Just Diagnosed...Now What?!

Have you been diagnosed with Mild Cognitive Impairment (MCI) or an early stage of dementia? The diagnosis can come in many forms…Alzheimer’s Disease, Vascular Dementia, Lewy Body, Frontotemporal Dementia (FTD), or Mixed Dementia. But, regardless of which diagnosis you’ve received, it probably felt like a shock-even if there may have been clues in the past. While I have never faced this diagnosis myself and while everyone’s experience is unique, I’d like to humbly offer some information that can help you move forward with living, despite the fears and emotions that come with the diagnosis.

Sadly, many people have only had very brief and less than informative conversations at the point of diagnosis, followed by the doctor telling them to come back in six months or a year for follow up. Understandably, this can leave you feeling confused and alone. However, just because your doctor may not have offered the support you’d like, it doesn’t mean that you need to face this alone!

While doctors mean well, they often aren't taught how to maneuver such a challenging and emotional conversation, especially when they don’t have tools available to heal these conditions. Since they’re uncomfortable and unsure how to tell you, they often avoid sharing some of the important details in an attempt to make it more comfortable for both of you. Unfortunately, while it might make that initial conversation easier, it makes the time after diagnosis more difficult for you and your family as you wait and worry about the unknowns.

Or, even if your doctor did take time to explain what to expect, maybe new questions have popped into your mind as you’ve absorbed what you were told. What I want you to know is that, whether or not your doctor offered you information and resources, dementia education is immediately available and will help you figure out some positive next steps. There are many online resources, books, and support groups. Or, if you’d like personal support and customized answers to the questions on your mind, you can meet with a Dementia Consultant like me. Visit https://www.dementiasupportcommunity.com/living-with to see how I’m ready to help… whenever you’re ready to talk and learn.

A dementia diagnosis might also leave you feeling like you’ve lost control of your own life. While there is no question that it’s difficult news, which you will of course grieve, it is not the end of your life or the end of your right to control your own life. Advance planning and honest communication with your loved ones will give you back the control that you feared was slipping away.

Sometimes though, these conversations can be so easy to delay because they are not easy to begin. However, timing is everything. The sooner you plan, the more you can design a life that not only adapts to your changing needs, but also continues to bring you joy. I’m happy to help you find the best planning tools to meet your specific wishes, while also supporting both you and your family as we discuss your hopes and preferences. Email me at DementiaCommunityCircle@gmail.com or call (541) 668-7560 to schedule an advance care planning meeting.

Care planning and family discussions aren’t the only way to make sure your voice is still heard. You have important wisdom and perspective to share with others. And, there are others in the community who want to stay connected and share with you. Stay tuned to the Dementia Support Community’s Community Events page for opportunities to connect with others. I offer general support groups where you can both give and receive support with other people on similar journeys. I will also offer a sharing group occasionally as part of the To Whom I May Concern® program, which helps you tell your story to those around you while being supported by people who care.

Please remember that, while this is certainly a difficult time in your life, it is not the end. With appropriate adaptation and support, you can continue enjoying life with family and friends...often for many more years. It can be a challenge to know where to start when your life takes this sudden turn, but I’m here to help get you started in the right direction for you and your family.