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.

“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.