Parenting a child with special needs is not an easy job. It is often a lonely, demanding 24/7 job. If your child or the child of someone you know struggles with a life-threatening or chronic illness, then you know how all-consuming such circumstances are. Jolene Philo lived this journey and she had the heart to share her experience to help others by writing two parenting books. See the links at the end of this post. In Nov. 2014, caregivers can benefit from a third publication by Jolene Philo titled The Caregiver’s Notebook: An Organizational Tool and Support to Help You Care for Others.
This post was updated April 2016 with information on Jolene Philo’s latest books.
Jolene Philo is certainly qualified to give caregivers advice on how to organize their information to be an efficient carer, note taker, secretary, book keeper, medicine giver, advocate, medical history chronicler, etc. The Caregiver’s Notebook: An Organizational Tool and Support to Help You Care for Others is for all caregivers; for those caring for an infant, to those caring for a spouse, or to an aging parent. Caring for a loved one is time consuming and stressful, putting caregivers at serious risk of burnout. A resource, like Ms. Philo’s The Caregiver’s Notebook, would have been very helpful when my siblings and I were caring for my father with Alzheimer.
Jolene’s Twitter profile says, “Wife, mom, teacher, special needs advocate, author, blogger, national speaker…” Also you must know that their son was born in 1982 with a life-threatening birth defect that required surgery shortly after birth. That surgery was successful, and after a 2 1/2 week stay in intensive care, he came home. However at two months, complications arose that led to another surgery. To make a long story short, their son had 7 surgeries by age 5 and hundreds of appointments, tests, and procedures and a final surgery at age 15. READ more in our interview with Jolene Philo.
Guest Post by Jolene Philo
The Caregiver’s Notebook:
An Organizational Tool and Support to Help You Care for Others
When people ask why I wrote The Caregiver’s Notebook, an often repeated scene from my childhood springs to mind. I see my mother, nearly at wit’s end as primary wage earner in our family and primary caregiver of Dad and three kids, tearing through the house. She’s frantically searching for one of the piece of paper she used to jot down the name of the medication she needs to order from the drug store. Or the time of a doctor’s appointment. Or the name of the nursing assistant to interview. Or the time of the interview, which was on a separate piece of paper. Because she couldn’t find the paper with the name written on it.
You get the picture.
Organization was not Mom’s strong suite. Endurance was, as the 38 years she spent caring for Dad proved. And I suspect, if someone had come alongside to help her learn organization skills, she would have appreciated both the gesture and the energy she no longer had to spend rampaging through the house looking for elusive bits of paper hiding out with the mysterious socks that got lost in the dryer.
She’s one reason for the notebook.
My own personal caregiving journey is another reason for the notebook. Besides helping care for my dad during my childhood, my husband and I raised two children, one of them with special needs. Being a direct descendant of my mother, my caregiving efforts as a young mom weren’t all that organized either. Now, Mom has Alzheimer’s. With my two siblings and I coordinating her care, we have to be organized.
If you’re a caregiver, you’re also a reason for the notebook.
As a caregiver, you know you are doing a good work. The best work you may ever do. But it is also demanding work. Time-consuming work which doesn’t allow much time for getting organized. The Caregiver’s Notebook was created to provide the organizational structure caregivers need, along with spiritual support to sustain the soul.
Who Can Use The Caregiver’s Notebook
The Caregiver’s Notebook was designed for a wide variety of caregiving situations, such as:
- Adult children caring for aging parents.
- Spouses caring for husbands or wives.
- Parents caring for babies, toddlers, young children, and teens with special needs.
- Parents caring for adult children with special needs.
- Parents caring for typical babies from birth through age 3.
- Senior citizens in good health who want to have their affairs in order for whoever will care for them in case of an accident or sudden illness.
What’s in The Caregiver’s Notebook
The 272 page notebook contains the following sections packed with easy-to-use forms:
- Emergency information
- Calendar: 3 year, blank calendar ready for you to customize
- Medical information
- Insurance information
- Legal documents
- Routines and schedules
And it offers several special features:
- Resource list
- Bible reading plan
- 30 day prayer guides
- Excerpts for caregiving devotionals
- Inspirational verses and quotes
- How to instructions at the beginning of each section
- Stress-relieving tips
- Spiral bound spine so the notebook lies flat
- Pocket page in the back for business cards and papers
How to Use The Caregiver’s Notebook
Not every caregiver will use every section of the book. It’s designed for picking, choosing, and adapting the contents to meet the needs of different situations. The notebook is a portable organizational system that fits in a diaper bag or briefcase. It wasn’t made to house every medical report and insurance claim, every IEP update, or every government form associated with your loved one. But you will find links to more comprehensive and less portable caregiving organizational system downloads at DifferentDream.com. At the website, you’ll also find tutorials about how to complete each section of the notebook.
Jolene Philo is daughter of a disabled father, and she parented a child with special needs. She’s a former educator with 25 years of public school experience. Her books related to special needs include the Different Dream series and The Caregiver’s Notebook.
Jolene speaks frequently at special needs and foster care conferences around the country and conducts special needs ministry training workshops for churches. She and and her husband Hiram live in Boone. They are parents of two married children and grandparents to one adorable toddler, with two more babies on the way.
Follow Jolene Philo
- Twitter @jolenephil
Buy Jolene Philo’s Books:
- Does My Child Have PTSD? What To Do When Your Child Is Hurting from the Inside Out (October, 2015) Amazon.com Amazon.ca
- Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs (November 1, 2011) Amazon.com Amazon.ca
- A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children (August 1, 2009) Amazon.com Amazon.ca
- The Caregiver’s Notebook: An Organizational Tool and Support to Help You Care for Others (November 1, 2014) Amazon.com Amazon.ca www.differentdream.com