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The Caregiver Impact: A Vital Part of Healthcare

Carly FlumerCarly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such […]

Braving the Caregiver Storm

As I sit here looking out the window at the snow that is beginning to fall, I am transported back to January 2011 when I was 28 and my 35 year old husband was diagnosed with leukemia. I was thrown into a snow storm I was definitely not prepared for nor did I think I’d be in. I had little visibility in front of me as the snow fell and flew all around me. I knew cancer was something that had been around for a very long time, and that the knowledge was out there…but as a young woman, I was standing in my own little snow globe without boots, a scarf, or mittens. I had my marriage that I wrapped around me like a warm coat, and held onto that while I attempted to find resources to guide me thorough this new life of mine.

My days of working full-time, then coming home to relax had been exchanged for quick trips to let the pets out after work, then jetting over to the hospital to spend a few hours with my husband before driving back home to spend a few minutes with my pets before going to bed and starting the cycle all over again. I was exhausted and had to figure out how to get warm, protect myself from the elements and survive!  However hard and unknown it all was, I found comfort in knowing that although I was the only young person I knew to go through what I was, millions of people had done it before and I could too. I didn’t know how I was going to do it, but knew I would somehow.

I began to gather resources online by spending hours upon hours late at night on the internet. I looked up financial resources to help with gas cards, how to navigate insurance, disability, and requested all of the brochures possible from the Leukemia and Lymphoma Society and the American Cancer Society. As I gained more knowledge, I felt myself slip into a warm pair of boots, feeling like I had more secure grounding. I was better informed and felt more armed to walk down the road of the cancer journey, despite still not being able to see through the masses of swirling snowflakes and at times, sleet.

I quickly realized that one of the most major parts of this journey was to take care of myself. At first it felt somewhat selfish, as my husband was the patient…however I had to figure out what worked best to keep my batteries charged and running, even when the snowy road threw my tires into a ditch. I started creating blog posts to inform and update our supporters on CaringBridge and Facebook, which allowed me to feel safe, supported and heard, while still having boundaries to not be overloaded via text, phone and email from all of those that wanted to know how things were going. This social support provided the needed warmth on my hands, giving me mittens to keep from getting frostbite from the dangerously low temperatures here in Minnesota.

I learned that taking time away for myself whether it be a cup of tea with a friend, taking a nap, a walk or binging a favorite TV show, was what I needed to do to be able to recharge my batteries to be in the right mental and physical space to be there for my loved one. Caregiver burnout is very real, and I often burned the candle at both ends, learning the hard way why self-care needed to be more of a priority in my life.  I don’t think that our supporters and loved ones can fully grasp or understand why it is so important to go to dinner with friends or to a movie or concert (outside of Covid-19 times of course), when your loved one is in the hospital or stuck at home.  What those that aren’t going through what you are in this crazy world of cancer don’t know is how hard it is to balance it all. Cancer is the belligerent relative at the holiday gathering that no one really knows how to deal with or control. They are there for better or worse, and it’s up to you to know how to balance and work with what you’ve been given.  When you take the time to understand and embrace what is….you can feel more at peace in taking the cancer process day by day, if not hour by hour.  You have to let the little things go, your house may not always be sparkly clean and everything may not get done- but the cancer patient has everything they need and you are a more balanced person to support them. Once I figured out how to balance things better, a scarf was wrapped around my neck, and I was better prepared for the snowstorm.

Cancer is definitely not something that is asked for, however with adequate resources, knowledge, social support and the practice of self-care, it is all doable.  I was able to take my experience as a cancer wife, then widow and beyond to create a book to share with the world on how I navigated the cancer world one day at a time, and live today with such thankfulness for the journey that brought me here today. I still absolutely love snow, and am excited for the snowstorm that is supposed to hit this afternoon with 4-7 inches, as I now know the ways to make sure I am storm ready to walk through the journeys in front of me, as you too, walk through your own snowstorms as well.


Notable News: November 2018

November is National Lung Cancer Awareness Month, and if ever there were a cancer that needed an awareness month, it’s lung cancer. Sometimes referred to as the invisible cancer, lung cancer is a disease caught up in a smoke cloud of misconceptions, and those misconceptions can prevent patients from early detection, treatment, and support. Several of the myths and misconceptions about lung cancer are addressed and dispelled in a recent article at fredhutch.org. One of the main myths is that you only need to worry about lung cancer if you are or ever were a smoker. That’s simply not true. In fact, people who have never smoked can get lung cancer, and it can be a genetic disease. Other myths include the belief that there are no early detection screening processes and that there has been no progress in lung cancer research. While it’s true that other cancers seem to have more screening options and better prognosis, advancements are being made in lung cancer. Organizations such as Patient Empowerment Network are making progress in building awareness and reducing the stigmas about lung cancer. See the rest of the myths and misconceptions and how they are dispelled here.

There is nothing sweet about having lung cancer, but there may be a sugary clue that could lead to earlier detection, reports forbes.com. Researchers have discovered that early-stage, non-small cell lung cancer (NSCLC) tumors and precancerous lesions produce high levels of a molecule that they use to consume sugar to help fuel their growth. The molecule, called SGLT2, could be used to detect early stage NSCLC. Researchers also found that a diabetes drug, which blocks SGLT2, also prevented tumor progression in mice, which shows promise for possible future treatment of NSCLC. Further studies of SGLT2 could hinder the development of malignant NSCLC, and more information about this hopeful development can be found here.

Another hopeful lung cancer development comes in the form of a hot needle, reports dailymail.co.uk. The treatment, called radio frequency ablation, is being used to diagnose and treat difficult-to-reach tumors. In addition to being able to destroy the tumor by heating it up with radio frequency energy, doctors are able to use the needle to remove part of the tumor for biopsy. The needle works in place of attempting to access the tumors through invasive surgery. The hot-needle treatment is considered safe for repeated use, and a report showed that half of the patients treated with the hot needle survived at least five years. More information about this hot new treatment can be found here.

We would be remiss if we didn’t note that November is also National Family Caregiver’s Month. There are approximately 43.5 million unpaid caregivers in the United States and they are a critical component of a cancer patient’s journey. It is important for caregivers to make sure they are practicing self-care as well, and there are a number of resources available to them to help ensure caregivers have the information they need to care for their loved ones and themselves. The PEN Path to Patient Empowerment guide provides resources for care partners, including links to the Family Caregiver Alliance website and the American Cancer Society Caregiver Resource Guide. Chock full of information for caregivers about caregivers and the patients they care for, these resources are a must have for any caregiver and can be found here and here.

Oh, and November is also the month where we give thanks. Happy Thanksgiving from the PEN Family to your Family. We are thankful for you!

National Family Caregivers Month 2017

National Family Caregivers Month began in 1994 as a week-long event inaugurated by the Caregiver Action Network (National Family Caregiver Association). Now it is a month-long event – celebrated each November – as a time to recognize and honor family caregivers across the country. The theme for this year’s National Family Caregivers Month is “Caregiving Around the Clock”. Celebrating Family Caregivers during NFC month enables all of us to:

  • Raise awareness of family caregiver issues
  • Celebrate the efforts of family caregivers
  • Educate family caregivers about self-identification
  • Increase support for family caregivers

In this country alone, 43.5 million people have provided unpaid care to an adult or a child in the last 12 months. The majority of caregivers (82%) care for one other adult, while 15% care for 2 adults, and 3% for 3 or more adults. The value of services provided by informal caregivers has steadily increased over the last decade, with an estimated economic value of $470 billion in 2013, up from $450 billion in 2009 and $375 billion in 2007. So, what can we do to support caregivers manage the emotional and physical demands of caregiving? Here are 10 top tips for family caregivers from The Caregiver Action Network:

  1. Seek support from other caregivers. You are not alone!
  2. Take care of your own health so that you can be strong enough to take care of your loved one.
  3. Accept offers of help and suggest specific things people can do to help you.
  4. Learn how to communicate effectively with doctors.
  5. Caregiving is hard work so take respite breaks often.
  6. Watch out for signs of depression and don’t delay getting professional help when you need it.
  7. Be open to new technologies that can help you care for your loved one.
  8. Organize medical information so it’s up to date and easy to find.
  9. Make sure legal documents are in order.
  10. Give yourself credit for doing the best you can in one of the toughest jobs there is!

Below are some of our most popular caregiver information and resources.

Importance of Caregivers 

Caregiving Tips

Caregiver Awareness at the Patient Café®

Treatment Diaries – anonymous diary entries from caregivers


http://caregiveraction.org/resources/10-tips-family-caregivers

The Importance of Caregivers

In honor of November being National Family Caregivers Month, we wanted to highlight the importance of family caregivers. A family caregiver is a person who provides any type of physical and/or emotional care for an ill or disabled loved one at home. Loved ones in need of care include those suffering from a physical or mental illness, disability, substance misuse or other condition. In most cases, the primary caregiver is a spouse, partner, parent or adult child. Caregivers often take on the responsibilities of the patient while still providing for themselves and other family members. Some important tasks and roles of a caregiver are:

Advocate. Sometimes patients are not completely forthcoming with their physical or emotional needs and tend to downplay their pain when speaking with doctors. Caretakers play an important role in honest communication between doctors and patients by upholding patient preferences for treatment options when the patient cannot or will not speak for him or herself.

Personal Care. Caregivers may help with daily activities such as dressing, bathing, toileting, or arranging child care.

Household Tasks. Caregivers are often in charge of preparing meals, doing chores or laundry, shopping for groceries or paying bills.

Emotional Support. When faced with a serious diagnosis, patients are often overwhelmed by the emotional and physical turmoil. Caregivers are tasked with the important duty of providing support and encouragement for the patients as well as themselves. Communication is key in the relationship between a caregiver and a patient. It is important to both openly share feelings and remain empathetic to the situation.

Medical Care. Caregivers must be present, take notes, ask questions and assist loved ones in making decisions with the care team. They may also be responsible for administering, ordering, and picking up medication, providing transportation to appointments, and dealing with scheduling, billing, or insurance issues. Caregivers may also assist with other medical processes such as physical therapy, injections, feeding tubes, etc.

There are close to 65 million caregivers in this country alone. The estimated monetary value of family caregivers’ unpaid contributions was estimated $450 billion in 2009, though the true value of caregivers far exceeds any monetary worth. In honor of National Family Caregivers Month, we would like to thank all of those who aid in the care of those in need.

Resources for Caregivers: National Alliance for Caregiving


References:

http://www.netofcare.org/content/getting_started/

http://www.cancer.org/treatment/caregivers/copingasacaregiver/if-youre-about-to-become-a-cancer-caregiver