Lisa shares a narrative she wrote about a caregiver named Sarah who found herself in the position of being the primary caregiver for her mother, who was living with dementia. The story focuses on Sarah’s struggles and the challenges she faced taking care of her mom as she progressed through the disease to illustrate what most caregivers experience and what they can do to best cope with taking on the caregiver's responsibilities.  Some of the highlights of Sarah’s story include:

•    How she coped with managing her mother’s care and witnessing the gradual decline of her mom’s once vibrant spirit;
•   How she recognized the signs of caregiver burnout in herself;
•   How the emotional strain was so difficult for Sarah to bear, and what she did to turn that around;
•   The lessons she learned from her caregiving experience and how she learned to persevere and that is was possible, as a caregiver, to find real moments of joy with her mom, inspite of being fraught with all the unexpected challenges.  

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About the Host:

Author Lisa Skinner is a behavioral specialist with expertise in Alzheimer’s disease and related dementia. In her 30+year career working with family members and caregivers, Lisa has taught them how to successfully navigate the many challenges that accompany this heartbreaking disease. Lisa is both a Certified Dementia Practitioner and is also a certified dementia care trainer through the Alzheimer’s Association. She also holds a degree in Human Behavior.

Her latest book, “Truth, Lies & Alzheimer’s – Its Secret Faces” continues Lisa’s quest of working with dementia-related illnesses and teaching families and caregivers how to better understand the daunting challenges of brain disease. Her #1 Best-seller book “Not All Who Wander Need Be Lost,” was written at their urging. As someone who has had eight family members diagnosed with dementia, Lisa Skinner has found her calling in helping others through the struggle so they can have a better-quality relationship with their loved ones through education and through her workshops on counter-intuitive solutions and tools to help people effectively manage the symptoms of brain disease. Lisa Skinner has appeared on many national and regional media broadcasts. Lisa helps explain behaviors caused by dementia, encourages those who feel burdened, and gives practical advice for how to respond.

So many people today are heavily impacted by Alzheimer's disease and related dementia. The Alzheimer's Association and the World Health Organization have projected that the number of people who will develop Alzheimer's disease by the year 2050 worldwide will triple if a treatment or cure is not found. Society is not prepared to care for the projected increase of people who will develop this devastating disease. In her 30 years of working with family members and caregivers who suffer from dementia, Lisa has recognized how little people really understand the complexities of what living with this disease is really like. For Lisa, it starts with knowledge, education, and training.

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Hello, everybody. Welcome back to a another brand new episode of the Truth Lies and Alzheimer's show. I'm Lisa Skinner, your host, and I did something kind of different. For today's episode, I wrote a narrative, all about caregiver burnout. For those of you out there who care for somebody living with Alzheimer's disease and related dementia, and I'm sure that a lot of you are, and that's why you are tuning in. So I named my character Sarah. But I also realized this could be any of you out there. So when I'm finished with my narrative story, think about if this relates to how you're feeling about your role as a caregiver, or as a family member, watching somebody decline through this disease.

In the quiet hours before dawn, Sarah could often be found sitting in the dimly lit kitchen of her small suburban home, sipping her cold coffee in silence. Her gaze was fixed on the calendar hanging on the wall. It's pages filled with scribbled notes, reminders, and doctor's appointments. For the past five years, Sarah has been the primary caregiver for her mom, who was living with dementia. What started as occasional forgetfulness has escalated into a challenging daily routine of managing her mother's care and witnessing the gradual decline of her once vibrant spirit. The early days of caregiving were filled with a sense of duty and commitment. Sarah, a devoted daughter had willingly taken on the responsibility of caring for her mom, wanting to ensure that she would receive the best possible care in familiar surroundings. However, as the weeks turned into months, and the months turned into years, the toll of round the clock caregiving began to take its toll on Sarah's own well being. The signs of caregiver burnout were subtle at first, Sarah found herself becoming increasingly isolated from her friends, no longer participating in former activities. As the demands of caregiving left her with little time or energy for anything else. Sleep became a luxury, as she was often awakened in the middle of the night by her mom. In her confusion and agitation, the constant worry and stress began to manifest itself physically, as Sarah struggled with headaches, muscle tension, and a general feeling of exhaustion that seemed to permeate every aspect of her life. The emotional strain was perhaps the most difficult to bear, Sarah's Mom, what's the pillar of strength in the family had become a shell of her former self, her moments of clarity growing fewer and farther between the loss of her mother's personality, her memories and the abilities was a daily source of grief for Sarah, who often felt powerless in the face of the relentless progression of this disease. In the midst of her struggle, Sarah began to seek out support and resources. She did connect with a local caregiver support group, where she found solace in sharing her experience with others who understood the unique challenges of caring for a loved one with dementia. through counseling and education. She learned to recognize the signs of burnout and the importance of self care in maintaining her own well being. Then with the help of respite care services, Sarah was able to take short breaks from caregiving, allowing her to recharge and tend to her own personal needs. She also sought assistance from health care professionals, who provided her with Guidance on Managing her mother symptoms and accessing community resources. Slowly, Sarah began to find a sense of balance in her role as a caregiver Learning to navigate the complexities of dementia with greater resilience and compassion. The journey was far from easy, as I'm sure we all know. And the challenges of caregiving for a loved one with dementia remained a constant presence in Sarah's life. However, through perseverance, self care, and a network of support, she discovered that it was possible to find moments of joy with her mom. And connections admits the difficulties. She learned to cherish the fleeting moments of clarity and lucidity that her mother's still experienced. Again, finding solace in the simple pleasures of a shared smile, or a brief, heartwarming conversation. As Sarah's journey continued. She also became an advocate for raising awareness about caregiver burnout with dementia. She shared her story with others, aiming to dispel the misconceptions surrounding dementia and the toll it takes on both the patients and their caregivers and their family members. By speaking openly about her experiences, she hoped to encourage others in similar situations to seek support, prioritize self care, and not feel ashamed of the feelings of overwhelm and exhaustion that often accompany the role of a caregiver especially when it has to do with Alzheimer's disease and related dementia. Through her advocacy efforts, Sarah connected with a network of caregivers and with health care professionals. And then over time, her mom's condition continued to decline. And eventually, the day came when Sarah had to make the difficult decision to transition her mother to a memory care facility. There was a choice filled with conflicting emotions, but Sarah knew that it was in the best interest of her mother's safety, and for providing her with the highest quality of life. Despite her heartache of the transition, Sarah found comfort in knowing that her mother was receiving specialized care from professionals who had been trained to support individuals living with Alzheimer's disease and related dementia. As she visited her mother in the memory care facility, Sarah was able to spend quality time with her mom now free from the relentless demands of full time caregiving. She absolutely cherished those moments, focusing on being present, and nurturing their bond in a brand new way. Though the challenges of dementia persisted, Sarah found a renewed sense of peace and relief, knowing that her mom was in a safe and supportive environment. Reflecting back on her journey, Sarah recognized that caregiver burnout, especially in the context of dementia, was a complex and often over looked issue. She remained committed to advocating for greater awareness, support and resources for caregivers, knowing that their well being was essential in providing the best possible care for individuals living with dementia. So Sarah's story was written to serve as a reminder that while the journey of caregiving for a loved one with dementia may be fraught with challenges, it is also a journey filled with moments of love, connection, and resilience. Through her experiences, she continues to inspire others to seek help to prioritize self care and find strength in community as they navigate the profound impact of dementia on both the people living with it and their caregivers and family members. As Sara continued her advocacy work she also focused on De-stigmatizing dementia and promoting greater understanding and empathy for individuals living with this condition. Through her involvement in these initiatives, Sarah found a sense of purpose and empowerment, knowing that her advocacy work was contributing to a larger movement aimed at improving the lives of individuals affected by dementia and their caregivers and family members. In her own life, Sarah continued to prioritize self care, and sought out new interests and hobbies that brought her joy and relaxation. Whether it was attending yoga classes, participating in a book club, or simply taking leisurely walks in the park, she found that nurturing her own well being was essential in sustaining her resilience as a caregiver and as an advocate.

So I don't know how many of you are aware, Sarah, is today with your personal dementia journey. But I am hoping that this story will be an inspiration to those of you who are not quite there yet. That there is a light at the end of what probably seems to you to be a very, very dark tunnel. But first and foremost, remember, just like Sarah, you've got to take care of you. So that is the episode for today on the truth, lies and Alzheimer's show. Again, I'm Lisa Skinner, your host and I hope this gives you a lot of really important things to consider if you are in the same situation that Sarah was in with her mom. So I hope everybody has a great week. And we will certainly look forward to having you back again next week for another new episode of the Truth Lies and Alzheimer's show. Take care. Bye bye