Understanding options for end-of-life care can be confusing. The following provides information about where Hospice at home, nursing home care, and social model home care – where they overlap and where they differ.
Tag: Palliative Care
Why I care about Caring Hearts and Hands of Columbia
When my husband joined our church, he got to know a woman named Deborah. Deborah took to my husband immediately. As soon as she heard he worked in IT, he became her de facto personal expert on all things technical. He helped her with her phone settings and her internet connectivity at home. And, as you do in families, I came along to help out when a modem needed attention. And so did our kids.
Deborah became a family friend.
She absolutely loved our family and our kids. And we all loved her.
Deborah was deeply religious and also loved her church family. Her husband had passed away recently, and her kids all lived far enough away that she was alone most of the time. Her primary connection was to her church community. Everyone seemed to know Deborah and Deborah knew everyone at church.
We went out to dinner with her after church at times. She introduced us to her late husband’s favorite pizza, the Tarkio Farm Girl – an off-the-menu option at Shakespeare’s Pizza, a local pizza joint.
Then Deborah was diagnosed with cancer. And, as things typically go with cancer, it was fast and excruciatingly slow at the same time. She had surgery, but also needed to undergo intensive chemotherapy. Days felt like years, but doctors’ appointments seemed to speed by, leaving little time for gut-wrenching decisions.
Her children were hours away, all with busy lives and jobs that were demanding, and they couldn’t be there every day. Her son was always on the phone during important doctor’s appointments, but he lived 7+ hours away.
So, my husband and I began to attend her medical appointments with her, taking notes, emailing them to family members, and helping her navigate the barrage of information that came her way at every appointment. If anyone has experienced chemotherapy, you know that “chemo brain” is a real thing. Things get foggy. Now, add to that the constant information that comes at you rapid-fire. It was overwhelming – for all of us.
We grew closer, and we knew that we would, along with a group of others from the church, be part of the team to help her as the cancer began to take over. We brought food. We checked in. We all texted each other – talking about Deborah and how she was doing. We were the day-to-day people in her life. But her financial situation wasn’t the best, and since she wasn’t able to work, her savings was being depleted quickly.
When we knew the end was near – the chemo was more than Deborah could take – we had to have some seriously heart-wrenching conversations. I remember the day I took Deborah to the hospital. She hadn’t been able to eat in a few days, was dehydrated, and just needed attention. Then, we saw a social worker who began to discuss palliative care, and I knew we were talking about the end now.
I learned about hospice. I learned what hospice could do – provide nurses to come to the house to check on Deborah, help with end-of-life planning, focus on the grief of the family and friends. But what it couldn’t do? It couldn’t be there 24/7. Hospice couldn’t help Deborah when she got sick in the middle of the night. Or when she needed to use the bathroom. Or make sure she had watermelon on hand – the only thing Deborah wanted while sick from chemo.
My husband and I worked full-time. We had two small children. How would we be able to make sure Deborah was cared for? We didn’t know exactly how much longer she would be with us, but we wanted her to be cared for and to be comfortable in her final days. We also didn’t know where to begin with a nursing home or if there were any that she could afford, given her financial situation.
In the end, Deborah was able to spend her last days at home, surrounded by family members. We got to meet them in person – rather than over the phone and by email – and they were able to see just how deeply her church family cared for her.
After Deborah’s passing, a friend at church introduced Dave and I to Doreen and Jackie, two palliative care nurses with a vision. These two women are warriors, wanting to help people like Deborah. By creating Caring Hearts and Hands, they have created a way to help people who need care as they reach the end of their lives.
If it hadn’t been for Deborah, we never would have understood this need in our community. I’m not even sure I’d know what the word “palliative” means. But, Deborah led us here. We are passionate about the need for end-of-life care, especially for those who cannot afford nursing home care, those who want to spend their last days in a home setting, and those who don’t have family who can care for them in their last days.
Caring Hearts and Hands of Columbia will provide a service greatly needed in our community. It will provide care in a respectful and caring way as people come to the end of their lives. Please help make a home for Caring Hearts and Hands a reality in the mid-Missouri area.
Community Conversation: End-of-life care
Saturday, April 24
9:30 a.m. – Noon
Livestreamed at https://www.facebook.com/Caring-Hearts-and-Hands-of-Columbia-104862761099720
Caring Hearts and Hands of Columbia will facilitate a conversation with experts.
Miranda Lewis, the niece of Nancy Cruzan, speaks from family experience about dying with dignity. Lewis’ family was in the midst of a public court case in the late 1980s that led to a right-to-die case that transfixed the nation. The case would end up going to the Supreme Court and result in a 5-4 decision that led Cruzan’s feeding tube to be removed after eight years in a vegetative state.
Dr. Kate Grossman, a pulmonary and critical care physician at Boone Health, will speak about the need to respect the wishes at the end of life. Grossman has been involved in the end-of-life decisions of those who are making critical decisions. Grossman will provide a helpful perspective on the importance of respecting the wishes of those who near the end of their lives.
A giant leap forward
Caring Hearts and Hands is another step closer to opening a home for those in need of end-of-life care. The employees of Veterans United Home Loans, through their charitable non-profit Veterans United Foundation, have contributed $10,000 toward our goal.
“This donation will most certainly get us closer to opening our doors,” said Jackie Reed, Cofounder of Caring Hearts and Hands of Columbia. “I can’t wait to serve the people in Columbia who will be in need of our services.”
Caring Hearts and Hands was founded as a 501c3 nonprofit by Jackie Reed and Doreen Rardin, who worked together as palliative care nurses. They worked with people as they were at the end of their lives, and knew there were some who had no family or friends to care for them. And many were unable to pay for nursing care. They needed a safe and comforting place to spend their last days, without financial worries.
This gift is exciting for every board member and volunteer who has worked toward this goal, including Patrick Lee, board chair, who knows this gift puts them that much closer to their ultimate goal.
“When we open our first home in Columbia, we will be able to provide a place where the physical, emotional and spiritual needs of our guests and their families are met with compassion, love and respect,” said Lee.
Caring Hearts and Hands of Columbia is accepting donations toward its goal to open a home to care for those at the end of their lives. Any contribution is greatly appreciated.
Paul Pepper interviews co-founders
“There’s a group of people that we were missing,” says DORREEN RARDIN, retired coordinator of palliative care at Boone Hospital Center in Columbia. That “group of people” is anyone with a serious illness who can’t be cared for outside of a hospital setting for one reason or another. To help ease the financial burden, Dorreen and JACKIE REED are starting ‘Caring Hearts and Hands of Columbia’, which will allow for the patient to come ‘home’, free of charge.
