Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
    • All
    • Physician
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • Video
    • About
    • Contact
    • Contribute
    • Book
    • Careers
    • Podcast
    • Recommended
    • Speaking

The heartbreaking realities of being a caregiver with Huntington’s disease

Erin Paterson
Conditions
April 20, 2023
40 Shares
Share
Tweet
Share

An excerpt from Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community.

These days as my father’s Huntington’s disease progresses and I take on more and more, I have learned how quickly being a caregiver can consume my life. Yes, he is still living two hours away, and I don’t take care of his day-to-day needs, but I do everything else for him from paying his bills to booking doctor appointments, following up on every detail, and making sure his supplies are stocked. When he became suddenly ill after a routine vaccination and ended up in hospital, I was at his bedside advocating on his behalf for weeks on end until he was well enough to go back to his retirement home. Sometimes I feel like I can’t live my own life because I feel guilty about the things he can no longer do. I know that is no way to live. So I am trying to learn, at the same time as teaching my daughter about self-care, to take time for myself, and that another person’s life cannot become your whole life. I know my daughter is picking up on even more than I realize. This was never more evident than when she had a day off from school, and we were out for brunch together.

As we sat in the booth waiting for our bacon and eggs, my nine-year-old daughter asked me a shockingly insightful question. She knows that I am gene-positive for Huntington’s disease and that I am going to develop the disease one day.

“Mom, is it hard for you taking care of Grandpa, knowing the same thing is going to happen to you?”

I started crying because I was so touched by her thoughtfulness. This is something that most adults in my life don’t even understand.

“Yes, that’s the hardest part about Huntington’s for me. Being able to take care of Grandpa without constantly being upset about my future,” I told her honestly. I was so proud of her for showing such empathy. I got out of my side of the booth, slid in next to her, and gave her a huge hug.

“Thank you for being such an amazing kid,” I said.

Learning how to deal with HD in our lives is giving us the tools to handle other hard things that will undoubtedly come our way. I know we will be OK, no matter what. My daughter will be equipped for what is to come because my husband and I are teaching her those lessons now. If there is something we fail to teach her, I know she will be able to advocate for herself and find the help she needs.

What gives me hope for our future with Huntington’s is that I am giving my daughter the skills to handle it.

Erin Paterson is a writer and the author of Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community and All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness.

Prev

Breaking the silence on mental health: Why understanding past traumas is key

April 20, 2023 Kevin 0
…
Next

Why work shouldn't define your self-worth [PODCAST]

April 20, 2023 Kevin 0
…

Tagged as: Neurology

Post navigation

< Previous Post
Breaking the silence on mental health: Why understanding past traumas is key
Next Post >
Why work shouldn't define your self-worth [PODCAST]

More by Erin Paterson

  • Advocating for a sick parent by confronting physician bias

    Erin Paterson
  • The emotional side of genetic testing

    Erin Paterson
  • A patient’s perspective on genetic testing

    Erin Paterson

Related Posts

  • Gun violence is our society’s disease

    Leslie Mattson, MD
  • The culture of perfection in medicine is a disease

    Andy Cruz, MD
  • Expanding health care access and equity through telehealth

    Gjanje L. Smith, MD, MPH, Wanneh A. Dixon, and Maria Phillips, JD
  • Are hospital CEOs responding to the realities of health care?

    Ammura Hernandez, MD
  • The caregiver’s mantra: doing the best I can

    Patricia Williams
  • Health literacy: the missing piece to caregiver support and empowerment

    Sandra Vamos, EdD and Deanna Lernihan, MPH

More in Conditions

  • Overcoming the lies of depression: Senator John Fetterman’s struggle with mental health

    Harvey Max Chochinov, MD, PhD
  • Proposed USPSTF guideline update: Advocating for earlier breast cancer screening at age 40

    Hoag Memorial Hospital Presbyterian
  • The rising threat of lung cancer in Asian American female nonsmokers

    Alice S. Y. Lee, MD
  • Urgent innovation needed to address growing mental health crisis among children and families

    Monika Roots, MD
  • The importance of listening in health care: a mother’s journey advocating for children with chronic Lyme disease

    Cheryl Lazarus
  • The unjust reality of racial disparities in pediatric kidney transplants

    Lien Morcate
  • Most Popular

  • Past Week

    • Physician entrepreneurs offer hope for burned out doctors

      Cindy Rubin, MD | Physician
    • Boxing legends Tyson and Foreman: powerful lessons for a resilient and evolving health care future

      Harvey Castro, MD, MBA | Physician
    • A physician’s typical day, as envisioned by a non-clinician health care MBA: a satire

      Jennifer Lycette, MD | Physician
    • Is chaos in health care leading us towards socialized medicine? How physician burnout is a catalyst.

      Howard Smith, MD | Physician
    • Decoding name displays in health care: Privacy, identification, and compliance unveiled

      Deepak Gupta, MD | Physician
    • We need a new Hippocratic Oath that puts patient autonomy first

      Jeffrey A. Singer, MD | Physician
  • Past 6 Months

    • It’s time to replace the 0 to 10 pain intensity scale with a better measure

      Mark Sullivan, MD and Jane Ballantyne, MD | Conditions
    • “Is your surgeon really skilled? The hidden threat to public safety in medicine.

      Gene Uzawa Dorio, MD | Physician
    • Breaking the cycle of racism in health care: a call for anti-racist action

      Tomi Mitchell, MD | Policy
    • Revolutionize your practice: the value-based care model that reduces physician burnout

      Chandravadan Patel, MD | Physician
    • Unveiling the hidden damage: the secretive world of medical boards

      Alan Lindemann, MD | Physician
    • An inspiring tribute to an exceptional radiologist who made a lasting impact

      Kim Downey, PT | Conditions
  • Recent Posts

    • Unlocking resilience: a powerful journey from trauma to transformation [PODCAST]

      The Podcast by KevinMD | Podcast
    • Overcoming the lies of depression: Senator John Fetterman’s struggle with mental health

      Harvey Max Chochinov, MD, PhD | Conditions
    • Master the ABIM Certification exam with effective strategies: insider tips for success

      Farzana Hoque, MD | Education
    • A mentor’s legacy in medicine, leadership, and embracing evidence-based care

      Arthur Lazarus, MD, MBA | Physician
    • Breaking free from restrictive covenants to combat burnout

      Raya E. Kheirbek, MD | Physician
    • Fixing the system and prioritizing patient care [PODCAST]

      The Podcast by KevinMD | Podcast

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

Leave a Comment

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

CME Spotlights

From MedPage Today

Latest News

  • New Data in NSCLC Bolster Support for Perioperative Immunotherapy
  • Breathing Support Type Matters for Preventing Extubation Failure in the PICU
  • Second-Line Axi-Cel Bests Standard in Relapsed/Refractory Large B-Cell Lymphoma
  • New Agents for Relapsed/Refractory Myeloma Impress in Early-Stage Clinical Trials
  • Kratom Linked to Outsized Proarrhythmic Risks

Meeting Coverage

  • New Data in NSCLC Bolster Support for Perioperative Immunotherapy
  • Second-Line Axi-Cel Bests Standard in Relapsed/Refractory Large B-Cell Lymphoma
  • New Agents for Relapsed/Refractory Myeloma Impress in Early-Stage Clinical Trials
  • CAR-T Tops Standard Care in Heavily Pretreated Lenalidomide-Refractory Myeloma
  • T-DXd Proves Mettle in Multiple Solid Tumors
  • Most Popular

  • Past Week

    • Physician entrepreneurs offer hope for burned out doctors

      Cindy Rubin, MD | Physician
    • Boxing legends Tyson and Foreman: powerful lessons for a resilient and evolving health care future

      Harvey Castro, MD, MBA | Physician
    • A physician’s typical day, as envisioned by a non-clinician health care MBA: a satire

      Jennifer Lycette, MD | Physician
    • Is chaos in health care leading us towards socialized medicine? How physician burnout is a catalyst.

      Howard Smith, MD | Physician
    • Decoding name displays in health care: Privacy, identification, and compliance unveiled

      Deepak Gupta, MD | Physician
    • We need a new Hippocratic Oath that puts patient autonomy first

      Jeffrey A. Singer, MD | Physician
  • Past 6 Months

    • It’s time to replace the 0 to 10 pain intensity scale with a better measure

      Mark Sullivan, MD and Jane Ballantyne, MD | Conditions
    • “Is your surgeon really skilled? The hidden threat to public safety in medicine.

      Gene Uzawa Dorio, MD | Physician
    • Breaking the cycle of racism in health care: a call for anti-racist action

      Tomi Mitchell, MD | Policy
    • Revolutionize your practice: the value-based care model that reduces physician burnout

      Chandravadan Patel, MD | Physician
    • Unveiling the hidden damage: the secretive world of medical boards

      Alan Lindemann, MD | Physician
    • An inspiring tribute to an exceptional radiologist who made a lasting impact

      Kim Downey, PT | Conditions
  • Recent Posts

    • Unlocking resilience: a powerful journey from trauma to transformation [PODCAST]

      The Podcast by KevinMD | Podcast
    • Overcoming the lies of depression: Senator John Fetterman’s struggle with mental health

      Harvey Max Chochinov, MD, PhD | Conditions
    • Master the ABIM Certification exam with effective strategies: insider tips for success

      Farzana Hoque, MD | Education
    • A mentor’s legacy in medicine, leadership, and embracing evidence-based care

      Arthur Lazarus, MD, MBA | Physician
    • Breaking free from restrictive covenants to combat burnout

      Raya E. Kheirbek, MD | Physician
    • Fixing the system and prioritizing patient care [PODCAST]

      The Podcast by KevinMD | Podcast

MedPage Today Professional

An Everyday Health Property Medpage Today
  • Terms of Use | Disclaimer
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

Leave a Comment

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...