Five Steps in Creating One for A Loved One with Dementia
Providing long-term care for a loved one with dementia is much like running a non-profit. And every non-profit should begin with a mission statement.
Five years ago, I engaged in the duties of overseeing care for a mother experiencing significant cognitive decline. My unspoken mission had encompassed three simple words: Care for Mom.
I was ignorant of what actions those modest words involved, understanding nothing about my mother’s state and even less about dementia (Did she have Alzheimer’s or simply dementia? What stage was she in?). I also was naïve about the wild ride of caregiving and long-term care.
Care for Mom wasn’t much of a mission statement, nor was it visionary. Most care partners don’t realize they are directing a non-profit. They don’t have the time or energy to develop a mission statement. But, maybe they should.
Copying a generic template used by many organizations, the statement can incorporate humor or candor, but always clarity. Here are five simple steps to creating a statement with intention and compassion:
1. Note the history of the loved one. Who is the demographic represented in this “mission statement”? Write down important dates, milestones, and significant achievements. Write down what your loved one valued in his or her time before memory loss dictated needs.
Mom is an eighty-eight year old Italian beauty…
For her first eighty years, Mom worked, taught, birthed five children, cleaned grime, scrubbed socks, ironed shirts, led Sunday school, sang for funerals and fed a small army. Mom traveled to whatever far-flung child had the greatest desire for comfort and vegetable lasagna. Her mantra was to go wherever there was a need.
2. List the reasons for his or her altered path. The mission statement of a non-profit should contain the reason an organization or program exists. Writing out the rationale for care will reinforce to the care partner the current state of the loved one. This act will support others who might have concerns, or an inability to be present.
In the most recent eight years, Mom ventured down a new path, leading to the creation of Mom, Inc. that exists to:
Witness the individual course of the disease and the distinct disposition and personality traits (including smile and eating off others’ plates) of said loved one, herein referred to as “Mom”.
Utilize funds from Mom’s estate while playing keep away with the government. Accept Mom, Inc. will lose money. There should be no expectations for leftovers.
Reconcile the notion of dementia care with ignorant treatment by insurance companies or other experts, the sterile lights of hospitals and the warm arms of therapists.
Educate educators and everyone else on best practices for care of Mom, living with memory loss, and the self-care of care partner, herein referred to as a “daughter”, living with less of Mom.
3. Determine priorities, actions and responsibilities. The mission statement should specify guiding principles for decisions about priorities, actions, and responsibilities. Be reasonable. What can you accomplish? What do you need help with?
The guiding principles of Mom, Inc. will be:
To keep Mom fed and safe. Dessert first, bacon hopefully always. Includes, but is not limited to, four times a week visits, calls in the night for follow-up tests, emergency room runs, and forced Gatorade drinking to test for UTI’s.
To pay bills, argue with the insurance company, pen angry letters to hospitals about the types of treatment Mom (mostly the daughter) experienced.
To engage the services of a companion caregiver or friend in times when daughter is traveling or working. Daughter will develop deep, meaningful and respectful relationships with care home staff.
Duties of equal importance include procurement of Depends, closet and spring-cleaning, Italian cookie and powdered donut bringing, personal trainer to the “star” or army sergeant in a forced march outside in nice weather. Changing TV channels to find The Chew, tracking down lost (insert clothing item here).
Other obligations fall under the category of escorting Mom to football chili parties though she no longer follows football (mostly because she’s a Browns fan) and definitely should NOT be eating chili.
To ensure Mom has access to comfortable, attractive shoes and “cute” slippers that will support her toddling gait and will not shrivel in industrial washers and dryers.
4. Set your vision for the future. A mission statement should also contain a vision for the future. Recognize it will change. Often.
The vision for Mom, Inc. is:
To find comfort in Mom, who can be particularly ebullient, giggling at everything, including the blackbird splashing in the puddle, where a daughter only sees mosquitoes, and the mention of John James Audobon’s birthday listed in the Daily Chronicle.
To approach all care for Mom in earnest.
To learn when to laugh and when to turn away. The latter a more imperative lesson for the daughter to absorb.
To walk always in the present. Look for the hidden beauty and Mom’s baby doll in someone else’s closet. Embrace the unexpected.
5. Summarize your collective discoveries. Sometimes referred to as a tagline, after the creation of a mission and vision. Writers often reach an ah-ha moment when they realize the message carried inside their words. How will you explain your work – and it is work – to friends and family and curious bystanders.
Breathing life into the woman who breathed life into me.
* For more information on workshops on memory loss or creating a mission statement of care, send an email to:
Annette Januzzi Wick