to schedule educational sessions every third or fourth month, sometimes more frequently if the need is indicated. I find that by "giving" to others, they are "giving" to me in return.

Education

This past weekend, I arranged an educational meeting with a speaker from the Byrd Alzheimer's Research Institute, which provides oversight for all Alzheimer's research in the State of Florida. More than 50 caregivers, care-recipients, and interested parties were in attendance.

We all learned more about Alzheimer's disease, the research that is being conducted, and how the results of this research will affect our loved ones and ourselves. While this one meeting will not make any one of us experts on Alzheimer's disease, it will add to our knowledge about the disease and the disease process so that we can be better prepared to assist our loved ones.

It is incumbent upon you, as a spousal caregiver, to learn everything that you can about your spouse's disease and how you can provide quality care for them. Educational sessions, such as the one described above, will prepare you to be in a position to better handle those situations that will, and do, occur while you are providing care for your spouse, regardless of the disease. The Internet is loaded with information and is available to anyone. So is this website.

 If you are like me, your spouse's physician may have all the best intentions in the world but not enough time to share with you all of the knowledge that he/she has regarding your spouse's disease. Thus, it is up to you to learn from whatever sources are available to you. I have found three main sources of this knowledge: the Internet, books on the subject, and educational sessions such as the one described above.

On a scale of 1-10 with "1" being very poor and "10" being very good, I would have to give myself a score of at least an "8" and more likely a "10" in terms of educating myself on Alzheimer's disease and it implications for both my wife and I. We are now entering our 12th year as care-recipient and caregiver, something that Carol's physicians find difficult to believe.

Support

Attendance at support groups is essential if you are to learn how others have addressed the many diverse issues that can, and do, occur on a daily basis. In my case, those attending include pre-stage, early stage, mid-stage, late-stage, and post-stage caregivers of loved ones afflicted with Alzheimer's disease or some related cognitive or memory-related disorder. You will have to check out the various support groups that are available to you and your spouse in your local community.

In my case, I was not satisfied with the secular support groups meeting in various nursing facilities. I wanted more in the way of Christian support, and that is why I initiated a "Christ-centered" support group at my church. If you are a dedicated reader of this column, it should be obvious to you that my faith life and my prayer life are my "lifelines" to survival as a spousal caregiver.

The rationale for this approach has been vindicated by the attendance at my support group. We typically have 10-15 caregivers and their loved ones attending each monthly meeting. We often have 20 or more. When we sponsor educational sessions such as this past weekend, 50 or more caregivers and their loved ones attend. My support group mailing list has grown over the past four years and now exceeds 135 caregivers and other interested parties.

The purpose of this Alzheimer's support group, which meets on a regular monthly basis, is to provide an opportunity for family members, friends, caregivers, and other interested persons to gather regularly in a confidential, "Christ-centered" environment for mutual emotional support and to exchange coping skills with one another in matters relating to Alzheimer's disease or other memory-related disorders. We are affiliated with the national Alzheimer's Association, Florida Gulf Coast Chapter. Similar support groups are provided by other disease-related organizations.

This ministry -- and it has become a ministry -- supports the caregiver and their "personal support family" through an exchange of ideas and various educational programs in a "Christ-centered" environment. We provide support for those caregivers who are being continually challenged while providing care for a loved one. We also provide support for those who may have already lost a loved one to Alzheimer's disease. Typically, we share our problems, our concerns, and our coping skills – as well as other facets of providing care for a memory-impaired loved one.

Experience has shown that everybody gains some value from attending these support group meetings. Studies show that caregivers benefit from sharing their feelings and experiences in a confidential setting and are better caregivers when they have this type of support. Each of you has a story to tell regarding your personal challenges as a caregiver for a loved one afflicted with some disease.

Your personal stories can help others who might learn something from your experiences – and perhaps the stories of other caregivers will benefit you as well. We are a "community of caregivers" -- consider joining a caregiver community on a regular basis.

On a scale of 1-10 with "1" being very poor and "10" being very good, I would have to give myself a score of a "10" in terms of seeking and providing support through support groups. By sharing with others, I am learning and others are learning as well -- in effect "sharing the care."

What is your score?

 WORDS TO CARE BY. . .

"Ask not what your neighbor can do for you…

ask what you can do for your neighbor."

(John F. Kennedy - paraphrased)


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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