November is National Caregivers Month
“I became involved with ALF after attending a class at Columbia Presbyterian University Hospital shortly after my partner, Zach, was diagnosed with end stage liver disease. I was so impressed by the information and resources for both patients and caregivers that I wanted to learn more,” said Stacey.
Caregivers serve as lifelines and are the primary source of love, support and strength for those in their care. In the U.S., many caregivers work jobs outside of the home in addition to providing full-time care. Research indicates caregiving can take a significant emotional, physical and financial toll and ALF offers resources to help.
Stacey said, “I ensure Zach’s medications are taken regularly and that he gets the right amount of sleep due to his encephalopathy. I bring him to and from doctor’s appointments and make sure he maintains a healthy, well-balanced diet. Most importantly, I am his support system, his “therapist” and his confidant – it can be a lot both physically and mentally.”
Helpful Hints for Caregivers
- Know your rights - The Family and Medical Leave Act requires most employers to provide up to 12 weeks of unpaid, job-protected leave to care for family members. Check with your employer’s HR department for more details.
- Stay informed – When making healthcare decisions for someone, be sure to consult their medical team for support and guidance. In a journal, create a list of questions for them and write down the answers so you can refer to them again.
- Take care of yourself - Take some time for you even if it’s just a few minutes each day. Have dinner with friends, read a book, exercise – anything you enjoy doing.
- Speak up! Join ALF’s advocacy efforts to educate Members of Congress about the medical, emotional and financial impacts of liver disease. Together we can increase federal research funding, public health education, and improved patient treatments and coverage for liver disease.
Stacey said, “The emotional side of being a caregiver is equally exhausting. One morning, Zach received a call that there was a liver waiting for him. He rushed to the hospital only to be told the deceased’s liver enzymes were too high and they could no longer perform the surgery – can you imagine the heartbreak and anguish he experienced? It was 2:30am and there was no one there for him - not even me.”
There is a lack of support and knowledge for patients, families and caregivers living with liver disease. Stacey said, “Most people understand and accept kidney donation but for some reason, when it comes to liver disease, there is a lack of education. I hope we can shine light on liver disease and its rippling affects. I also hope to bring more awareness and support to the struggles of being a caregiver. Until then, I will keep fighting for Zach and every other person affected by liver disease.”
Stacey is an active ALF advocate and Liver Life Walker. This year, she and her family raised over $6,500 for liver disease research. November is national Family Caregivers Month. For more information about caregiver resources or becoming an advocate, visit liverfoundation.org.