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 other, Tee. Due to her age, physical limitations, and the type of full-time home care Dad needed, she felt she could not physically provide the level of care Dad would require. As such, Dad moved in with me, and I became his full-time family caregiver.

If you have physical limitations and still want to be the caregiver, seek the advice of your doctor or health-care provider for a candid assessment of your abilities and how they balance against the needs of your patient. Physical limitations do not automatically disqualify you as a family caregiver; however, depending on the nature of your limitations and your patient's needs, you may need help, as was the case in my situation.

Prior to Dad requiring full-time home care, I was recovering from extreme pain associated with herniated and bulging discs in my lower back. While recovering, I occasionally walked with a cane and was under significant lifting and twisting restrictions. In order for me to be able to appropriately care for Dad, I obtained the services of an outstanding live-in state-certified home-care assistant (Jonathan Otoo) who managed all the physical aspects of Dad's care, thus allowing me to recover without risking further back trauma. Without Jonathan, I would not have been able to effectively and safely care for my father.

Since Amy did not have long-term care insurance, she nor I could afford the services of a home-care assistant. Fortunately, I had recovered from my back problems sufficiently enough to give me the capability to handle all of her physical requirements.

Mental and/or Emotional

When required, can you mentally and emotionally adjust in order to clinically treat your loved one as a patient or pampered loved one, as appropriate? If pain management is part of your patient's treatment, can you emotionally handle his or her pain?

Are you already suffering from depression and/or overly stressed in your daily life? Do you have memory or other mental limitations due to either age, medical, and/or psychological infirmity? Do you suffer from adult attention deficit disorders (ADD) or attention deficit hyperactivity disorder (ADHD), have anger or anxiety management issues, or have any other mental or emotional limitations that could prevent you from being an effective family caregiver? Bluntly, caregiving can be stressful and demanding, requiring a family caregiver who can mentally and emotionally handle the additional load.

I started my caregiving journey with Dad on a full emotional and mental tank. Caring for Dad was at times stressful and frustrating but very manageable. After Dad died, I was physically tired, emotionally drained, and depressed due to feelings of guilt—because he had died "on my watch." To recover, I had planned to take significant downtime to refill my emotional and physical tanks, then a month and a half after Dad died, Amy took a medical turn for the worse and required full-time care.

I started caring for Amy with only a quarter tank of emotional and mental gas, which had some unfortunate consequences down the road. Was I emotionally prepared to care for Amy? I thought I was, but armed with what I know now, probably not. I feel I succeeded in my caregiving endeavor with Amy, but it came at a cost. Knowing what I know now, I still would have cared for Amy but with a different strategy.

In summary, physical limitations are obvious considerations; however, do not discount the importance of mental and emotional factors. Again, seek the advice of your doctor or a professional counselor, and also read chapter 3, "Caring: Sanity, Success, and Recovery," if you have concerns or questions about your ability to be an effective caregiver.

Now that you have assessed yourself, what else do you need to check?

Home

To safely care for your patient, you will need to inspect your home or your patent's home and take corrective action for overall safety and ease of access and exit. If appropriate, as in the case of dementia patients, "child- proof" appropriate areas to ensure your patient does not have access to anything dangerous.

Safety Assessment

There are two ways a home safety assessment can be completed: (1) professionally, for a nominal fee, by a specially trained RN or other certified/licensed professional provided by a professional home-care assistance agency, or (2) you can do the assessment yourself.

If conducted by a professional agency, ensure you get a written and signed report of the assessment results and keep in mind that they may require you to sign a contract for home-care assistance before they will do the assessment. If you choose to do the assessment yourself, review appendix B, "Home Safety Assessment Checklist." This sample checklist covers both the outside and inside of your home and includes a special checklist if you will be caring for a dementia-impaired patient.

Doing a home safety assessment and taking corrective action will be time consuming but is worth the effort because you will be providing a much safer, caring environment for you and your patient.

Emergency Escape Plan

You will need to develop a contingency plan for an emergency exit from all floors in your home in case of fire, natural disaster, or other calamity. This is a critical area often overlooked because such emergencies are not routine.

If such an emergency occurred and an immediate exit was necessary before emergency personnel arrived, I had a collapsible ladder for Dad, Amy, and me to climb down out of the house from any second-floor window if stair access to the ground floor was blocked. When Dad and Amy lost their mobility, I borrowed rope and a body harness to lower them to the ground. Emergency exit from the ground floor was not an issue due to numerous windows and three door exits to the outside.

Please do not take this planning for granted. I initially did.

Given the numerous windows in Dad's house, I automatically assumed I could open any of them as a potential avenue of escape. My instincts told me to check the windows anyway, and I discovered that all the windows were nailed shut. A decade prior when Dad had to take care of Mom, who had Alzheimer's disease, he nailed all the windows shut so Mom could not open one and fall out. You can imagine what would have happened if Dad and I had to escape from the second floor and all the windows were nailed shut. Enough said.

If you have any questions or need guidance, contact your local fire department. Contacting the fire department also gives them forewarning about what will be needed to effectively evacuate your patient in case of fire or other emergency.

Backup Power

If your patient requires medical monitoring, comfort-related (motorized hospital bed, air mattress, etc.) and/or life-sustaining (ventilator, etc.) equipment at home, purchase a backup battery or gas-powered generator, as appropriate, to address electrical power outages. To further protect your patient, consider a generator that emits an audible alarm when electrical power is lost. Consult with your local utility company for guidance on the type and size of generator needed or any other utility-related steps you will need to take.

Additionally, ensure that your utility company is aware of your patient's medical condition and equipment needs so the house can be listed as a high priority for response and utility-related repair services.

Phone

If you are caring for a patient with dementia or who is otherwise mentally impaired, be very sensitive to phone access. While caring for Dad, I never gave phones much thought until Dad tried to call Tee while I was in another room. He pressed a speed-dial button and connected to one of my friends. When my friend answered the phone, Dad proceeded to talk to her without realizing that she was not Tee. My friend had to call my cell phone because Dad also forgot how to hang up the phone properly, resulting in the phone connection remaining open.

Needless to say, I moved all phones out of Dad's reach and managed his calls from that point forward.

Always plan for the unexpected.

Transportation

Having performed a home safety assessment and developed an emergency escape plan, you need to assess your vehicle. Your vehicle may be perfect for you but not for your patient.

Comfort and Accommodation

You will probably be transporting your patient to doctor appointments or other locations in your personal vehicle, which could present a problem if your pride and joy is a pickup truck with monster wheels or an SUV that would require someone to take a huge step up to enter your vehicle or a daring leap down to exit. If your patient is completely mobile with no strength or limb issues, this may not be a problem, but if your patient has such issues, common sense should tell you that the configuration of your vehicle could be detrimental to both your and your patient's safety.

Fortunately, for Dad and Amy, I had a spacious low-to-the-ground four-door Cadillac sedan with a huge trunk.

If your patient requires a wheelchair and your vehicle is a two-seat minicar with minimal to no trunk space, you need to determine if the wheelchair will fit into your car. As you evaluate your vehicle, ask the following questions:

• Can I quickly and easily get my patient in and out of my vehicle under normal and emergency circumstances?

• Can my vehicle accommodate the medical and/or assistive devices required to safely transport my patient?

• Can my vehicle maintain the appropriate interior climate/ environment required by my patient's medical condition(s)?

If the answer is no to any of these questions, you will have decisions to make regarding other transportation options, or you may choose to accept the risk of your vehicle's limitations. If you choose to do nothing, be prepared for the consequences if something goes wrong.

Lastly, if your patient is in a wheelchair, take into account the need for a portable folding wheelchair ramp that is not only for in-home use but can also be put in the trunk of your vehicle for exit out of and entry into public buildings. Contrary to popular belief, not all buildings are handicap accessible, because public buildings constructed before 1960 are not required to have wheelchair ramps or handicap accessible doors. As such, I would recommend purchasing a three-foot portable wheelchair ramp to negotiate street curbs and most elevated building entrances. Hopefully, your vehicle can accommodate a ramp in the trunk or backseat.

Safety

If your patient is mentally competent, driving should present no problems. However, if your patient is mentally impaired, you will need to be prepared for unexpected actions, such as grabbing your hand while it is on the steering wheel, trying to open the car door while the vehicle is moving, unbuckling the seat belt, and similar actions.

If transporting a mentally impaired patient and unexpected actions are a concern, consider the following options:

• If your vehicle has a backseat with middle seat belts, place your patient in the middle of your backseat where you can monitor him or her through your rearview mirror.

• If your vehicle has this capability, activate the locking mechanism that restricts the operation of door locks and windows to the driver.

• Ideally, transport your patient along with a friend, family member, or home-care assistant who can monitor your patient while you are driving. If your vehicle is a two-seater, drive slowly in the right-hand lane so you can quickly and safely pull off the road if your patient acts up.

Keeping your vehicle in good operating condition is a no-brainer, but there is one item we sometimes take for granted—gas. Normally, I let my gas level drop to a quarter tank before filling up. However, while transporting Dad and Amy, I filled up when my gas level reached a half tank. It is one thing to run out of gas while driving solo; you only inconvenience yourself. It is another thing to run out of gas with your patient, and he or she needs medical attention.

Vehicle maintenance and safety are not the only items you need to plan for.

Survival Kit

As some of you unfortunately already know, if you live in an area prone to tornadoes, hurricanes, flash floods, wildfires, massive snowstorms, and the like, having a survival kit makes perfect sense. However, living in an area where these calamities never or rarely occur does not mean you can disregard the need for a survival kit because you think this will not happen to me or my patient.

Consider this: How would you care for your patient, if the following happened?

• You and your patient have to evacuate the house for an extended period of time due to a utility mishap or other safety-related reason.

• You are driving your patient to an appointment, and there is a traffic accident or gridlock; you cannot move for hours.

• Your vehicle breaks down in a secluded area where you cannot get a cell phone signal to call or text for help, and your vehicle does not have OnStar or similar technology.

• While driving, your patient shows signs of hypoglycemia (low blood sugar) requiring immediate intervention, and you are nowhere near a store.

(Continues...)

Excerpted from FAMILY CAREGIVINGby Brett H. Lewis Copyright © 2012 by Brett H. Lewis. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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