". . . Rob, I am dedicating this very special part of my Webpage to you for all you have done and will do for me to make my life happy and fulfilled. You are my rock, my inspiration, my love. To you and all other family caregivers I say, thank you for being there for all of us. . . always."

The people who take care of (sarcoidosis) patients are called caregivers or CARERS. The term, caregivers, usually brings to mind the professional caregivers who are paid for their work, while the term, carers, usually refers to the unpaid family caregivers who number in the thousands, or even millions, around the world. Carers are ordinary people like you and me, but carers are also very special people who deserve as much recognition for dealing with sarcoidosis as do the individuals who have to live with it in their bodies every day. Carers may be a partner or spouse. They may be other family members such as parents, siblings, and/or children. They may be close friends who have a special bond with the patient. Or they may be fellow sarcoidians who want to provide support in the form of information about the disease or listening to the patient's fears and feelings. The care given may be in the form of physical aid, or it may be in the more covert form of emotional support. While most sarcoid patients are fully able to care for themselves much of the time, all sarcoid patients need emotional support to deal with the everyday living with this chronic disease.

People caring for sarcoidosis patients require a thorough understanding of the disease and what the patient is experiencing with this erratic illness. Dealing with sarcoidosis is very traumatic for patients, particularly when first diagnosed, and it may initially be difficult for carers to comprehend what is happening. The patient may look healthy and may not be showing any outward signs of illness. The patient may also be experiencing considerable discomfort. Such pain may be difficult for carers to deal with because they do not want to see a loved one suffer.

Whether physical symptoms of illness are present or not, sarcoid patients will require psychological support. Initially, they need help to understand the ramifications of having a chronic disease that may come and go without any warning. They need assistance in adjusting their lifestyles to maintain their health to the greatest degree possible. Newly diagnosed patients will often feel isolation from the rest of the world, anger at the hand fate has dealt them, tremendous fear of the unknown disease and the changes it will bring to their lives. For those who feel ill, there are the physical discomforts as well as accompanying fatigue and depression, which can be overwhelming. Those who are ill must consider the financial aspects of the future, including how they will earn an income and how they will pay the sometimes-staggering medical bills that are possible when one has a chronic, progressive disease. All these aspects--and more--will require a patience and understanding of special proportions for those who will be carers. In addition, the patient and the carers must find a common ground where they can work together to adjust to the often significant changes in their relationships.

Caring for someone who is ill is hard work. Not only will some carers have many nights of interrupted rest, they may find that taking on the responsibility for a loved one means that they never have a moment to themselves. When they are not proceeding with the daily routine of their own lives, they are spending time caring for the loved one. They are constantly striving to understand the symptoms and emotions of the loved one. Carers can become severely stressed and burn out from the emotional and physical burden of the task. They often do not want to ask for help, thinking it is a sign of failure on their part. Therefore, carers need to be educated, not only about the effects of sarcoidosis on their loved one, but also on themselves. They must learn to ask for help, if only in the form of providing them with a few hours to take care of themselves. Providing a break for the carer can give them the time to take an uninterrupted nap, a long walk or relaxing bath. Or they may use the time to find a person with a willing ear with whom they may discuss their fears and apprehensions for their loved one.

Therefore, we must never take carers for granted. We must always include them in any equation for maintaining the health and wellbeing of a sarcoidosis patient. Carers should have ready access to the same resources that the sarcoid patient has, including support group networking. They should not be reluctant to utilize these resources in whatever way they need. The resources can be as helpful to their health and wellbeing as it is to that of the patient.

The Sarcoid Connection, from the Hunter Valley, NSW, Australia to Midcoast ME U.S.A. . . . and Beyond. . ., was born from the belief that sarcoid patients and their carers need a resource to which they can turn for information and support. Whether contact is on a computer, through the postal service, via telephone, or in a local support meeting, it is my desire to help those like me, who have been diagnosed with this baffling disease, or those like my my husband who have the burden of understanding and caring for a sarcoidosis patient.

The Sarcoid Connection is not limited to those in the MidCoast Region of Maine except for the obvious exception of support group meetings that are available only to those in the Bath-Brunswick area because of distance considerations. We welcome all sarcoidosis patients and their carers to participate in any of the forums described on this Website. At the moment we have interested folk in the United States, Canada, United Kingdom/Europe, and Australia, which was my home for two years after my marriage to an Aussie in 1998. I invite you to review the ICQ List and Chat information in order to decide whether you wish to be included in these forums. The information on the Website can also be mailed through the postal service upon request for those who don't have a computer available for their use.

For those of you in Australia, my second home, The Australian Lung Foundation's LungNet has a Carer Resource Centre, which maintains a toll-free telephone number, 1-800-242-636. By contacting this number you will be put in touch with the Carer Resource Centre in your area. Presently 58 of these centres have been established in Australia.

In addition, I have prepared a list of resources that pertain to caregiving. The resources include family caregiver organizations, printed matter about caregiving, links to Web pages and sites of interest to caregivers, where to obtain carer support kits, chatroom location for caregivers, and special upcoming events. All carers are invited to print a hard copy of the resource page to keep for reference purposes.

If you are a sarcoid patient or carer, and would like information and/or support, you may also contact me in any of the following ways:

Chris Townsend, 1380 Main Road, Westport Island ME 04578, USA
Telephone: (207) 882-7099
E-mail: cmtown@excite.com