Exhaustion, Paperwork, and Emotional Toll

[In order to provide accessible content, here is a full transcript of this interview]

Friends,

The topic this week is caregiving and caregivers – an issue that is so much larger, so much more devastating, and so much more in need of reform than most of us are aware. There are over 50 million family caregivers in the US, and they suffer financially, emotionally, psychologically and physically with negative consequences that persist for the rest of their lives. The solution, according to our expert guest, comes down to funding and policy: to provide the funding through Medicaid’s Long-term services and supports (LTSS) and remove the stringent requirements that grossly limit appropriate access to those funds. 

During this episode, we’ll dive into the underlying systemic social biases around the elderly and the disabled – a bias that is preventing the policy and funding changes needed to alleviate the heartbreaking suffering of caregivers and their loved ones. In this interview, Professor Laura Mauldin will distill the learnings from her research, as well as from her own personal experience in caregiving.  She also provides recommendations for what needs to be done to remedy the situation.

Laura Mauldin PhD is a writer and scholar based in Brooklyn, New York. She’s currently an associate professor at the University of Connecticut. Laura’s research focuses on disability care and technology. Her first book, Made to Hear: Cochlear Implants and Raising Deaf Children, documents the structure and culture of the systems we’ve designed to try to make deaf kids hear. Laura is currently writing a book – scheduled to be published in 2025 –  on spousal caregiving which weaves together research, memoir and cultural commentary. 

In this interview, we’ll discover:

1. The major reasons for why the number of family caregivers in the US is rapidly growing. 
2. The various traumas that are inflicted upon caregivers, something that most of us who have not lived this experience are completely unaware of. 
3. An insidious systemic bias in our society toward the disabled, which Professor Mauldin refers to as ‘ableism’.   
4. An explanation of the institutional bias built into Medicaid policy, which greatly limits the access to paid caregiving for over 90% of Americans who want and need it. 
5. How the formal healthcare system – insurance companies, pharmaceutical companies, device manufacturers, and hospital systems – benefits financially at the emotional, physical and financial expense of caregivers. Something I had never considered.  
6. The very specific policies and funding that we need to change in order to remedy this situation and provide the support that family caregivers require.
   

Professor Mauldin is a remarkable scholar.  As a highly trained qualitative researcher, she intentionally decided not to take a neutral stance in her research on caregiving and caregivers. Instead, she infused her work with her own lived experience of being a caregiver.  She infused it with a studied understanding of the political and social biases that are root causes for why the situation isn’t being addressed and remedied. She infused it with the power of story and not just with the power of statistics.

In this interview, Laura Mauldin shares her own story of caregiving and reveals what most of us have little to no understanding of – a world that is so radically different. She talks about the daily “terror” and “exhaustion”, the “isolation” and a sense of being “invisible”.  She also describes a profound “demotion” in her relationship with her partner – a shift from being a “lover” to being a “life support system”. The stories she shares, her own as well as those from the dozens of families she studied, are heartbreaking and informing. 

Laura points out that the suffering of caregivers isn’t limited to their emotional, psychological and physical health.  It also has a profound 3-part impact on their financial health. First, caregivers are largely unpaid for this in this country. Only about 7% of Americans can afford private pay care-giving, which means that well over 90% of caregiving goes unpaid for in the US. Second, if family caregivers have a job, they often see a marked decrease in their earned salaries, due to the time they must spend caregiving. Third, caregivers suffer a marked loss in their retirement savings, in part, as a result of the compounded losses in their job salary over the course of years. 

One of the most enlightening parts of the dialogue was Professor Mauldin’s articulation of ‘ableism’, which I had never heard of before. I found it to be inspiring and liberating – yes, liberating. This sense of liberation comes from her shining a light on a part of our lives that is hidden from view, a part of our lives that has been cloaked in shame and bias, and a part of our life in which we desperately seek to maintain some semblance of control and independent living. She explains how our culture “devalues disabled people, disabled bodies, and people who are viewed as unproductive.” And she connects this ubiquitous indoctrination of ‘able-ism’ to the ‘institutional bias’ policies embedded in Medicaid, and then directly to the suffering of caregivers and their families. She points out how these biases embedded into policy and payment prevent us from maintaining our independence as we age, or as we become infirm or disabled.  

The sense of liberation stems from two things. First, just naming the indoctrinating bias that we’ve all been engulfed in removes, or at least softens, some of the stigma and fear. It opens up the possibility for new understandings and new ways of relating to ourselves, to our bodies, to one another, and especially to those whom we love dearly. Second, once we name it, we can reframe the situation, pull back the cloak of silence, and shine a light on these hidden biases, stigmas and fears. We can examine them in the light of day. We can talk about them. We can actually begin to collectively do something about them. Beliefs and biases hidden are unassailable. Fears and stigmas unspoken fester in our individual and collective consciousness. To that point, Lauren illustrates this in a story she shares about her personal experience as a caregiver – bringing a group of physicians together around a table – and hearing nothing but soul crushing silence and inaction. Revealing the truth is the first step toward healing. It is a gift – a gift that Professor Mauldin shares generously. But, as she points out, taking action is the next step. What I learned is that we need more activism around changing Medicaid policies and funding. We need to very specifically change the policies and funding of the “long term services and supports”, and the “home and community-based services”.  

Professor Mauldin’s contribution to our understanding of caregiving and caregivers is revealing and moving. She connects the dots on the issue of caregiving in a way that I’ve never before experienced. I had the opportunity to listen to her present in an online forum and was absolutely mesmerized by her eloquence, her intellectual integrity, her scholarly brilliance, her honesty and her courage in discussing an issue that is so very personal to her. I believe her upcoming book, which will be published by Ecco Press in early 2025, is going to be a landmark contribution to this important issue. I believe that Professor Mauldin should be listened to and her recommendations heeded.

[In order to provide accessible content, here is a full transcript of this interview]

Until next time, be well.
Zeev Neuwirth, MD