Granite House

By: Tayler Sykora

It was a moment the Insley family would never forget, a precious memory engraved permanently in their hearts as a place of solace and peace they would return to many times in the difficult years to come. It was a moment of pure bliss as Aaron and his father Tom proudly stood atop the summit of Granite Peak, Montana, after conquering the 12,799 foot climb to the top, a feat Aaron’s older brother Richard had accomplished eight years earlier. It was a moment that would inspire them for the rest of their lives.

Having victoriously completed one of the most challenging climbs in America, the Insleys felt as though they were on top of the world, but their journey was far from over. A much more grueling climb lay ahead. Only three months after Aaron reached the summit of Granite Peak, a tragic car accident took Richard’s life and left Aaron with a severe and permanent brain injury. The world they once stood on was suddenly crumbling beneath them, leaving the Insley family suspended and desperately grasping for anything secure to hold on to.

But it is difficult to regain balance when what little ground remains is neither stable nor consistent. Eight years have passed since the accident, and the Insleys have become overwhelmingly aware of how few resources are available for individuals at low levels of consciousness. Though Tom and Carol were fortunate enough to be given the opportunity to care for Aaron in their own home, their experience has left them well acquainted with how stressful and exhausting it can be to find proper care for an individual needing full care 24 hours a day. Facilities dedicated to serving this population were simply nonexistent.

That changed when the Insleys came up with the idea for Granite House. Inspired by their own experiences and driven by their desire to aid families in similar situations, Tom and Carol began working with registered nurse Anna Bohnen on developing a design for a long-term residence specifically tailored for individuals with severe and permanent impairments after brain injury. Granite House will not only be the first of its kind to provide adequate housing for individuals living with this condition, but will also strive to increase awareness of the minimally conscious state and construct a community of support for loved ones.

Building a Residence

Thanks to modern medicine, people who sustain severe brain injuries are surviving in greater numbers. They are living long lives, unable to walk, speak, or take care of themselves. The Minimally Conscious State is a level of recovery after coma where the patient plateaus at a low level of consciousness. Despite the continuous increase of individuals who live in a minimally conscious state, the number of facilities that can provide them with adequate care remains limited. This shortage of proper residences is particularly detrimental to the thousands of individuals who are unlikely to emerge into full consciousness and do not meet the level of improvement required by most care facilities. In these situations, there are only two options: in-home care or a nursing home.

In-Home Care:

Caring for someone with a severe brain injury can be extremely demanding, and many families simply do not have the time, the space, or the resources to effectively meet their needs. Whether it be because the family lacks the finances, a suitably structured home, or the time to give them the attention required by their condition, many families are unable to successfully manage in-home care

Nursing Homes:

Traditional long-term care facilities are designed to cater to the sick and aging, and the staff members frequently lack the education and the experience to provide proper care for those with severe and permanent brain injuries. Individuals with these conditions are unable to call for help or press a button for assistance and must be constantly monitored to ensure they are comfortable and feeling well. In a nursing home, it is rare for an individual to receive this type of continuous care. Nursing homes are also often noisy and crowded, making it difficult to spend quality time with loved ones.

But through Granite House, individuals with a severe and permanent brain injury have, for the first time, a third option. Instead of facing what could potentially be decades in a long-term care facility where they are not receiving proper attention or stimulation, people with these conditions can now be cared for by an organization that understands their needs in an environment strategically designed to ensure those needs are addressed. “You can’t control what happens in a nursing home,” says Carol, “But you can control what happens in a place you’ve made”, and Granite House allows her to do just that.

Instead of serving as a rehabilitative facility for individuals displaying signs of recovery, Granite House will serve as a place of residence for those who are responsive to stimulation, but for whom the potential of emerging from a minimally conscious state is extremely faint. There, the residents will be continuously tended to by an experienced staff of care providers where they will receive full assistance with daily activities, social interaction, sensory stimulation to maintain connections within the brain, and a range of therapies specifically tailored to fit the needs of the individual. “This is completely outside the realm of anything that has ever been done before,” says Carol, “Granite House is changing how we care for these individuals”.

The nurturing environment of Granite House will not only provide its residents with proper medical attention, but also a home. With equipment such as motorized beds, wide hallways, an elevator, hydrotherapy tub, roll-in shower, and ceiling lifts for transferring the resident to and from bed, residents will have all the benefits of other care facilities while also enjoying the comforts of home, with features such as big windows, a gas fireplace, a screened porch, a garden, and a large gathering area for spending time with loved ones. Residents will also be exposed to sunshine, fresh air, kitchen smells, soft music and other elements in a typical home setting. Granite House is being built on a wooded lot on Stagecoach Trail, just south of Bayport, MN, with easy access to medical and community resources in the Stillwater area.

Helping Families Heal

Many families of individuals with a severe and permanent brain injury do not have the resources to provide them with the care they need at home and are forced to leave their loved ones to be tended to by others in a nursing home. This causes families to feel detached as they are forced to visit with their loved ones in noisy, non-private rooms where spending quality time together is nearly impossible. “There is a tremendous amount of guilt in not being able to give your child what they need,” says Carol, “It just tears you apart, and you need to know they are safe and comfortable”.

Granite House helps ease this guilt and mend family relationships. By providing families with a quiet place to visit when they can and the comfort of knowing that their loved ones are being cared for when they can’t, families can begin to heal. Granite House, unlike other care facilities, is specifically designed for individuals with severe brain injury, and families can rest assured knowing their loved ones are receiving the attention they need and the care they deserve from an organization that understands. “It’s nice to sit and have time alone together,” says Carol, “You just don’t get that from other facilities”.

Establishing a Support Group

Granite House is not only a place of residence for individuals, but also a place of belonging for their caregivers. Many families caring for someone in this condition feel isolated and as though no one else understands, but Granite House changes that. As a nonprofit corporation devoted to aiding those who have been touched by brain injury, Granite House has developed the first organized support group specifically for individuals and families caring for someone in a minimally conscious state. This support group allows its members to share their experiences, make connections, and find courage with others who understand their situation. Together, they learn how to cope with their circumstances and face the climb ahead.

Generating Awareness

It is estimated that there are up to 100,000 individuals in the U.S. characterized as living in a minimally conscious state, but very few people are aware of their existence, and fewer still understand their needs. This lack of knowledge has not only resulted in an extreme shortage of resources and housing options for these people, but has also caused many to be hesitant and even fearful towards them. By getting involved and increasing awareness of the existence of this group, Granite House hopes to become a model for future facilities as well as catalyst in combatting common misconceptions about individuals with severe brain injuries.

People who are minimally conscious are still people. They have personalities. They have likes and dislikes, thoughts and emotions, and though their means of expression is highly limited, that does not mean there is nothing for them to express. Many of these individuals are able to locate the source of sounds and visual stimulation, occasionally respond to commands, and even reach for objects, and though very few will ever emerge from this state, their lives still matter. They deserve love, care, and respect, and Granite House gives them that.

As a fervent leader in the revolution toward bettering the well-being of individuals in a minimally conscious state, Granite House will be the first facility specifically designed to meet the needs of those living with this condition as well as the first organization to develop a support group of friends and family who have been touched by this level of brain injury. Families can now begin to heal knowing that they are not alone, and that there is an organization out there that understands. With the outline of Granite Peak carefully etched into the logo, Granite House will stand as a symbol of the obstacles we face and our ability to overcome those obstacles. It an uphill battle, and the cliffs are steep, but Granite House makes the climb a little easier.

Granite House is expected to open in 2016

Website: www.granitehousemn.org 
Support group: carol@granitehousemn.org

Granite House Video: https://www.youtube.com/watch?t=44&v=F9480Pl3tig

About the author:  Tayler Sykora is a student at the University of Wisconsin-River Falls majoring in marketing communications with a minor in professional writing. Tayler has an internship with ConnectWC for the summer of 2015 and is writing several articles focusing on disability-related topics of interest to individuals with special needs, their families and the community.
Email: tayler.sykora@my.uwrf.edu
Phone: 715-338-6150