A Caregiver’s Journey: The Day I Became a Caregiver

Do you remember the day your identity expanded from son, daughter, spouse or friend to include “caregiver?”   Maybe it didn’t happen all at once.  Or maybe you didn’t fully realize the switch was happening till later, as you got more experience and the contours of your “caregiver era” came into focus.  It took some time, but now that Mom’s been gone for three years, I know the exact moment that my identity changed.

It was an early Spring day in early 2009.  We’re on the south shore of Long Island, New York.  Dad had passed in December (I’m not ready to talk much about that experience quite yet), and I was up from my home in Maryland to help Mom get ready to move down to an independent living apartment close to me and my sister.  Mom and Dad had sold our family house years ago and had lived in an apartment in our hometown of Rockville Centre for 20 years or so.  There was a lot that was already done.  Movers had been hired.  Boxes had been packed. Travel arrangements had been made for flying Mom down to Reagan National.

In retrospect, maybe all these tasks could be labeled “caregiving,” but that’s not how I was experiencing it right then.  Dad’s constant refrain to me during his gradual decline was “take care of your mother.”   In my mind, all I was being was a good son.

I had been there a few days, packing boxes and preparing Mom for her move.  It was now two days before Mom’s departure.  I could tell that Mom, though she put on brave face, was nervous and upset about all this change.  At 86, she was a cancer survivor, but was in pretty good shape.  She was still walking without help, still the avid reader, still the nature-lover, and still the sunny personality that made her a pleasure to be with.  I was confident that she would adjust, maybe even thrive, in her new independent living apartment.

Mom was going to miss two close friends, but most of her and Dad’s many friends had died or moved to warmer climes.  But what she was going to miss most by far was her beloved beach.   Mom grew up in Brighton Beach, Brooklyn and had never lived far from the ocean.  You could smell salt in the air in Rockville Centre.  Swimming in the ocean, sunbathing and reading her books on a lounge chair along the shoreline were her greatest passions.

We were scheduled to return her leased car to the dealership – the last big chore – the following day and she asked me if we could go for one last visit to the ocean.  For reasons I don’t remember, I was not allowed to drive her leased car, so the idea was that she would drive her car and I would follow behind her in mine.  It’s a trip she had made a thousand times.  What could go wrong?

Don’t worry.  Nothing terrible happened.  But I remember something terrible almost happened about 10 times.  Driving behind Mom on those two drives back and forth to the beach was both terrifying eye-opening. Mom’s driving skills were now at the “look straight ahead, stop at lights, then go” level.  No looking in mirrors, side or rear.   No awareness of pedestrians.   The only good thing about driving right behind Mom was that I was literally protecting her, er, rear end.   At least once I yelled “look out!” at my windshield like a teenager yelling at the movie screen during a horror movie.  Her maintaining a speed 10 miles per hour below the limit made it feel more, not less scary, as other drivers had to adjust.

Mom got her last visit to her beloved beach.  She would NEVER drive a car again.  All was well.  I had a few more gray hairs.

My mind was a whir.  How long had THIS been going on?  What else had I missed?  What did it mean for how Mom would fare living on her own?  I didn’t fully understand it at the time, but on that Spring day my identity changed.  I was no longer “just” a good son, helping out when I was needed.  I was a son-caregiver, 24/7.

My journey had begun.   Do you remember when yours began?   I’d love to hear from you.

See your comments to marketing@capitalcaring.org.


Capital Caring Launches New Website

(Falls Church, VA) Oct. 1, 2018 - Capital Caring is inviting visitors to explore its new website (www.capitalcaring.org) which has been redesigned to provide the ultimate user-friendly experience with improved navigation and functionality.

As one of the largest and oldest non-profit hospice and palliative care providers in the mid-Atlantic region, Capital Caring serves communities from Prince George’s County, Maryland, to Richmond, Virginia including Washington, DC and some 1,400 patients and families each day facing advanced illness.

“Patients struggling with serious illnesses and their caregivers need a special kind of care and support,” said Tom Koutsoumpas, interim CEO of Capital Caring. “They need information and guidance on the best care options tailored to their condition, that enables them to remain as comfortable and active as possible in their own home, or wherever they call home, and Capital Caring can offer them the relief and support they need,” he continued.

Visitors to the site will now have access to updated content on common medical conditions that most frequently benefit from hospice care, with downloadable brochures on topics such as Caring for a Loved One with Dementia, and How to Care for Elderly Parents.  Additional new features include a Caregiver Blog, videos showcasing our special inpatient facilities, comprehensive information on how hospice care is paid for and eligibility requirements, along with opportunities to volunteer and become part of the Capital Caregiver Community.

“Capital Caring’s website will include a Community Calendar of upcoming events throughout our service area, such as movie screenings, support groups, our annual gala, and Caregiver Expo, and be updated regularly with information about our various programs and services, and personal stories about how our care teams and volunteers have made a difference in the lives of our patients and families,” said Koutsoumpas.

The newly designed website is the launch pad for Capital Caring’s enhanced digital marketing program as we seek to reach more members of our community who are unaware of the benefits of hospice and palliative care for people living with advanced and life-altering illness.


Helping youth heal after the death of a loved one

Capital Caring Prince George’s County to hold grief camp for youth who have suffered the loss of a family member

When a family member dies, children react differently from adults as they deal with feelings of loss, emotional distress and, in some cases, depression. For the past two decades, Capital Caring has embraced grieving children by offering support at local Point of Hope Camps.

On Aug. 11, Capital Caring Prince George’s County will host a Point of Hope Camp for children ages 6 –15.  The half-day camp is provided at no cost and intended for children who have had a close loved one die recently. Campers will partake in expressive arts, crafts, movement therapy and connect with others who have lost a loved one. The camp will be held at Watkins Park Nature Center in Prince George's County from 9 a.m. to 1 p.m.

More about Capital Caring Point of Hope Camps
Our Point of Hope Camp staff are trained and licensed social workers, counselors and chaplains who provide support to those facing loss throughout their emotional journey. The camp offers grieving adolescents the opportunity to connect with others who have also suffered a loss in a safe, therapeutic environment. All activities that campers are engaged in are designed to be fun and help campers work through the grief process by building trust, self-esteem and skills to cope with their recent loss.

ABOUT CAPITAL CARING

Capital Caring’s mission is to provide the highest quality advanced illness care with dignity, respect and compassion. Since our founding in 1977, we have grown into one of the largest and most experienced nonprofit providers of hospice care, palliative care and bereavement counseling services in the nation. In 2017 alone, we served nearly 7,000 hospice patients and provided more than $3 million in charity care to those who had nowhere else to turn.
Capital Caring serves families and patients throughout Northern Virginia, as far south as Fredericksburg and Richmond, as well as Prince George’s County, Maryland, and DC. To learn more about Capital Caring, visit www.capitalcaring.org or call 800‐869‐2136.


Making Memories: Capital Caring Sponsors Taylor Swift Concert Experience

MEDIA ADVISORY – July 6, 2018

MEDIA CONTACT: Nancy Cook, VP, Marketing and Communications, Capital Caring ncook@capitalcaring.org / 703-531-6241

EVENT
Children who have suffered the loss of a parent or loved one, along with family members or guardians, will be attending the July 10, 2018 Taylor Swift concert thanks to Capital Caring and its community partners. Capital Caring (one of the largest and oldest non-profit hospice organizations in the mid-Atlantic region) has embraced grieving children and teens for more than two decades by offering grief support through specialized bereavement programs held in individual Capital Caring neighborhoods across the MD, VA and D.C. metropolitan region. Through its community partnership with the Washington Redskins, Capital Caring has access to a private suite at FedEx Field for the concert. Financial gifts from Apple Federal Credit Union and other donors will allow 17 children and their guardians to be treated to an all-expenses-paid experience, including transportation, food, concert tickets and souvenirs. Transportation is being provided courtesy of DC Trails.

DATE/TIME Tuesday, July 10
Concert will begin at 7 p.m. EDT LOCATION FedEx Field, 1600 Fedex Way, Landover, MD 20785 ABOUT CAPITAL CARING Capital Caring’s mission is to provide the highest quality advanced illness care with dignity, respect and compassion. Since our founding in 1977, we have grown into one of the largest and most experienced nonprofit providers of hospice care, palliative care and bereavement counseling services in the nation. In 2017 alone, we served nearly 7,000 hospice patients and provided more than $3 million in charity care to those who had nowhere else to turn.
Capital Caring serves families and patients throughout Northern Virginia, as far south as Fredericksburg and Richmond, as well as Prince George’s County, Maryland, and DC. To learn more about Capital Caring, visit www.capitalcaring.org or call 800‐869‐2136.


Capital Caring to Host Briefing on Capitol Hill

MEDIA ADVISORY

Mid-Atlantic’s Largest Hospice to Host Briefing on Capitol Hill and  11th Annual Hospice Comes to Washington Reception
C-TAC and Dentons law firm to be honored for championing advances in care

WASHINGTON, DC – In recognition of the 11th annual Hospice Comes to Washington Reception, and in observation of Older Americans Month, Capital Caring – the largest nonprofit hospice provider in the mid-Atlantic – invites the community to a policy briefing on Capitol Hill May 9, and the 2018 Hospice Comes to Washington Reception and Networking Event on May 10.

At the May 9 policy briefing, Capital Caring President and CEO Malene Davis will moderate a panel discussion on Policy, Progress and Future Prognoses: Legislative Options to Improve Care for Those with Serious, Advanced Illness. Congressional leaders and a broad, diverse set of policy experts – from consumers to patient advocates, hospice innovators and coalition leaders – will share information about federal policy options to improve care for those with serious advanced and life-limiting illnesses.

Invited keynote speakers include: Senator Tammy Baldwin (D-WI); Senator Johnny Isakson (R-GA); Senator Mike Rounds (R-SD); and Representative Earl Blumenauer (D-OR).

This briefing will be held in partnership with the Coalition to Transform Advanced Care (C-TAC); The American Heart Association; National Partnership for Hospice Innovation; and the National Coalition on Health Care.

On May 10, Capital Caring will host the 11th Annual Hospice Comes to Washington. This reception and networking event will kick-off a month-long initiative honoring older adults, reshaping the dialogue on care and advancing the agenda to better serve all Americans now and for generations that will follow.

During the reception, the Champion of Care Award will be presented to C-TAC for the organization’s work to transform care for all Americans facing advanced illness. Additionally, the Community Impact Award will be presented to Dentons, the worlds’ largest law firm, for the company’s efforts in supporting Capital Caring by providing resources to help ensure all patients in need have access to hospice, palliative care, and bereavement support.

Policy Briefing: Legislative Options to Improve Care for those with Advanced Illness - Open to public and media

When
Wednesday, May 9 from Noon to 1:30 p.m.

Where
Russell Senate Office Building room 485

Panel                          

  • Keysha Brooks-Coley, Vice President, Federal Advocacy and Strategic Alliances,   American Cancer Society Cancer Action Network
  • Tom Koutsoumpas, President and CEO, National Partnership for Hospice Innovation
  • Andrew MacPherson, Senior Policy Advisor, Coalition to Transform Advanced Care (C-TAC)
  • John Rother, President and CEO, National Coalition on Health Care

Hospice Comes to Washington Reception and Networking Event – Open to public and media

When             
Thursday, May 10 at 6:30 p.m., Concert begins at 7:30p.m.

Where:    

InterContinental Washington D.C. – The Wharf

801 Wharf Street Southwest

Washington, DC 20024

  • Register for May 9 Policy Briefing
  • Register for May 10 Hospice Comes to Washington Reception
  • More details: Contact Katie Tram-Lam ktranlam@capitalcaring.org.

ABOUT CAPITAL CARING

For 40 years, Capital Caring’s mission has been to simply improve care for those facing life-limiting illness through direct support of patients and their families, public education, and advocacy. Since its founding by committed volunteers in Northern Virginia, Capital Caring has provided hospice, palliative care, and counseling to more than 120,000 patients and their families. Nearly 800 employees and 1,000 volunteers provide these services to nearly 1,400 moms, dads, and kids every day in Maryland, Virginia, and Washington, DC. As one of the nation's oldest and largest non-profit providers of hospice and palliative care, Capital Caring supports all those who need care, regardless of their ability to pay, and is proud to provide nearly $3.3 million in charitable care to families in need annually.