Offering Understanding and Encouragement for Caregivers. Most families have "skeletons" in the closet. For my wife's family, there was a Monster, a type of dementia that robs loving, intelligent individuals of everything--their dignity, their personality, their memory, their finances, and their minds. The "skeletons" are the remains of loved ones after the Monster has finished with them. The family members who are not devoured by this beast are, even so, crippled and maimed by its effects on their loved ones. Little did I know when Evelyn and I married in 1970 that this "Jabberwock" would come a'calling on us. My wife at age 60 is now vastly gone, with no memory of her children, or me, or our life together. To our horror, one of our children has tested positive for the autosomal dominant (inherited) gene that is the pathway for the dementia Monster's entrance. We pray for a cure. Dementia: The Monster Within is not an extensive explanation of dementia, although we show some of the science involved to help give understanding. It is first and foremost the story of our family, along with the stories of a few others who have met the Monster. Our experiences may be helpful in recognizing the initial assault. This book also provides a framework of essential steps necessary to prepare both caregiver and loved one for their futures. Most importantly, if you have been affected by this Monster, you should understand that you are not alone in your struggle. There is an enormous responsibility in giving balance when sharing hope of curing these diseases. It would be unconscionable to offer false hope. Yet, there is every reason to have hope. As we write, clinical trials are being conducted for treatments, but each individual needs to be realistic--not every disease will be "cured" before causing harm to some of our loved ones. Tens of thousands of scientists in hundreds of research facilities around the world are making discoveries about dementia almost daily. Some of these discoveries will lead to treatments, and some will lead to cures of some of the dementias. This enormous investment in research will pay off with dynamic discoveries. We cannot give up hope that the future holds a way to ... SLAY THE MONSTER!
Anyone familiar with ... Anyone familiar with Frontotemporal Dementia (FTD) knows that this disease is worse than receiving a life sentence in jail. It not only robs the person of their executive and language functions and planning and insight, but also challenges the family in terms of care and often results in strange behaviors that are mis-diagnosed multiple times. The Monster Within provides insight and stories from many family members on how they uncovered and dealt with the disease. The analogy to Lewis Carroll's "Jabberwocky" is brilliant, because this is a difficult battle that can be won, even though the process (and language) of the battle is very confusing. There is hope, and I highly recommend this book for anyone who wants to learn more about FTD. -Jenny Hinsman
