Alzheimer’s disease and other dementia

Gone but not forgotten

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Having completed my second novel, currently titled BRIDGED BY BETRAYAL, I packed up all the research I used for my first novel, REQUIEM FOR THE STATUS QUO.

An early version of my 1st novel circa 2014
An early version of my 1st novel circa 2014

REQUIEM spotlights a family that struggles with the tangible and emotional elements inherent when battling a disease that is always fatal; a disease that gives you daily – if not hourly – reminders of its devastating effects.

I could not write about the fictional family’s journey without incorporating some of my own stories from my years as Dad’s caregiver. I also included other people’s stories as told to me through my work as an Alzheimer’s caregiver support group facilitator, and as a Washington State certified Long-Term Care Ombudsman. (Names and facts altered to protect those directly involved.)

My Dad and I on a picnic, Spring 2005.
My Dad and I on a picnic, Spring 2005.

The research materials I packed away this past weekend consisted primarily of the caregiving journals I kept while being my father’s primary long-distance caregiver while he endured Alzheimer’s disease.

That research also included reams of paper I organized into multi-tabbed folders containing the various doctor’s reports and findings from the seven years of dad’s disease journey.

I was not prepared for the emotion with which I was blanketed when I pulled out the large waterproof chest that had resided in my writing space the past three years. Placing my research in the chest, shutting it, and returning it to its original under-the-stairs location was extremely difficult for me.

In a certain sense, I felt I had betrayed Dad because I wasn’t just packing up some paper, I was putting away the physical evidence of his seven year battle of brain function loss.  Read the rest of this entry »

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Caregiving and The 36-Hour Day

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A Caregiver’s Day.

Caring for a loved one is a full-time job, as one of my fellow bloggers clearly illustrates in the attached article.  Please read her article, especially if you’re not quite aware of how full the carer’s day can be.

My father died of Alzheimer's 10/13/2007. I'm on the left, then my hubby, then my brother.
My father died of Alzheimer’s 10/13/2007. I’m on the left, then my hubby, then my brother.

There’s a reason why the book, The 36-Hour Day (now in its 6th edition) is so popular with health professionals and family caregivers.  The subtitle for the book reads, A Family Guide to Caring for Persons with Alzheimer’s Disease, related Dementias, and Memory Loss.  As the former caregiver for my father who died from Alzheimer’s in 2007, I can verify that whether you are providing hands-on care or managerial long-distance care for a loved one, your job never ends.  A normal day is a relative term that changes with every day or hour – or as is sometimes the case – every minute.

My article, A normal day, caregiving style, throws a spotlight on how a patient’s and caregiver’s life changes once a diagnosis has been delivered.  The concept of normal is an ever-changing paradigm where the sand on the beach shifts so much, one can barely hold herself upright.

I celebrate all caregivers who manage this extraordinary task so well, and so devotedly.  You are a hero to many.

You are a hero to me.