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Caring for Our Mothers

Sarah Mason Teague and Kristen share about how caring for their late mothers as young women, how that impacted their identity and their ongoing grieving process.

Brilliantly: We’ve talked a few times before about your decision to have a preventative mastectomy, being cold, figuring out how to feel physically strong, and things related to mastectomy that are very physical and practical, but this is the first time we’re chatting about being caregivers for our mothers. That experience shaped us both and it’s interesting that we haven’t talked much about that part of our life.

Sarah: I think a big part of why we don’t share that part of our story is that being a caregiver sets it up that our feelings don’t matter. When you’re caring for someone who is ill, it’s about them and their wellbeing. And now that I’m on the other side of that experience, I feel like I need to be strong and healthy and competent so I can show up for my husband and my son and do good work.

Brilliantly: It’s hard to imagine simultaneously doing all those things and also diving into your grief. For me, there were many times that I felt like I didn’t have the space or time or energy to process my grief. It didn’t feel worth being sad because then my kids would both get sad too. When they were little especially, it felt like they were emotional sponges. I spent a lot of time over the last fifteen years swallowing my feelings.

Sarah: I don't even like crying in front of my family. So when I am sad, I tend to break down in the shower, or the car, or someplace where I'm isolated. I hate crying. I hate it. And if I'm doing it, I've just reached my boiling point and need the release.

Brilliantly: I totally understand. When my facade is worn down enough that cry, I also prefer being alone. I am terrified of people knowing how close my sadness is to the surface. Grieving has been such a long process. I’m finally starting to understand my own experience and behavior after fifteen years.

Sarah: It does take a long time. I was five when my mom was first diagnosed with stage two triple negative breast cancer. She was 35- my age now.

Brilliantly: That must have been really difficult for your family. I was almost 20 when my mom was diagnosed. Do you remember that time in Dallas?

Sarah: Bits and pieces. We were living in Oklahoma and to make sure she got the best treatment, she and I temporarily moved so she could get it in Dallas.

My mom really tried to keep things from being scary. She didn't want me to be afraid of the wigs, so she took me shopping with her so I’d be part of that process. I also remember playing with a little boy on the floor while our parents were hooked up getting treatment. But I didn't really understand what was happening.

My mom, unfortunately, was born with knee issues and had had like 15 surgeries by the time she was 20. So growing up it was normal for me to be in the waiting room or doing something with a coloring book waiting at my mom's appointments. So in a weird way, it seemed normal.

Brilliantly: Right, because it just was part of your life.

Sarah: After her treatments where finished, we’d make annual trips to Dallas for follow up visits and we’d turn it into a fun weekend away. After the doctor appointments we’d go shopping and out to eat.

Brilliantly: Yes, I have a clear memory of going to one of my mom’s mammograms a year or two after her lumpectomy with two of her friends in tow so we could have a girls day after her appointment. It’s important to create distracting rituals.

Sarah: Her initial treatment was a lumpectomy— she didn’t want a mastectomy, I think even to her that seemed drastic and it wasn’t something people were doing everyday like they are now. So instead she didchemotherapy, and radiation. When we moved back home and she was healthy until 2008 when it came back again.

When she was diagnosed the second time, genetic testing was an option. We found out she was BRCA1 positive and they had classified her cancer as Triple Negative Breast Cancer (which they had not done the first time she was diagnosed) so she decided to have a double mastectomy and a hysterectomy.

Brilliantly: I can obviously understand wanting to be aggressive and preventatively take action.

Sarah: Both of my parents were politicians— my mom was a district judge. And the symptoms of the cancer being metastatic began in the middle of her campaign cycle. We had been putting out signs, doing mailings and all of the labor intensive parts of promoting her campaign when started complaining that her shoulder hurt and that she was getting headaches. We just assumed were related to the stress of the campaign.

It wasn't until she could not raise her arm that she went to the doctor and found out the cancer had metastasized to her bones.Brain.

Brilliantly: That must have been so shocking especially after she’d had so much surgery to prevent a reoccurrence.

Sarah: It took us all by surprise. The cancer was in her brain, bones, and blood. She ultimately ended up going back to Dallas for treatment at a different hospital where she qualified for a clinical trial. The trial required her to go twice a week. My dad and I split the four-hour drive from Oklahoma city to Dallas. I was in graduate school at the time and had moved back in with my parents, so my schedule was thankfully pretty flexible.

Brilliantly: It can be hard to qualify for a clinical trial and that schedule sounds exhausting.

Sarah: The clinical trial gave her about a year. There was a short time when things were looking really good, she was feeling good. She started working a bit and even did a TedTalk. Unfortunately she started experiencing an adverse side effect of the clinical trial, and her white blood cell count was so low that she couldn’t receive any further treatment.

For the final two months of her life, my dad and I were fully focused on caring for my mom. We took turns with everything from managing her medication to flip-flopping the night shift so each of us would get some time to sleep. My mom would try to get up and walk around at odd hours of the night and need help so she didn’t fall.

Brilliantly: The exhaustion just compounds, right? I remember driving my mom to chemo and sitting with my face down on a tray next to her treatment chair so I could sleep.

Sarah: I taught myself to sleep with all the lights on— it took me months after she died to learn how to sleep with the lights off again.

Brilliantly: There are so many changes and adjustments that you make because you’re forced to, because you want to do the best job you possibly can.

Sarah: I had someone recently asked me a very bizarre question about if watching someone die from cancer in real life is as bad as the movies makes it look. And I was like, "Well, yes and tenfold."

The day that my mom actually died, she died in the house, that was her wish. I don't think I had showered in three days and hadn’t changed my clothes. I had blinders on to everything that was going on around me at the house other than my mom. All I knew was my schedule for giving morphine drops and that was my job.

Brilliantly: My mom also wanted to die at home. And as you know, nobody really, not even the hospice people, explain how awful it is at the end. No one explains the process and it’s so scary to watch. I had nightmares for years about the noises my mom made in her final days.

Sarah: It took me years to get that out of my head too. The noises and the pain at the end. At a certain point, you don't want them to have to suffer more than you want to keep them alive.

Brilliantly: It's terrible. Watching someone you love suffer is painful in a way that I’ve yet to find words for. I had so much guilt saying this for a long time, but when my mom finally died, there was such a huge relief with not seeing her suffer any longer.

Sarah: The relief is emotional and physical too- but in a way I think that it gets worse before it gets better. My dad got pneumonia after my mom died. He had completely worn himself out and had insomnia and his body couldn’t take it anymore. When you're in that care-taking mode, your needs get lost.

I remember coming out of the fog months after she died and realizing that I’d missed pretty much everything happening in the world. I’d been so focused on my mom. A few months after she died, people were talking about movies that had come out that year and I hadn’t heard of a single one. The same with songs and tv. I missed it all.

Brilliantly: It's hard to explain to someone who hasn’t been through it— how the rest of your life stops and how difficult it is to adjust when your role as caretaker is over. Similar to your dad, I also got sick shortly after my mom died. I remember wondering if my heart could hurt that much from emotional pain, but it turned out I had a virus in the linking of my heart that settled there because I was so run down.

Sarah: I was so stressed. My hormones went nuts and I had insane, painful periods. People tell caretakers to take care of themselves and make sure they're resting. But when you’re giving the meds, staying up all night, cleaning, etc. There isn’t really time for taking a bubble bath or a nap. It’s hard to care about yourself in those moments.

Brilliantly: There is also the non-existent emotional self-care, right. You said this before, but the caretakers’ feelings don't matter for so much of the time when someone is ill. It’s hard to adjust to having your feelings matter again. I think it’s similar to how survivors struggle with adjusting to life post-cancer. Caregivers struggle to find themselves once that role is over and to rebuild relationships with whoever they shared the role with.

Sarah: For both of us it was our dads. How is your relationship with your dad?

Brilliantly: In hindsight, I feel like my dad and I went through a war together. I don't know if this is how you feel, but I feel like we trauma-bonded. It was hard to relate to him in normal non-cancer world after that.

Sarah: My dad was the model of how a husband, partner and father should be while my mom was sick. But after she died, he immediately wanted to move out of the house, which was an awful and painful process.

Once we sold the house, I didn't really have a home. My stuff was in boxes and I felt like I was living in my car.During graduate school I'd like sometimes stay with my dad and sometimes stay with my grandmother. I would stay with my grandmother when I was going to class because my school was an hour and half away from my dad’s. And I think that was a huge part of my trauma.

And one of the biggest obstacles is that things around holidays and traditions are still stressful and strained.

Brilliantly: We all need to figure out a new way of celebrating and creating traditions. It’s really challenging. My family is also struggling with that too.

Sarah: Both of our moms died in the fall. That time of year kicks off almost two months of not knowing how to behave or what to do now that everything is different. Everybody knows it's not the same and for me, and it feels like it's never gonna be easy or better.

Brilliantly: I struggle with that still, although now that my kids are a little older, it’s getting easier because there are things that they want to do and traditions that have naturally started.

Do you mind if I ask when you met your husband?

Sarah: I met him 3 years aftermy mom died. I didn't want look back on the early memories with someone and have them remind me of that time. It was better that I was not in a relationship while I was taking care of my mom. I didn’t have anything to give to myself, and I sure as hell didn't have anything to give to another person.

Brilliantly: It's so good you knew that about yourself. I weirdly had the total opposite intuition. I remember thinking, I can't imagine telling someone about my life, about what I just went through. What the would I say about myself?

Sarah: I think that’s one of those things that you can only see in hindsight because there's no way you can see that when you're in the middle of it, when you're in the

trenches. On the flip side for me, I should have probably relied on other people a little bit more.

During that time I also couldn’t think about the future, which would have made me difficult to date. I wasn’t able to consider anything life altering. I couldn't process more than a month out. I had grad classes, I needed to write a part of my dissertation, etc.

Brilliantly: I can totally relate. It’s hard to think about planning the future when the future you’d imagined is different or gone.

Sarah: When I met my husband, and we did get engaged, I was finally at the point where I was accepting of big changes. But my grief affected the wedding planning— well, I suppose it affected everything because I did not want a big wedding. It was hard to imagine celebrating in a big way, it just didn’t seem like that was what mattered.

Brilliantly: Even the happiest days are bittersweet now. Even when it’s something wonderful like a wedding, or a birth, a part of it is also really, really fucking sad.

Sarah: It is. And this whole experience has made me incredibly more sympathetic to others. When I see someone pushing a wheelchair, or someone on oxygen or walking slowly with a walker, Someone with a wrap on their head because they have lost their hair to chemo-whatever the case may be, I no longer dismiss them, I wonder about their story and lives.

And I have so much respect/empathy for the people loving and taking care of them, in a way that is impossible without being a caretaker and experiencing your own loss.

Brilliantly: I couldn’t agree more. It is an experience that cements a particular kind of compassion.

Sarah: Also, my experience as a caretaker made me more confident as a parent. Not that I had any idea of what I was doing, but I knew I was well equipped for whatever was thrown at me. Doctor appointments, diapers, sleepless nights, etc.

Brilliantly: I think that is also true. And that in the case of becoming a parent, which is generally really joyful, it’s easier to feel good about the loss of sleep and change of routine. Being a caregiver provides perspective in a really important way that I think helps, if I try and frame it positively, with being resilient.

Sarah: It also made me a lot better prepared for the death of my grandmother— six years after my mom. No one else had the experience of providing that kind of care and I was able to help and oversee. Although through a truly painful loss, the veil had

been lifted— I knew what to expect, what I could do and how to handle it better than those experiencing it for the first time.

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