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Not long ago, I was recounting the latest “adventure with Hubby” to my dear friend Ruchie at our weekly 3 P.M. chat in her front garden. When living with a spouse who has any form of Dementia, the need for intellectual human conversation is excruciating.
Hubby sometimes complains to me that we never discuss anything anymore. It is true. We used to share everything. Now every subject I bring up is met with confusion and stress and ultimately - discord. Thus, I talk very little. For a woman who has much to say, this is like a sentence in solitary confinement. There is certainly no real communication. My brain has little opportunity to unload its angst. This is relevant, but I digress.
While having our weekly outdoor rendezvous, and while unloading the latest “Hubby-happening,” Ruchie exclaimed “There is a book in all of this!” Having written well over a hundred articles for the Jerusalem Post and my blog on the Times of Israel, my love of writing has been the one creative outlet which I did not completely abandon as Hubby’s condition required more and more of my attention. Granted, I cannot write when he is awake... nor can I think straight when he emotes every thought that enters his brain - and expects me to respond to each sentence. But in the rare quiet moments, before he awakens or when he is napping... I love to sit and see where my thoughts and memories will take me.
When I returned home from our weekly visit out-of-doors, I vowed to consider the idea of writing a book about all the experiences and emotions of caring for an aging spouse with Dementia. The purchase of a lovely little pink leather journal has been dedicated to writing down the experiences which float in and out of my brain, so they do not escape me. A list of ideas appeared - Topics for the book I hoped would be titled “The Dementia Diary.” In two days, I had written 110 topics in the little book. Indeed, Ruchie was right… there IS a book waiting to be written here!
In my parent’s generation, the word “Dementia” was not used frequently. The condition was referred to as “senility.” I remember the term “hardening of the arteries” being bantered about. I doubt that the medical world knew a great deal about the causes and varieties then. It was rather presumed that as one would get older, he/she would take on signs of senility. I doubt that the average person knew that there were actual diseases that attacked the brain such as Parkinson’s, or Alzheimer’s disease or vascular dementia, or frontotemporal dementia or dementia with Lewy bodies. Each patient who has signs of cognitive impairment may have them for different reasons. Their speed of decline will vary and in some respects their conditions may be very different. But there is a thread which connects them all, and that is the immense demands that will be made on their spouse or caregiver to help them through their years to come.
A few months ago, I joined a Zoom support group of lovely people who care for their spouses with varying forms of Dementia... both men and women. It has become clear from our discussions that others (both friends and family members) cannot begin to know what we experience daily. In truth, we don’t want to impose our reality on others. It is difficult enough for us to endure. Still, we need to be heard and we need others who care, to understand. Our adult children have no clue what we deal with from waking to sleep-time, and yet they often think they know best. If we cannot share with them - how can they understand? Thus, the idea of this book, which is based on my experiences with Hubby and mentoring others as I was mentored... have flowed to my fingertips. It is my hope that family, friends and complete strangers will pick up The Dementia Diary and not be afraid to enter the complex world of confusion, heartbreak, solitude and sometimes amazing humor that is inhabited by Dementia sufferers and their spouses. The humor that I refer to is subtle... not the slapstick humor that comedy television resorts to when they represent an individual with cognitive impairment. It really is not a joke at all. There is very little funny about having your mental capacities decline. Still, discovering the humorous side of an experience does make more bearable.
If The Dementia Diary makes it possible for you and your family to smile once in a while, and if it opens up discussions heretofore suppressed as untouchable... if it helps others to appreciate what a hero your family member (or friend) is when taking care of a loved one with Dementia, then it has been well worth the effort.
For those who subscribe to TheDementiaDiary.com, one chapter will arrive in your email each week. I will send them in the order that they unfolded. As of today, there are over seventy fairly short chapters... with insights learned on many levels along this journey. No doubt, there will be even more chapters to come. You are invited to write your thoughts on this site and I look forward to responding personally.
Barbara’s love of color, texture and design have impacted much of her career. For twenty-one years she and “Hubby” owned three retail stores in L.A./Beverly Hills, Newport Beach and Tarzana, California which sold European designer fabrics. Her customers included television and movie designers, fashion students and lovers of fine textiles. Probably the only fabric store with a mirrored bar offering wine, coffee and treats, it also held champagne fashion shows and monthly fashion seminars for its clients. Her specialty lectures were entitled “Copy the Couture in the same fabrics…and better.” Among her clients were Nolan Miller (costume designer for Dynasty, Linda Evans, Joan Collins, and Elizabeth Taylor ), Bill Tice (costume designer for Star Trek), Bob Mackie (designer for Cher and the entire world of glamour) and Judy Evans-Steele (costume designer for the series Beauty and the Beast, Golden Girls and SOAP.) Barbara was invited to be a member of the international “Fashion Group.”
After retirement from the world of retail, Barbara became fascinated with journalism, and became a talk show host doing in-depth interviews which aired in Jerusalem and London. She later began publishing thought-provoking articles on issues of the day.
Her love of all things beautiful brought her to designing one-of-a-kind jewelry enjoyed by clients around the world. Her fascination with the unusual stones found in their natural state, make her designs unique and collector’s items.
Barbara has been an international traveler who has met with world leaders such as French President Mitterand, Pope John Paul II, various US congressmen and Presidents. She has participated in missions to China, the former Soviet Union and Ethiopia among many other nations. As a result, Barbara has had much to write about and share throughout the years.
Barbara graduated from the University of Cincinnati with a major in “Communications” and minors in Theater and English.
She and “Hubby” have one son and live in Jerusalem, Israel.
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