Life in a nursing home may be necessary at times, but it’s not something most of us would choose.
For eight individuals who recently came to Aspire Living & Learning for services, nursing home care wasn’t cutting it. All eight had suffered traumatic or acquired brain injuries that left them in need of significant physical and emotional support. Stroke, assault, illness, accident: the causes of their brain injuries were different, yet they shared a common experience.
According to Assistant Director Heaven Griffin, “Prior to whatever brain injury they got, they were living independently. They have kids, husbands, they had houses, and cars, and jobs… And then, after their brain injury, they were thrust into these nursing homes.” They lived in nursing homes because there were no community services available to meet their needs.
The nursing home experience was not good, for all the reasons you might predict: isolation, loss of freedom and privacy, lack of control over everyday activities, few same-age peers, and inconsistent staffing. Fortunately, because of a lawsuit and ongoing advocacy, changes to Massachusetts’ rules governing funding gave them another option.
Aspire Living & Learning stepped up to partner with the state to open two staffed residences for people living with brain injury. In 2019, we welcomed four individuals to their new home. A second home serving five people opened last summer in the midst of the pandemic.
For the people who live in these houses, the loss of their pre-brain injury lives remains enormous, compounded further by the challenges of recovery. Program Manager Kaitlin Roberts reports, “A lot of their self-confidence has gone way down. So it’s a big thing that we’re working on, building them back up. Empowering them.” Aspire staff are trained how to support people with brain injury while addressing both their physical and emotional needs. Mental health, speech, occupational, and physical therapists also visit the homes regularly to facilitate continued progress. Nursing support and three Direct Support Professionals are present 24 hours a day to do the things the residents can’t do and to encourage them to do everything they can do.
Assistant Director, Christine Lowe, acknowledges that recovery is a long road. But she’s impressed by the progress she’s seen: “Overall things are going fantastic. . .Life is getting better.” And confident in the potential for continued transformation, “Come back in 5 years.”
Sharon Eaton reports she really likes living in her new home. For one, she’s regained some privacy since she has her own room. “It’s a nice house. The staff are excellent.” She’s made friends. And on her birthday they baked a cake. She appreciates the food, “the food is great. They put menus up. If you ask for something, they put it on there.” As the pandemic eases, she’s looking forward to finally getting out—“I’m going bowling next week. I haven’t done that in a long time.” All these simple things that mean so much were sorely missed before she moved here.
With access to the internet and adaptive equipment, residents can keep up with their friends and family. With support they can control their own finances and make their own schedules and appointments. They’ve also started their own traditions: for example, pizza & movie night and house planning meetings. One had a job as a school aide until the pandemic hit, and she looks forward to returning soon. Several are avid crafters, knitting, and making blankets, and plan to join community crafting clubs as soon as in-person meetings start up again. Others report that the tranquility and peace of the home is one of their favorite things about living here.
What has been gained is best described as freedom, to create their routines, to feel ownership not just of their bedrooms, but of their home. Just as important, they have started to regain confidence in themselves as they come to terms with their circumstances and the opportunities that are opening up again.
Our work in these programs reminds us every day that disability can strike any of us without warning. We are grateful to the staff and advocates who have worked tirelessly to ensure that people living with brain injury in Massachusetts are increasingly able to maintain control over their lives.