The agency focused on four main areas of relief and development: medical, education, agricultural and livestock. If these four areas could be addressed then the community stood a much greater chance of improving their living conditions. With such a wonderful opportunity before it what did the agency do? It waited. It waited until the community could demonstrate it could sustain the improvements the service agency was going to provide them. The agency knew from experience that if the community was lacking the will and leadership to work through the tough times, they would give up and the project would not only fail, but leave the community feeling even more discouraged.

In order to help the community succeed in the tough times the agency required the community to select four leaders - one for each of the areas of the relief and development effort. The leaders were then required to spend a year preparing for their role. Part of the preparation involved meeting with the agency at a location outside of their community and part of the time was spent meeting with the members of the community to gain their confidence and understand their expectations. This approach, although often seen as tough love, resulted in an amazingly high rate of long-term success.

 The lesson for us is that effective caregiving cannot take place in isolation. We must prepare for the long-term challenges. We must engage a larger group of individuals, some of whom may be family and friends and other that may be paid professionals and service agencies. We must learn all we can about the tasks we will be undertaking, the experience and expectations of the support team, and the unique needs of the individual for whom we will be providing care. If we embrace this long-term perspective we will greatly increase the odds of success for a highly quality life for the people we love so dearly.

Since 1990, when his son Austin was born with very involved development delays and physical disabilities, Ken has committed his life to finding better ways of serving individuals with involved care needs. He served on the boards of several large developmental disability service agencies as well as other community-based human service organizations.

In 2001, Ken and his wife founded Exceptional Kids, a social and recreational program for children with special needs. The program has grown to four club locations in Colorado, providing family support and high quality programs to over 100 children.

In 2004, Ken formed National Care Connection to begin providing caregiving information solutions to human service organizations. In 2009, National Care Connection expanded into the consumer market when it launched its CareGiver360 Personal Care Guide web service which provides a creative person-centered approach to effectively communicating an individual’s unique care needs.

Issues of responsibility aside, Gianni is nervous about this reunion. He echoes a commonly felt uncertainty about how to react in the face of serious disability. The film unfolds in Berlin, where the 15-year-old Paolo undergoes an injurious program of rehabilitation at a hospital. At this clinic, Gianni encounters Nicole. Nicole is the mother of a child with disabilities even more severe than Paolo’s and upon their meeting she warns him to “Prepare yourself for suffering.” Sizing up Gianni as a first-time hospital parent, she tells him she’s surprised to see him there: “It’s rough the first time. This is the mother’s dirty work. Fathers can’t take it.”

I recall this movie because it is a reminder that the demands of caregiving can be seen as overwhelming and for many families it certainly is. Friendships can disappear, extended family may feel uncertain as to how to help, and marriages can experience great stress. Nicole’s advice to “prepare yourself for suffering” is a common response. While some form of suffering may well be part of the experience, I believe we can overcome the suffering.

When we ask ourselves the all important question “Now what?” we need to know that we can only answer the question accurately after a time of quiet reflection and not hectic frustration. There are always solutions that can help alleviate our caregiving problems although they may not be ones that come to mind immediately.

As the film moves forward Gianni overcomes his uncertainty and begins to understand his son Paolo in a more complete way. He gains insight and compassion and ultimately seeks to gain a more intimate long-term relationship with his son. The process of quiet reflection, search for understanding and simply spending time in the presence of his son enabled Gianni to achieve what seemed impossible just a few weeks earlier.

I like to think that CareGiver360’s personalized care guides provide the insights necessary to achieve a more complete understanding of an individual’s care needs. With a more comprehensive view, the question of “Now what?” becomes far easier to answer.

 I first met my beloved father-in-law, Bernie, when I was in college. It was love at first sight. Over the years, I watched him teach us by example that a person should always walk his path with caring and compassion, treating others with sensitivity and consideration for what they might be going through. He would always say, “You have to look beneath the surface to truly understand another person’s behaviors.”

 Several years ago, Alzheimer’s disease began to rob Bernie of his memory and his ability to take care of his own personal needs. As it progressed, Alzheimer’s disease ultimately transported Bernie into an alternate reality that we could not share. My husband and I knew that it was time for him to be treated as he had treated everyone throughout his life: with loving kindness and compassionate care.

 Knowing Him Now

 But that goal proved far more difficult than we anticipated. Bernie’s adoring wife had difficulty adapting to Bernie as the disease affected his personality and abilities. This made it difficult for her to tell home care aides what he needed or how to prevent his increasing anxiety and behavior issues. For my husband and me, work responsibilities made it impossible for us to be there to teach every aide how to help Bernie feel safe and calm when caring for his daily needs.

 These misunderstandings escalated Bernie’s outbursts, and led to more sleepless nights than my husband and I could count. That’s when a wonderful friend told me about CareGiver360, a secure online service that lets us create a detailed, up-to-date profile of our Bernie, as well as a personalized care guide that other family members, respite workers and home care aides could view to better understand how to interact with and care for our father.

 Shared Insights

 Families who have cared for a loved one with Alzheimer’s disease know that every day creates a whole new set of challenges, and our family’s journey is no different. But CareGiver360 allows us to easily share new approaches to Bernie’s care with everyone involved. And my husband and I take comfort in knowing that his mom can spend more time with her memories of Bernie as he was, while his caregivers are provided with the best care information for Bernie as he is.

I often find that there is a profound personal connection behind many caregivers’ career decisions. When I ask care providers why they chose this line of work, many answer that a previous experience in their lives compelled them to become caregivers. It is the positive personal experience with care giving that motivates caregivers to provide the highest quality of service and provides that greatest legacy of care.

 In my case, I was abruptly faced with the responsibility to provide effective caregiving when my son was born with severe disabilities. Although I was not expecting to take on the role of caregiver until my parents grew old, I can look back on the years before my son was born and recognize that I had a positive personal experience with caregiving that prepared me in a unique way for the responsibilities that lay before me.

From 1985 to 1992, I spent several years traveling and living in China, Indonesia and parts of Africa and Central America. While these experiences were certainly an adventure for me, I also spent a great deal of time observing and learning about different communities and cultures. Looking back, it was also a time of learning patience and unbridled optimism. I learned how to work with the people around me to solve problems rather than wait for outside resources or programs to provide the answer.

 These experiences and the lessons I took from them ultimately determined my course of action when Austin was born. I immediately did extensive research to understand his disabilities and what lay ahead, but I also pledged to myself that I was going to provide solutions to meet his needs.

 For nearly 20 years, I have remained faithful to that pledge. I have worked hard to create my own solutions for my son and for others who depend on caregiving to enrich their lives. I now have complete peace with my responsibility to provide the best possible care to Austin. And like the experience I had before Austin was born, I know it will be a time of great learning, observation and adventure.

 My grandmother is about to reach an amazing milestone in life: in September she will be turning 100. She has been blessed with a very healthy mind and body for most of her life. Despite her recent health concerns she has lived a life of independence that many of us hope for.

 Over the past decade she has begun to experience more frequent medical conditions that have slowed her pace a bit. These obstacles continually frustrate her and cause her to ask God about His plan for her life.

 Her attitude differs greatly from that of my 19 year old son, Austin, who, for his whole life, has lived with severe developmental and physical disabilities. He has not experienced a life of independence and freedom from health concerns, but he certainly has experienced a great deal of joy in his life. Austin’s outlook on life is filled with wonder and curiosity. 

 When my family went to visit my grandmother during a recent stay at a rehab center, the difference in their two outlooks became very clear to me. It was apparent that she felt alone, frustrated and uncomfortable. Given the fact that the last time I saw her we ended up discussing Bon Jovi’s recent concert tour, her change in mental outlook was quite shocking to me. The staff did not seem to know what she needed or wanted in order to feel fulfilled and engaged in life. They simply treated her condition, but not her spirit.

 My son, by comparison, continues to enjoy life because his caregivers, my wife and I, can anticipate and provide him with all the things that nourish his spirit. It is our knowledge of his life and needs that enable us to allow Austin to bring joy and happiness to those around him.

 Although the difference in age between my grandmother and my son is 80 years, their fundamental needs are the same. Possessing an intimate understanding of what a person needs to engage in the world and feel fulfilled is critical to a successful caregiving experience and can result in joy that can be shared with the community.

“The CareGiver360® service is very easy to use and is a wonder tool for transferring all the information I have about AJ’s care needs and quality of life to the new caregivers who are now helping us.”
- AJ’s Parents

A Family Member Unable to Advocate for Himself

AJ is a young man who certainly enjoys being around friends and like many young men his age, is looking forward to the excitement that life has to offer. He has, however, a few challenges that most typical young men do not face. AJ was born with cerebral palsy and developmental delays. He is non-verbal and uses a wheelchair for his mobility. He is not able to provide any self-care including feeding, hygiene and other daily caregiving activities.

AJ has spent the last 16 years of his life receiving high-quality support from his school system and local service agencies. Now that AJ is out of high school and looking forward to his adult years, he is confronted with the new reality of needing independent caregivers to provide the daily support that the schools once offered. It is a challenge that requires creativity and flexibility to meet AJs’ unique needs.

The most important challenge of providing caregiving support to AJ is figuring out how to introduce AJ to a new caregiver and provide information that is easy to communicate and understand. His parents have been intimately involved with every step of his care for his entire life. While this has resulted in very good care, it also means that when his parents are absent, the caregiving quality can drop off quite a bit. It is a situation that needs a new approach.

Creating a Care Guide

When AJ’s parents became aware of CareGiver360® they quickly realized this was a service that would provide a way for them to not only create a care guide that contain organized care information about AJ, but would also make it very easy to share that information with others. Due to AJ’s involved care needs, the CareGiver360® personal care guide is now the first place his parents go to record his care needs. For AJ’s parents “The CareGiver360® service is very easy to use and is a wonder tool for transferring all the information we have about AJ’s care needs and quality of life to the new caregivers who are now helping us.”

“CareGiver360® is the ideal place to keep all of Maddie’s information. Instead of making several phone calls in the morning to give updates, I can just post the information on the website for everyone to easily review.”
- Laura, Maddie’s Mom

An Infant’s Chronic Condition

Watching your child suffer from a chronic illness is never easy, but trying to understand how your infant feels when she can’t communicate is both difficult and worrisome. Since Madison was born, her mother, Laura, always knew there was something the doctors weren’t catching. “It’s just a simple cold” the doctor would say. But watching their baby struggle night after night for Maddie’s first few months left her parents both exhausted and very concerned about her health. After all, their other daughter had always slept through the night, so what was going on with Maddie?

When winter set in, Maddie couldn’t sleep well, keeping herself awake by constantly thrashing her little body around in an attempt to get comfortable. After one long night of uncontrollable coughing, Laura took Maddie to the pediatrician. They learned she contracted RSV/Bronchiolitis, was hypoxic and was immediately hospitalized for almost two weeks on oxygen. Over the next several months, Maddie was admitted five times for her respiratory issues and was diagnosed with reactive airway disease. Her pediatric pulmonologist said Maddie would need to be supported on daily medication to keep her little lungs open, especially during the cold winter months.

With Maddie’s parents both working full-time, keeping all her daily medications and needs in order for Maddie’s caregivers was very challenging. Depending on how Maddie was doing in the morning, it would set the stage for her dosages of medication, oxygen needs and treatment throughout the day. What she needed one day could completely change for the next. Descriptions of what to watch in Maddie’s respiratory behaviors, types of coughing to be concerned with and any signs of breathing distress needed to be updated daily and fully available for her different daycare teachers and grandparents.

Sharing Treatment

“CareGiver360® is the ideal place to keep all of Maddie’s information,” said Laura. “Instead of making several phone calls in the morning to give updates, I can just post the information on the website for everyone to easily review.” Maddie’s Personal Care Guide allows Laura to update her daughter’s daily medication needs and provides a place where her caregivers could read information about Maddie’s condition and learn what to watch for in case anything changes in her breathing throughout the day.

“The first winter was very difficult. But now that we know what our daughter needs and we have a convenient way to communicate those needs, it really puts us and her teachers at ease!”

“The thought of losing him terrified me, but the thought of him losing quality of life scared me even more, because he deserved better.”

– Monica

An Aging Loved One

At one time or another, most people will face taking care of an elderly parent. For Monica, she was faced at a young age with taking care of her grandfather when her mother was unable. Monica’s grandpa, Jack, was always a constant in Monica’s life. When he was diagnosed with COPD and advanced emphysema at 70 years old, Monica learned how precious life really was.

Monica saw her ailing grandfather being transferred between nursing homes and took the responsibility upon herself to ensure the staff was adequately taking care of him. “The thought of losing him terrified me, but the thought of him losing quality of life scared me even more, because he deserved better.”

Monica was soon able to find good in-home care for her grandfather, with family and close friends stopping by for long visits and to help out. But with so many caregivers, relaying information about him was challenging. “I couldn’t always be there for him, but I knew the people around him loved him and wanted him to be well cared for.”

Sharing Care and Support

Monica began using CareGiver360® as a way to provide good information about Jack’s condition to his caregivers, but then quickly realized how beneficial the Care Categories were for storing personal information about his daily needs. “Everyone that came to help could actually watch videos of how to take proper care of grandpa, even the little things like helping him out of his chair to his walker.” Knowing that in her absence her grandfather was well cared for meant the world to Monica. “I knew he was in good hands already, but using CareGiver360® really put me at ease.”

“I immediately signed up for CareGiver360® and added all of Steve’s information. His therapists told me they liked accessing his information online because they could see notes from the other therapists about his progress, and then easily adapt their routine to help Steve re-learn the basics.”
– Sarah

A Sudden Illness

While spending a typical Friday morning at work one day in March, Steve suddenly fell ill. Thinking he was getting the flu, Steve headed home to get some rest. When his wife, Sarah, arrived home, she helped Steve get comfortable in bed, then spent the evening taking care of their two young children.

When Sarah awoke the following morning, she found Steve to appear severely dehydrated. After attempting to communicate with Steve, Sarah was alarmed to notice that he was disoriented and incoherent. Sarah immediately rushed him to the ER and within hours, he slipped into a coma, unable to communicate or respond. The scans showed that Steve had Brain Stem Encephalitis, causing him to lose the ability to control the vital functions of breathing, blood circulation and digestion. Steve suffered from multiple seizures and underwent a tracheotomy.

After spending two weeks in a coma in the ICU, Steve became responsive and was quickly prescribed to different therapy regiments to work on getting him back on track.

Easing Recovery

With months of rehabilitation ahead, Sarah needed to find a way to juggle working and taking care of her children and husband. Steve was in for a long road of in-patient, out-patient and in-home therapy, with multiple doctors and therapists working around the clock to ensure a quick recovery. Steve had to be consistently monitored and cared for and had different medications to keep his body regulated and to prevent seizures. Keeping track of all the information quickly became daunting for Sarah, until a friend introduced her to CareGiver360®.

Sarah was relieved after viewing the CareGiver360® Web site. “I immediately signed up for CareGiver360® and added all of Steve’s information. His therapists told me they liked accessing his information online because they could see notes from the other therapists about his progress, and then easily adapt their routine to help Steve re-learn the basics.” CareGiver360® provided a way for Sarah to keep Steve’s information organized and accessible, helping Sarah focus on what mattered most, her husband and children.