Today we’d like to introduce you to Trish Laub.
Trish, please share your story with us. How did you get to where you are today?
My husband and I moved to the Denver area from Chicago in 2012, not only to enjoy the beautiful mountains but also to be closer to my parents. I always knew that I wanted to take care of my parents should they ever need it, but I had no idea that the need would occur just 48 hours after we arrived in town. My father experienced an unexpected medical crisis, setting into motion a two and one-half year journey of care. I not only managed the daily and medical care of my parents, one with Alzheimer’s but also was a caregiver on the weekly schedule. My sisters, who were responsible for the legal, financial and insurance aspects of care, and I delivered the dignified care and end of life my parents desired. My experience has continued to include the care of my mother-in-law and a dear friend, as well as consulting for others. In all, I have gained well over 15,000 hours of experience in providing dignified care for a loved one, including one living with Alzheimer’s, taking the final walk of their life with them and assisting with settling their estates.
After both of my parents passed in 2014, I was exhausted. At first, I needed some time to regroup and re-energize. Completing an extended period of intense caregiving requires an extreme shift in gears. Although I had many people asking me, and encouraging me, to write the books and provide services, for the next three years, I tried to talk myself out of doing it. I knew that what my family did to care for both of my parents while in crises was an act of deep love and a desperate effort to survive the physical and emotional toll. I also knew that I amassed an abundance of knowledge from it and could help others go through the process thriving instead of surviving. During that time, I was presented more opportunities to both provide care and to teach others how to care for their loved ones. But, my husband and I had moved across the country to Colorado with the desire to enjoy his retirement playing in the mountains. I even attended a Soulful Living workshop aimed at determining the direction of the next phase of my life, with the clear intention of dismissing the notion of writing the book series to help other caregivers. Clearly, I was not successful in my intention. I could not make myself walk away from the personal mandate to write the books and offer the services that Comfort in their Journey comprises.
My background is varied. My formal education is in systems analysis and design. I spent 18 years developing computer systems for a major national corporation. One system was the automation of electronic publishing, which was not only the first of its kind in the country but immensely helpful to me with my recently published books. Later I co-founded both a national dance education company and a national nonprofit prevention theater company focused on helping at-risk teens. I am a Black Belt instructor of The Nia Technique, a movement modality focused on awareness, and have been licensed since 1999. Combining my previous computer, teaching, and presentation experience with my most recent caregiving experience, I created Comfort in their Journey to guide people who are living with Alzheimer’s or another life-altering condition on how to prepare for and navigate the journey of dignified care through the end of life.
Has it been a smooth road?
There will always be challenges, but there have been two main challenges to date.
First, the amount of information my sisters and I had gathered was astonishing. It was a major process to take all of the information and boil it down into three manageable reference books filled with concise, easily accessible and actionable information. I also did not want the books to be redundant, striving for as little repetition as possible, with only the most essential issues presented in more than one book. Additionally, I had to write all three books at the same time to be sure each topic was put into the appropriate book. One of the most often asked questions I receive is why I didn’t write it all in one book. My answer: Amid the stress of being a caregiver, I would have been overwhelmed by a nearly 700-page single book, and I wouldn’t have had time to try to find specific information within that number of pages.
The second challenge is ongoing. Literally, everyone with whom I have shared my work says the same things: I wish I’d had your books when I was going through this; Everyone needs to have your book series. The truth is that people have been limping through the caregiving process for a long time. And everyone says they needed help as a caregiver, need help now, or anticipate needing help in the future. People who have not yet been in or thought ahead to the caregiving process must be made aware that these issues likely will affect their lives. It’s similar to when I was pregnant with my daughter. I never noticed pregnant women, but suddenly that’s all I seemed to notice. And now, I rarely notice them again. What you notice depends on what’s currently on your radar. It’s challenging to get the attention of those who have not yet experienced these issues, let alone those who do not want to accept that they will have to deal with them. I am bringing to the forefront topics that nobody really wants to talk about, but for which it is critical to prepare.
So let’s switch gears a bit and go into the Comfort in their Journey story. Tell us more about it.
Comfort in their Journey provides practical guidance for providing dignified care through the end of life. It was created to provide guidance and direction: lists and bullet points, terminology, things to consider, questions to ask and leads to follow. It offers the opportunity to thrive throughout a process that is often traumatic and stressful and allows little time to research before making critical decisions. It offers caregivers and family members the opportunity to know the options and to make informed decisions – to think and then to take action.
Comfort in their Journey consists of a three-book series, including A Most Meaningful Life, my dad and Alzheimer’s – a guide to living with dementia; Peaceful Endings, guiding the walk to the end of life and beyond – steps to take before and after; and Through the Rabbit Hole, navigating the maze of providing care – a quick guide to caring options and decisions. I also offer individual consulting services and presentations and workshops based on the books. The presentations and workshops can be customized for the needs of specific audiences.
It is obvious that my work can help individuals, families, and caregivers. These topics also have a sizable impact on businesses. The cost of lost productivity or replacement of full-time employees who are family caregivers is estimated to be at least $33 billion annually and rapidly increasing. That figure does not include the increase in business health care costs due to caregiver stress-related illness. I work with businesses to mitigate those losses by offering supportive benefits to employee caregivers such as presentations and workshops to provide information about resources and guidance for current and future employee caregivers. I also offer individual consulting services which I can provide as an employee benefit.
What am I most proud of?
I am most proud of my ability to ease the journey of caregiving for others, to assist in creating solutions to problems, and to elicit the goal of a quality life for all – especially for those with Alzheimer’s and other forms of dementia – and the delivery of dignified care and a peaceful, thoughtful end of life.
What sets me apart?
What sets me apart is three-fold. First, some authors have served as managers of care from a distance, others have managed care on site, and others have provided care. I was in the trenches managing the overall care of my parents, responsible specifically for their medical care while actively caregiving, even having been trained on some procedures by medical professionals so those tasks could be accomplished at home in the way most comfortable for my parents. Secondly, I have experienced the range from crisis through dignified care to end of life, and I also have developed my own philosophy about Alzheimer’s. The book series addresses the entire caregiving process and is the basis of my presentations and workshops, as well as consultations. And third, while there are many books on Alzheimer’s, caregiving and end of life, some are beautiful memoirs which are dense with text and some offer vignettes or anecdotes but few real actionable tips. My books were carefully designed for those in care crisis. They have been printed with a larger character font for ease of reading and ample white space on the pages so the reader is not overwhelmed. They are not necessarily designed to be read front to back. The table of contents is extremely detailed, allowing the reader to quickly find the topic they need. Each chapter is broken down into several sub-chapters, which in most cases are very few pages. The books were also designed to minimize the repetition of topics. For example, because of its importance, the topic of patient advocacy is addressed in each book but detailed in Through the Rabbit Hole. The bulk of the content is actionable information.
How do you think the industry will change over the next decade?
The industry (Alzheimer’s, dignified care, and end of life) will continue to grow rapidly.
The statistics on Alzheimer’s are unimaginable. According to the Alzheimer’s Association, today there are 5 million Americans diagnosed with Alzheimer’s and that is increasing by one diagnosis every 67 seconds. By the year 2050, it is projected that there will be 16 million diagnosed, requiring 80 million caregivers at a cost of $1.1 trillion. Worldwide the projection is 160 million diagnosed, requiring 800 million caregivers at a staggering cost. And that’s just Alzheimer’s. It is also projected that in addition to formal caregivers, the number of informal caregivers (unpaid family members and friends) in the United States currently exceeds 65 million. Exacerbating the problem, according to a recent New York Times article, is that “a decade from now, most middle-class seniors will not be able to pay the rising costs of independent or assisted living,” leaving the responsibility to family caregivers. And finally, death is universal.