Recommended Reading: "The 36-Hour Day" by Nancy Mace and Peter Rabins

"The 36-Hour Day" Is considered the "bible" for Alzheimer's Care

Alzheimer's Caregivers Bibleby Nancy Mace and Peter Rabins

Essentially considered the bible of Alzheimer’s care and now in its 5th edition, the 36-Hour Day certainly covers everything from the causes of dementia, research in dementia, financial and legal issues, symptoms and behaviors, and even how to speak to children about a loved one with Alzheimer’s.

I have to admit, when my mom was diagnosed with Alzheimer’s several years ago, I couldn’t get up the courage to read this book.  It felt too big and too daunting.  Having now read it, I see now that you can read only the sections that are relevant for you, making it easier to digest especially when you’re facing the prospect of caring for someone with Alzheimer’s.

As part of my job as owner of Seniors Helping Seniors servicing Montgomery and Bucks County, I often speak with clients who are providing Alzheimer’s care for a relative.  Often, they say, “my mother is always accusing me of stealing her things” or “my dad wanders outside around the house and seems lost.”  It got me to thinking about how we judge people, whether it’s a friend, relative, co-worker or even a stranger.  By our interactions with them, their behavior, the way they look, how they speak, we put together a picture of how they are.  We use this frame of reference whenever we interact with them.  Sometimes they may act differently (not in a good way) from the image we have of them and we may attribute this to them having a bad day or something else.  We look at them as a whole person based on their personality.  We don’t walk around thinking, hey, Bill’s serotonin must be down today and that’s why he’s down in the dumps.  We don’t think about the brain’s contribution to our personality and everyday actions.

I think that’s why it’s so hard to understand what drives the behavior of someone with Alzheimer’s.  You have to remember – Alzheimer’s is a disease that slowly destroys brain cells.  When one acts inappropriately, it’s because the brain cells that controlled that part of the brain are damaged.  The person forgets certain things and the brain no longer understands what is going on.  The hardest thing to remember is that the blame should lie with the disease, not the person.

If you read nothing else in this book, read the first couple of pages Chapter 1 – Dementia where it describes Mary and her perspective as someone with dementia.  This is the best description I have read from the perspective of a person with Alzheimer’s.  It’s hard to imagine what they must be experiencing and I think these couple of pages will put you in their shoes.  I can’t reiterate it enough – when your loved one is acting out of character, it’s the disease, not the person.  You need to remember that as you learn to react and deal with the disease.