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Survey From Newsletter Subscribe 12/31/98
I would like to thank everyone for their time and thoughtful responses to the survey. It was incredibly uplifting to read through them. All total, there were about 25 responses. I am going to list the responses...

TOPICS CAREGIVERS WANT TO HEAR ABOUT

Legal and financial how to's ie: living wills, power of attorneys etc.

Assistance to relieve my fears as a caregiver

Problems with siblings who won't deal with the illness of our loved one or participate in the sharing the role of caregiver

Critical family and friends who judge the way we are caregiving to our loved ones

Many were coming to accept the idea that you can plan and organize just as you always would but you can not control the fact that everything can go up in smoke just like that, leaving you frustrated and sometimes, even stunned

Many of you responded that you were very tired most of the time...Several indicated that they had difficulty sleeping, because they were afraid something might happen in the middle of the night to a loved one who was living in their home.

Many requested support for their family. Some family members are into denial and don't want help.

Funeral arrangement information.

Financial arrangements

Coping with co-workers while caregiving...repetition of updating the current situation of their loved one, taking time off, delegating work and more

Communicating with parents and grandparents about decisions, dealing with realities, choices etc.

Handling our loved one who receives our care and their anger

Suppressing our apathy for our loved ones

Looking at our own issues of mortality and how our lives have been put on hold, or dying in many ways

How to keep our lives functioning and stable

Working with family members who are mean and critical

Keeping our loved one happy and comfortable during the terminal deterioration process right up to their passing

Couples who are disabled and caring for one another needing respite, help cleaning and assistance in the home, shopping, transportation etc.

How to vent with our loved ones, communicate, share, cry, have intimacy and remain loving

DIFFICULTIES EXPERIENCED AS A CAREGIVER

Dealing with family members and relatives who do not approve of or agree with the way you are caregiving and dealing with unrealistic family members When there isn't a will how do we distribute their personal effects. The difficulty in communicating with loved ones, especially our parents as to what they would like us to do...Do we donate to charities, have garage sales, who do we give the savings to. Many of the ill are not willing to discuss these issues.

How to stay on top of abuse of the elderly, our loved ones in nursing homes

Lack of sleep

Learning all there is about the illness or disease, new technology and methods that are available, reactions to new experimental medications and possible conflicts with other meds

Letting our loved one remain as independent as they can during the various stages of their disease or illness.

Giving up the need to be absolutely on top of everything. Not being able to control everything, including the pain and suffering our loved one is experiencing

Making and coordinating doctor appointments and treatment schedules and juggling work schedules or personal family life

Learning not to react when our loved one is not in control of their anger.

Learning how to not get angry with all that we do, feeling guilty and as if we aren't doing enough

Keeping our sanity especially when we ourselves are ill

Keeping my own life active and maintaining an optimistic attitude for myself and my loved one

Keeping love alive

Sexual intimacy

48 hour days that aren't long enough to do everything

Feeling guilty when your loved one has difficulty in asking for help from yourself as well as other family members, especially children

Feeling guilty about taking time for yourself

Feeling overwhelmed, can't cry or discuss what you are feeling

DIFFICULTIES OUR LOVED ONE IS EXPERIENCING IN THEIR ILLNESS WHICH AFFECTS US AS THE CAREGIVER

When a parent has never really communicated, dies and we have no idea of illnesses or disease which had a history in the family's health history, which might be affected ourselves or our children.

When they forget things, misplace them or destroy them

Their anger and violence over their current situation

Their unwillingness to live a quality life out in their final days, to have love in their heart for themselves and others

Their lack of intimacy

Their inability to get information straight

They won't let us support them in getting back on track and having fullness and the quality of life in their lives because of their current deterioration

Coping with a loved one whose dysfunctions from their upbringing are heightened by their illness, disability or disease. They are not willing to work on the issues at hand, emotionally

MOST RESPONSES WERE IN FAVOR OF:

keeping a journal

writing and processing the journal exercises

spiritual, inspiring stories

laughter

many would like weekly topics in the chat room while others felt that even if there was a scheduled topic, many don't adhere to it. t

Almost everyone said they would like to contribute to the newsletter amd the site

The Healing Circle

(please submit your loved ones names as well as your own)

were willing to discuss the final stages with their loved one they were caring for, although they didn't always feel the care receiver was willing to communicate

Most were willing to learn what was necessary to complete business affairs, about funeral arrangements, etc., living wills, etc. when their loved one was terminal. There were also those who were scared to think about it and learn.

MEMBERS COMMENTS WERE:

A few indicated that they were no longer Caregivers but that it was important for them to help others in their time of need through the chats, from their own experiences. It is a healing for them to participate through the lessons they have learned as Caregivers.

Most indicated they loved the humor and the support in the chat. It really pulled them through the weekly challenges of life

Many shared how they were learning things at present that may not be of use in their current situation but they felt that the future would incorporate use of much of the knowledge they were receiving

Several indicated they loved the personal stories, the resources, the essays in the newsletter and most of all the sharing in the chat because they finally realized they were not alone in what they were going through. Others were going through the same trials and tribulations as well as the honor in their role as caregiver to a loved one


Gail Mitchell
Empowering Caregivers

Ms. Mitchell is the President and Founder of NOFEC. Her full-time caregiving experience began in the early eighties when her husband was diagnosed with cancer. Later on she became the primary caregiver for her father, along with her mother who had become critically ill from burnout prior to her dadís passing. In recent years, she cared for several friends with AIDS while continuing to care for her mother and actively providing support, information, referrals and resources for caregivers.

Prior to founding NOFEC, she created the iVillageHealth Chat: Empowering Caregivers, which she hosted for over 5 years. Within a month of hosting she created Empowering Caregivers: www.care-givers.com in 1999 as a resource for caregivers around the globe. Over three million visitors have frequented the website.

Gail's leadership on the Internet and her success with Empowering Caregivers led her to found National Organization For Empowering Caregivers (NOFEC) INC in 2001.

She presents at national and international care-related conferences and programs and has been a keynote speaker for many programs as well.

Ms Mitchell has assisted thousands of caregivers online and offline in ways to empower themselves in their roles in caring for loved ones.

For a list of client and or her resume, please contact info@nofec.org

Gail's articles have been published in many venues nationally and in Canada.Presently, she is a member of American Society on Aging and National Quality Caregivers Coalition.

E-mail: info@care-givers.com
Web Site: http://www.care-givers.com

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 Communications With Your Loved One: Part 1
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