Support for Patients, Family Members, and Caregivers
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Getting Help From Outside Sources

There’s no doubt that being a caregiver to a mesothelioma patient is tough work and it sometimes can get overwhelming. It takes all of your emotional and physical strength to be the nurse, friend and, sometimes, spouse to your loved one. Sometimes you have to ask for help.

While you may feel defeated or let down by asking for help, you should understand that getting help from outside sources doesn’t mean you let your loved one down or you’ve failed at your job. It’s simply asking for help. Caring for someone with such a rare and debilitating disease can be draining.

Help From Outside

One of the primary rules of caregiving is not doing everything on your own. There are plenty of organizations, both local nonprofits and national businesses, that specialize in helping both the carer and the patient:

Home HealthCare

If what you need is a helping hand during your caregiving activities, you need someone who can do the work you can’t do:

  • In-Home Care -- This is typically an unlicensed worker who provides in-home services, including companionship, household chores and assistance performing everyday activities.
  • Home Health Care Aide -- This is a licensed aide or nurse, working under the supervision of a medical professional, who tends to a wide range of medical services, including nursing and physical therapy in the home.

Hospice

This program is designed to help those who typically have six months or less to live. Hospice care can be provided in the home with a hospice nurse visiting on a daily basis or a hospice facility, depending on your location. The goal of hospice is to improve the quality of life through pain management and emotional support.

Nursing Homes

Also known as skilled nursing facilities (SNFs), these types of facilities help both the caregiver and the patient. These facilities provide nursing services 24 hours a day along with help with self-care needs.

Financial Assistance for Caregivers and Patients

According to AARP, up to 40 percent of caregivers must reduce their work hours or quit their jobs to work as caregivers. At the same time, out-of-pocket costs averaged more than $5,500 a year in 2007.

In addition to seeking out help with the everyday duties of caregiving, many caregivers need financial assistance to pay for it all. There are several programs that can help:

Federal benefits

Many states offer programs that use a Medicaid waiver to pay family caregivers for services, however this is only valid for the patient whose income is low enough to qualify for Medicaid. Eligibility rules vary from state-to-state and have been the focus of budget cutbacks.

Insurance

Some long-term insurance policies offer cash benefits to policyholders who spend money monthly on in-home assistance.

Private Pay

Through a caregiver agreement, the caregiver and patient enter into a legal agreement for caregiving. While a legal agreement may seem heavy-handed, it allows the relationship to be clear for tax purposes. This is especially helpful if the patient is trying to qualify for Medicaid.

Sources:

  1. Family Caregiver Alliance - National Center on Caregiving. Frequently Asked Questions. Retrieve from http://caregiver.org/caregiver/jsp/fcn_content_node.jsp?nodeid=2085#quest2
  2. Centers for Disease Control (CDC). Family Caregiving: The Facts. Retrieved from http://www.cdc.gov/aging/caregiving/facts.htm
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