Dear Gloria’s Way Community,
I am honored to have been asked to contribute and curate my own column for the Gloria’s Way caregiver blog. You and I are on a journey together and separately at the same time. Through my blog posts, I hope to offer you some help, encouragement, commiseration, and connection. And I look forward to reading your comments and questions along the way. Let me start by telling you some of my story.
Four years ago, after nearly six months of wondering what the hell was going on, after the MRI, two spinal taps, genetic testing, and five hours of neuro-psych tests ruled out everything else, I learned a new term and joined a rarified community: dementia care partner. My spouse, Tracey, was diagnosed with Frontotemporal Degeneration. FTD is simultaneously one of the rarest dementias – only about 60,000 people in the United States have it – and also one of the most common early-onset dementias. Tracey was 62 years old.
We suddenly were plunged into a whole new terrifying world, and it took several months to sort it out. Tracey, an episcopal priest, stepped down from her ministry as we slogged through legal issues (POA’s, DNR’s, revised wills, etc.), filled out pension and social security disability applications, and learned everything we could about the science of this disease. It took many more months to just plain get our heads around it all.
I don’t mean we figured it all out and everything is fine now; I mean that we finally accepted the diagnosis and moved forward into our new world doing the best we can. We began to live with dementia honestly, straightforwardly, and openly. Four years later, we don’t have the answers – this is truly a moving target – as most of you know.
Through the Mindful Caregiver blog posts, I hope to offer some practical and emotional insights, perhaps occasionally to vent my own frustrations, and to share some of yours. I also plan to enlist some of my friends, who are farther along down this road, to tell you about their experiences and to offer their own advice. For those of you just starting out on this journey, I hope that my reflections will provide some direction, help, and encouragement.
Whether your loved one was diagnosed yesterday or twenty years ago, please write to me and offer your wisdom, your help, your insights, your questions and suggestions for future posts. I don’t have all the answers – Tracey and I are still in the early stages of this disease – but I do believe we will all do better if we go forward together.