Caregivers Matter.
Those who are caregivers, those who have been and those who will be need to change the conversation around what it means to take care of someone who is sick. It’s not just that professional and personal demands become harder to manage, it’s that day-in and day-out, we take on responsibility for someone else’s healthcare.
The first problem is that caregivers are not seen as part of the healthcare system. We are just a person there when an aide arrives or a relative or friend handling grocery shopping or future funeral arrangements. There is no weight given to this temporary role in one’s life because it is just that: temporary. However, the impact that it has on one’s life is not, nor are the vital services we are providing to hospitals, doctors, nurses and state healthcare systems.
Caregivers are - and have been - part of the infrastructure of illness, death and dying yet we are not counted as such. In fact, we are seen more as “in the way” - an afterthought check-and-balance on an aide or making sure that the nurse practitioner prescribed all of the necessary medications.
That must change. Because when an aide arrives to relieve the caretaker of duties for a period of time, always on our minds are the physical and mental well-being of the patient.
Below, and throughout this site, Caregivers United for Equity lays out the issues at hand and potential solutions.
Your financial support can help us win the day and give caregivers a seat at the table.
Empowering NY Caregivers
The Situation at Hand
Many people put their homes and other assets into a trust so that they can die at home without the fear of losing it - and so that its assets are protected when debt collectors come after estates.
In exchange, these trusts create binding situations guaranteeing inheritances, oftentimes decades before one dies regardless of how circumstances may change.
And, something that could change with time: who shows up when the chips are down. Who will live close enough when that time comes? Who can I rely on? What if the person who ends up taking care of me isn't who I thought when I signed an irrevocable trust?
We need to rethink how we govern in this area.
What's involved for the caregiver
Caregiving is a thankless job. Those doing it often see their lives stop as they know it. Their personal relationships suffer. Their careers suffer. Their mental and physical health suffers. Sure, there’s the option of some compensation via Medicaid, if the patient is eligible, but that’s only if the caregiver isn’t “conflicted” by also being the dying person’s health care proxy.
A Necessary Conversation
The problem? The compensation from Medicaid doesn’t amount to much and usually the caregiver happens to also be, yes, the health care proxy. This means that they often encounter severe financial hardship by being the primary caretaker of someone.
What happens when these responsibilities and the impacts of caregiving disproportionately fall on one or few? Other beneficiaries may feel the trust ensures their inheritance so they don’t need to step up. Of course the elderly and dying realize this, but currently there’s nothing they can do about it unless they seek to change a revocable trust. That's expensive and stressful.
Taking away choices of caregivers and patients seems bizarre, especially when it comes to how to allocate their assets. It is the antithesis of American values. So let's provide some common sense options.
We are beginning a long overdue and complicated conversation that addresses our aging population and hardship despite benefits of the Family and Medical Leave Act.
