December 2012 BBH Homefront Newsletter
|Spending quality time with her family is the top priority of BBH resident Jeanne (seated).|
Bailey-Boushay House opened in 1992 to care for very sick people who had nowhere else to go.
"No one wanted to care for people with HIV/AIDS," says Brian Knowles, Bailey-Boushay’s executive director. Each patient needed specialized nursing care and labor-intensive support. Yet traditional nursing homes turned them away as being too sick for standard end-of-life care.
“Bailey-Boushay was built by a community that believed everyone deserves to die with dignity,” Brian says. “That value still guides us.”
So today, if beds in our nursing home aren’t needed by someone with HIV, we provide end-of-life care to residents with other special needs who don’t have AIDS. Their special needs often arise from Huntington’s disease (HD), amyotrophic lateral sclerosis (ALS) and complicated cancers.
The unpredictability of life-limiting illness
Jeanne is a 66-year-old mother of three and grandmother of eight. Her mind is alert, and her sense of humor pops up frequently.
"I've danced forever," she says, shaking in her wheeled bed to demonstrate the hula for her delighted grandchildren. "I danced on TV on 'Seattle Bandstand' when I was 13."
Jeanne has Huntington’s disease (HD), a rare and degenerative neurological condition with no cure and few treatment options. She can no longer walk. Speaking is difficult. And she must rely on others for the most basic daily needs, from bathing and toileting to dressing, grooming and eating.
She moved into Bailey-Boushay a year ago, needing more care than her family and a traditional nursing home facility could provide.
Finding out what works
It’s common to use medication to counter disruptive outbursts and other behavioral problems triggered by HD. Alana Pumphrey credits the Bailey-Boushay staff for recognizing that her mother was overmedicated.
“She’s more alert, and she can talk more,” says another daughter, Melissa Jeng. “She’s thrived here, as much as anyone could with HD.”
“The staff here can understand and help my mother,” Alana says, “and they’re caring in how they do it. They talk to her and figure out what she needs and what will work for her.”
Making little things count
Eight-year-old Hailey likes seeing her grandmother happier. She has her own take on what makes Jeanne’s days better: food she likes (despite being unable to chew). Her own room (where it’s easier to talk). The BBH greenhouse (Jeanne loves plants, and the grandkids love taking her there). And the end of a mystery rash (nurses figured out Jeanne reacts to hand sanitizer).
“They make it so she can have what she needs,” Hailey says, “and they make sure no one gets more sick.”
Focusing on what matters most
The goal of Jeanne’s care is to help her die with dignity and to live fully every day until she does.
“We help residents celebrate the present they are living, not just mourn the past they are leaving,” explains Brian.
Living well in the present
For years Jeanne was a single working mom, and family has always mattered most. “I like having my family here,” she says. A highlight this fall was going to her first grandson’s wedding.
“I think the staff was as excited for her as we were,” Alana says. “They were so good about getting her ready. They even had a chocolate shake waiting when she got back.”
Jeanne beams talking about that day: “I had a wonderful time, and I got to hold the baby, my great-grandson.”
Making flexibility the rule
At Bailey-Boushay, we look for ways to make what is probably the worst experience in a family’s history a little bit better.
Even among residents with a shared diagnosis — whether it’s AIDS, HD, ALS or cancer — one size never fits all. Each resident’s story and needs are unique. And each family’s dynamics are their own.
Take, for example, the needs of a woman dying from ovarian cancer. She was a single mother with five children, all under the age of 10. To make sure the children could have frequent, short visits with their mother, Bailey-Boushay staff and volunteers ran an improvised daycare program right in the nursing home.
Another family was in great distress watching their loved one die. For two weeks, eight family members slept at Bailey-Boushay to hold a round-the-clock vigil at the resident’s bedside.
Sharing what we’ve learned
In two decades of giving AIDS care, BBH staff members have become experts in end-of-life care for people with very complicated physical, emotional and social needs.
"We give our residents without AIDS the care they deserve at end of life but can't get anywhere else," Brian says. "We welcome them and their families into the Bailey-Boushay community for as long as they need us."
|The Bailey-Boushay House kitchen staff prepare 65,000 meals annually.|
Food and regular meals play an important role in the health and well-being of our outpatients and residents. The Nutrition Program at Bailey-Boushay House is a vital service as nutrition boosts the immune system and helps the body to heal and fight disease. For 40 percent of our outpatient clients the kitchen often provides the only full and nutritious meal they get during the day. Just as significant as nutrition, there is the emotional role food plays in all of our lives – it provides security, comfort and, when eating with others, a sense of belonging and connection. The kitchen at Bailey-Boushay house is what makes the Nutrition Program possible.
The kitchen at Bailey-Boushay House operates every day and provides 65,000 meals annually. Since Bailey-Boushay House opened 20 years ago, the kitchen has never been updated and most of the kitchen equipment was purchased used. The impact of feeding more than 7,000 people over the course of 20 years has taken its toll.
The wear and tear of constant service is apparent but, most importantly, the ability to continue to meet the ongoing needs with the current facility and equipment is at risk. As we celebrate 20 years of service, we will focus on updating the kitchen to ensure we are able to serve those who need us today and for those who will need us in the future.
A special thanks to:
The party isn’t over. We’re celebrating all year at Bailey-Boushay.org/20years.
We continue to honor the people and friends of Bailey-Boushay House, past and present. Please visit often.
Share your own story. Has your life been touched by Bailey-Boushay? We’d like to hear your story.