Current Caregiving Stories

No LONGER ALONE: 31-year-old jeff benefits from 24/7 support

 

 

Just a year ago, Jeff, 31, spent much of his time alone. He would go many hours without communicating with anyone. Jeff is diagnosed with mild mental retardation and depression. Only qualifying for two hours of support a day, he became isolated from the world around him.


He kept his blinds closed, became less concerned with his appearance, stopped cleaning his apartment, and did not take his medications regularly. Without someone to care for him, Jeff stopped caring about himself.

 

That all changed when he met Evelyn, and when she found the support of Caregiver Homes. "I treat him like he's part of the family," Evelyn says. "I love caring for him and teaching him. He's so eager to learn, and he's a lot of fun to be with."

A few years ago, Evelyn was providing support to Jeff on an independent basis for a few hours a week. Their bond was instantaneous. She would help him clean his house to make his house more comfortable and safe, and she often invited him to her home because he was so isolated. But when Evelyn experienced a stroke, it would be a year before they saw each other again.

 

During that time, Jeff was relying on other support providers. The day Evelyn's doctor told her she was well enough to work, she received a call about Jeff.

 

"I know God had his hand in this one," says Evelyn.

 

In the time Evelyn had been away from Jeff, she was told human services came into Jeff's home to evaluate his living situation. Exterminators had to be brought in. The state was considering moving Jeff to a nursing or group home. In the span of just one year, Jeff, who only qualified for two hours of care a day, was possibly going to move to a full-time care facility.

 

"They felt he was in such bad condition that he needed to be there," Evelyn says. "They called me and said that I knew him best. They wanted my input."

 

What Evelyn found upon her arrival broke her heart. Jeff had not taken a bath in two or three weeks, so he had developed sores on his legs. He was staying home all day, skipping work, smoking, and drinking liters of Dr. Pepper each week. Jeff was no longer letting people come into his house to help him, and those who did quickly left.

 

"I walked into this meeting about Jeff's future, and I cried," Evelyn says. "I said, 'I don't know what you all have been doing, but I've got him now.' We cleaned him up, cleaned his house, and brought him home."

 

"If I don't have her," Jeff says, "I don't eat, I don't sleep, and I don't go to work. I wasn't happy."


When she and Jeff heard about Caregiver Homes, they knew they had found their answer.

What It Means to Care Like Family

Evelyn hears the bus pull into the driveway. "There he is," Evelyn beams, smiling before Jeff even gets to the door. When he walks in, she can immediately tell something is wrong, in a way that only a loved one can. "You look upset, what happened?" Jeff opens up and tells her about his day. He tells her he wanted to sit in a different place on the bus. She encourages him to speak up to the bus driver. They talk it through. With a tender hand upon his hand, she reassures him that she is listening, that he is loved.

 

As the oldest child of 12, Evelyn learned from a young age what it means to be a caregiver. "That's my gift, to be able to care for someone," says Evelyn. "I want to care for someone the way I want to be cared for. I want to be loved, listened to, and respected. Not just a roof above my head and food; I'm talking about all those needs met. That's caregiving."


When his Paths Coordinator heard about Caregiver Homes, she immediately thought of Evelyn and Jeff. In just one week's time of learning about the program, Evelyn was officially a caregiver through Caregiver Homes.

 

Now Jeff lives with Evelyn and her husband Harold in a home that is warm and inviting; a candle makes the home smell like pumpkin pie. Jeff calls them Mom and Dad. Evelyn cleaned out the upstairs so he can have his own "man cave." "That is his domain," Evelyn says. It is a far cry from the empty apartment he used to live in. Now his home is abuzz with activity. Evelyn's granddaughter walks in after school and makes her grandmother some tea; their small dog barks in the background. Evelyn is preparing macaroni and cheese for dinner tonight.

 

"Her family loves me," Jeff says. "And I love them." Jeff reminisces with Evelyn and Harold about trips they have taken. Their conversations are a familial back-and-forth—special inside jokes between family. Harold and Jeff banter, teasing each other and making playful jabs. Their affection for each other is palpable. They often play golf together, sneaking off for father-son adventures.

 

"What would you do without him?" Evelyn looks at her husband. "You'd be so lost." She smiles. "Everything has improved," she continues. "He shaves, wears clean clothes, goes to work for a few hours a day, and he cleans his room. He loves to be involved. His social skills are improving. He's very polite. I've been teaching him how to read and write, and he's learning skills like how to count money."

 

Jeff is also learning about his medications. Tiffany Ward, RN, is part of his Caregiver Homes care team, and she educates him based on his individual learning style. She believes that now that he has stability and a family he feels accountable to, he takes more ownership over his health and care plan. Education, she says, helps in all areas of his life.

 

"For consumers, this skillset broadens their independence and increases their self-esteem," Ward says. "It improves their quality of life and helps them make decisions about their care. Knowing about his medication increases medication adherence and makes Jeff feel capable and proud. He can speak about his medication with his doctor. Care teams should always be assessing whether there are new opportunities to educate consumers about their care."


Not only is Jeff interested in his own care, but also he is now passionate about self-advocacy. He runs upstairs to get a card for the R-word: Spread the Word to End the Word campaign. The campaign is intended to raise awareness about the importance of people-first language. Their website states that the campaign "asks people to pledge to stop saying the R-word as a starting point toward creating more accepting attitudes and communities for all people. Language affects attitudes and attitudes affect actions." Jeff is proud to share the card with others and to be an ambassador for the cause.

 

His person-centered care plan focuses on his goals and aspirations. He plans to volunteer with Habitat for Humanity so that he can help people who do not have a home. Evelyn encourages him to make new friends. The constant supports and relationships that are the foundation of this care model have allowed Jeff to meet his personal goals and thrive in his community.

 

For a person who is used to being the sole caregiver, Evelyn is happy and relieved to have the support of her care team. "It's awesome to now have a team," Evelyn says. "They are wonderful. They're always available. They aren't in a hurry to get off the phone with me. They are there to find out what I need, and they don't talk to me like I have to rush."


Evelyn recommends Caregiver Homes to anyone who has "room in their home and in their heart" for a consumer who needs a family environment.

 

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