Sandra Mitchell, 68, is currently a patient at Compass’ Barnette Center in Centreville, Maryland. Before her diagnosis, she had never heard of ALS. This is her story.
“If I could give Compass a 100-star rating, I would,” Mitchell begins her story. “You’ll receive quality care, compassionate nurses, and peace of mind.”
Sandra Mitchell was diagnosed with ALS after several years of surgeries and unexplained issues. Before her diagnosis, she had no idea what ALS was. However, she took the time to educate herself and reflect on what she needed in order to embrace her condition and get into the right headspace to navigate life.
“I kept falling, and the doctors kept saying I needed a knee replacement—so I got one. About a month later, I fell on that knee and I still wasn’t walking. Then they said I needed back surgery, so I had that too, but I still couldn’t walk,” Mitchell recalls. “Then my hand stopped working, so I had surgery on that. Then came drop foot.” After undergoing multiple surgeries, she realized that something just wasn’t right. “All of this was hitting me at once,” she says. So, she and her family decided to get a second opinion. On June 8, 2023 - Sandra was diagnosed with ALS.
ALS, formerly known as Lou Gehrig's disease, is a neurological disorder that affects motor neurons, the nerve cells in the brain and spinal cord that control voluntary muscle movement and breathing. “I most likely had ALS for 2 years prior, I just had no knowledge of it,” says Mitchell. “I was in the dark, I had no idea what it was, so I went and Googled it.” Once she gathered her information, she remembered thinking to herself: “Okay, this is what I have to face and this is where I have to put my mindset.”
Due to ALS, her son was unable to care for her at home, so she moved into an assisted living facility. When she arrived, the staff inquired about her diagnosis and assured her that they could accommodate her and her specific needs. At first, everything seemed fine, but over time, she began to realize that the care she was receiving wasn’t meeting her needs. “Many people in the facility had Alzheimer’s—they couldn’t remember things. My mind was fine, and I started to notice that certain things just weren’t right,” she explained. Mitchell shared that the assisted living facilities she stayed in weren’t truly equipped to support her, and she felt dissatisfied with the level of care. “I became more stressed being in those facilities. I was completely aware of everything happening around me but felt helpless because of my disease.” “It wasn’t the way she wanted—or needed—to be taken care of,” adds Hayley Greenwood, Marketing Specialist.
Unhappy with her experiences in assisted living facilities, Sandra’s sister created an apartment for her—a place where she could feel comfortable and where she could receive hospice services at home. “I was able to see sunsets and have peace of mind again,” Mitchell recalls. Unfortunately, even with the new setup, Sandra’s care needs were still not being fully met. Not long after moving in, she was hospitalized with pneumonia. “I stayed in the hospital for a few days, and then ended up back at home,” she said.
Following the hospitalization, a nurse asked if she would consider transferring to the hospice facility. Mitchell agreed, deeply shaken by the experience. “I thought it was going to take me, and I knew I needed more support,” she explains.
Sandra’s social worker, Roya, was able to continue seeing her at the Barnette Center, which made her transition much easier. “She felt comfortable coming with her because she just knew everything from day one and was very supportive,” a friend of Mitchell’s explains. “I think my social worker really went to bat for me, and I trusted her,” Mitchell explains. “I asked if I could keep her when I came on. She said I had to request her, so the first thing I did was say, "I'd like to request her,” she laughs. Roya explained to Sandra that Compass would give her a little peace, make her feel comfortable and she’d get good care. “She was 100% percent right,” says Mitchell. “She’s my girl and I know I’d continue to get well taken care of.”
Before she was receiving hospice, Sandra wasn’t receiving the care she needed—or wanted—which led to a great deal of stress and unhappiness. “I was an independent person. I lived alone and took care of myself,” she explains. “So when I started to lose mobility, I had a hard time dealing with that. I also struggled with the level of care I was receiving.” When asked how the center at Compass has been meeting her needs, accommodations, and preferences, Mitchell says, “everything I’ve asked for or needed has been done. I couldn’t be happier or more comfortable being here.”
Now nine months into hospice care, she and her family view hospice very differently. Sandra’s family and friends have seen a difference in her personality, as well. “My family sees a difference. That takes a load off me, because they’d see me cry and constantly ask what they could do, and I’d just cry,” Mitchell explains. “Before, she couldn’t enjoy life—even when she wanted to—because she was just so upset and overwhelmed with stress,” a friend explains.
At the Barnette Center, Sandra is finally receiving the care she had hoped for since her ALS diagnosis. Her family and friends have seen her vibrant, humorous, and positive personality shine through again. “Not only am I happy, but my family is happy and trust that I am being well taken care of here,” Mitchell states. “It feels wonderful. Before, for months, we would worry. I don’t even worry when she’s here, because I know she’s in really good hands,” a family friend continues. “Everybody is loving, kind and listens to her. She feels loved here”
Transitioning to the hospice center was a significantly better experience for Mitchell and her family. When asked if she initially understood what hospice care was, she admitted, “I thought when you came here, you had about a week or two to live. I thought it was just about making your last few days comfortable—not really about extending some of your days,” she explained. “That was until I came to Compass.” It’s not about dying - it’s about living.
Sandra reflects on her experience, expressing regret that she and her family hadn’t discovered Compass sooner. “It’s a shame we didn’t find this place months ago—it’s brought so much more happiness and peace to both me and my family in the time I have left,” she says. “My family can come visit me. I have a van so I can go places. I can go out to lunch with them. I can leave my room whenever I want.”
Heather Guerieri, CEO of Compass, adds, “That’s what hospice is truly about—helping people live to the fullest. It’s not about coming here, lying in a bed, feeling upset, and waiting for the final day. It’s about living.” “Bring your van, go outside, go to church—whatever brings you joy,” she continues.
Now living comfortably, Mitchell is able to maintain her positive outlook and have that peace of mind again. Through the support and care at Compass, she has rediscovered herself and can now fully enjoy the time she has with the people she loves. “Let’s hope I live a little longer!” Sandra laughs.
Hospice care isn’t about giving up—it’s about gaining comfort, support, and the opportunity to live fully. Considering hospice services early can make a meaningful difference for both you and your loved ones.
