Peace of Mind MHA’s Specialized Residences Help People Overcome Acquired Brain Injury
usan Wolfe likes horses, and they like her — something she had forgotten for a while.
“Because I have lost so much of my memory, I’m learning things about myself all over again,” she said. “When I saw the horses and spoke to them, it triggered something. Suddenly, I remembered. I remembered that I like horses and I have since I was a young girl.”
Wolfe’s breakthrough came after Holly Coburn, Day Program Services counselor at the Mental Health Assoc. (MHA) in Springfield, brought her to a horse show, where she sat up close, next to the railings.
“There was a horse right beside her, and I could see that she was saying something. I couldn’t hear what it was that she was whispering, but the horse kept moving its eyes to see who was talking,” Coburn recalled. “I sensed that something special was going on. There was definitely a connection being made.”
Such connections are gratifying for staffers who work at one of MHA’s four local residences for people with acquired brain injury (ABI). Four years ago, Wolfe suffered multiple strokes that affected her right side and much of her memory. Initially, she was unable to speak or care for herself, but, motivated by her unbridled work ethic and aided by speech and occupational therapists, she has begun to recover her ability to speak.
Because she still needs help with activities of daily living, she recently moved into MHA’s newest ABI residence, located in Ludlow. There, she lives with three other women in a home designed specifically to address the long-term needs of people living with ABI, with features like accessible bathrooms and counter heights that accommodate wheelchairs. “It used to be a Christmas tree farm,” Wolfe explained. “I like the quiet outside. It’s so peaceful there.”
Linda Kloss, vice president of MHA’s Development Disabilities division, said the organization was founded 60 years ago at a time when people recognized that large state hospitals were not the most effective way to treat individuals with mental illness. To that end, during the 1990s, MHA set out to help people with developmental disabilities move out of institutions like Monson Developmental Center and Belchertown State School.
Similarly, the organization’s ABI services began in 2008 as a result of the Hutchinson lawsuit, which charged the state to offer alternatives to nursing-home care for residents with ABI. In 2015, MHA opened its first home for individuals with acquired brain injury — a less expensive and more meaningful community alternative to institutional care in a nursing home, Kloss noted.
“We’d always been involved in deinstitutionalization, so it seemed this was right up our alley,” she said, noting that residents have suffered from events including strokes, anoxia from choking, car accidents, and opioid overdoses, to name a few.
Inside, the residences look like a typical family home. At least two staff members work with the four residents after receiving training in personal-care needs specific to those individuals. For example, they must be certified in medication administration, first aid, CPR, and other relevant skills. Additional MHA staff, including clinicians and registered nurses, visit the home as needed.
“This is their home as long as we can meet their needs,” Kloss said. “We augment what we do with an outside nursing service. It is cheaper than having someone in a nursing home 365 days a year.”
Regaining Ground
More than that, noted Luishka Carcorze-Mendez, DDS program supervisor at MHA, the specialized residences can meet the needs of individuals with ABI more effectively than a traditional nursing home, starting with the emotional challenges.
“We see a lot of frustrations in ABI,” she explained. “They know they were Jane Doe from 2010, they had their ABI in 2012, and they still want to be the same Jane Doe, but they’re not the same person anymore. That frustration is there because they can’t do everything they did before, even though they want to.”
Each resident establishes certain goals; for some, it’s to hold a job, while for others, it may be eating healthier and walking more. Some residents eventually adapt to their ABI so they are able to return home, while others work toward community engagement or day programs. For some, an ABI residence becomes their new, permanent home.
Within that structure, they may be transported to appointments for medical care, physical or occupational therapy, day programs, recreational and social outings, employment, and/or volunteer opportunities. Residents take part in regular household activities such as grocery shopping, laundry, and housecleaning. In addition, residents have their hair cut at the local salon, take trips to visit family members, go to work, attend church, and do anything else that people do in daily life. An adaptive van is used for transportation when necessary.
“Everything is new here, so we’re learning together,” Coburn said. “We develop a weekly calendar of activities to keep our participants active and hands-on. There’s an arts and crafts segment with fun projects that also focus on sensory skills, eye/hand coordination, or strengthening memory. There’s a multi-purpose room where we watch exercise videos while we move, use stretch bands, or play catch with a ball. We have some fun and fitness games we play outside as well. There’s computer time that lets people look up things that interest them while they learn to use a computer again. There’s even a sensory room with musical instruments and kinetic sand. Everything is participant-driven. They pick what they want to do, and we help.”
On a deeper level, some residents need help establishing — or re-establishing — positive relationships, Kloss said. “Many people are estranged from their families after their injury. They become just angry and frustrated.”
“We just have to teach them how to live with the ABI,” Carcorze-Mendez added. “We tell them, ‘you’re still this person, but you’re a new person, just with an ABI. You’re going to succeed, and you’re going to do better.’”
Still, some relationships aren’t fixable, Kloss said, because ABI can dramatically alter the sufferer’s personality, and that can lead to deep rifts with loved ones. “They may be willing to try, but the other person is like, ‘I’m not doing this. I did this for so many years, I’m not going to do it now.’”
Most goals, however, center around building independence as much as possible, she added.
“They have medical needs, or they need toileting, or stuff that you and I take for granted,” she said. “They’re thinking, ‘I used to get up and go to the bathroom when I wanted to, and now I have to ring a bell or call somebody to help me get to the bathroom to toilet myself. And I can’t bathe myself.’ We try to build in mechanisms where they’re as independent as they can be, whatever tasks they have to do.”
On top of that challenge — true for residents in the traditional nursing-home setting as well — are the emotional and intellectual issues that staff in a general skilled-nursing setting aren’t prepared to handle, Carcorze-Mendez said.
“I’m always running 1,000 miles an hour — I don’t think anyone’s ever seen me with my sleeves rolled down,” she said. But the work is worth it when someone makes progress, like a resident named Jane.
“Jane used to be so centered on how much she hates life. She was so angry, we took a step back and said, ‘how do we fix this?’ Well, she went to see her daughter this weekend, and her daughter said it was an excellent visit — and that hasn’t happened in two years.”
Simply put, Jane has come to see the ABI residence as a positive in her life. “The things she likes are there for her, her needs are met, and you can visit anytime. So, now she focuses only on positives,” Carcorze-Mendez said. “That’s success for me, just seeing one person change.”
Sudden Impact
Kimberley Lee, vice president of Resource Development & Branding at MHA, noted that ABI can strike anyone, young or old. “The affected party could be your neighbor, your parent, or even your child. In each case, a person’s life has been dramatically changed by a brain injury. MHA helps individuals with an ABI to live their best life.”
Sara Kyser, MHA’s vice president of Acquired Brain/Traumatic Brain Injury Programming, agreed that ABI typically happens without warning, dramatically altering lives in an instant. And the impact varies greatly from person to person, running the gamut from memory loss to loss of motor skills to blindness.
“Some have mental-health challenges, and some don’t. Some need physical help, and some don’t,” Kloss said. “It’s quite a blend. And every one of them has memories of the past, unlike folks born with developmental delays, who sometimes don’t have memories of having a job or a wife or friends to go out with.”
That’s why reconnecting residents with the outside community is so important, she added, recalling that, when she first drove Wolfe to the house, the new resident commented that it was the first time in a while she had been out riding and actually able to see where she was going, as opposed to being in back of a wheelchair van with limited views. Kyser said another resident was excited to carry a purse while shopping, something she hadn’t done in a long time. “That was one that kind of stuck with me.”
And it’s important, Carcorze-Mendez said, that residents make their own choices about when to sleep, eat, shower, and the like. We adjust ourselves; they don’t have to adjust themselves to us.”
“Where the buzz phrase in this industry tends to be ‘person-centric,’” Lee noted, “MHA is really person-driven. We’re not just centric to their needs. We’re driven by their needs.” Compatibility is important, too. Early on, a coed house wasn’t working, so the residences became male or female only.
“It’s great when family members come in and see the house and feel at home,” Carcorze-Mendez said. “They sit in the living room, and it’s home. If a child wants ice cream, her Meme gets ice cream from the fridge, as opposed to ordering it from downstairs.”
The residences also fit well into their neighborhoods, Kloss added. “You wouldn’t know we’re a group home.”
As for Wolfe, she continues to make progress in her recovery, and her newly rediscoved love for horses has helped.
“That first time I saw Susan with horses, her eyes just lit up,” Coburn recalled. “It was the first time she could tell me something important from her past, about how she loved horses as a kid and how, as an adult, she spent her Saturdays riding. We take her whenever there is a horse show in the area. When horses come near, she whispers to them, and they hear her.”
But she’s learning to speak above a whisper, too. Wolfe has been married twice, and both men abused her physically and emotionally. For most of her adult life, she was denied the opportunity to communicate her needs and express her own wishes. Working with a speech therapist five days a week for almost a year has yielded great results, Coburn said — not only speaking for herself, but for others as well.
“There were a lot of ladies in the nursing home who had strokes and couldn’t talk. I would stick up for them,” Wolfe said. “I know it is frustrating when people want to say something and their speech is not at a point where they can say what they want to. I could read their eyes and help others know what these ladies wanted to communicate because I was like them before.”
Wolfe has progressed to where she now gets into a wheelchair herself, gets ready for bed herself, and, with some help, showers and dresses herself. Three years ago, she could do none of these things.
It’s progress like this that convinces residents’ loved ones that MHA’s homes for acquired brain injury are an effective alternative to the standard nursing-home life.
“Kids don’t feel guilty because mom is well taken care of,” Kloss said. “It’s tough — no one wants to be in a nursing home, and I tell people, ‘you’re a slip, trip, or fall away from that. It could be you tomorrow.’ You just never know.”
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