Support for Patients, Family Members, and Caregivers
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Helping Your Loved One

Becoming a caregiver is a huge responsibility. Not only are you a home health aide and companion, you are a problem solver, a health-care resource, a medical technician, a family liaison and an overall cheerleader. It's a job that can be overwhelming at times but satisfying.

Helping your loved one by becoming a caregiver does not come easy to many people. You shouldn't expect to know all the necessary information immediately. Instead, there is a learning curve.

Building Your Caregiving Skills

After your loved one is diagnosed with mesothelioma, it's likely that both of you will have scores of questions. For the mesothelioma victim, those questions will likely focus on the medical and technical aspects of the disease. They'll probably want to know more information about the kind of mesothelioma diagnosed and the treatment options. They'll be focusing on finding the best doctor or treatment facility and looking for clinical trials. There is more help available to a caregiver than initially meets the eye.

If you feel worried, alone and scared about being a caregiver, please know that you are not alone. There is more to being a caregiver than meets the eye.

Finding Support For Your New Role

There are several readily available resources that can help build your caregiving confidence and skills:

  • Useful Publications -- While there are many useful books on the market to help caregivers, two in particular are beneficial. Lean On Me - Cancer Through a Carer's Eyes by Lorraine Kember is a first-hand account of a mesothelioma caregiver's journey. It offers inspiration and a boost of confidence that many caregivers need at this time of crisis. At the same time, 100 Questions & Answer about Mesothelioma, by Dr. Harvey Pass will answer all of those technical questions you have about the disease process.
  • Local Training and Workshops -- Local cancer and mesothelioma support groups across the United States can help caregivers, both new and experienced, to hone caregiving skills. These training groups and workshops not only give caregivers the tools they need but also much-needed respite from the home.
  • Online Support -- Homebound caregivers can easily access dozens of support groups on the Internet. These groups are usually comprised of like-minded individuals going through the same thing. Online support is helpful for those who have a difficult time leaving the home for in-person support groups.
  • Getting Organized

    Organization is the key to being a great caregiver. This not only allows the caregiver and the patient to know what is on the schedule and what comes next, but also allows for fill-in caregivers to take over with ease. This way the main caregiver can take much-needed respite time without worry.

    The following are some keys to getting organized:

    Level of Care Binder

    Document all of the patient's personal medical history in an easy to read format and put it in an easily accessible binder. This way, everyone understands the level of care. This should include current prescription medications, over-the-counter medications, current immunizations and a detailed family medical history.

    Care Plan

    Develop a caregiving plan, which will be the master chart to help everyone stay on the same page. This should include an hour-by-hour accounting of which medications should be taken, meal times and other important daily events.

    Provider List

    Make a detailed list of health care providers complete with address and telephone numbers. This list should start off with the primary doctor, which is typically the oncologist. Include all physicians including the dentist and eye doctor, if applicable.

    Health Insurance List

    Make a list of all the health insurance information, including the policy number, member identification number and the website addresses. Be sure to include supplemental insurance information as well.

    Refrigerator List

    Make a list you can hang on the refrigerator for all to see. This list should include the names and phone numbers of local neighbors and friends who are willing to help in an emergency, those who hold spare house keys and all of the patient's doctors and non-emergency numbers for the police and fire department. This list should also include phone numbers for household providers such as electricians, air-conditioning repair services and plumbers.

    Delegating Responsibility

    It is vital for any caregiver to understand that delegating responsibility is the key to success. Caregiver burnout, which is the emotional, mental and physical exhaustion that comes with caregiving, is a very real and dangerous situation. It typically happens when the caregiver takes on too much responsibility and doesn't get needed help.

    By being organized, caregivers are able to be better at their jobs. They can take much-needed breaks during caregiving to mentally and physically recharge. Many caregivers put unreasonable demands on themselves and expect too much from themselves. This may actually make the caregivers sick and unable to care for anyone.

    Sources:

    1. AARP. Dealing With Pain: How to Help Your Loved One. Retrieved from http://www.aarp.org/relationships/caregiving-resource-center/info-08-2010/elc_how_to_help_your_loved_one_with_pain.html
    2. Family Caregiver Alliance. First Steps for New Caregivers. Retrieved from http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2048#article4
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