When it comes to caring for a loved one – whether diagnosed with a disease, disorder or living with a disability – 65 million Americans today are performing as the unpaid, undervalued, unsung heroes of our long-term care system. Most caregivers – 66 percent of whom are women and most who are baby boomers – set high expectations for themselves as caregivers. As we celebrate National Family Caregiver Month this November, I wondered what expectations caregivers should have to receive the support they need.
With that premise in mind, I present to you my version of the Caregiver Bill of Rights. In a few days, we head to the polls for Election Day. The freedom to vote in our democracy is a guaranteed right many of us take for granted. We also take caregivers for granted and it is for this reason that I hope many of the following rights will become the standard for all caregivers in the near future.
1. The right to have balance between caring for my loved one and caring for myself.
This includes asking for extra help when needed (even if my loved one objects), maintaining routines and plans as best I can so as to not lose myself while on this caregiving journey. It also includes accepting help provided to me by family and friends so I do not feel like I am all alone.
2. The right to receive a financial break or tax credit for caring full-time for my loved one.
In the same way Americans are granted tax credits for dependent children, I should be granted tax credits for caring for parents who are dependent on me for their constant care.
3. The right to work for an employer that understands caregivers.
As part an aging workforce, more and more of us will face the life event of caregiving while on the job. I have the right to work for an employer that will provide me with the employee assistance to maintain my work performance and productivity, my own health and wellness, and support for my loved one without fear of reprisal or dismissal.
4. The right to expect the nation’s legislators to acknowledge the valuable service I perform and to enact policies that not only support those with the illness or disability but support their family caregivers as well.
This includes acknowledging my role as a first responder in the long-term-care crisis in this country. According to AARP family caregivers represent $450 billion in societal value in the unpaid care we provide and we need to be recognized for this collective and individual effort.
5. The right to expect my loved one’s medical advisors and health care professionals will recognize my critical role as part of the primary and long-term care team.
I should expect these health care professionals will communicate with me without violating my loved one’s privacy rights so I can best care for my loved one. Especially when it comes to transitions of care, I become a critical player in helping my loved one – the patient – transition from hospital to home or other facility and to maintain their health, medication compliance and other aspects of care that will decrease hospital readmissions.
6. The right to easily find resources that will help me in my caregiving journey.
Whether these services are provided by public or private organizations, every caregiver should know where to turn to get the help and education they need at whatever stage of caregiving they are encountering.
7. The right to not take on the financial burden of caregiving all by myself.
I should not have to put my financial future at risk to care for my loved one today.
8. The right to make choices that will help me manage my stress without feeling guilt or depression that I am focusing on myself at times rather than solely on my loved one.
This includes the right to take a break – for a few minutes or a few days. The need to seek respite in my caregiving duties is essential to my ability to continue caring for my loved one long-term.
9. The right to expect my close circle of friends and family to understand my caregiving role and to support me in any way they can.
This includes the right to expect I can reach out to them so I do not feel alone. Also that my spouse, my adult children, my siblings, my co-workers and my close friends will lift me up when I am down and help me keep going on this caregiving journey.
10. The right to expect “life, liberty and the pursuit of happiness” even while so much of my time, energy and attention is going to care for my loved one.