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Ivy Blog

Battling a Brain Tumor: Through the Lens of the Caregiver

In honor of National Family Caregivers month, we are sharing the perspectives of several different caregivers who are selflessly helping a loved one navigate a brain tumor diagnosis. We understand that taking on the role of a caregiver can be isolating and is why especially in the era of COVID-19, it’s important for those in this position to hear from others going through a similar experience. This month is a time to acknowledge caregivers and let their voices be heard.  

What do you find to be most rewarding as a caregiver? 

  • “Knowing that what I’m doing matters. That even though I’m exhausted, my choices, my struggles, are keeping my husband happy and healthy.”
    Sara, caregiver to spouse for two and half years 
  • “Having the honor to care for my mom as she has done for me.”
    Emma, caregiver to mother for one year 
  • “I find it rewarding to be there for him and care for him as lovingly as I can and as best as I can while he faces this. And I’m his best health care advocate and I’m glad I can do that.”
    Anonymous, caregiver to spouse for one year 
  • “I know my husband better than anyone and can take care of him. My reward is loving him and getting it back twofold.”
    Vicki, caregiver to spouse for two years 
  • “The love of giving.”
    Lorie, caregiver to spouse for 15 months  

What is the most challenging aspect of being a caregiver?  

  • “Keeping my hope.”
    Kelcie, caregiver to significant other for three years 
  • “The constant feeling like I’m failing somewhere. I’m 35… no one in my age group gets this. I feel like at work I’m worried about my husband. At home I’m worried how I’m failing at my job. It’s a constant tug of war of where to spend time. When to fight for my husband and never know if I’m doing anything right… and the nagging feeling I’m not.”
    Sara, caregiver to spouse for two and half years 
  • “Keeping your spirits up.”
    Harriet, caregiver to child for 5+ years 
  • “Being a caregiver to my husband has definitely changed our relationship. Sometimes It seems like we are both on our own path as we deal with this dreaded disease. For the first time in our lives, our future is no longer shared and it isn’t something we can really talk about.”
    Anonymous, caregiver to spouse for 14 months 
  • “Being a daughter, a patient advocate, and who I am as a person all at once. These roles can never be separated. It is draining beyond belief.”
    Emma, caregiver to mother for one year 

What is the best advice you can give to other caregivers? 

  • “Breathe. You know your loved one better than any doctor so if something seems wrong, take a deep breath and get in there and do what you can for them. Even when they say they are fine, you know when they aren’t. Trust yourself.”
    Sara, caregiver to spouse for two and half years 
  • “Let the tears flow. You have to feel the pain before you can feel a little better sometimes. Otherwise, the anticipatory grief will eat you alive.”
    Emma, caregiver to mother for one year 
  • “Be patient and take time to laugh and relax, if you can join support groups and don’t worry if the house is a mess.”
    Anonymous, caregiver to spouse for one year 
  • “As hard as it is, take care of yourself so you can take care of your patient. Try not to let this disease rob you of the present, knowing it may well rob you of a future with this person.”
    Harriet, caregiver to child for 5+ years 
  • “You have to be patient with them. Every single day I am closing cabinet doors, shutting water off that has been running for a long time, leaving doors open and forgetting to close them…..just everyday things.”
    Vicki, caregiver to spouse for two years 

What’s something a friend or loved one can do to help support you as a caregiver? 

  • “There are so many things and nothing. Just listening. Understand that friendship will look different now. Do little things and expect no return text. Bring a meal. Buy a coffee. Send a card. Caregiving feels like a thankless job. It’s all about the person who is sick, but sometimes just saying I see your struggle is enough.”
    Sara, caregiver to spouse for two and half years 
  • “Just let me talk, just listen.”
    Emma, caregiver to mother for one year 
  • “Please don’t forget about us. I know everyone is busy but it is extremely lonely, especially with COVID-19, to be home alone. It’s hard to ask for help, but so nice when someone reaches out just to check in.”
    Anonymous, caregiver to spouse for 14 months 
  • “Ask if you need help.”
    Terri, caregiver to spouse for three years 
  • “Just listen.”
    Alba, caregiver to spouse for nine months 

What resources do you find helpful and/or useful as a caregiver? 

  • “The In Sickness + In Health podcast is amazing. Books! Support groups on Facebook for the same tumor type.”
    Sara, caregiver to spouse for two and half years 
  • “You have to find a group of people you can trust. Whether that be in the form of a support group or a close group of friends or family. These people will build you up when times are tough, when you are depressed. They see the good that you can’t. They see the positive when you are too exhausted to.”
    Emma, caregiver to mother for one year 
  • “The Barrow support group has helped. I met another parent and that has really helped knowing someone who is going through this journey.”
    Harriet, caregiver to child for 5+ years 
  • “I appreciate meeting others in a similar situation. I read/research a lot and most days it feels empowering and other days it seems too overwhelming so I put it all on the backburner.”
    Anonymous, caregiver to spouse for 14 months 
  • “Any and all given.”
    Alba, caregiver to spouse for nine months 

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