Stories

Richard and Trish Hughes Kreis – Caring for a Brother, a Spouse and a Mom – The Trifecta

Richard Kreis – Caring for Family Members and Himself, He is Known as Trifecta Richard on Social Media Sites. Richard’s caregiving journey began with himself back in 1993 when a DUI driver hit him causing a spiral tear in his low back nerves and muscles.  This created a lifetime of chronic pain for him which has affected not only himself but those around him, his employment and much more. Richard and his wife, Trish, now care for her brother, Robert (54) who was born with epilepsy.  Over the 24 years Richard has known Robert he has seen him go from living alone, going to church, taking the bus for tasks to needing constant care and support.  Robert has lived in the house with Richard and Trish for almost seven years. They also now care his mother, Carol (77) who deals with strokes, mobility issues, various heart related issues (COPD, CHF) for going on 15 years and has needed multiple surgeries to try and correct them.  Her condition has required her to stop driving and living alone.  She has shared the home for about the past 3-4 years on and off and recently moved in full-time. With all the research and people Richard has spoken with over the years, websites he’s researched all to learn about his condition as well as the conditions of his mother and brother-in-law, Richard wants to pay forward all the help he’s received from so many.  Richard gives back by helping others learn about caregiving (ex. […]

Dennis Dulniak – Caring for a Wife with Dementia Spurred Activism to Create Dementia Friendly Dining

Care Partner – Not a Career Choice but a Labor of Love In 2014 after careful financial planning, my wife Nancy at age 62 retired from her meticulously accurate career as a Librarian Cataloger. She frequently expressed intense frustration and disappointment at no longer meeting her expectations of precision and thoroughness in her daily work tasks.  Following a lengthy battery of cognitive tests by a neuropsychologist, Nancy’s diagnosis of Mild Cognitive Impairment (MCI) shook us to the core. Decades earlier Nancy’s mother had passed away from Alzheimer’s at age 85. Now we faced my wife’s early signs of significant cognitive decline where MCI is a precursor of Alzheimer’s – a disease with no known cure nor new marketed drugs in over a decade to slow or reverse the effects on her abilities.  Realizing the immense challenges that we faced, I too determined that full retirement would provide the opportunity to address the needs of now being Nancy’s full-time Care Partner. Attending numerous local seminars, weekly cognitive training sessions, neurologist visits, Brain Fitness Club and participating in drug trial screenings and studies became our main focus.  Through the results of several drug trials that included extensive blood tests, MRIs and spinal fluid taps, Nancy’s Early Onset Alzheimer’s diagnosis was confirmed in early 2015.  We continued with participating in hopeful drug trials for which she qualified only to become disappointed by pharmaceuticals either ceasing the trial or her more rapid cognitive decline suspected by side effects or placebo (never confirmed due to […]

Fern Pessin – Caring for Parents with Multiple Chronic & Acute Conditions

In 2016 Fern Pessin left her business and life in New York/Connecticut to move to Florida. Her mission was to support her parent’s well-being in their journey of aging with grace, surrounded by love while protecting and maximizing their resources. Her Dad (Arthur) has Alzheimer’s. He falls, forgets, is light headed and confused but is still living in independent living – with his wife of 62 years. He has a pacemaker and is on a blood thinner which makes falls and bruises more dangerous. He’s depressed. And he has skin cancers removed every six months. Mom (Hedda) is a cancer survivor (Osteo Sacrcoma of her sacrum) and, after 15 years, the cancer is starting to grow again. She has neuropathy in her foot and can tend to drag her foot and trip when she’s tired. She has been diagnosed with pseudo dementia. Stress of worrying about her husband is causing the dementia, doctors say. She is a clutterer/hoarder and has narcissistic personality disorder. Overwhelmed at first, Fern realized there was scattered information out there to help guide her in this new role of caring and advocating for her parents.  So, she did a ton of research, got certified as a Home Health Aide, attended conferences and classes, interviewed experts, attended weekly support groups and more — to ensure an understanding of what to look for and do for her parents both physically and emotionally. She sought out a team of experts to help her and her siblings navigate through the […]

Donna Thomson – Caring for an Adult Son with Cerebral Palsy & Other Life-Threatening Conditions

In 1988, Donna Thomson’s life was forever changed by the birth of her first child Nicholas, who has cerebral palsy and a myriad of other life-threatening conditions including epilepsy, severe sleep apnea and chronic pain. A former actor, director, and teacher, Donna became her son’s primary caregiver and embarked on a second career as a disability activist, author and caregiver coach. Donna is the co-author (with Dr. Zachary White) of The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver (Rowman & Littlefield, 2019) and author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (McArthur and Co., 2010 and The House of Anansi Press, 2014). She blogs regularly at her website, The Caregivers’ Living Room (www.donnathomson.com). Donna has always been full of curiosity and optimism in her determined exploration of better ways to support caring families. Her research has led her to write about resources such the Asset Based Community Development movement, the Atlas of Caregiving tools for mapping care eco-systems and the multitude of online care coordination tools such as Lotsa Helping Hands and Caring Bridge that enable caregivers to leverage the practical help of family members and friends. As a teenager, Donna helped care for her father who suffered three debilitating strokes, then later for her mother who had dementia and died in 2018 at the grand old age of 96. Caregiving has been and continues to be her life’s purpose. When she’s not writing and reading about caregiving, Donna […]

Kimber Westmore – Caring for Her Aging Parents; a Dad battling Alzheimer’s, a Mom with Heart Failure and more

In 2017, Kimber Westmore’s parents unexpectedly shifted from independent lifestyles to fully dependent ones. Despite her long-term career in emergency response training, she felt ill-prepared for this family crisis. Nevertheless, her determination to protect her parents while continuing her full-time career in life safety proved lifesaving not only for her own family but for more people than she likely will ever know. After losing her husband to a sudden heart attack five years earlier, Kimber focused on enjoying her family, friends and career. Her parents loved to travel and were often gone for six weeks or more at a time. Appreciating life’s unpredictability kindled a travel spirit in Kimber, as well. Then, tragedy struck Her father, Don, collapsed from a heart problem and was rushed to the hospital. After a long stay, he was discharged but bedridden and suffering from Alzheimer’s Disease. He no longer recognized his wife or his own home. He went through many stages of dementia but finally surrendered to a kind and childlike demeaner. Her mother, Joy, already diagnosed with heart failure earlier that year, fell back and broke her neck, severing two vertebrae in the process. Then, a call came to Kimber during a Christmas party that same night, informing her about yet another family hit. Her brother suffered a massive heart attack and died. Recognizing that life would be the same, Kimber and her family  pulled together and gathered information, grieved, made decisions, educated themselves and comforted each other. As the only daughter, most […]

Theresa Jenkins – Caring for Husband with Dementia

Theresa is a caregiver for her husband Scott, who was diagnosed with Dementia in 2009 at the early age of fifty-four. Theresa recently left her twenty-seven year career as an Executive Administrative Assistant so that she could be Scott’s caregiver full time. Theresa is a contributing author in the book Before the Diagnosis: Stories of Life and Love before Dementia, an anthology of stories by 36 authors, each about a relative they have known and loved before that person was diagnosed with Alzheimer’s disease or another type of dementia. Over 90% of the profits from the sales of the book are donated to four nonprofit organizations that assist people with any type of dementia, and their families. Theresa was selected as one of the 2018 Alzheimer’s Orange County Visionary Women Family Caregiver Award Honorees. Her daughter Emily was a Teen 2019 Family Caregiver Award Honoree. Over the ten years of Scott’s Dementia, the condition is progressing and Theresa and her family have to continue to learn about the disease and how to manage each new behavior and symptom. Theresa relies heavily on all the classes, webinars, literature, and support from fellow Alzheimer’s/Dementia caregivers. Theresa and her daughter are part of the Alzheimer’s Orange County support groups. Her daughter Emily facilitates a Teen Alzheimer’s support group and blog page through Alzheimer’s Orange County. Theresa’s care giving responsibilities have not been limited to just her husband Scott’s Dementia diagnosis. Prior to that, Scott had several chronic medical conditions that Theresa would help […]

Scott Lavitt – Caring for His Dad with End-Stage Alzheimer’s While Supporting Mom and Other Caregivers

In 2018, Scott Lavitt moved in with his parents to help his mom take care of his dad, who has Alzheimer’s. At that time, his dad was in the second of the three stages of the disease. During the course of that year, the disease rapidly progressed into the third stage. Immediately after moving in with his parents, Scott began attending a weekly caregiver’s support group at his local Alzheimer’s Association. He began learning about caregiving for his dad from the skilled professionals at the Alzheimer’s Association, from the many diverse professionals working locally within the vast Alzheimer’s community in the Coachella Valley, from his fellow caregivers, and, of course, from his own firsthand experience. Wanting to share this vast and valuable information he was learning, he started a vlog on Facebook. Vlogging came naturally to him, having owned and operated an advertising agency for 30 years. In 2018 alone, he made 117 short edited movies on all things Alzheimer’s, ranging in topics from a-day-in-the-life-of-a-caregiver to interviews with the director of a top memory-care facility and the Alzheimer’s Chief Science Officer, Maria C. Carrillo. In addition to his vlog, he was the marketing chair for the Coachella Valley Walk to End Alzheimer’s, further involving himself with the Alzheimer’s community and cause. As the year wore on, he became more and more attached to the other caregivers in his support group, noting that the group lost four loved ones to Alzheimer’s and one caregiver. She had a stress-related stroke and died […]

Darra Wray – Caring for a Father-in-Law with Heart Failure

Darra’s father in-law, Jon Lee Wray, suffered a massive heart attack in September of 2000. The doctors explained the devastating options… either undergo a risky octuple bypass surgery with experimental laser tunneling in hopes of extending his life by 5-10 years or begin putting his affairs in order with an expectation that he would likely die from heart failure in the next 3-6 months.  He was only 61 years old, so they chose surgery, with the hope of getting at least a few more years together.  Miraculously, Jon Lee survived the surgery and returned to his normal daily activities with Jacque, his wife of 30 years. Recognizing that both Jon Lee and Jacque were going to need more support in the coming years, her husband, Jonathan, and Darra moved the family to Boise, Idaho to be more available to assist them.  And, facing a declared life expectancy for Jon Lee, they pro-actively took the steps necessary to ensure that financial and household matters were attended to by other family members and advance directives were completed for both parents.  Jacque, a legal secretary by trade, led this effort and seamlessly assumed full responsibility for household management. 5 years passed and they were grateful that Jon Lee was defying the medical odds. 10 years passed, and they knew that Jon Lee was living on borrowed time. Amazingly, more than 16 years after Jon Lee’s first heart attack, Jon Lee and Jacque attended grandson’s Mason’s high school graduation ceremony together. But, 6 months after the high […]

Betsy Smith – Caring for Husband with Bone Marrow Cancer while Advocating for Patient Safety

According to John Hopkins more than 250,000 deaths a year are the result of medical errors. Betsy and her husband, Jack, met in 1997. She was forty nine years old. He was fifty nine years old. They married and had twenty two wonderful years together. Jack was diagnosed with MDS – bone marrow cancer in 2014 and died in 2018. All of her life, Betsy has been an advocate. She was an advocate for students for almost twenty years in her role as Provost and Vice President at Pensacola State College. She was an advocate for women and served as a Mentor and Coach to women in the workforce. When Jack was diagnosed with MDS, Betsy learned the importance of being an advocate for patients in the healthcare system. She also became painfully aware that caregivers and advocates lack education, confidence and boldness. She founded ​Be Bold Advocates​ to teach family and friends of patients the importance of patient advocacy and how to be an effective patient advocate. She also works with business and industry to teach them how to keep their employees who are also caregivers/advocates. FYI – The average caregiver is a 49 year old woman employed full time. 60% of these women leave the workforce to become a full time caregiver. (National Alliance for Caregiving, 2015) Betsy shares her real life situations in which her advocacy literally saved Jack’s life. For example, one time Jack’s name label was placed on someone else’s blood vial! That resulted in […]

Carmel Taibi-Lehn – Caring for a Spouse with Spinal Cord Injury and Chronic Pain

Carmel’s journey as a caregiver began when a car accident totaled the vehicle and broke her husband Dale’s neck in three places. What was initially perceived as an isolated event extended to 20 of her 26-year marriage, during which time Carmel became the primary caregiver for Dale and the sole provider for her family, all while shouldering the expectations of a corporate leadership career. Post car accident, Dale was stabilized in a halo brace for 12 weeks and Carmel was challenged with tightening bolts that penetrated her husband’s skull. This was just the beginning of hours, days, and years in surgery waiting rooms, recovery rooms, hospital rooms, treatment and rehab facilities, step down units, and long-term care facilities. Two years later, an unrelated tumor was found growing inside of Dale’s spinal cord. The successful 8-hour surgery to remove it led to months of rehab, where despite all odds, Dale progressed from a wheelchair, to a walker, to learning how to walk again. But the tumor grew back. This time, Dale was left a paraplegic.  5’3” Carmel cared for her 6’3” 230 pound. husband.  Bathing him, helping him to transfer to the bed, toilet etc., and lifting his wheelchair in and out of the car became a part of Carmel’s daily routine as she tried to maintain continuity and support in their young son’s life. In 2016, Dale was diagnosed with metastatic colon cancer, which resulted in a year of treatment, long-term care, and finally, hospice care. The effects of chronic […]