Caregiving > Long Distance Caregiving

When someone is diagnosed with mesothelioma, it will dramatically impact their entire family, including the lives of adult children who have moved great distances from their parents’ home. Since children are often involved in caregiving arrangements, it is natural that they will be making changes in their lives which may not come easily. They are, however, vital parts of the health care team, and may participate in offering minimal assistance to complete care.

It is not uncommon for faraway children to encounter feelings of guilt because they are not able to make frequent visits, or are overwhelmed by the challenges of arranging for services long distance, and while the realities of long distance caregiving can be difficult and time-consuming, there are several steps that can be taken to make it more manageable.

• Arrange a family meeting, either in person, or with a conference call, and determine what type of help is necessary. If several siblings will be involved, make a list of questions and concerns to be discussed and how tasks will be divided. In most cases, children who live within a reasonable distance would be most likely to help by driving to medical appointments, shopping for groceries and assisting with housekeeping. More involved tasks may include arranging long-term medical care and/or managing financial or legal affairs.
• Collect personal information such as birth certificates, Social Security numbers, Medicare numbers, insurance policy numbers, medications the patient may be taking, names and contact numbers of primary and secondary physicians, attorneys, and additional family members or neighbors who can be called upon to provide assistance, if needed. Once gathered, this information should be kept in a place where all parties know it can be easily accessed. If possible, obtain a copy of a local phone book.
• Discuss legal and financial issues. Having the proper paperwork in order will prevent family disagreements down the road and will protect family resources. Know where all legal, financial and insurance documents are kept. Identify bank accounts, titles, sources of income and obligation. Review all documents for accuracy and update them, if necessary. Make sure documents are stored in a safety deposit or fireproof box, and make duplicate copies for extra security.
• When you make a personal visit, assess the situation by looking for health or safety problems which may need attention. Make a list of local agencies who offer services applicable to anticipated needs.
• Be sensitive to your parents’ needs and views. Be sure they understand the value of available services and support groups, and make sure they understand what each agency has to offer. Sometimes it may be helpful to have someone else, such as a doctor or member of the clergy recommend the service to be used.
• Take care of your own personal needs. Accept that it may not be possible to be everything to everyone. Ask for help when you need it, and most importantly, give yourself credit for doing the best you can.