By Debra Hallisey, New Jersey, USA
During my nine years as a caregiver, I realized we don’t think about our personal relationships as contracts, when, in fact, they are. Every contract is based on unspoken expectations and includes what we are willing or not willing to do for each other, how we support each other, and the social interests and activities that bind our relationships.
A dementia diagnosis blows up the original contract we had with our care partner. As the disease progresses, the ability to re-negotiate pieces of the contract is lost. I wrote my book, “A Relationship Contract for Dementia Caregivers” to help people adopt healthy ways to amend original relationship contracts and navigate the profound changes caregiving makes on their lives.
When we don’t renegotiate, people can act in ways that undermine what is needed. For example, the unspoken expectation that holidays can continue as usual can cause rifts in relationships. The person who agitates our care partner by always correcting them, can instead help by taking care of finances or dealing with insurance.
Paramount to this process is creating a relationship contract or a “care plan” with yourself based on honesty, self-awareness and admitting to all the emotions of caregiving. Dementia expert Amy Matthews says, “You are the most important person in the caregiving scenario, not the person living with dementia.” When you start to live as this most important person, you give yourself permission to set boundaries, as well as to ask for and to say “Yes” to help.
In order to give caregivers opportunities to put the book’s tips, tricks and advice into action, each chapter of my book ends with a series of questions, a worksheet or guidance on how to create a care plan or identify the traits required in a professional caregiver. It also includes practical tips for learning ways to address behaviors that drive us crazy, such as repeated questions.
Caregiving is a deeply personal journey. I am honored when people share their stories with me and humbled when they ask for advice and help. My work has shown me that caring for someone with dementia is like no other caregiving scenario. My hope is that my book, through actionable ideas and strategies, will help readers learn to let go of the way we expected our life to unfold, while opening opportunities to live in the moment and find joy within our new reality.
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About Debra Hallisey
Debra Hallisey is an author, speaker, blogger and consultant to family caregivers. She writes on caregiving issues for adult children of aging parents at her website AdvocateforMomandDad.com. Deb, a past caregiver, lost her job due to caregiving and, as a result, founded Advocate for Mom and Dad. Her book, A Relationship Contract for Dementia Caregivers, provides practical knowledge and tips and tricks on how to navigate the changes to relationships a dementia diagnosis brings. The book helps readers to continuously adapt expectations and daily practices in order to meet the needs of a person living with a progressive brain disease. Even more importantly, the book gives strategies, tips, and permission to family caregivers on how to meet their own needs as the disease progresses.
Debra is a regional speaker for ARTIS Senior Living and has been a guest speaker and trainer for a variety of organizations including The Care Years Academy, Northwell Hospital System, The Parkinson Foundation of Oklahoma, United Way and many memory care units across New Jersey and Pennsylvania.
Deb is a Certified Caregiving Consultant™, Certified Caregiving Educator, Certified Caregiving Facilitator and Certified Dementia Practitioner®. She holds an MA in Leadership and Supervision.
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