A Caregiver’s Journey (Self-Care for Caregivers of Loved Ones with Dementia and Alzheimer's) describes the challenges I faced and the hard lessons I learned as a caregiver for my mother, who suffered from multiple forms of dementia, including Alzheimer’s Disease, over the last 15+ years of her life. Told from my perspective as a loving and at times frustrated son trying to see to her comfort and well-being, I hope my book will help other caregivers know what they are likely to face on their journey.
Early signs of my mother's dementia began exhibiting around the time she turned 80. Her bouts of delusional paranoia and bitter rage gradually became more frequent and over the course of the next ten years her personality completely changed. She became someone else entirely, eventually turning on everyone in her life, even those who loved and cared for her the most. During the early, increasingly stressful years she was still able to travel on her own, feed and take care of herself, handle her finances, move back and forth across the country multiple (!!) times, memorize names and places, memorize multiple bus schedules, and engage in social activities before the toxicity of her dementia began to fade and the forgetfulness associated with Alzheimer’s Disease began to make her a significant risk to both herself and others.
Published on April 5, 2021, ACJ is currently available as an ebook or softcover print edition on Amazon. It will soon be available as an audiobook, as well as in bookstores.
The stress of dealing with my mother’s ever spiraling downward condition had a profound effect on my health. Ultimately, I became a better caregiver by getting her into a fully assisted living situation. Although that transition was anything but smooth or easy, in order for me to be there for her, I learned the hard way that I needed to focus on my own health and well-being as much as hers. I hope that ACJ will serve as the roadmap for other caregivers that I wish I had when I started out on my caregiving journey back in 2004.
In the book, I share many of the frustrations and challenges her deteriorating condition caused not only her, but also me as her primary caregiver. It's honest and at times raw but I feel it's important to present many of the hard truths about what it means to be a caregiver for someone suffering from both the toxic, mean-spirited kind of dementia and the absent-minded, forgetful kind that is most often associated with Alzheimer’s Disease. It is not always pretty and I don’t sugar coat everything with 20/20 hindsight. When you are in the midst of dealing with the stress that comes from trying to care for someone suffering from any sort of dementia, whether it is the toxic kind or the forgetful kind or a mixture of both, I found platitudes to be of little practical use. Stress kills. So stress management is of paramount importance. And one way to navigate a stressful situation is knowing what to expect.
I hope that sharing my experience in honest, straight-forward terms will help other caregivers talk about and share their struggles, their challenges, and their stories, both good and bad.
Chapter Titles are:
My Mother’s Timeline
5 Rules for Being an Effective Caregiver
Dementia or Alzheimer’s (practical vs. clinical definitions)
What To Expect As A Caregiver
How To Cope With Being A Caregiver
Care Facilities and Treatment Options
Making The Most Out of The Time That’s Left
I hope you will BUY IT NOW! and then come back to The Caregiving Project to ask questions, get advice, find resources, stay up on caregiving related news, events, workshops, or share your story.
Because talking about the situation that YOU are in and admitting to both yourself and to others that it is NOT EASY, is the best thing you can do for yourself and for the person you care about.
One of the best ways to handle the stress is knowing what to expect next and carving out time to process the things being said to you and the decisions that you have to face. Otherwise, the stress can sneak up on you like it did me and a dead caregiver is worse than denying that BOTH you and your loved one are facing serious challenges.
EJM
July 2021