Rollin Lane, 88, sits with Kim, left, his 57-year old daughter with Down Syndrome, and Kris Zamora, right, in his Leominster home. After caring for Kim for her entire life, Rollin’s declining health has forced him to seek assistance with caring for Kim.
When Kim was born, Rollin recalls being told by the doctors to put her in an institution. They told him she’d be a “vegetable,” and there would be “a lot of problems.” “In my mind- no way. My wife, thank God, felt the same way,” Rollin remembers. “She's coming home, she's going to be part of our family. End of story.”
Leaving her family in Ohio, Rollin's other daughter, Kris Zamora, visits every few months to assist Kim and Rollin for weeks at a time. Taking the role Rollin once played, she cares for them both by cleaning, cooking, doing the laundry, and running errands. However, her efforts to aid Kim are often not received with gratitude. “It's frustrating to not have that returned,” Kris says about having a sister who is non-verbal.
“Dad and she have a very intertwined, close relationship. Very co-dependent.” Kris says. When Rollin is present, Kim doesn't want anyone else to do anything for her and relies on her father for her needs. “I don't have any other siblings, so I don't know what it like to have a "normal" sibling.”
Kim has lived with Rollin all her life, and despite his declining health, Rollin has been the primary caregiver for his daughter. As a person with special needs, Kim needed constant one-on-one supervision and after the passing of his wife 15 years ago, Rollin has bathed her, dressed her, and fed her as a parent would a child. While many his age are well into their retirement and many relocate to senior living facilities, Rollin took on the responsibility for caring for his daughter. However, over the years, Rollin’s health and ability to care for Kim declined, which made finding help for her a necessity.
Rollin is aware of the reverse-dynamic. “One of the things I feel bad about is that Kris has extended herself in every physically, and mentally possible way to love her sister. But her sister doesn't respond. It's not Kim’s fault and Kris understands that. She's bent over backwards trying to help and do what's best for her.”
Recently, Kim began to develop problems with her memory and thinking, and she became increasingly difficult to interact with-all possible signs of Alzheimer’s Disease, a type of dementia. Her symptoms developed slowly and worsened over time, although her Down’s made it difficult to diagnose at first. “It was hard to see because we didn't know what was wrong,” Kris said. “ We couldn't understand what was going on.”
Rollin hands Kris a bottle of baby powder through the door as Kris assists Kim with cleaning after a failed attempt at using the bathroom. The choice was clearer when it became an issue of Rollin’s health and Kim’s safety. “She wasn't giving him any peace,” Kris recalls. “As much help as we gave, she was wandering. We had to make sure the doors were locked.” Rollin’s use of a wheelchair and older age made daily tasks like bathing, dressing, and feeding Kim difficult for all involved.
When Kim would start having sporadic crying fits, it was especially tough for Rollin. “ She would be hysterical, very afraid and scared.” She stopped taking interest in the activities she enjoyed, like watching her favorite TV programs, going bowling, and participating in workshops at the ARC in Fitchburg, a community-based organization that helped those with intellectual and developmental challenges through job placement and training.
Kris and Rollin agreed that they couldn't do it anymore. Kris was no longer able to care for her father and sister together by herself, and Rollin was no longer able to care for Kim by himself. They needed a solution where Kim could be more independent and have the support she requires. They needed to find Kim a second home.
"I promised my wife on her death bed that I wouldn't put Kim in an institution.” Rollin says with regret. “But I can't keep that promise and I shouldn't have ever made it. I feel I've done the best I can. I'm doing what I'm doing, not for my benefit, but her benefit.”
Kris assists Rollin out of his Leominster house as they visit a housing solution for Kim.
With pressure from the Department of Developmental Services (DDS), friends, and family, Kris remembers the struggle leading up to the decision to find a second home for Kim. She and Rollin went back and forth many times, changed their minds, tried different ways to handle things. “We had to be sure we couldn't do it anymore and there was nothing more we could do. It didn't matter who told us, or what anyone else said. We had to be sure up until that point.”
Kris acknowledges her father’s good intentions and his promise to protect and watch over her. The idea of Kim growing up and leaving, as many family members do, was never part of the equation. Rollin’s biggest fear is the same as any parent-“What happens to my daughter or son when I'm gone?”
From left, Kim's DDS caseworker Cheryl Lebeuf, Kris, Rollin, and Seven Hills Residence Director Freda Archeval, meet with Venture Community Services Day Program Director Elizabeth Bond, as they tour the Venture Community Services facility in Fitchburg. In addition to residing at the Seven Hills, during the day Kim will have the opportunity to participate in the Venture Community Services program , which provides special-needs individuals with life skills and personalized support throughout the day.
From left, Kris, Freda Archeval, and Rollin, discuss the logistics and forms involved with Kim's admission into the Venture Community Services program with Kim's DDS caseworker Cheryl Lebeuf.
Relief came when Kim's caseworker from DDS told Kris and Rollin about a community residence operated by The Seven Hills Community Services Foundation in Leominster. The live-in facility, a four bedroom family style home just ten minutes from Rollin's house, provides clinical, educational and community-based assistance to people like Kim.
Direct Support Professional Gifty Borquaye assists Kim with preparing dinner for the members of the home. Supported by staff 24/7, Kim thrives at Seven Hills, where she is able to live more independently and receives the emotional, social, and physical support she needs. She lives there during the week, improving her cognitive and social skills. On weekends, the staff can assist Kim with returning home to her father if he has assistance at home.
Freda Archeval, the Residence Director of Seven Hills, can see the change in Kim when she’s there. “She’s more independent. She dances…She helps with the cleaning, she likes to be in the kitchen.” Archeval even recalls the time Kim bathed herself.
Kim enjoys a snack after helping prepare for dinner at Seven Hills. Kim’s successful transition to her new home wasn’t an easy process for Kris, who compares the change to sending your kids off to college.
Rollin feels as though a weight has been lifted. “I'm the happiest father in the world. To see what she's got…She got what I couldn't and won't be able to do. I wouldn't be able to provide for her now, or in the future…the personal attention, making sure her needs are being taken care of, socially and physically.”
A framed photo of Kim and Rollin when they were younger. After nearly eight years of traveling back and forth from Ohio to care for her father and her sister, Kris now has some of her freedom back in her life.
Rollin is able to visit Kim often and see her succeed in her own environment. “I'm a firm believer in the fact in that the people there really care about these kids. Everything I’ve seen proves it. The folks are very patient, very accommodating, and very loving.” Kris can see a difference now that Kim is a resident at Seven Hills.
While the last few months have been a time of transition for the family, the changes have been in everyone’s best interest and Rollin knows his daughters will always be there for him, and for each other.
Kim hugs Rollin in her bedroom at Seven Hills as they say goodbye. “She's part of our family. She's a human being. She still carries my name…what else can I say? You do the best you can, and right now I think my wife would be in full accord with what we've done.”