November is National Family Caregiver Month!

Family Caregivers Month
Dad and Maria OSU April 2013 Maria Elston Barrett with her Dad, Ed Elston.

 

Written by: Maria Elston Barrett

Daughter of Brain Cancer Warrior, Ed Elston
BrainCancer.org website & social media channels manager, Patient Advocate, Seattle Brain Cancer Walk Committee Member, Wife, and Mom of 3! 
 

Those of us who have been impacted by brain cancer know how very important the job of being a family caregiver is. We know that our loved ones who battle brain tumors/cancer need a loving and watchful advocate to ensure that our loved ones are properly taken care of, whether our loved ones remain at home or are cared for in an assisted living or nursing home atmosphere.

I became a family caregiver in 2011 after my own father’s diagnosis of a Glioblastoma Multiforme (GBM) brain tumor. I was taking care of my three children and going about my life as a wife, mother, and teacher when my father’s brain tumor diagnosis changed the path of my life forever. Becoming his primary caregiver was unexpected, overwhelming, and rewarding all at the same time. I knew I would always be the one to care for my parents in their elderly years, but this had come so much sooner than I had expected. My dad was very active and healthy when he was diagnosed, so the shock took some time to absorb. I took on the role of his primary caregiver without hesitation and shared this role with my mother to provide her relief.

My dad moved in with my family and I immediately following his brain tumor diagnosis.  We didn’t even think twice about it.  We were all in a focused mode of “we’ll do whatever is necessary”.  Following dad’s surgery he continued to live with us during his 6 weeks of radiation treatment.  I drove him many times to those appointments and had valuable time sitting with him in the waiting room, while we got to know other patients.  He moved back home to Eugene, Oregon the day of his final radiation treatment and meeting with his neurosurgeon.  That was a hard day.  I knew time wasn’t on our side and wanted to spend as much time as possible with him.

Eight months later, Dad moved back up to Seattle and in with me prior to getting into a Neuro-Rehab program nearby.  Mom needed some respite as the 8 months of caregiving for Dad had taken a physical and emotional toll on her at age 74.   We had three weeks in the Rehab program and although I expected him to come out more himself and stronger, what I found was that he needed more help in all of his daily tasks.  They focused on retraining him to be safe when walking, sitting, getting in and out of bed, getting dressed, showering, etc… I went through all of the training too, so that I could safely help him as well.

The recommendation was for him to try an Assisted Living facility, so we tried one nearby my home, so that we could easily visit and see him as much as possible.  This worked out well and he seemed to enjoy the activities and events they provided for him.

In December of 2012, Dad went back to Eugene and moved into another Assisted Living Facility a few miles from he and Mom’s home.  His needs grew more and more as the months went by.  In September 2013, we could tell that the changes were starting and that his tumor had most likely recurred.  Dad fought a valiant and brave battle, passing on December 16th, 2013 with his family surrounding him.

As we approach the one year anniversary of his passing, I have had a lot of time to reflect on that time I spent with him during those two years.  Being one of his caregivers during that time was an incredible honor and also a great deal of hard work.  I would do it all over again in a heartbeat.  I know he was thankful that his entire family was there to help him when he needed us the most.

I know the physical and emotional toll that being a caregiver takes on a person from both my own and my mother’s point of view.  The family caregiver often faces depression, physical exhaustion, lack of sleep, and anxiety.  Taking care of ourselves was not the focus, but it needed to be.  Many caregivers face this daily.

We hope that the resources we provide on our website at BrainCancer.org as well as in this blog and via our Facebook/Twitter pages, will help these family caregivers as they do this very important work for their loved ones.  They are not alone and there is help available.  It is an important message to share and we hope that they hear this message during this month when we celebrate the Family Caregiver!

November celebrates the Family Caregiver every year! The theme for 2014’s Family Caregiver Month is, “Care Comes Home!”

The Caregiver Action Network published the following details about how the Family Caregiver Month came to fruition.

Care Comes Home

Your loved one’s care does not always take place in hospitals, or nursing homes, or doctor offices, or medical clinics. Most care actually occurs in the home – and that’s a good thing. People are healthier at home and health care costs are reduced. Family caregivers have the best interests of their loved ones at heart. But caregiving at home can take its toll and it certainly takes a lot of planning. The Nation’s 90 million family caregivers are front and center in providing care every day – enabling their loved ones to stay at home longer where they are happier and healthier.

• Most adults would prefer to age in place. 90% of adults over the age of 65 would prefer to stay in their current home as they age. Family, friends, and neighbors provide 80% of the care for the elderly.

• Two out of every 5 adults are family caregivers. 39% of all adult Americans are caring for a loved one who is sick, disabled, or living with frailties of old age. That’s up from 30% in 2010.

• Family caregivers are the only people who are present with patients in all care settings. Patients may have more than one doctor; nurses change shifts; prescriptions may be filled at different pharmacies. But family caregivers are there as full partners with their loved ones through it all.

• Complex care happens in the home. Almost half of family caregivers perform sophisticated medical/nursing tasks for their loved ones – such as providing wound care and operating specialized medical equipment – and up to 70% manage medications for their loved ones.

• Caregiving affects the whole family. Men are now almost as likely to say they are family caregivers as women are (37% of men; 40% of women). And even 36% of younger Americans between ages 18 and 29 say they are family caregivers!

• Many families make changes at home because of their caregiving responsibilities. Some families have to tighten their belts at home to pay for out-of-pocket caregiving costs (an average of $5,500 per year). And many more have to make home alterations to ensure safety, security, and cleanliness for their loved ones.

During National Family Caregivers Month,
we celebrate the valuable role that family caregivers play when
Care Comes Home!

The Caregiver Action Network (previously known as the National Family Caregivers Association) began promoting a weeklong celebration of family caregivers in 1994. President Clinton signed the first presidential proclamation in 1997 and every president since — Democrat and Republican alike — has issued an annual proclamation honoring family caregivers. As awareness of family care giving grew, National Family Caregivers Week evolved into National Family Caregivers Month.

  • Day in and day out, 90 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care. Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen.
  • The Caregiver Action Network coordinates National Family Caregivers Month as a time to thank, support, educate and empower family caregivers. 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

The Caregiver Action Network (previously known as the National Family Caregivers Association) began promoting a weeklong celebration of family caregivers in 1994. President Clinton signed the first presidential proclamation in 1997 and every president since — Democrat and Republican alike — has issued an annual proclamation honoring family caregivers. As awareness of family care giving grew, National Family Caregivers Week evolved into National Family Caregivers Month.

If you’d like more information about Family Care giving Month, please go to

  • http://www.caregiveraction.org/news/?news_id=79
  • To find vital resources or support for the family caregiver, please visit the following sites.
  • http://caregiveraction.org
  • http://www.pinterest.com/braincancerorg/caregiver-resources
  • wishmewell.com (To connect with other caregivers of cancer patients)

In honor of National Family Caregivers Month—and to encourage caregivers to seek out support—the following companies have collaborated to provide a free online resource for cancer caregivers at www.helpforcancercaregivers.org
Caregiver Action Network
CancerCare
Indiana University
Johnson & Johnson
Michigan State University, College of Nursing
Millennium: The Takeda Oncology Company
Onyx Pharmaceuticals, An Amgen subsidiary
WellPoint, Inc.
WellPoint Foundation

How will you honor the family caregivers in your life? Please feel free to respond below with your comments or questions.

 

 

 

 

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All content provided on this blog is for informational purposes only. The owner of this blog makes no representations as to the accuracy or completeness of any information on this site or found by following any link on this site. The owner will not be liable for any errors or omissions in this information nor for the availability of this information. The owner will not be liable for any losses, injuries, or damages from the display or use of this information.

			

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