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Remembering when our parents cared for us, many of us want to care for them. “Free” family caregiving provides 80% of the care our elders need.1 If paid, it could easily run twice what Medicare and Medicaid pay annually for home health and nursing home care combined.

Free family caregiving isn’t really free

But it isn’t really “free.” 67.1% of caregivers work outside the home full time or part-time. Of those who do, 70% of caregivers working outside the home suffer work-related difficulties. Some give up their outside jobs, hurting both their current financial well-being and their own future retirement. Only a few think to have a Family Caregiver Agreement and be employed by a Medicaid-approved home health agency which will manage tax, Medicare and Social Security deductions. Many of our parents cannot afford to pay. A Texas Transfer on Death Deed or “Lady Bird” Deed or even a Transfer on Death Motor Vehicle Title might give some approximate reimbursement. But what about the children who are not caregivers?

The emotional cost of caregiving

There is an emotional as well as a financial cost to caregiving. Providing nearly 24/7 care including increasingly difficult physical assistance and increasingly complex medical interventions takes its toll. An estimated 40-70% of family caregivers have clinically significant symptoms of depression. Between ¼ and ½ are thought to meet the diagnostic criteria for major depression.

Less than 20% of caregivers report receiving any training. It is as though we are expected to know how to manage chronic conditions and serious medical problems by osmosis.

This puts everyone at risk. The seemingly endless stress and lack of support can even lead to neglect and abuse which we never expected ourselves to be capable of.

Planning tips when becoming a family caregiver

If you are considering becoming a caregiver, be clear up front what you can and cannot do – and for how long. Build a team. Work with an elder lawyer, the person whom you will be taking care of, the Area Agency on Aging and a suitable home health care agency to put arrangements and supports in place. Agree on and write down dates and events which would trigger a review to see whether these should be changed. Find in person and online emotional support for you and take time to attend caregiver conferences and meetings of family members focused on specific conditions.

Protect that box of memories. In years to come, you don’t want to be afraid to remember when.

  1. Numbers are from the California Elder Justice Coalition.

Terry Garrett is a member of the National Academy of Elder Law Attorneys and is active in the Texas and Austin Bar Associations. She graduated with honors from Cornell University. She was on the Dean’s List at Wharton Business School. She earned her J.D. at Columbia Law School, receiving the Parker Award and a Mellon Fellowship.

She assists families of people with special needs, people planning for the retirement years and people administering estates.


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