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  • Writer's pictureBarbara Huelat

Heartwarming Personal Stories

Receiving the Changemaker Award 2023 has been an incredible honor, and I am deeply grateful to the Center for Health Design for recognizing my work in healthcare design, research, advocacy, and collaboration within the healthcare community. The past few days have been overwhelming, filled with award celebrations, interviews with my brilliant co-author (my daughter), and the first book signing of "Taming the Chaos of Dementia." However, what truly touched my heart were the personal stories that many of you shared.


Stories of a young man whose dear mother, recovering from surgery, no longer recognized her only son. A friend who was slowly losing her friend as she withdrew from social life due to caregiving responsibilities for her spouse. Another person, afraid to discuss their spouse's decline from dementia, for fear of how their community might react. The heartbreak and emotional weight of dementia caregiving were evident in the stories you shared during the book signing.


I was deeply moved by the sheer number of caregivers who are on this journey, grappling with the heavy burden of caring for loved ones affected by dementia – mothers, fathers, brothers, sisters, friends, and neighbors. I, too, have walked this path and faced the uncertainty of not knowing what to do next. Like all of you, I searched for a glimmer of hope, a tidbit of advice that could make life just a little easier. This pursuit led me to write my book, in the hopes of passing on the lessons I've learned about caregiving and making your journey more manageable.


The Crisis of Dementia Caregiving:

We are well aware that the state of dementia caregiving is in crisis, and it will persist in the coming years as the aging population continues to grow, and the number of dementia cases rises. Shockingly, over 62% of all caregiving is carried out by volunteer family members, and this model is unsustainable as the number of cases increases. Additionally, most family members lack formal training in caregiving skills, and the emotional connection we share with our loved ones with dementia makes the caregiving journey even more challenging.


A Message of Hope:

While my book does not offer a cure for dementia, and it cannot erase the pain that comes with it, it does offer hope and practical interventions that can help maintain connections with your loved one. It can bring a touch of joy to their lives and, perhaps surprisingly, even to your own. Dementia caregiving is a challenging journey, and my book aims to provide guidance and support to make it just a little bit easier. Receiving the Changemaker Award 2023 has been an incredible honor, and I am deeply grateful to the Center for Health Design for recognizing my work in healthcare design, research, advocacy, and collaboration within the healthcare community. The past few days have been overwhelming, filled with award celebrations, interviews with my brilliant co-author (my daughter), and the first book signing of "Taming the Chaos of Dementia." However, what truly touched my heart were the personal stories that many of you shared.


Stories of a young man whose dear mother, recovering from surgery, no longer recognized her only son. A friend who was slowly losing her friend as she withdrew from social life due to caregiving responsibilities for her spouse. Another person, afraid to discuss their spouse's decline from dementia, for fear of how their community might react. The heartbreak and emotional weight of dementia caregiving were evident in the stories you shared during the book signing.


I was deeply moved by the sheer number of caregivers who are on this journey, grappling with the heavy burden of caring for loved ones affected by dementia – mothers, fathers, brothers, sisters, friends, and neighbors. I, too, have walked this path and faced the uncertainty of not knowing what to do next. Like all of you, I searched for a glimmer of hope, a tidbit of advice that could make life just a little easier. This pursuit led me to write my book, in the hopes of passing on the lessons I've learned about caregiving and making your journey more manageable.


The Crisis of Dementia Caregiving:

We are well aware that the state of dementia caregiving is in crisis, and it will persist in the coming years as the aging population continues to grow, and the number of dementia cases rises. Shockingly, over 62% of all caregiving is carried out by volunteer family members, and this model is unsustainable as the number of cases increases. Additionally, most family members lack formal training in caregiving skills, and the emotional connection we share with our loved ones with dementia makes the caregiving journey even more challenging.


A Message of Hope:

While my book does not offer a cure for dementia, and it cannot erase the pain that comes with it, it does offer hope and practical interventions that can help maintain connections with your loved one. It can bring a touch of joy to their lives and, perhaps surprisingly, even to your own. Dementia caregiving is a challenging journey, and my book aims to provide guidance and support to make it just a little bit easier. The book is now available

https://www.amazon.com/Taming-Chaos-Dementia-Caregivers-Interventions/dp/1538178982/ref=sr_1_1?crid=1I183JEJDMSE8&keywords=taming+the+chaos+of+dementia&qid=1699736249&sprefix=Taming+the+chao%2Caps%2C92&sr=8-1


Conclusion:

As you continue caring for your loved ones with dementia, remember to care for yourself as well. It is a challenging journey filled with emotional ups and downs, but your love and dedication can make a significant difference in the lives of those you care for. Keep holding onto that thread of hope, and let the stories and advice within my book serve as a source of strength and inspiration on your journey of love and hope. Together, we can navigate the chaotic world of dementia caregiving and find moments of connection and joy along the way.


As you continue caring for your loved ones with dementia, remember to care for yourself as well. It is a challenging journey filled with emotional ups and downs, but your love and dedication can make a significant difference in the lives of those you care for. Keep holding onto that thread of hope, and let the stories and advice within my book serve as a source of strength and inspiration on your journey of love and hope. Together, we can navigate the chaotic world of dementia caregiving and find moments of connection and joy along the way. Thank you for sharing and keep the stories coming.


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