Living well with serious illness: Deadra’s lupus story
For junior high sweethearts Darryl and Andrea Gladden, the needs of their three daughters and one son have always come before anything else.
“All we have ever wanted is for our kids to be able to do what brings them happiness,” says Darryl.
This need to support their children at every turn has been magnified over the years as all three of their daughters were diagnosed with lupus when each entered their teen years.
Lupus is a chronic autoimmune disease that can cause damage to skin, joints and organs. After seeing their eldest daughter Danielle deal with prolonged chronic pain, they were determined to ensure that their other two daughters were able to enjoy quality of life.
That’s when they found palliative care.
What is Palliative Care?
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of an illness like lupus. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
While the Gladdens’ second daughter, Daphne, has been able to live a relatively active life while dealing with lupus, their youngest daughter, Deadra, was referred to palliative care by her primary care physicians. The goal was to control the extreme chronic pain she felt in her stomach and joints. She had also suffered a stroke, was wheel-chair bound and was on dialysis.
Deadra was 27 when she first met with palliative care. Having been diagnosed at 14, she had spent nearly half her life dealing pain as well as difficulties caused by multiple surgeries which included having her aortic valve replaced and gallbladder removed.
The Gladdens felt like they had seen and heard it all before from different specialists. Deadra was frustrated by the fact that her pain never seemed to lessen despite years of different medications and surgeries. But the Gladdens say they felt that palliative care was different from the very first meeting when the team of palliative care specialists sat down with their whole family.
“What struck us first was that they didn’t begin by talking to myself and Darryl—which is what doctors usually did. They talked right to Deadra,” says Andrea.
She says that it wasn’t just that they spoke directly to Deadra, it’s also what they said.
“They said, ‘how can we help?’” which seems so simple, but it meant the world to us. They weren’t telling us what to do, they were asking what they could do. That made a big difference,” says Andrea.
Deadra immediately opened up to the palliative care team about wanting to be able to be more independent, have more control over her pain and return to her hobby of writing. The palliative care team then helped map out a plan to first get her pain under control and then continued to talk through her goals to get her back to the things she enjoyed doing.
Palliative care at home
For people facing serious illness, traveling to the hospital for appointments can be a chore. Recognizing that Deadra’s symptoms made travel difficult, the palliative care team set up home visits where she could work with a pain specialist and the team’s social worker who helped her by having long conversations.
“A lot of the time we’d walk by Deadra’s bedroom and they wouldn’t be talking about her battles with lupus. She’d be talking about tv shows she liked and her hobbies. She was treated like a person, not a patient,” says Andrea.
In the process, the Gladdens spent less time talking about the illness as well.
“Palliative care did wonders for Deadra’s stress which gave us the ability to shift our focus to enjoying the small things together as a family,” said Darryl. “It was also monumental for us as her caregivers.”
Tackling the pain
When Deadra first came to palliative care, she had a long list of heavy pain medications she was taking. While they provided some relief, these types of drugs can come with their own side effects. Recognizing that this was an area that could be improved, the palliative care team had ongoing discussions with Deadra, and based on those conversations, they altered the regimens, and in some cases, took medications away so she could be more active. They also empowered Deadra by teaching her how to administer her own medications at home.
“What they gave her was relief from pain but also the confidence to speak up when things weren’t working. Palliative care helped Deadra take control of her own pain which set her on a positive path forward,” says Darryl.
An emphasis on quality
Over two years after first meeting with palliative care, Deadra was able to leave the house more often to attend church, see movies, watch basketball games and go to her favorite restaurant, Red Lobster. She was also able to do a few things on her own.
“Even just to see her be able to go into the kitchen by herself to get something to eat was enormous for us,” says Darryl.
With her pain better managed, her goals set, and her focus remaining on the present, the Gladdens say they were able to see a real change. They first noticed positive improvement when Deadra started writing again.
“Her mind was now back on her hobbies and it was incredible. The Deadra we knew was back,” says Andrea.
Deadra passed away in 2016, but her family is grateful for the quality of life palliative care helped her enjoy.
“We now know that palliative care can help anyone in our family who faces an illness. We wish we had known about it earlier,” says Andrea.
To find out how palliative care can help you or a loved one, visit GetPalliativeCare.org. At this site, you can learn more, look for palliative care in the Provider Directory, and take a short quiz to see whether you could benefit from palliative care.