At Thanksgiving, my sister gave me two books: The 36-Hour Day: a family guide to caring for persons with Alzheimer's Disease, related dementing illnesses, and memory loss in later life... plus Widow to Widow: thoughtful, practical ideas for rebuilding your life.
She gets them from a free shelf at one of the three hospitals she works for as a dietician. The first book I had heard of at the last Caregiver Support group and is touted on the back of the book as the "bible", a comprehensive guide with new information, first written in 1981, then revised ten years later in 1991. She warned me it might be depressing, odd coming from someone who vacillates in her own recreational reading between gruesome true crimes and Christian how-to books. As my mother would say, "her heart is in the right place", which it generally is.
I glanced through both books, deciding to read the Alzheimer's one now since neither my sister nor I are widows. The Table of Contents is seven pages long, so I skipped past the first two chapters on definitions and how to get an evaluation, starting at Chapter 3, Characteristic Problems of Dementia...which was eerily similar to what I've been going through with my husband. Written from a more clinical perspective than the fictional yet devastating novel, Still Alice, it was more like reading a child development book.
Overreacting or Catastrophic Reactions, yes and yes.
Problems the Impaired Person Has in Making Himself Understood and 3 pages later, Problems the Impaired Person Has in Understanding Others, sigh, yes many times.
Loss of Coordination and Loss of Sense of Time, both hit home really hard, as just this week I could not, despite numerous attempts, explain to my husband that when the clock goes past midnight, his watch will show it's the next day. This was after I discovered he had not taken his morning vitamins from the previous day and he was down in the kitchen, noisily making a sandwich at 2am.
Symptoms That Are Better Sometimes and Worse at Other Times, was only one page and I could have written a better description of this phenomenon myself. Instead I called my sister and asked her if she had seen this in patients she evaluates in nursing homes. She said yes and explained in laypersons' terms that as parts of the brain die, other parts try temporarily to take over the functioning. I looked up the book online, finding there is another revised version from 2011, which I'm waiting for on interlibrary loan.
I continued reading the book and it did get depressing, as the authors keep reminding the reader there is no cure; the disease progresses until debilitation or death. For example, halfway through the book there are two short paragraphs describing... "Patients with Alzheimer's disease occasionally develop quick, single jerking movements of their arms, legs, head or body... Myoclonic jerks are not a cause for alarm." The very next paragraph and six pages following, jump to The Death of the Impaired Person, but then in the following chapters 7 through 18, pertinent information regarding behaviors and family dynamics are discussed.
This book is helpful, yet disorganized; perhaps that has been corrected in the 2011 revision. Additionally, one might expect ten years later, there has been more research, which is alluded to in the ending two sentences of the sub-topic, Protective Factors: "Several studies suggest that estrogen, non-steroidal anti-inflammatory drugs (such as aspirin, ibuprofen) and even nicotine might protect against or delay the onset of Alzheimer's disease. This research is in the very early stages and is unlikely to make major contributions to the prevention, treatment, or delay of developing the disease." Hardly an encouraging way to also end the book, not including Appendex 1 through 5, nor the Index of words and terms, which starts with AARP and ends with Worry.
The 36-Hour Day. Nancy L. Mace, M.A. and Peter V. Rabins, M.D., M.P.H.
copyright 1981, 1991
The Johns Hopkins University Press, Baltimore, Md.
ISBN 0-8018-4033-3.---ISBN 0-8018-4034-1(paperback)
Widow to Widow. Genevieve Davis Ginsburg
copyright 1995, revised 1997
Da Capo Press, Perseus Books Group, Cambridge, MA.