Browsing Posts in Caregivers

The National Alliance for Caregiving is dedicated to providing support to family caregivers and the professionals who help them and to increasing public awareness of issues facing family caregivers.


Strength for is a place for caregivers.

It is estimated that more than 50 million Americans now provide care to an adult relative or friend. Despite their growing numbers and the many services they provide, these family caregivers are one of the most overlooked groups within the healthcare system. As a result, many caregivers simply do not know where to turn to find basic information about their new responsibilities, either on- or offline.

Many Web sites are designed for either clinicians or patients and not for the growing army of family caregivers who are often instrumental in making the healthcare decisions for the people they love. Caregivers need extensive information about the care of their loved one, including that person’s medical conditions, daily care activities such as bathing and grooming, insurance and legal issues, types of outside housing facilities including adult day care, and more. Caregivers also need information to help them reduce their stress, take care of themselves, and balance work and other family responsibilities.

To address this gap, Johnson & Johnson Consumer Products Company joined with the nation’s leading caregiving organizations, academic centers and foundations to create, a comprehensive online resource and community for family caregivers. The site combines original content with the best of caregiving resources currently available.

Developed with best-in-class online knowledge, includes features such as an ability to enlarge the text and is intuitively arranged in six main sections:

• Caregiver Manual – articles devoted to caregivers’ health, emotional, and personal needs. This includes information that helps caregivers deal with stress, healthy eating, and balancing work, family and caregiving. In addition, this section helps caregivers learn to relax and take time off.
• Community – message boards provide 24/7 support. Caregivers can tell their personal stories and receive help and tips from other caregivers about the issues they face.
• Health Conditions – explains diseases/conditions affecting loved ones so caregivers will have a better understanding of these ailments. This section is searchable by disease/condition and by symptoms for easy reference.
• Daily Care – offers practical, day-to-day information and advice about caring for a loved one, from brushing someone’s teeth, to proper cleansing and bathing, to taking the car keys away.
• Housing – includes information about different types of housing options and a friendly comparison chart along with practical tips and advice about how to choose among different housing options.
• Money & Insurance – contains practical information, written in a simple and friendly way, about insurance, budgeting, eldercare law, and other topics related to caregiving.

Along with these sections, offers a monthly newsletter for caregivers with updates about new site content and helpful tips and inspiring thoughts. In the months to come, the Web site will also include articles translated into Spanish, live message board moderators, videos of caregivers offering helpful tips, and training content provided by nurses, to assist caregivers with activities of daily living.

Organizations participating in the development of include: AARP; Caregiver Media Group; Caring Today Magazine; Charles Inlander Organization, Inc.; Faith in Action (part of the Robert Wood Johnson Foundation); Family Caregiver Alliance;; Holistic Business Group; John A. Hartford Foundation Institute for Geriatric Nursing; The Johnson & Johnson Campaign for Nursing’s Future; Johnson & Johnson/Rosalynn Carter Institute Caregivers Program;; Lluminari, Inc.; Medical Bridges; National Alliance for Caregiving; National Family Caregivers Association; National Hospice and Palliative Care Organization; Nell Hodgson Woodruff School of Nursing of Emory University; Wellspouse Association; and Ziva Continuum.

Isn’t it funny that everyone always asks us how our loved one is doing. It’s the rare one who asks about our welfare, as if our concerns, stresses, dilemmas, emotions and frustrations are invisible. “If they only knew,” we often mumble to ourselves.

While the plight of the caregiver is finally beginning to be understood by business and industry (with some more progressive companies instituting ‘parent care’ programs, supports, and time off), and public awareness of caregivers is growing (caregiver support groups, caregiver information, and media coverage), what few know or begin to comprehend is the ‘armor of advocacy’ and its weight that caregivers MUST learn to wear.

Without a word more, seasoned caregivers already know of which I speak…

Read More .

Caring Connections

Caring Connections is a program of the National Hospice and Palliative Care Organization (NHPCO), and is a national consumer and community engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation.

Caring for a family member or friend is not easy, nor is it something most of us are prepared to do. Like most people, you may have questions about your family member or friend’s illness or condition. If you have a job and are juggling several responsibilities or if your family member or friend requires a lot of assistance, you may need help providing care for them.

Many caregivers feel alone, helpless, confused, unprepared and unable to provide for the needs of their family member or friend. Learning about being a caregiver may help you feel supported and more comfortable with your role. This section contains information and resources to help you learn more about being a caregiver and where to find additional help on the Internet and in your community.

Caregiving.Com is a site with information and blogs for caregivers.

Denise operates The Center for Family Caregivers and owns and operates Tad Publishing Co., both based in Park Ridge, Ill. Through her organizations, Denise helps persons who care for an aging relative. Through Tad Publishing Co., Denise publishes; authors books and manual for family caregivers and health care professionals; and speaks about the caregiving experience to community and employer groups.

In addition, she is Executive Director and Founder, The Center for Family Caregivers. The Center is a non-profit organization dedicated to helping persons who care for chronically ill or disabled family members.

New Caregiver Information

Family Caregiver Alliance (FCA) is offering a fact sheet for caregivers at .

FYI: Economists have estimated the value of “free” services offered by caregivers in the last four years at $306 billion. (by Jonathan Bitz for Stroke Smart Magazine, March/April 2007 issue.

A Caregiver’s Advice

An article by Stroke Connection Magazine.

Of course, like all caregivers, Charlotte Layton had her on experience of stroke survival, which she sometimes shares during interviews. Her advice to caregivers is to get information. “Learn all you can to understand your new situation in life. Deal with each day as it comes. Sometimes it may be hour by hour. Remember, you are not alone and your situation is not unique. There are people who want to help. Call on them, whether it’s healthcare professionals, friends or family. Prayer helps too. And start a journal as soon as possible!”

She suggests six ways to use a journal:
1. Write down the time and dates of doctor visits. A written record will provide you with some organization for your questions and concerns. Doctors will ask if you have any questions, so be prepared – keep your questions in your journal and make notes of how the doctor answered.
2. A journal also helps you keep up with important information, like medical descriptions and prognosis, as well as notes to yourself. It becomes an ongoing to-do list.
3. Keep billing updates in the journal where you can easily review them. This provides you with additional information as well as helps you stay on top of the financial side of the hospitalization.
4. Make notes of meetings with the benefits/insurance specialists. Many of the decisions about care are made here, so it helps to learn the terminology of the condition.
5. Use your journal to keep a record of the calls, cards and visits you have received. This is helpful when sending updates to family and friends. E-mailing progress reports in a group e-mail will save repeating updates by phone.
6. Record any and all improvements in your survivor’s condition. This is a good reminder to both patient and caregiver of progress, and it can serve as motivation when progress seems to have reached a plateau. It can also come in handy when talking to your insurance company about continuing therapy.

Subscribe to this free publication by clicking here .

ElderCare Online

ElderCare Online is a site for people caring for an aging spouse, parent, relative, or neighbor. Topics include home care & independent living; insurance, legal & financial matters, residential options, and more.

Whether you are caring for a spouse, parent, relative or neighbor, they are committed to providing an online community where supportive peers and professionals help you improve quality of life for yourself and your elder.

The role of the caregiver is difficult to understand unless you have had a similar experience. To care for a loved one while mourning the loss of your life with that person is extremely stressful. Add to that insurance and medical bills, reduced income if the stroke survivor is the primary income earner, complicated care procedures, and the tension of accepting a job you didn’t ask for, didn’t train for, and really didn’t want, and you have a situation that is overwhelming.

The American Stroke Foundation has developed a Bill of Rights to help encourage caregivers to be a constant support to their loved one.

I have the right . . .

To take care of myself. This is not an act of selfishness. It will give me the capacity to take better care of my relative.

To seek help from others even though my relative may object. I recognize the limits of my endurance and strength.

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

To get angry, be depressed and express other difficult feelings occasionally. To reject any attempt by my relative (either conscious or unconscious) to manipulate me through guilt, anger or depression.

To receive consideration, affection, forgiveness and acceptance for what I do from my loved one for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my full-time help. To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.

To ______________________________________________.

Add your own statements of rights to this life. Read the list to yourself every day

This articles was given by The American Stroke Foundation

The Well Spouse Foundation

The Well Spouse Foundation is a national, not for profit membership organization giving support to wives, husbands, and partners of the chronically ill and/or disabled.