Help from the Heart for Alzheimer's Patient and Caregivers
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In 2012, Trish Laub’s life took a turn she never had anticipated. The former Kane County resident learned that her father was being treated for Alzheimer’s disease. Symptoms generally increase very gradually in the early stage, but by 2012, Trish and her husband decided to move to the Denver area to be closer to her parents. Just 48 hours after arriving in town, Trish learned her father had suffered an unexpected medical crisis, which heralded the beginning of a two-and-one-half year journey of care.
“With very little knowledge of the current medical and care models and no warning to prepare or learn,” Trish said, “my initial reaction to my parents’ medical crises and need for full-time care was shock. I couldn’t believe how quickly it became necessary and I was afraid that I lacked the skills to provide that care.
“As the journey began I quickly realized that I did not have the knowledge or resources I needed, and without knowledge I felt powerless. There were times that fear and self doubt were completely overwhelming and nearly froze my ability to deliver what was needed from me. And of course exhaustion didn’t help with the emotions.”
Building on skills acquired during 18 years developing computer systems, co-founding both a national dance education company and a national non-profit prevention theater company for at-risk teens, and the discipline acquired while working to a licensed Black Belt instructor of The Nia Technique, Trish began the journey of researching, learning, serving as caregiver, and managing both the care teams and the medical care of her parents.
“There are a variety of reasons why I was able to survive, and sometimes thrive during the process, but what I really needed was knowledge: a roadmap, a guide to direct me, to ally my fears and to let me know that there was easily accessible information available,” Trish said.
Over a period of five years, Trish accumulated 12,000 hours of experience in providing care for a loved one, including on living with Alzheimer’s, taking the final walk of their life with them, and settling their estates. Knowing what she experienced throughout the process and how much more difficult the lack of knowledge made the experience, Trish used those hours of study and care to create a service for others facing the same situation.
The result is Comfort in their Journey, which includes a book series, consultation service, and public speaking to educate and guide others. Statistics suggest this is a much-needed and long-overdue endeavor. According to the CDC, Alzheimer’s affects 5.7 million Americans, and that number is expected to grow significantly over the next three decades. One in 10 adults over the age of 60 will be diagnosed with the disease, and it is currently fifth leading cause of death for those over the age of 65.
And someone will have to care for these people. More often than not, it is another family member who accepts the role of caregiver.
“It is likely that in each person’s lifetime, they will be responsible for the care of another,” Trish said. “Being a caregiver is one of the most important, valuable and necessary roles, and often one of the most challenging experiences in a lifetime. Most times, it is not a role for which we are trained or prepared and often arrives unanticipated.
The Comfort in their Journey book series addresses the issues families face when caring for a loved one through illness and end of life. A Most Meaningful Life shares Trish’s own story, sharing the way Alzheimer’s disease affected her father and his loved ones, and the family’s commitment and efforts to provide the best possible quality of life through her father’s final days. Peaceful Endings addresses end of life and beyond, Trish walks the reader through decision-making, including medical, legal, financial, and insurance issues. She clarifies the language and outlines the steps that must be addressed. Through The Rabbit Hole is an essential “nuts and bolts” reference for new caregivers, offering is the book Trish says she wished she had when suddenly faced with responsibilities for which she was unprepared at the time. The books are available at the author’s website at www.TrishLaub.com and also at Amazon.
Trish advocates having the difficult conversations we all prefer to avoid, because those conversations provide a blueprint for family members who will be responsible for your care. This removes the burden of guesswork from them and ensures your wishes will be known should the need arise.
“People are reticent to plan for their end of life, as the process is highly personal and requires us to face our inevitable mortality, triggering fear and negativity,” Trish said. “When end-of-life planning is viewed as being as much for those who care for you and help you live your remaining days as you choose, it becomes a great gift. It provides a roadmap for them to follow and assists with a smooth transition for everyone, removing the stress of having to guess at your wishes.
“In addition, identifying your end-of-life wishes before medical crisis or end of life is imminent, allows for decisions to be made calmly, rationally and without fear. Discussing the plan with your loved ones removes the fear and anxiety for them of not knowing your wishes and can start an open conversation. It is a gift of peace of mind for everyone.”
Trish offers numerous workshops on related topics, addressing issues specific to Alzheimer’s disease, caregiving, estate planning, and self-care for the caregiver.
“Caregivers are truly unsung heroes! They are willing, sometimes when nobody else is, to accept the physical, mental, and emotional toll of caring for, protecting and advocating for the quality of life of another through their final days,” Trish said.
Toward this end, and with the compassion that can only come from personal experience, Trish also offers consultations by phone or video chat to those needing assistance along the way.
“The path of a caregiver is variable and often uncharted. The specific circumstances that they will face are not always known at the beginning and change throughout the journey, resulting in a constant need for information and resources,” she said. “A consultant who has not only managed a care team, but who has also been a caregiver, understands and can help a caregiver identify a philosophy, goal and strategy for providing care, as well as provide creative solutions to unexpected challenges. A consultant is there to understand and assist, so that the caregiver can thrive, instead of merely surviving, throughout the process.”
Businesses also are affected when an employee becomes a family caregiver. Gallup reported several years ago that the cost of lost productivity among full-time employees tops $25 billion per year. The figure increases to more than $28 billion when part-time employees are factored into the equation. Trish is available to make presentations to companies that are interested in learning more about how the impact of family caregiving affects the bottom line, and how changes in corporate policy could help mitigate those losses while removing a great deal of stress from employees who are also caregivers.
Trish said although she’d planned to retire after this experience, she felt compelled instead to create this service.
“Comfort in their Journey resulted from a personal mandate for me to help those living with Alzheimer’s continue to live a meaningful life, and to help families navigate the maze of providing care,” she said. Her service helps families accept the loss of a loved one with no regrets.
“For me, having no regrets means that I delivered the very best dignified and compassionate care possible for my parents and the end of life they desired,” she said. “It also included that I fulfilled my promise to keep them safe.
“The key to having no regrets is to know the wishes of your loved ones and to always focus on what is best for them, even if it means having to let them go. In short, I have no regrets because I know that I did my best.”
For more information, visit the website at www.TrishLaub.com, or contact Trish via email to info@TrishLaub.com or by calling 720-288-0772. She is available to assist families anywhere in the country via phone and video chat, and to travel for presentations and speaking engagements.
