Family Caregiving explores one of the most precious and fulfilling gifts of love that can be given to a family member or a friend-and also one of the most difficult tasks to undertake. The difficulty increases in magnitude because many family caregivers have no formal medical training other than basic first aid. In most cases, all of their medical knowledge has come from their own life experiences with personal illnesses, accidents, and medications. In Family Caregiving, author Brett Lewis shares his insights and the bounty of information that he learned acting as a family caregiver for both his father and his close friend. He explains that even though caregiving is stressful, being prepared and knowledgeable can reduce stress levels and better position a family member for caregiving success. A caregiver should have a thorough understanding of the patient's personal and family medical history, current symptoms, and medical conditions. It is critical to learn how to interact effectively with medical personnel; to become familiar with hospital/rehabilitation center processes and protocols; and to learn about basic medical terminology, equipment, and procedures. By sharing candid, real-world experiences-including his mistakes-Lewis provides a step-by-step guide that can enable the family caregiver to better navigate the journey of caregiving.

FAMILY CAREGIVING

A Step-by-Step Guide to Successful CaregivingBy Brett H. Lewis

iUniverse, Inc.

Copyright © 2012 Brett H. Lewis
All right reserved.
ISBN: 978-1-4759-4051-0

Contents

Preface..............................................................................xiiiAcknowledgments......................................................................xviiIntroduction.........................................................................xixPROCESS: Planning and Preparation....................................................1Physical, Mental, and/or Emotional Capability........................................3Home.................................................................................5Transportation.......................................................................7Documentation........................................................................12Pharmacies...........................................................................17Medical Equipment....................................................................18Research, Communication, and Tools...................................................20Expenses and Taxes...................................................................26PROTOCOL: Roles and Rules............................................................31Hospitals and Rehabilitation Centers.................................................32Nutrition and Diet...................................................................57Medications..........................................................................59Medical Transportation...............................................................63Home Health-Care Services............................................................66Professional Home-Care Assistance....................................................67CARING: Sanity, Success, and Recovery................................................71Tough Love...........................................................................73Buffer Zones.........................................................................80Success: Regardless of the Outcome...................................................85Caregiver Recovery...................................................................85Epilogue.............................................................................91Appendix A Medical Packet............................................................93Appendix B Home Safety Assessment Checklist..........................................97Appendix C Medical Acronyms..........................................................111Appendix D Medical Specialties, Subspecialties, and Descriptions.....................117Appendix E Medical Diagnostic and Functional Procedures..............................125Appendix F Abbreviated Advance Directive for Health Care.............................133Appendix G Family Caregiving Support Resources.......................................137Bibliography.........................................................................141Index................................................................................147

Chapter One

PROCESS: Planning and Preparation

Prior Planning and Preparation Prevents Poor Performance

Are you ready for this?

One morning, I got a frantic call from my dad's significant other, Tee. When they both awakened one morning, Dad was lying in a pool of his own blood.

After alerting Dad's primary care physician (PCP), I told her to immediately take Dad to the hospital emergency room (ER). With these phone calls, my world stopped and there was nothing more important in my life than breaking every speed limit driving the twenty-eight miles to the ER. This was the start of a five-month journey where Dad permanently lost his independence and I became his full-time family caregiver.

Prior to this event, Tee was his primary caregiver since she and Dad lived together. I served as a consultant, attended Dad's doctor appointments and outpatient procedures, sat with him during a previous weeklong stay in the hospital, and maintained his medical packet and related documentation. In this capacity, I was able to continue my life socially and work—all of which came to an abrupt halt with that one frantic phone call. I was also the family "first responder" because, with the exception of an elderly uncle, the rest of my family lived more than six hundred miles away.

Was I ready for this? No!

Did I get ready? Yes, and quickly!

You probably had a similar experience and are wondering, Oh my God! Can I do this?

Hopefully, I can help you answer this question, because caregiving will require significant preparation and changes in your life, especially if your patient requires full-time care. If you think you are ready for this, please consider the following to prepare yourself to become a successful family caregiver:

• physical, mental, and/or emotional capability

• home

• transportation

• documentation

• pharmacies

• medical equipment

• research, communication, and tools

• expenses and taxes

Your caregiving journey begins!

Physical, Mental, and/or Emotional Capability

The road to hell is paved with good intentions.

Your patient may have mobility restrictions requiring you to provide physical assistance, such as lifting, repositioning, or related support. Additionally, you will need to be clearheaded and able to pay attention to detail in order to process doctors' instructions, insurance requirements, and your patient's medical symptoms and emotional state, and to analyze medical test results, hospital documentation, and the like.

To better understand what you may have to deal with physically, mentally, and emotionally, the following is information about my patients:

Dad:

• Age (at death): ninety-three

• Significant medical conditions: multiple

• Medications: multiple

• Fall risk (mobility problems): yes

• Mentally competent: no

• Emotional disposition: quiet frustration

• Pain management (treatment for pain): no

• Care locations: hospitals, rehabilitation centers, his significant other's condominium, and his own home

• Health-care insurance: yes

• Financial resources: yes

• Family support: yes

• Home-care assistance: yes

Amy:

• Age (at end of caregiving): thirty

• Significant medical conditions: multiple

• Medications: multiple

• Fall risk (mobility problems): yes

• Mentally competent: yes

• Emotional disposition: depression and stress

• Pain management (treatment for pain): yes

• Care locations: my home and the hospital

• Health-care insurance: no

• Financial resources: no

• Family support: no

• Home-care assistance: no

Now that you know a little about my patients, what about you?

Physical

Are you physically challenged with mobility and/or lifting restrictions, vision and/or hearing impairments, or other significant medical condition(s)? Are you taking medications that affect your ability to focus and/or drive? These are important considerations because, despite all your good intentions, if you go down, so will your patient.

If you feel you are not physically able to provide effective care, you are probably right. Err on the side of caution and follow your instincts. This was the case with Dad's significant...