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Lessons Learned on My Dementia Care Partnership Journey By Tim Wernette
Help others like you find their way. Take the time to share what you’ve learned with others facing the same challenges you faced. I’ve learned so much through my journey and have been able to help others who are not as far along in their journey as I am. In turn, they support me too. Pray for the best and plan for the worst. Of course you want the best for your loved ones and yourself. Miracles do happen and I prayed for and even expected one. But I also needed to focus on more sobering things like financial planning scenarios and what to do when Richard needed a wheelchair. I wasn’t the only one managing the change that nobody wants. There are millions of people just like me, with every imaginable background and story. I hope I can help others, just as so many others helped me and still do. I welcome your reactions, comments and suggestions. ◆ Ava Butler is is a PCOA board member, organizational development consultant, and leadership consultant based in Tucson Arizona. She is the author of Parkinson’s: A Love Story with Dementia for Dessert, and Mission Critical Meetings: 81 Practical Facilitation Techniques. Connect with Ava at ava@avasbutler.com or (520) 404-9470. Learn more at avasbutler.com
faced with a significant decision: do I want to continue my partnership with the person with dementia and, if so, what will my role(s) likely be? In my case, this required me to confront my fantasy of what the latter part of my life and our lives would be like. My initial response was “I didn’t sign up for this when we got married!” Having someone to help navigate this important decision can be helpful. In my case, my Quaker pastor helped me determine that I wanted to honor my commitment to our marriage and to realize that this next phase(s) of my life would be an opportunity for me to grow in ways beneficial to me personally. Making a conscious decision doesn’t make the journey easy but can help to minimize resentment that the decision wasn’t a result of pressure from others or assumptions made by myself unconsciously.
Lesson 1: Test Early, Resist Denial Determining the beginning of my dementia care partnership journey is difficult because determining when my wife, Carolyn’s Alzheimer’s Disease began, is ambiguous. Differentiating between “normal” age-related memory loss and the beginning of dementia memory loss is challenging. This challenge is magnified by the tendency for both the person with dementia and their care partner(s)/family/loved one(s) to be in denial and to minimize the progression of the dementia behaviors. Having a primary health care provider who is both knowledgeable about and comfortable with dementia can be helpful, as well as access to testing facilities which can help determine if, how much, and what kind of dementia is present. Denial is common for everyone involved and may persist, sometimes for a lengthy period. Testing (both blood and brain scan) can help to push through the denial and to access services, both medical and social support. Lesson 2: Choosing Your Response and Role With current medical treatment(s), dementia is a prognosis of gradual deterioration ending in death. As dementia progresses, the burden for the care partner(s) usually increases. Consequently, the care partner is
Lesson 3: Asking for Help or Support is a Sign of Strength and Health
My involvement both professionally in gender studies and personally in the pro-feminist men’s movement helped me to understand that asking for help and support is a sign of emotional strength and health, not weakness. As soon as I made the decision to be a care partner with my wife, I began what I term “a crash course” on care partnership. That “crash course” opened my eyes to a remarkable dementia community of organizations and resources. I realized how fortunate I am to have so many resources available to me. My local agency on aging (Pima Council on Aging) and the local Alzheimer’s Association
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Pima Council on Aging
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