If you even suspect a family member or a close friend might have Alzheimer’s disease, I recommend the book, The 36-Hour Day by Nancy Mace and Peter V Rabins.
It is not to alarm you, but to raise your awareness and perhaps ease your reaction. A doctor should and will be the one to diagnose the disease. Remember, some forgetfulness is natural to aging and may not be Alzheimer’s disease at all.
Still, if you are concerned it might be the disease, this book is invaluable. Knowledge and Information can help you accept and cope with the diagnosis should it come.
Considered by many to be the bible for Alzheimer’s and dementia, a look at the table of contents will show you why. The listing itself is ten pages long (in my ebook format). The nineteen chapters are well defined and broken down, so the book can be a very convenient resource. If you read through the contents, you will find specific listings for many of the questions you are asking at each stage.
The 36-hour Day seems to cover it all. Another good thing is its regular updating. The book was first written in 1981, so be sure to look for one of the later editions. While the authors indicate that most of the book remains unchanged, with increased research it’s good to know you have the most recent version. In the last few years more help and aid is often available as well, not only financially, but also for day to day care and needs.
Once again browsing through my own copy, it surprised me how much of the early process I’d forgotten. It’s easy to get caught up in what is happening today. Again, if you suspect it, and have begun to question some of the things your loved one says or does, this book can help you see and understand what is happening.
You can read through it, section by section, to see what sounds familiar. A family member uncomfortable in your home or saying something inappropriate can feel insulting to you when their action may be spurned by fear.
That same family member may lash out in anger. When you think about it, imagine how frightening it must be to forget something you might consider basic. Frustration added to fear may bring unexpected reactions.
The book covers so much of that early process. It includes a variety of examples from individual families. Families that were insulted or hurt because they were unaware Alzheimer’s caused the action from their loved one. While the whole disease can terrify at first, it is a comfort to learn what others have experienced. It’s good to know that first there may be an explanation and secondly that you aren’t alone in your hurt and reaction.
Knowing what to expect can save your sanity at times. Such as when your loved one repeats a question over and over and over. Getting upset with them, telling them they just asked that…is upsetting to both of you. Learning to accept it and how to handle it helps.
What’s Included in the Book
Nearly everything you might ask is covered in The 36-hour day. Chapters that include who to contact for medical help, independent living (such as when they should stop driving), daily care needs. You can read information on research and treatments, possibly preventative and sometimes slowing.
There is information on specific financial issues, nursing/memory care facilities (which I favor), and various brain injuries and disorders that may cause dementia (that may not be Alzheimer’s). You will find lists of online resources as well.
A section also reviews various illnesses your loved one may face. Sometimes relatively minor illnesses can have traumatic effects on someone with Alzheimer’s. There is a discussion as well on late stage care, whether to treat or provide palliative care.
Caregiving at Home
If you plan on caring for your loved one at home, the book is even more important. There are chapters on how it will affect you, covering the gamut of emotions you will go through. It is so important to know ahead of time what you will go through as a caregiver and as a family member.
The chapter on where to get help will be very important. Learn about the options available in your area, from day care to respite care. If you are to take care of your loved one, you must take care of yourself and your needs too.
If this is new to you, I would sincerely suggest you read through the entire book. It will help you understand the process that you, your loved one, and your entire family will face. Even if it is scary at first, it helps to know ahead of time what may lie ahead.
For those of you who have been dealing with the disease for awhile, perhaps you feel like you can’t read another thing about Alzheimer’s Disease. I get like that sometimes. In that case, you may prefer to go straight to your need. I think the table of contents is very well created to offer that assistance.
The changes continue through the mid to final stages of the disease. Often, just when I thought we’d figured it out and things were going to go smoothly from there on, a new symptom or reaction would occur that would leave us grasping for information.
After fifteen years, we are in the late stage of Alzheimer’s. Mom doesn’t speak much any more, which makes me wish we could go back a decade to the time when she would repeat the same sentence so often.
I still find myself looking for answers in The 36-hour Day though now I spend more time learning about the latest research and how to prevent Alzheimer’s disease. You can read more about that and my family’s journey at Alzheimer’s HQ.
I’ve reviewed another book I would suggest…Learning to Speak Alzheimer’s. It’s a great book that is very helpful in learning to connect with your loved one where they are. For their sake and yours, I recommend it.