A Dementia caregiver’s resource guide and workbook by Jan Malone
Jan Malone’s book, “My Name is Thelma, But I Don’t Know Who I Am” is as much of a historical perspective from her caregiving experience, as it is a structured system, helping to organize important information.
Information critical for the care of your loved one.
She calls it a “healing journey” by helping others who are thrust into being a family caregiver. She provides a sense of what to expect, a simplified way to keep good records, and practical advise on how to handle the inevitable frustrations that will arise.
While not pleasant, she even provides valuable perspectives leading up to and including hospice care and of course beyond, with funeral arrangements. Being better equipped to deal with difficult situations allows all of us all to get through those times a bit easier.
First, an overview
The definition Jan provides inside the front cover is “A Dementia caregiver’s resource guide and workbook.”
On the surface, this seems bland, but that could not be further from reality. Think about the meaning. Our experience at KalendarKards is one of caregivers routinely lamenting over the challenges they face when trying to identify resources and support. What better tool could a caregiver have than a targeted resource guide, and a structured system in a simple workbook format?
It would be instructive to simply list the chapters as a way to first get an overall feel for the content, provide a set of chronological expectations one might have as a new caregiver, and expose the sheer volume of highly valuable, targeted content.
In our opinion, Chapter 1 is the absolute perfect subtitle.
- What I Wish I Had Known Then
- Medical Information
- Important Phone Numbers and Addresses
- Calendar Legend
- Necessary Documents
- Physician’s Orders for Life Sustaining Treatment
- In Case of Emergency (ICE)
- Laminated Card
- Type of Dementia and Brain Tour
- Global Deterioration Scale
- How to Find a Facility
- How to Have a Meaningful Visit
- Funeral Planning
These chapters loosely represent the general flow of experiences, emotions and examples Jan went through as part of her mother’s care. With no intention of parroting the entire book, the following is a quick summary of each chapter.
1. What I Wish I Had Known Then
This is the central theme and purpose of the entire book. Jan provides a series of short vignettes, focused on “what I wish I knew then.” She intersperses her personal experiences to provide context, perspectives, and most importantly, thoughtful advice.
If you did nothing more than read Chapter 1, you could gain full value from your small investment. Consider the rest of the content a bonus.
2. Medical Information
Many of us have our own tricks to keep track of the medications we all take. Think of the frustration when you can’t compile the list of meds your loved one takes. With the documents contained in “My Name is Thelma, But I Don’t Know Who I Am,” that frustration – and danger – need not occur.
The blank documents Jan provides are:
- Patient Information Document
- Medical Professionals Document
- Medical Procedures Document
- Medication(s) Document
- Important Phone Numbers Document
- Calendar Ledger Document
Seems simple, right? How many of us though, take the time to be this organized? Jan has done most of the work for us!
4. Important Phone Numbers and Addresses
The same logic applies here. Better to have pertinent information at your fingertips when you need it. Prescriptions and pharmacy details, hospital information, and even mortuary contacts are suggested. Again, better to gather the information before you need it, rather than scramble during a stressful time.
5. Calendar Legend
This one got us particularly excited. KalendarKards of course, supports individuals with mild cognitive impairment through a structured, color-coded, pro-active planning and calendar management system. Jan covers the other end, by allowing you to track the overall health experience of your loved one.
With the Calendar Legend tool, you are able to create a visual “month at a glance” view of your loved one’s CHANGES in behavior and condition. No change? No entry. See something different? Use the color-coded legend to document it.
This creates a simple recap that allows you to share historical perspectives easily and more quantifiably with medical professionals and family members alike.
6. Necessary Documents
7. Physician’s Orders for Life Sustaining Treatment
One might successfully argue that every document described so far is “necessary.” However, in these sections, Jan lays out the need to control necessary documents that hold an even higher level of importance.
Insurance, Medicare, Prescription, and Dental cards are important documents to have readily at hand. In addition, documents more legal in nature should be managed as well. The various powers of attorney documents and other legally binding documents should all be identified and controlled.
Jan doesn’t just identify the important documents, she also provides a very specific example in the form of “Physician Orders for Life-Sustaining Treatment.” Along with the example document, she provides clear definitions and instructions for getting started.
Any time you are making critical decisions about the care of a loved one, be sure to discuss your options with the proper cadre of professionals. KalendarKards LLC believes strongly that professional advice can help you make informed and well-planned decisions.
8. In Case of Emergency (ICE)
9. Laminated Card
This one is as simple as it is ingenious.
First, the simple: I.C.E.
ICE or In Case of Emergency, is a growing standard for life-saving information. We all know we should have it for ourselves and our loved ones, but never really seem to get around to it. Jan has provided a simple layout for summarizing the key information needed in an emergency.
In addition to basic information like name and date of birth, she suggests a summary of medications, health concerns, and contact information. Her simple format makes it easy to have the proper information quickly at hand.
Now the ingenious: I.C.E. Back Pack
Jan suggests keeping a backpack at the ready in case a call comes in the middle of the night and a dash to the emergency room is in order. Water, snacks, a book, tissues, notebook/pen, cell phone charger/battery – and much more – are all part of her emergency kit bill of materials. Just grab the backpack and go!
A laminated card with very basic information can come in handy when dealing with medical professionals. Extra non-laminated copies can be made to allow easy communication when “conversation” isn’t a good option.
Yet again, have it ready before you need it, and you’ll be more prepared and less stressed.
10. Types of Dementia and Brain Tour
11. Global Deterioration Scale
Jan provides additional information on the various types of Dementia to help you understand in more detail, the physical changes that are occurring. The more you know, the more equipped you are to manage the challenges.
12. How to Find a Facility
13. How to Have a Meaningful Visit
The inevitable can present itself at any time and moving your loved one to a facility that can provide additional care can be a daunting task. By learning more about how to identify a “good fit” before you need to make the call, you’ll be able to take more time to make thoughtful, objective decisions. Doing so in a rush may not result in the best outcome.
Usually, it is completely unfounded, but to each of us, it is real. Jan provides very appropriate perspectives, delivering tools to help you shed those undeserved feelings.
16. Funeral Planning
As stated above, the inevitable can come at any time. Being equipped with information and perspectives BEFORE you need them is key. As she has done throughout the book, Jan provides valuable perspectives for when a hospice decision is imminent, and helpful suggestions on the critical information to have – and contacts to make – when funeral plans need to be made.
There are few times in our busy lives where we take the time to get organized, gather objects or information, and generally take care of something before the due date. However, when we do, it is a liberating feeling!
Jan Malone’s resource guide and workbook, “My Name is Thelma, But I Don’ Know Who I Am” takes us the majority of the way from procrastination to liberation. Her thoughtful designs allow all of us to easily gather and store the critical information we need to care for our loved ones.
This is a gift for all of us.
About Jan Malone
Jan is the President of HOPE Dementia Support Group (HopeDementiaSupport.org) a non-profit organization that provides advocacy, support and education to individuals caring for people with all types of dementia.
She is a past family caregiver, a public speaker on the topic of caregiving, and a wonderful breath of fresh air for anyone struggling with caregiving duties.