Grief and Loss Are Different When You’re the Caregiver


As told to Jacquelyne Froeber

November is National Family Caregivers Month.

My mom was my biggest fan. After I published my first novel, she came to all my author talks. At the end of each session, I’d ask if anyone in the crowd had questions, and she was always the first one to raise her hand. “I’m Vicki, your mother,” she’d say standing up. Everyone would laugh. “My daughter is a brilliant writer — this is a brilliant book.”

People thought my mom was adorable, but I was so embarrassed. I said, “Mom, you cannot announce to everyone how great your daughter is and then ask me questions at every reading.” She said OK and then ignored me. That was just who my mom was — she radiated positivity and joy, and she was passionate about supporting women — including, and most especially, her daughter.

After my father passed away in 2014, my mom moved to Los Angeles. She lived in a 55 and older community about five minutes from my house. Although she was independent, she was living with a brain tumor. It wasn’t cancerous but it limited her vision in one eye and caused balance issues. Still, my mom was able to do mostly everything on her own: go to the supermarket, get her nails done, take a memoir writing class.

Then the fender bender happened. My primary care doctor, who was also my mom’s doctor, told us she didn’t think mom should drive anymore — her eyesight was too bad.

I knew giving up her car was a big deal for her — driving was her independence. But I quickly realized it was a big change for all of us.

I became mom’s primary caregiver after that, but I still had two of my three kids at home that I was driving to doctor’s appointments, school, soccer practice, martial arts and all the other places they needed to be.

I started to feel like I was drowning in demands. On an average day, I would go pick up mom for an appointment or to go to the grocery store and my phone would buzz the entire time.

“I need the reservation number for the plane tickets.” — Daughter

“I need a ride home after practice.” — Son

“I need money for lunch.” — Youngest

“Did you respond to the text about the reservation?” — Husband

“I need a walk.” — Family dog

OK, our dog never made demands over text, but I still felt guilty. I was always running around trying to balance the needs of my kids and my mom. There were also the emotional needs and teenage angst that came with everyday life. And my mom had emotional needs, too. I tried to stay present in the moment when I was with her, but I was often distracted. I felt like I was falling behind as a daughter, mom and wife.

Robin and her dog, Shiloh, 2024Robin and her dog, Shiloh, 2024

Some days, I wanted to pull the car over and cry. I was so overwhelmed physically and mentally. But frankly, I didn’t have time.

In October 2019, things got worse. My mom fell and hit her eye — the good one. The injury took her eyesight and then she was almost completely blind. She needed in-home care and therapy, and it was up to me to find the best care team to help with all her new challenges.

Then Covid started and everything went dark. The in-home care plans stopped. Everything was closed and planned doctor’s visits and therapy just went away.

We were terrified. Everyone was terrified. To make matters worse, our home was not safe for my mom. My husband’s a physician so he was in and out of the hospital every day during the pandemic. We were terrified we were going to pass the virus to her. And I couldn’t go to her place. The elder community was very strict because they were trying to protect their vulnerable residents.

So, weeks went by before I was able to see my mom in person. When I was finally able to visit I was shocked by how downhill she’d gone in such a short time. She was confused and disoriented. The isolation and loneliness and lack of services had taken an irreversible toll on her. We did everything we could to lift her spirits and health overall, but Mom died not long after that.

The guilt was insurmountable. As her caregiver, I felt responsible for her. The blame and regret played on a loop in my brain: I made the wrong choices … I should have made different choices … if only I’d known my mom was at the end of her life … but how could I have known … I could have moved her in with me … but I was trying to protect her … but did I protect her? These questions plagued me.

The loss and the grief of losing a parent is something many people experience. But grief is a different shade when you’re their primary caregiver. There’s an extra layer of guilt and remorse — even though there’s nothing more you could have done. Because it’s not just grief, there’s a sense of responsibility and that’s very hard to handle.

Mentally, I was in a very dark place for a long time. I’d spent so much time worrying about my mom when she was alone and now that she was gone, I was worried about how she died.

About a year later, when the world opened back up, two of my three kids were off at school. My youngest started driving everywhere and didn’t need me like before the pandemic. Suddenly I was this rudderless person.

I had these two starring roles in my life — mother and daughter — which may have been difficult at times but they gave me a sense of purpose. So, who was I without my children and my mother?

I needed help moving forward, so I started seeing a grief therapist. She changed my life. She helped me see that I’d been a fierce advocate for my loved ones all my life and there was nothing I could’ve done to change what happened to my mom.

In addition to therapy, I began a regular writing practice where I shared my grief and loss each week on my blog. It was the best way for me to connect to myself and share my grief journey with others. After a year of writing, I went back and reread what I’d written. It remains a powerful map of what I’ve been through and how far I’ve come.

It’s been four years since my mom died. Since that time, I’ve moved from feeling her absence to feeling her presence in everything I do. I called upon her many times for help when I was writing my second book, “Heart. Soul. Pen.: Find Your Voice on the Page and in Your Life.” I still look for her hand in the crowd during author talks, but, even though I don’t see it, I feel it. I know she’s still right here with me.

Have a Real Women, Real Stories of your own you want to share? Let us know.

Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.

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Tips for Head and Neck Cancer Caregivers



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If you’re caring for someone with head and neck cancer, you may be at a higher risk of caregiver burnout than some other groups of cancer caregivers.

A 2023
study in JAMA Network Open found that caregivers for people suffering from head and neck cancer are at higher risk of their own negative health impacts than caregivers for people with other types of disease. This is likely because of the intense nature of head and neck cancer.

Seth Eisenberg, president at
PAIRS Foundation, who had head and neck cancer himself seven years ago, pointed out that the stress of watching someone go through the challenges of this type of cancer — which often affects eating, breathing and speaking — can be particularly distressing for a caregiver.

The intense burden of the disease can also keep patients from being able to work, and the JAMA study found that patient unemployment increased the odds of caregiver burnout sixfold. That’s likely because the inability to work usually means more caregiving time is necessary and/or the symptoms of the cancer are more severe, both of which can mean a higher caregiving burden.

Disrupted schedules, financial challenges, lack of family support, their own health problems and lowered self-esteem can all contribute to caregiver burnout. And caregiver burnout can lead to serious health impacts for the caregiver, such as anxiety, depression, heart complications, sleep deprivation and fatigue.

Here are 4 tips for self-care when you’re caregiving for someone with head and neck cancer.

1. Ask a medical team for training as soon as possible

Caregiver burnout tends to develop within the first six months of diagnosis and can increase very rapidly. One of the best strategies for dealing with caregiver burnout may be taking steps to prevent it in the first place. If possible, ask a medical team as soon as possible after diagnosis for hands-on training that can help with the caregiving tasks of head and neck cancer.

A 2023 survey in Cancer Nursingof family caregivers of head and neck cancer patients found that getting help with the practical aspects of caregiving with this type of cancer is enormously important. Family members or loved ones are asked to take on tremendously technical nursing tasks such as tracheostomy care, tube feedings and pain management, on top of managing the emotional and mental needs of the patient as well.

Caregiving through head and neck cancer comes with a lot of challenges, but ensuring that you understand the practical basics of the medical care you need to provide can help relieve some of the psychological distress and emotional burden that can make caregiver burnout worse.

2. Talk to an employer about caregiving accommodations

One thing that all research on the caregiving impacts of head and neck cancer points to is the strain on caregivers’ employment. Trying to balance the needs of caregiving with your own employment can be a recipe for fast burnout.

If possible, caregivers should talk to their employers to request any reasonable accommodations or even caregiving leave, especially in the early days of caregiving when the learning curve may be especially steep. Eisenberg also points out that there are specific cancer caregiving grants and financial assistance programs caregivers can apply for that can help relieve some of the financial burden.

3. Set up self-care

It might seem like just another burden on a to-do list, but being intentional about self-care can help soften the impacts of caregiver burnout. While self-care might seem selfish or even a waste of time when you have so much to do, even a small amount of self-care can significantly decrease the risk of health impacts from caregiving.

Self-care doesn’t have to be a huge effort, either. Some examples of self-care include:

  • Daily movement, like exercise or a walk
  • Therapy
  • Counseling
  • Proper nutrition
  • Talking with friends or loved ones
  • Time off to enjoy hobbies
  • Journaling
  • Meditating
  • Scheduling medical check-ups and wellness visits

4. Find support

Again, finding support can feel like yet another task on a caregiver’s to-do list, but it can also make a vital difference in both your mental and physical health. Some resources for finding support include:

  • Asking a social worker for resources
  • Attending virtual or in-person therapy
  • Finding an in-person caregiving support group
  • Leaning on friends and family
  • Looking for online support groups for cancer caregivers
  • Applying for cancer caregiving financial aid or assistance programs
  • Signing up for a local meal delivery program, either community-based or a paid service
  • Using transportation assistance if needed

“Don’t hesitate to ask for help from family members, friends or professional caregivers,” Eisenberg said. “Delegating tasks can reduce the burden and provide caregivers with much-needed respite.”

This educational resource was created with support from Daiichi Sankyo and Merck.

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Consejos para cuidadores de pacientes con cáncer de cabeza y cuello



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Si cuidas a alguien con cáncer de cabeza y cuello, podrías tener un mayor riesgo de agotarse que cuidadores de personas con otros tipos de cáncer.

Un
estudio de 2023 en JAMA Network Open determinó que los cuidadores de personas que padecen cáncer de cabeza y cuello tienen un mayor riesgo de que su propia salud se vea afectada negativamente que cuidadores de personas con otros tipos de cáncer. Esto se debe posiblemente a la naturaleza intensa del cáncer de cabeza y cuello.

Seth Eisenberg, presidente de la
PAIRS Foundation, quien tuvo cáncer de cabeza y cuello hace siete años, dijo que el estrés de ver a alguien enfrentar los desafíos de este tipo de cáncer, que frecuentemente afecta la alimentación, la respiración y el habla, puede ser particularmente perturbador para un cuidador.

Esta carga intensa de la enfermedad también puede hacer que los pacientes no puedan trabajar y el estudio de JAMA determinó que el desempleo de los pacientes sextuplica las posibilidades de que sus cuidadores tengan agotamiento. Esto se debe posiblemente a que la incapacidad para trabajar usualmente implica que se necesita más tiempo de cuidado o que los síntomas de cáncer son más graves y ambos factores pueden implicar una mayor carga de atención.

Factores tales como alteraciones de los horarios, dificultades financieras, falta de apoyo familiar, sus propios problemas médicos y una autoestima reducida pueden contribuir con el agotamiento de los cuidadores. Y el agotamiento puede hacer que el cuidador tenga impactos médicos graves, tales como angustia, depresión, complicaciones cardiacas, privación de sueño y fatiga.

Aquí encontrarás 4 consejos para cuidados personales si cuidas a una persona con cáncer de cabeza y cuello.

1. Pide capacitación a un equipo médico lo antes posible

El agotamiento de los cuidadores tiende a ocurrir los primeros seis meses después del diagnóstico y puede aumentar muy rápidamente. Una de las mejores estrategias para lidiar con el agotamiento de los cuidadores podría ser implementar medidas para prevenirlo. Si es posible, pide a un equipo médico, lo antes posible después del diagnóstico, una capacitación práctica que sea útil en lo que se refiere a las tareas relacionadas con el cuidado de una persona con cáncer de cabeza y cuello.

Una encuesta de 2023 de Cancer Nursing de cuidadores familiares de pacientes con cáncer de cabeza y cuello determinó que obtener ayuda con los aspectos prácticos de los cuidados de este tipo de cáncer es muy importante. Se pide a familiares o seres queridos que asuman tareas de enfermería tremendamente técnicas tales como cuidados para la traqueotomía, alimentación por sonda y alivio del dolor, además de manejar también las necesidades emocionales y mentales del paciente.

Cuidar a personas que padecen cáncer de cabeza y cuello tiene muchos desafíos, pero si te aseguras que entiendes los fundamentos prácticos de la atención médica que debes proporcionar puede ser útil para aliviar el malestar psicológico y la carga emocional que puede empeorar el agotamiento de los cuidadores.

2. Habla con tu empleador acerca de adaptaciones para asistencia

Algo que todas las investigaciones indican sobre los impactos de los cuidados relacionados con el cáncer de cabeza y cuello es el perjuicio laboral de los cuidadores. Tratar de equilibrar las necesidades de la asistencia con las de tu propio empleo puede causar un agotamiento rápido.

Si es posible, los cuidadores deberían hablar con sus empleadores para solicitar cualquier adaptación razonable o incluso permisos para ausentarse para proporcionar asistencia, especialmente en los primeros días de la asistencia cuando se debe aprender mucho. Eisenberg también dice que hay programas de subvenciones de asistencia y de ayuda financiera específicos para cuidadores de pacientes con cáncer a los cuales se puede aplicar y que son útiles para aliviar algunos de los cargos financieros.

3. Implementa cuidados personales

Podría parecer otra carga en una lista de quehaceres, pero establecer intencionalmente cuidados personales puede ser útil para amortiguar el impacto del agotamiento de los cuidadores. Aunque los cuidados personales podrían parecer algo egoísta o un desperdicio de tiempo cuando tienes tantas cosas que hacer, incluso pocos cuidados personales pueden reducir significativamente el riesgo de impactos a la salud por proporcionar asistencia.

Los cuidados personales no tienen que ser un esfuerzo enorme. Algunos ejemplos de cuidados personales incluyen:

  • Movimiento cotidiano, tal como ejercicio o una caminata
  • Terapia
  • Asesoramiento
  • Nutrición apropiada
  • Hablar con amigos o seres queridos
  • Tiempo de descanso para disfrutar pasatiempos
  • Escribir un diario
  • Meditar
  • Programar evaluaciones médicas y consultas para tu bienestar

4. Encuentra apoyo

Encontrar apoyo puede sentirse como otra tarea más en la lista de quehaceres de un cuidador, pero también puede marcar una diferencia vital para tu salud mental y física. Algunos recursos para encontrar apoyo incluyen:

  • Pedir recursos a un trabajador social
  • Asistir a terapias virtuales o presenciales
  • Encontrar un grupo de apoyo presencial para cuidadores
  • Obtener apoyo de amigos y familiares
  • Buscar grupos de apoyo virtuales para cuidadores de pacientes con cáncer
  • Aplicar a programas de asistencia o apoyo financiero para cuidadores de pacientes con cáncer
  • Inscripción en un programa local de entrega de comida, ya sea comunitario o un servicio pagado
  • Usar asistencia de transporte si fuese necesario

“No dudes en pedir ayuda a familiares, amigos o cuidadores profesionales”, dijo Eisenberg. “Delegar tareas puede reducir la carga y eso proporciona un respiro muy necesario a los cuidadores”.

Este recurso educativo se preparó con el apoyo de Daiichi Sankyo y Merck.

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