Hospice
It’s not just for old folks
Hospice isn’t just for terminally ill old people…
“Hospice gave us the gift of time.”—Marie, Harvey’s Mom & Owner of Genuine Connections Psychotherapy
Hospice offers a WIDE range of FREE and low-cost services for the entire community–not just for old folks who are dying.
As the parent of a chronically ill and medically fragile child, it was SCARY when the hospital team at Johns Hopkins Pediatric Intensive Care Unit in Baltimore started mentioning, “quality of life,” “we’ve done all we can do” and “hospice” during our last staycation in the summer of 2015.
My family and I were DISTRAUGHT at the idea that we were “giving up” on our four year old warrior, Harvey, by signing up for the program that meant death was imminent–-hospice. Pediatric hospice.
I didn’t even know pediatric hospice was a “thing.”
As we learned more about hospice, specifically pediatric hospice, we heard over and over that “hospice isn’t just for old people” and “going on hospice doesn’t always mean someone is about to die.” Pediatric hospice was different such that it was designed to be flexible and provided much needed support for families going through the hardest time in their lives. Pediatric hospice patients were allowed to bounce on and off hospice as their medical supports dictated and, should the child find the road to recovery, they could even graduate from hospice altogether.
What?! I had never considered that a hospice patient could exit hospice in any way other than by death. I was hopeful.
And just like that, hospice morphed from SCARY to SANCTUARY.
Sanctuary?
“Hospice is for the sickest of the sick…how can you say it’s sanctuary?”
Valid point. My experience with hospice challenged prior beliefs I held of what hospice and end-of-life-care was or what it could be. The Hospice of the Chesapeake team stepped into our lives when we were running low on all of our resources–except love. We all understood that we were running out of time. And that’s exactly what hospice gifted us.
Hospice gave us the gift of time.
In my opinion (one I share with many of you, I’m sure), time is the most precious gift anyone can give or receive. The hospice team gave us the gift of time when they took over medication management of all of Harvey’s medications. That service alone saved us hours spent on phone calls to chase down specialty medications that were routinely out-of-stock and needed prior authorizations due to their cost and level of specialty.
Hospice gave us the gift of time and supported a reduced-stress environment when they FULLY FUNDED Harvey’s many specialty medications. They covered ALL of the copays and out-of-pocket costs for life-saving medicine that Harvey required several times a day, every day. Not to mention, they saved us from the headache and stress of driving to specialty pharmacies after work or on the weekends. Sometimes we had to drive HOURS to get medications that Harvey needed. Not anymore.
Hospice gifted us time again when our assigned nurse would COME TO THE HOUSE for blood draws. Many of Harvey’s medications were toxic if taken too long or at too high a dose. However, he needed high doses to treat his rare seizure disorder, Lennox-Gastuat Syndrome. Before hospice, we spent hours each month driving to specialty pediatric phlebotomy labs so that medication levels could be monitored. After hospice, hours upon hours of city traffic were no longer on regular rotation. Instead, a gentle and kind nurse came to our house.
Hospice gave us the gift of connection.
Hospice gifted us time and connection when our assigned Social Worker brought materials to our house to create meaningful memories with Harvey. One of my most treasured possessions is the Brothers footprint canvas shown in the photo below. A sweet and tangible momento of a brotherly bond. Our Social Worker began the “Make a Wish” process with us but we sadly did not get to complete the process before Harvey’s death.
The pediatric hospice team stepped in when we were running low on resources—all of them, except love. They worked hard to reduce demands made on us—the demands that took so much time—so that we could spend whatever time we had left together. With less stress and simple joys. It was most definitely, sanctuary.
Sadly, our journey with the pediatric hospice program was brief. Harvey did not find the road to recovery and was not exited out of services because he got better. Harvey died at home on September 12, 2015. Two months after joining the hospice family, Harvey left this world for some place beyond.
We are forever grateful for the quality time we had with Harvey in those last tender months. We realized though, that our journey with hospice had only just begun.
Stay tuned for more reflections on my experience with grief, bereavement support and volunteering with hospice.
If you’d like to stay in touch, consider signing up for the Genuine Connections Psychotherapy email list.
Spoons were Harvey’s favorite toy. He could easily grab them and bang them on whatever was in reach. It was one of his favorite ways to communicate and have fun. After his death, several family members honored this memory with tattoos of Harvey’s favorite spoon.
One of my most treasured possessions is the Brothers footprint canvas shown in the photo alter photo. It serves as a sweet and tangible momento of a brotherly bond.
Hospice Resources in Maryland
This section highlights some upcoming events offered by Hospice of the Chesapeake. HOC serves Anne Arundel, Prince George’s, Charles and Calvert counties in Maryland. HOC is a medicare certified non-profit organization that uses grants, donations and benefactors to fund their programming. It was that funding that gave my family the gift of time with Harvey. Their non-profit model and our experience called me to continue my relationship with hospice well after Harvey’s death. I knew that when I was ready, I wanted to give back and be part of their mission.
Included in hospice programming are bereavement supports ACROSS THE LIFESPAN. That’s right, hospice offers grief support for the ENTIRE FAMILY and continues to support families after the death of their loved one. As a way to honor Harvey and my own grief journey, I volunteer in my role as Harvey’s Mom with the children’s programs. Its no accident (thanks Harvey) that I am also professionally qualified, should my expertise be in need by the HOC team.
If you’d like to attend a group or event offered by hospice, check out their CURRENT PROGRAMMING.
Some events are even co-facilitated by me, Marie. Those events are listed below.
Upcoming Hospice of the Chesapeake Events
Co-Facilitated or Supported by Marie
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Nature Informed Grief Therapy Workshop for Children & Teens (6-18 yrs)
Please have participants arrive ready to spend time outside and get dirty! This is an opportunity for kids and teens to connect with each other and the natural world to find support in their grief process.
HOC Pasadena Campus
Facilitated by Marie, LCPC & Alicia, LMSW of Hospice
Saturday, April 27, 2024
1:00 pm - 3:00 pm
$10
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Stepping Stones: A 4-Week Grief Support Group for Children & Teens (6-18 rs)
This group is for newly bereaved children and teens whose loss occurred within the last 12 months.
The group will focus on normalizing grief reactions, teaching coping skills and providing opportunities to remember the loved ones that have died.
Groups will be divided by age and grade level based on enrollment.
HOC Pasadena Campus
May 7, 14, 21, 28
6:00 pm - 7:30 pm
$40
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Camp Nabi: An Overnight Grief Camp for Children & Teens (6-18 yrs)
Join us for a full weekend overnight camp experience for children who have experienced the death of a loved one.
With a full team of counselors and trained volunteers, campers will participate in activities focused on memorializing their loved ones, learning coping skills in small groups, and using integrative arts to help kids express their grief. Of course, this also will include fun camp activities, like swimming, field games, ropes course, and more.
Arlington Echo Outdoor Education Center in Millersville, Maryland
August 7-11, 2024
$100*
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All Events Require Prior Registration with Hospice
To learn more or register:
888.501.7077
Griefinfo@chesapeakelifecenter.org
VOLUNTEERS
WANTED
Supporting Camp Nabi 2023 was truly an honor. I elected to serve as a Big Buddy and was paired with two teen grievers for the entire weekend. To be part of their healing journey was a privilege that I will remember for a lifetime.
Some volunteers have been returning to camp for 20+ years. Some even attended camp as a child for their own grief and now they participate as adults. Camp Nabi can be described as unique, special and FUN!
This year I’m helping HOC find volunteers so Camp Nabi 2024 can run smooth and we can support even more young grievers (read as—we need help!).
If you are looking for a worthy cause to support, reach out to the HOC team (see flyer in image) and learn how YOU can help. You don’t need to have a former relationship with hospice and you aren’t required to stay overnight. Contact them (or me) to learn more!