The Dementia Diary is a chronicle of my journey caring for my husband who began having small strokes (T.I.A.s) ten years ago and exhibiting resulting signs of cognitive decline. It has been written over the past two years with the desire to share with others a most private experience and the crucial lessons learned in the process. Friends and family have no idea what goes on behind the closed doors of a family coping with a loved one’s dementia. It is time to open those doors.
The World Health Organization reports that over 50 million people worldwide are experiencing dementia and the number is growing rapidly. If one extrapolates that one individual has a spouse, children and grandchildren who care about their condition, it is reasonable to estimate that over 200 million people are currently affected by their loved one’s demise. It is my goal to open the understanding of this condition, with its overwhelming moments, complexities, anguish – and sometimes great humor. I hope that once this intimate experience has been shared, friends and family will fully understand how critical their support of the caregiver is for their emotional survival.
Our personal journey continues. I have chosen to release the chapters in the order they were written, to fully explain the changes which occur with time both for the patient and for the caregiver.
Two years 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. During “Corona,” and 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 it more bearable.
If this 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.