Where We Are Now: The Update

The book I wrote, Belonging After Brain Injury: Relocating Dan, is a biography of my brother that traces his life from before his brain injury at 18 years old, in 1978, to the time Routledge accepted the book for publication in 2021. The thing about writing a biography about a person who is still living is that the story continues beyond its writing. And so, the purpose of this post is to broadly recap the changes in Dan’s situation from 2021 to the present.

(Of course, I recommend reading the book. It will give you context for the details and events of his life as I address them, as well as more general information about brain injury and the struggle to find belonging that faces many people—specifically people with brain injuries, but, at least at times, others too. Also, by the end of the book, you will know Dan quite well, and he’s well worth knowing.)

I closed my book with the opening of a new chapter in Dan’s life: his move into a waiver home. A waiver home is a house that is leased by a company that provides staff and services around the clock to care for its clients who have disabilities that make it impossible to care for themselves. The housemates share responsibility for expenses like rent, electricity, cable, and food. These expenses, along with the company’s fees, are paid from the housemates'’ Social Security disability payments. It’s a good solution for many people. It allows them to live in a non-institutional setting with staff who have fewer people to tend and who therefore are able (at least in theory) to give them more time and attention than they would get in a nursing home. There is also greater continuity in both staff and residents, so personal bonds among them may develop more quickly and easily. (They don’t always, but they may.)

At the time I finished the epilogue, Dan had been in his new waiver home for two weeks. Across the board, nursing homes were hit hard by the COVID pandemic, and staff at Harbor House* was inadequate in terms of both numbers and training. When Carrie, Dan’s Disability Services Coordinator, explained to me what waiver homes are and raised the possibility of moving Dan into one, I was excited by the prospect, and I knew Dan would be, too. With every window visit with him at Harbor, I was alarmed by his visible decline. From the moment I explained what waiver homes are, he was ready to move into one.

Dan’s new situation worked well for awhile. Both of his two housemates were much more disabled than Dan; neither was ambulatory or verbal, and they didn’t much react to anything that was said to them. So, while neither offered the possibility of friendship for Dan, there weren’t any real conflicts with them either—at least for over a year.

Indiana Friends, the company that managed Dan’s home, had expected (and offered) to provide two care assistants, at least during the day, so that Dan could go out into the community again for lunch and movies. The plan was that one caregiver would take Dan out, while the other would stay home with “the boys” (Dan’s housemates). Due to a staff shortage, they weren’t able to assign two people to Dan’s house, precluding his excursions. The compromise we arrived at, however, was that I would participate in company orientation and training so that I could drive one of their vehicles (small buses/large vans) equipped with wheelchair lifts, so that I could take Dan out. While I didn’t have time to resume his outings three times a week, this plan did enable me to get him out once or twice a week. Not all excursions were recreational; as well as going to lunch or dinner, we also regularly went to a barbershop, his (new) family doctor, his dentist, his podiatrist, and a stint of physical therapy appointments that led to appointments for botox injections to combat muscular rigidity in his right hand, elbow, and neck.

He didn’t like all of the caregivers, which caused occasional difficulties, but for the most part he got along well with them and became real friends with some. Early days were rough—broad scale change is especially difficult for TBI survivors—but we all worked together to iron out the kinks. Things were going well for a time, but after little more than a year, we hit a snag: one of Dan’s housemates took to suddenly screaming in the middle of the night. Once he began screaming, his other housemate joined in, and the racket continued for hours. Night staff affirmed Dan’s report that the noise was intolerable, and Indiana Friends fruitlessly tried to address the issue, and Dan tried earplugs, noise-cancelling earmuffs, and earphones, to no avail. The result was that Dan was exhausted, both physically (lack of sleep) and emotionally (swinging between exasperation and anger). After a month or so, Dan began spelling “MOVE.”

And so, after seeking alternatives but not finding better ones, we began arranging a move back to Harbor House. Almost magically, his old (private) room opened up, and after 18 months at the waiver home, Dan moved back in. At present, he’s been at Harbor for not quite six months. Staffing levels there have never returned to pre-COVID levels, which translates into longer waiting times for help and less continuity in caregivers. (Harbor mitigates at least some of the understaffing problems by hiring nurses and CNAs [Certified Nursing Assistants] from an agency that provides temporary staff; the personnel is well-trained and friendly, but the caregivers’ faces continually change, resulting in more difficulty in establishing comfortable relationships—both for Dan and for me.)

That’s where we are now. With this brief history as a base, I’ll be writing about Dan’s situation and our experiences as they unfold. I hope that you will join us and that you will benefit from our companionship.

*I will be using the same pseudonyms on this blog that I use in the book. The publisher suggested changing the names of everyone outside of our family to protect people’s privacy and to avoid any potential legal issues.