Linda Sosa, her daughter in tow, traveled Easter Sunday to Lawrence from Japan to begin caring for her terminally ill brother.
Sosa's husband is in the Air Force in Japan, but she decided to make the long trip so she could be her brother's primary caregiver.
"It's overwhelming at times," Sosa said of the ordeal of caring for a dying loved one so far from home.
A hospice house providing assistance and 24-hour care by registered nurses for her brother would have eased her burden. But there is no such home in Lawrence.
Hospice Care in Douglas County, which has been active in the community since 1982, hopes to fill that void. In fall 2002, Hospice Care's advisory board identified the need for an inpatient facility for the dying who are not receiving hospital care.
Now the organization is in the initial stages of raising funds to build such a home. It aims to raise from $2 million to $3 million and find land on which to build.
The center is important, said Jan Jenkins, Hospice Care executive director, because the terminally ill need a place to finish their lives in comfort and free of pain in a homelike setting. Last year, the group served 115 people in their own homes or the homes of loved ones.
One family's tale
In mid-May, Raymond M. Harjo was diagnosed with terminal brain cancer. At first, his daughter, Sharyn Chino, and granddaughter, Lorye Chino, cared for him. But when Harjo's conditioned worsened, the Chinos needed help and found it at Hospice Care.
"Dad," Sharyn Chino said, "was reluctant to let them help us. ... When he agreed to let them help us, within the hour things started happening. They (Hospice Care) set up the room and got a bed."
Though the Chinos have the aid of Hospice Care registered nurses and volunteers, there still are times when Harjo is left alone. Sharyn Chino said she feared her daughter may have to quit her job to make sure he is cared for.
And while Sharyn Chino said she was struggling to make ends meet in the way of care, she feels lucky to have some kind of help.
"I don't know how a family without availability (of help) how they would function."
Room to grow
The proposed hospice house initially would serve eight people but be designed for expansion to accommodate 16. It would include a kitchen, dining room and a meditation area.
The house would accommodate visitors, something Sosa said was difficult in her brother's situation.
"The place he's staying at now, it's a one-bedroom and not big enough for everyone to come visit," she said.
The ability for families to gather is an important issue for the dying, said Nadereh Nasseri, a registered nurse and patient care coordinator at Hospice Care.
"The end of life is very pressing for people. So people haven't dealt with it very well. We want to bring life back into the end of life," she said.
Difficult times ahead
Sosa has been helped by a hospice caregiver who gives her a break from tending to her brother.
"Without the volunteers, I don't think I'd stay sane," Sosa said.
Hospice Care offers spiritual care for the patient as well as family members, a service that would continue in the proposed home.
"Family members have their own issues to deal with losing a person. And then (there is the added pain of) seeing them go through this and being afraid and upset because they are losing control over their lives," Sosa said.
One of the hardest parts, she said, is the day-to-day caregiving. Though her brother can no longer dress himself, he still wants to be in control.
"He gets upset at the things he can't do for himself. He gets embarrassed," Sosa said. "And he won't look me in the face. He says 'I don't want you to remember me like this.'"
Her brother would feel more comfortable if she could leave when embarrassing tasks needed to be done. But what scares him most is when Sosa will have to return to Japan.
"I want to stay until the very end. But I have to leave at a certain point to take my daughter back to start school," she said.
There is a lot of uncertainty for Sosa.
"I take things one day at a time," she said. "You just cross that bridge when you come to it. Otherwise worrying will make you crazy."