Friday, October 28, 2016

What Family Caregivers Need - A Response to Caring Across Generations

Josephine Kalipeni, Director of Policy and Partnerships for Caring Across Generations recently asked family caregivers to share their thoughts on what would make their caregiving life easier.  In her letter to caregivers, she wrote:

“If you employ a caregiver, what would make that experience better? If you’re caring for your family, is there anything (or things) that could make the hard parts easier to manage?

The thing is, while it often feels extremely isolating, caregivers are not alone. And with so many Americans turning 65 every day, the challenges many of us face in our daily lives are replicated in every corner of this country, at an accelerating pace.

We are going to provide our recommendations to the next president-elect as soon as possible after Election Day, November 8.  So we need to know what you want and need today.”

While  my journey as a family caregiver ended in 2012, I shared a few of my thoughts in the hope that they may benefit current and future caregivers.  The following, with a few minor edits, was my reply. I still haven't mastered writing on a phone.


The following are just a few of the things that would have made my caregiving life easier:

-- uniformity in the laws pertaining to legal and healthcare Power of Attorneys across all 50 states and territories.  Documents executed in one state need to be honored in all states because family caregivers often need to handle legal and healthcare issues with institutions which are based in states other than the one in which their loved one resides;

--insurance companies should cover the expense for home health aides (CNAs and registered home care aides) in the same manner in which they cover other rehabilitative and habilitative therapists, such as speech and occupational therapists;

-- insurance companies should cover the expense of transporting home bound patients via ambulance to and from doctor appointments and medical facilities if the person's medical condition necessitates it;

--there should be a tax exemption for full time family caregivers if they are under retirement age and need to withdraw their 401K or IRA savings in order to cover their own living expenses while caregiving. Currently there is a 20% penalty for early withdrawal;

--full time family caregivers should be eligible to receive compensation either via a yearly tax credit similar to the "economic stimulus" tax credit or be eligible to begin receiving their Social Security benefit;

--- there should be additional in-home training for family caregivers who need to perform medical tasks such as those required for caring for persons with advanced dementia and Alzheimer's;

-- family caregivers who leave full-time positions should be eligible to draw unemployment compensation; and,

--- there should be more emotional and psychological counseling available to family caregivers to assist them with the stresses of caregiving.

Like most family caregivers, I did not choose to care for a family member with the hopes of being compensated or with the expectation that others would share the responsibility for my mother's care.  I still view my years as a caregiver as a labor of love.  However,  like all family caregivers I found that in addition to providing love and care to my parent, I was faced with challenges that at times were overwhelming.

Thank you for asking this question and allowing me to share my thoughts.  And thank you for your tireless efforts advocating for caregivers.

Well those were just a few of my thoughts.  If you are a family caregiver there is still time for you to share yours. Visit: