Those who do not have vasculitis, but still are on the front lines helping the patient battle the disease. Perhaps battle is a strong word, but it serves as an analogy. A battle can be fierce, or it can be quiet. A battle can be won or lost. The long term nature of vasculitis means that no matter how you personally deal with it, eventually it is going to involve a series of battles, and that process can wear you down. So, caregivers need support too. How to recharge those emotional tanks? Strategies for dealing with depression? How to remember to stay healthy? What is Anticipatory Grief and how can you avoid it, or manage it? Vasculitis is unlike some other diseases, in that vasculitis patients can seem perfectly healthy to the unaware observer. This means that the caregiver also must struggle with perception as they try to come to grips with the unseen symptoms of their loved ones condition, even as they . These are only a few issues that caregivers have to deal with. Like the Education page, there will be some pages that provide redundant information, but I prefer to link to them all under the philosophy that my vision can only see my needs. Not knowing your needs, I will provide as many resources as possible to try and guide you to help. I will add more links as I find them. If you know some, please Email the webmaster to let me know about them. Caregiver - Wikipedia, the free encyclopedia - http://en.wikipedia.org/wiki/Voluntary_caregiver - "Carer (UK, NZ, Australian usage) and caregiver (US, Canadian usage) are words normally used to refer to unpaid relatives or friends who support people with disabilities. The words may be prefixed with "Family" "Spousal" or "Child" to distinguish between different care situations. Terms such as "Voluntary caregiver" and "Informal carer" are also used occasionally, but these terms have been criticized by carers as misnomers because they are perceived as belittling the huge impact that caring may have on an individual's life, the lack of realistic alternatives, and the degree of perceived duty of care felt by many relatives." National Alliance for Caregiving - http://www.caregiving.org/ - "Established in 1996, The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations." Rosalynn Carter Institute for Caregiving - http://www.rosalynncarter.org/ - "The Rosalynn Carter Institute for Caregiving (RCI) was established in 1987 on the campus of Georgia Southwestern State University (GSW) in Americus, Georgia. The RCI was formed in honor of former First Lady Rosalynn Carter, an alumna of GSW, to enhance her long-standing commitments to human development and mental health." National Family Caregivers Association - http://www.thefamilycaregiver.org/about_nfca/ - "The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being. " The National Family Caregiver Support Program - http://www.aoa.gov/prof/aoaprog/caregiver/caregiver.aspx - [This page is from the Administration on Aging, but still contains many useful tips. -- JWC] Caring Today | Practical advice for the family caregiver - http://www.caringtoday.com/ - "Caring Today is the leading provider of practical advice and knowledge for family caregivers. Since 2004, Caring Today has addressed the needs of America's 50 million caregivers with expertise, understanding and answers, through its quarterly national magazine and this website, as well as future e-newsletters and custom-publishing projects." The Thoughtful Caregiver - http://thoughtful-caregiver.com/ - "These writings are designed especially for caregivers, past, present, and future. Our intended audience is family members, friends, and volunteers who provide care for the ill, the struggling, the incapacitated, and the dying. This care may take place in a home or an institution. It is hoped that professional caregivers will also find wisdom and encouragement here, even if certain entries address the needs specific to lay caregivers." Family Caregiving 101 - http://www.familycaregiving101.org/ - "Welcome to the Family Caregiving 101 Web site. If you're caring for a loved one who is ill or disabled, this site was created for you. It's a great place to find assistance, answers, new ideas and helpful advice — for you and your loved one. " |