Omega Farm Author Martha McPhee on How the Caregiving Burden Both Hurts & Heals

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“The toll caregiving takes on the caregiver, especially the children of the patient. Watching my mother die inch by inch, even with help, was far more stressful than I allowed.” 

In a mere two sentences, Martha McPhee perfectly captures the draining experience of caring for a parent with dementia — the emotional toll of bearing witness to the steady decline of her mother losing her memory. Through her new memoir Omega Farm, McPhee keenly articulates this struggle that so many women share but often goes unspoken and unsupported: each year, more than 11 million Americans look after family or friends with forms of dementia, according to the Alzheimer’s Association. More than 75% of these caregivers are women, and they spend the equivalent number of hours a week providing care as people spend at a full-time job. Many of these women, like McPhee, are working and raising children at the same time.

McPhee’s story is particularly riveting, as she moves back to her family home — a sprawling, ramshackle farm in New Jersey — when the pandemic begins in 2020 along with her husband, two teenage children, and a caregiver named Dayana. Her mother, a prolific photographer who had 5 daughters and 5 stepchildren, has begun her descent into dementia. For the next year, as she cares for her increasingly sick mom, McPhee confronts the trauma of her childhood that she can no longer ignore: her relationship with her charismatic but abusive stepdad, and her mom’s complicity. As she unpacks her complicated family history, her own sanity also begins to unravel. 

Ultimately, Omega Farm is about the inevitable, heartbreaking burnout of caring for a parent while grappling with the complexities of the mother-daughter relationship. We spoke to McPhee about what she’s learned while coping with the stress of caregiving, and how returning home helped her process a chaotic upbringing and reshaped her own identity as a mother. She also shared with Flow some never-before-seen photographs her mother, Pryde Brown, took of their family. 

In the beginning, you and your sisters had a conversation about whether your mom had dementia or Alzheimer’s. Was that a helpful distinction to make and did it impact your care for her?

“Dementia is the umbrella and there are various kinds underneath, including Alzheimers. We will never know for sure what my mom has unless we do a brain scan. I think a lot of [how we talked about it in the beginning] was about us living in some realms of denial — saying, maybe it’s not dementia, maybe it’s forgetfulness. I feel it was more avoidant than trying to come up with a practical course. But along the way in these conversations, my sisters and I tried to figure out, how do we care for her? We wanted to keep her in her home because sending her to a center would be very expensive — we would have run out of money and she would have had to come to one of our homes. We felt like we had a little more control [if we kept her at the farm.]”

Was there anything that you did to take care of your mom that was helpful with her dementia?

“It’s a complicated answer because dementia is a brutal illness and it can be so long — it’s like Benjamin Button, living in reverse. In terms of what’s helped, it’s been such an epic journey: In the beginning, before she left her photo studio, I would have clients come and she would take their picture. When she stopped taking photos in 2015, she found new things. She loved to clean and sweep and color — that kept her very occupied along with listening to music. She would have stacks of napkins that she would iron, a lot of people would come and visit her; that was helpful. It became trickier once she stopped coloring and sweeping. She would wander around the house. It was very difficult and frustrating, you could get really impatient. I understand and I do forgive myself for that. [As time passed], she got closer to the stage where she was completely helpless like a newborn — all I want to do is make her comfortable so she’s not in a wet diaper and she’s clean and fed. I can hold her hand or sit there and look in her eyes and kiss her — or get her a massage.”

Your mother understandably had a defiant, angry reaction to her circumstances — she tried to run away several times. What helped in these instances? 

“You can read specific books and sites about this, but it’s lived experiences or listening to other people who have been through this that’s helpful. In those challenging moments, it helped to understand her pattern: there’s a term called ‘sundowning’ from 4 to 7pm. Those were the challenging hours we had to be prepared for when things would happen. One of the caregivers would take her for a walk and my mother would go rogue and we couldn’t get back. I had to tell her to go with her phone so she could call me and to not be afraid to pull her tight. It’s about awareness, listening to people who have been there before. Take her for a walk at 2pm instead of during that window.”

You had your own angry response to dementia, which is common. You are able to unleash it — to a certain extent — in the book. How have you learned to express it now? 

“Women are taught to keep anger in. We’re taught to keep in quite a lot — things that have happened become internalized secrets. [For me], it became this anger: the book [allowed me] to be really honest about it, to not gloss over it. There are all sorts of levels of anger — the frustration with [my mom’s] dementia or my kids. So much anger came from holding a secret, and I felt released when I was no longer holding it. Now I don’t get as angry. I thought hard about who I am and what I need and what happened and how it’s okay to be kinder to myself; that has allowed me to feel more relaxed.”

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You talk about how your daughter supported you while you were living at the farm. Can you speak to how this uniquely helped you care for your mom? 

“For many good reasons, people tend to park the elderly in homes. That’s not what we did — and I’m glad because this next generation has gotten to see up close the life cycle. It’s always been important to me that my kids are aware of the process — death and funerals. I took my daughter, Olivia, to a wake when she was 6. When my husband or Dayana was away, it was Livia and me [taking care of my mom.] If my mother has helped make me into a writer, she’s helped make Livia someone who wants to go into public health because of watching her grandmother. She loves her very much, and to give her comfort and love was a reward in itself — that’s an amazing lesson. If we can normalize it, the fear component goes away. It can be integrated into our lives with our children and they can look at it in a healthier way.”

You understandably reached your breaking point caring for your mother. Is there anything you learned from this experience in terms of how to cope? 

“I got very caught up in the swirl, caring for my kids and my mom while working. I was the white part of the Oreo getting squished. But I would go running and all the projects I got involved with on the farm helped. They made me curious and fascinated: the gardening and the chickens who laid colorful eggs, baking bread — those were nurturing. The number one thing was writing this book, though I didn’t know that’s what this was about. It was the biggest exercise in self-care that I could give myself. Other people will have other things.”

The caregiver who is supporting you, Dayana, also burns out. How would you guide another woman who is trying to navigate this tricky relationship? 

“On average, caregivers of people with dementia last 7 months. Dayana was living with my mom and our family because of the pandemic for a year and a half. It didn’t end well because we both burned out. Having the ability to be aware of how hard this is and to verbalize that is so important. We were both unconscious of this. Now with our new caregiver, I initially didn’t want to be friendly — just professional. But it’s an impossible role. What we impose on these caregivers is this impossible task to be the savior, to not let anything bad happen. But it’s what happens because that’s the nature of the illness.  

We shower our current caregiver with love and want to give her gifts because she’s an amazing human being, like a surrogate mom. All of this kaleidoscope of emotion is happening around this one person. It’s similar to a babysitter or nanny taking care of your children, which can also become complicated. When you’re working so hard to please them, there’s a component of fear. If they leave, then you have to reinvent the wheel of, how will you find somebody else? I think a part of the answer is to be aware of that strong emotion and whether you are transferring.”

You write about how mothers inevitably make mistakes, and that you were on a quest to “fix things” with your own mom and with your daughter. How have you healed those mistakes?

“You can’t go back and fix the past — but you can go back to understand what happened and then be forgiving of yourself. We have such complicated relationships with mothers; there’s a phase where it’s all the mom’s fault. My mother made big mistakes, and I explored, why did she make those? She left us in harm’s way, why didn’t she speak out? She wasn’t strong enough. But I never felt unloved. I think we can be angry and disappointed in the choices and the big mistakes our parents can make; examining it can help. What was the quality of their love, though? She never stopped believing in me.”

Do you feel you have more forgiveness for yourself now, as a mother? 

“When I was caught in the swirl of the pandemic, I was operating unconsciously until I exhausted myself and burned out. I wanted to leave the house better than I found it, I wanted to care for my mom and my kids. I didn’t have the perspective to stand back. Whether it was upon reflection or writing or talking with friends, that has allowed me to see how snarled I was and therefore has allowed me to become more forgiving of myself. We can’t go back and fix the past — but if we can reflect on what’s happened to us during the pandemic or our lives, then we can have a greater perspective and find the space to not be as hard on ourselves.”

Your mother found her voice through her photography, and you found yours through your writing. She won’t know that you have written this memoir. How do you think she would feel about it? 

“From the beginning, it was important to my mother for us to have a voice. She didn’t have a voice to protect us because she was a mid-century woman groomed to marry and raise kids. When she married [my stepdad], who was complicated and hurt all of his children in one way or another, she disappeared into her photography. She was brilliant, she did portraits that capture the complexity of people and children. 

She told me early on, keep a journal. I think she saw I was a storyteller, and she encouraged this. She was the number one reader for all of my books. My mother would care most about whether [this memoir] was written well, that it was nuanced and complicated and not just, ‘look at what has happened to me’. I know she would be proud of this book. I was off to give a reading and I showed her the book and I said it’s here, mom. You took the picture on the cover.”