By Karin Krause
Nearly 50% of Americans now report troubling feelings of loneliness. 42% of Millenial women are more afraid of loneliness than a Cancer diagnosis. Very young children describe feeling sad, alone and fearful. And, unfortunately, loneliness is not removed by being physically near people. Early in my nursing career I observed older adults crowded together in a nursing home--with their heads hanging low and their eyes closed. And I wondered, what is needed for people to create friendship? My conclusion is that we create friendships around the work of life or when we are involved with something we enjoy or feel passionate about. At Hope & A Future, we aim to reduce loneliness by bringing the generations together in a unique neighborhood model. Our aim to create a diverse intergenerational Family of Friends among vulnerable community members has been more successful than expected! Recently, as a new board member joined us, I asked her why she was interested. She stated, “I am surprised and thrilled to find an American who understands the value of community! I tell people from home (Cameroon, Central Africa), you think people in America are rich but they are not. They have everything except, community.” Americans value independence, but this has come with a price--loneliness across generations.
The Therapeutic Interactive Intergenerational Neighborhood (TIIN) model being developed at Hope & A Future reaches out to the fastest growing segments of the population, older adults and families with young children living at or below the poverty threshold. Our goal directed model of living addresses the following:
In 2017, at the UW Madison School of Nursing, I had the pleasure of hearing Dr. Catherine Alicia George lecture on “Building Cultures of Health for Older Adults through Community Engagement”. I share her belief that Nurses are well positioned to assist because their practice is deeply rooted in disease prevention and health promotion and because Nurses are skilled at treating the whole person within complex family, social and economic systems. After her lecture, I had an opportunity to share my vision to build a Therapeutic Interactive Intergenerational Neighborhood (TIIN). In the midst of our conversation, she said, “This should be the future of our country”. By 2017, enough state legislation had been changed to have the first phase up and running. Our nonprofit owns 5 ½ acres of land and pays bills from funding streams for services provided. Hundreds of volunteers have helped and it is estimated that we have received over $2 million in pro bono legal and development help. Our pioneering project faces regulatory hurdles with each phase of development.
In the December 2019/January 2020 edition of AARP, the article titled, “Is There A Cure For Loneliness?”, Lynn Darling (pgs.50-55), it is pointed out that loneliness and social isolation trigger cellular changes that result in chronic inflammation predisposing the lonely to serious physical conditions like heart disease, stroke, metastatic cancer and Alzheimer's disease. Loneliness is often a precursor to situational depression and hopelessness. Hopelessness is characterized by the lack of optimism and passion. Young adults and children growing up in generational poverty often report having no expectation of future improvement or success. Behavior problems and anger are common outcomes and further jeopardize success in school. Lonely children suffer lifelong negative effects on their mental and physical health. Approximately 20% of children in the United States live at the federal poverty level--that is 13 million Children. These families need assistance to provide for basic needs. In fact, Families need twice this income level to cover basic expenses. Using this standard, 40% or 26 million children are at the poverty threshold. Many seniors in nursing homes have told me they feel like hopeless prisoners. Thirty percent of older adults live alone with chronic health conditions, many with limited family and social support. Loneliness and hopelessness have a dramatic negative impact on the mental and physical health of older adults across income levels. The AARP article suggested a possible medical intervention and a societal need to reduce isolation and loneliness. The TIIN is a neighborhood style social intervention.
Racial and gender disparities continue to plague our country and increase anger and hopelessness. Increased mass shootings, shots fired, and addictions are symptoms of a suffering society. Robbery, gangs and sex trafficking are, unfortunately, financial solutions for people living in poverty or supporting addictions. Although diversity is growing, the lingering disease of bigotry continues. Difficult conversations and relationships with diverse people are not generally accomplished in the context of large groups, they happen in 1:1 relationships. Traditional approaches of building large affordable housing complexes in low opportunity neighborhoods concentrates hopelessness and appears to normalize criminal activity as a solution to accessing money. Large long term care settings away from the mix of life also concentrate hopelessness and wastes human potential. The TIIN is a smaller, staffed neighborhood model designed to offer intergenerational goal directed living, welcome diversity and facilitate genuine purpose and belonging.
As a nursing instructor for CNA students, I heard pregnant young women who grew up in poverty answer the question, “do you want a boy or a girl?” with “If you have a boy you have to worry about prison and if you have a girl you will have to help with all those babies.” I watched these Mothers refer to their little boys as “my little inmate”. And I heard their first and second grade daughters tell their friends who their first and second baby-daddys will be. I taught CNA classes where students apologize in advance for the fact that they will not make it to the required clinicals because they never wake up that early. When I suggested they set their alarm clock, I was asked what an alarm clock was. Until then, I had no idea there were people that did not know what an alarm clock was. This fact explains a lot about children missing school and people losing jobs because of chronic lateness. I have concluded that unless we live closely with people from different backgrounds, we will never fully understand each other or narrow equity gaps, nor will we understand differing social pressures.
I once gave students a rose to take home as a celebration of making it half way through class successfully. Over the weekend, two students were beat up by boyfriends who suspected unfaithfulness--stating, “No teacher gives you a rose.” Other students reported friends and family saying, “With all that education, I suppose you will start thinking you are better than us.” These students successfully completed the class, but some never made it to the state exam. Helping people move beyond the poverty threshold is complicated. People need exposure to a different way of living and hope needs to be cultivated. This topic is beautifully addressed in J.D. Vance’s New York Times Bestseller, Hillbilly Elegy, A Memoir of a Family and Culture in Crisis. Vance cites the need for financially inclusive living so people growing up in generational poverty can see a different way to live and develop both vision and hope for their future. Our TIIN model provides a structure for financially inclusive living in a new kind of intentional neighborhood. Cultural sensitivity is openly addressed, stories heard, and young and old help each other.
Social support is currently a problem for people of all ages and income levels. Older people with financial resources, have died of starvation in their homes because of their lack of social support. We once received an emergency admission at Hope & A Future. Thankfully, neighbors noticed that the lights stopped coming on in the home of a seclusive woman of means. Joy’s utilities had been cut off and she was eating rotting food out of her refrigerator. Upon admission, I found a profoundly underweight woman who had not seen a doctor in over 30 years. Her toenails looked like basket weave and she had an infection in a toe spreading up her leg. She was still walking across a busy street to have her hair done once a week and showing up at the Overture Center--in a mink coat and stocking footed. Her toenails had not accommodated shoes for years. And she spoke before performances at the “Ask the Expert” sessions. We later found she was blinded by cataracts and had been driving her car by listening to traffic sounds. Because of her natural brilliance, she was good at covering her dementia. Her long term memory was intact and she could teach as a true expert. She spent the rest of her life sharing a home with us, often expressing great joy at having people to talk to. She taught us about her favorite topics and beat us at trivia! In spite of surgery, her large cataracts had permanently damaged her eyes. At the end of her life, she believed she still went to concerts and the opera every Saturday. We turned on NPR or a CD, gave her a weak martini and she listened and imagined the event. On Sundays, we played the TV recording of her church service and walked in to seat her as if we were ushers. She loved and taught us a great deal and we still shed tears in remembrance years after her death--in the end, she was not alone, she was part of a family of friends.
Research shows that seniors fear nursing homes more than death. The cost of Nursing Home Care is $14,000.00 per month in this area. Care is unsatisfying. Short staffing and stories of abuse are real and result in older adults avoiding care even when they know living alone is unsafe. Home care also comes at a high price and the shortage of caregivers is a growing crisis. 80% of long term care is provided by unpaid family members and friends--and for many this social support is not available. Neither families nor the government can afford the cost of current systems. The TIIN model offers a more affordable model that allows older adults to downsize and stay in their new neighborhood for the remainder of their life. TIIN Neighbors needing increased levels of care will have the opportunity to hire neighborhood staff for in- home care or move to the neighborhood Adult Family Home if care needs increase.
Human Resources expert, Paul Osterman, Author of the book “Who Will Care for Us: Long-term Care and the Long Term Workforce”, examines trends in the labor force market for caregivers. He describes the future as an absolute train wreck waiting to happen. His “conservative estimate” is that by 2030 there will be a shortage of 151,000 paid direct care workers and 3.8 million unpaid family caregivers. By 2040 the shortage is expected to reach 355,000 paid workers and 11 million family caregivers. A new report from the Paraprofessional Healthcare Institute (PHI) focuses on Personal care aids, home health aides and nursing assistants. They predict 7.8 million job openings by 2026. There are now 10,000 baby boomers turning 65 every day. 75% of Americans over 65 live with multiple health conditions. In 2018 103 Billion was spent on Home Health care. Unpaid care provided by family and friends adds 470 Billion. Currently 1 in 5 staff positions are vacant and staff turnover is at 50% in long term care settings. The need is great and the potential workforce is not there. Wages keep people in this sector of the workforce living in poverty. The TIIN provides a new option for supporting lower wage earning caregivers with room and board. We once had three women and two children move here from abusive homes. They became a support system for each other. None were able to afford a safe home, car, food and healthcare without the room and board they received in exchange for helping with evening and weekend caregiving. They were encouraged to pursue goals by their new Family of Friends. All of them have moved forward.
Hope & A Future’s TIIN model is a new approach. The TIIN has pushed the limits of governance, business practices, caregiver roles and support and engaged volunteer involvement to develop its’ first phase. We need help to build the next and biggest phase. We believe our smaller neighborhood settings can accomplish more than traditional approaches to affordable housing and long term care. Our next phase proposes the combination of 8 Independent Housing units For Older People and 4 units for families moving in with children under the age of 9. Our Adult Family Home (AFH) provides care for 4 older people and up to 8 additional people; 6 or 7 caregivers and one or two children. Our current intergenerational AFH offers onsite room and board to lower wage earning staff, in exchange for help with evening and weekend hours. This helps with caregiving costs, gives our staff a stable home and our residents a stable staff. And our new community space will provide daycare services, intergenerational programming and volunteer opportunities available to the greater community.
Our approach is not institutionalized. We are not looking at defined groups of people and coming up with a one size fits all approach. We are looking at the potential of individuals in target groups. We help people define their strengths, needs and goals. And we develop approaches that empower people to be helpful while being helped. Empowering people to help others gives purpose and belonging and builds the self esteem needed to flourish in life.
In our current Adult Family Home even dementia patients flourish. Rosemarie was admitted with dementia, Parkinson’s disease, a heart condition, spinal stenosis and a history of frequent falls. She was depressed and completely dependent on caregivers for all activities of daily living (ADLs). We asked her what she would like to be able to do again and she said, “golf”. We agreed on the goal of teaching the household how to swing a golf club. With this motivation and a care plan designed by the live in RN and OTR she was a new person 6 months later. She became independent with ADLs and by spring, we were all out in the yard swinging at golf balls! The next winter she decided to raise funds to buy new pool mechanicals for an old pool on our property. She requested brochures and a facebook video. By summer she raised the money and we swam together in our heated pool! She had dementia and a background in sales! Rosemarie also brainstormed our annual Oktoberfest and a dance group called the Polka Walker Mommas! All of our lives are richer because of her!
Young and older people are uniquely equipped to help each other flourish. We believe our sustainable and replicable model has the potential to change the face of long term care and rebuild neighborhoods. We reestablish the role of older adults as mentors and empower young families to become helpful neighbors as they work toward personally defined long term goals. The first phase of our replicable and sustainable TIIN model has been more successful than we expected. Hundreds of community members are involved with our intergenerational volunteer projects and activities. Volunteers have told us “I feel like I am coming home when I arrive” and “Words can not express the difference becoming part of this community has made in my life.” We are a positive force in the greater community. People 2 months to 102 years of age have flourished in this unique setting!
Funding streams from services provided keep our budget in the black, volunteers help us maintain our property, care for our vegetable and flower gardens and run intergenerational activities. Fundraising is done for bigger maintenance projects, capacity building and building projects. Pro Bono lawyers, business leaders, architects, engineers, developers, researchers, governing bodies, educators and advanced study students have worked with us on this pioneering project since 2002.
Our non-profit board of directors and committee members is culturally relevant. As the RN Executive Director I live on site with my husband, an OTR and the rest of our caregiving family of friends. This is a genuine home and although our start is small the community awarded us Best of Madison Assisted living/retirement living in 2018 and continues to nominate us. The community tells us they love our welcoming culture and vision. We offer new hope.
National intergenerational leader, Brenda Ehart (pictured above) visited and local TV, newspapers and bloggers write about us. We have been invited to speak at local, statewide and international conferences on topics such as; Building an Intergenerational Volunteer Community, Changing the Focus of Care to increase the Quality of Life, Living Fully to the End, and Building A Therapeutic Interactive Intergenerational Neighborhood. Brenda Ehart states we have the best program she has seen for people diagnosed with dementia and more community involvement in any neighborhood intervention she has seen. Click here to read more about Karin and Brenda's history and connection.
Older adults become stronger and more engaged. Some residents have come out of skilled care settings where they sat in wheelchairs and hung their heads with closed eyes, existing more than living. At Hope & A Future they engage with us to the end!
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Written by members of the Hope & a Future community including residents, volunteers, and staff.