Dementia Home Care: How to Prepare Before, During, and After

by Tracy Cram Perkins

Overview

The target audience is women between the ages of 42 and 65. They represent the majority of unpaid care givers for loved ones with dementia.

Dementia Home Care: How to Prepare Before, During and After will examine taking on the role of care giver and help them make informed decisions about in-home care giving. It will give examples of how to create a safe living space, how to use distraction techniques, and suggest available resources for the care giver. It will emphasize the role of care giver respite and participating in dementia community support to relieve the daily stress of dementia care.

Home care giver, Tracy Cram Perkins, will use anecdotes drawn from twelve years of experience. Demetia Home Care will cover aggressive behavior, coping strategies, memory aids, communication aids, and support services. There is a space at the end of each chapter for the reader to record special or humorous moments with their loved ones. And it will address the empty nester experience after the loss of a loved one—to a nursing facility or to death—rarely covered in other books of this genre.

This life-lesson of care giving is not meant to destroy us but meant to remind us to take care of ourselves, forgive ourselves, accept ourselves. To know other people trudge up this same hill with us every day. To pay forward kindness in some measure. To know laughter has not abandoned us.

At the end, to know some measure of joy.

Product Details

ISBN-13:	9781941887127
Publisher:	Behler Publications, LLC
Publication date:	04/13/2021
Pages:	262
Product dimensions:	8.50(w) x 10.90(h) x 0.80(d)

About the Author

Tracy Cram Perkins’s twelve plus years of experience care giving for two parents with dementia provided the nucleus of Dementia Home Care.

This guide grew from the questions presented by family members and friends overwhelmed by the caregiving challenges with their family member(s) or friends and the frustration of not being able to find the care giver hands-on answers in one book.

Tracy and her husband reside on Washington State’s Olympic Peninsula.

Table of Contents

Table of Contents

Dedication. ii

Acknowledgments. iii

Chapter 1: Introduction. 1

Clarification of Terms. 3

How This Book Works. 3

Chapter 2: Laughter and Dementia. 5

A Good Laugh a Day Soothes Tension Away. 5

Laughter’s Health Benefits. 6

Laughter Inducing Techniques. 7

Suggestions for Using the Journal Space. 9

My Journal Entry. 9

Laughing in a Public Restroom.. 11

Chapter 3: What is Dementia and Alzheimer’s Disease and What isn’t?. 13

Other Types of Dementia Defined. 14

What is Alzheimer’s Disease. 16

Activities of Daily Living. 17

Stages of the Disease. 18

Knowing Your Own Limitations Before You Make the Decision for Care. 20

Cost of Care Rule of Thumb. 22

Health Care Directive for Dementia. 25

Chapter 4: To Drive or Not to Drive, that is The Question. 27

The Driving Contract 30

Medical Intervention. 30

What to do When Your Loved One Becomes Argumentative. 31

Silver Alert 32

Chapter 5: Memory Aids and the Family. 35

When am I?. 35

Cueing Devices. 36

Scrapbooks: Memory Devices, Conversation Starters, Keepsakes. 37

Cueing Aids and Children. 38

Cueing Aids for Questions about Family Members and Friends Who Have Died. 40

Life Beyond Repetitive Questions. 40

Cueing Aids for Basic Needs. 42

Cueing Aids for Nighttime. 43

Cueing Aids for Hoarding. 44

The Five Magic Words. 45

Things to Avoid During the Conversation in Later Stages of Dementia. 46

The Dry Erase Board Option. 47

Cueing Aids for Medications. 48

Family Members Opposing Cueing Aids. 48

Chapter 6: Emergency Preparedness. 51

Disaster Kit 52

Personal Earthquake Bag for Everything Else. 52

Emergency Car Kit 54

In the Event of an Actual Emergency. 54

How to Prepare Before You Get Sick or Die. 60

Contingency Starter Plan. 60

One-Time Emergencies. 61

Continuing Crisis Situation. 62

In the Event You Die First 64

Chapter 7: Doctors, Pharmacists, and Me, Oh My. 70

Setting the Records Straight 70

Doctors’ Appointments. 71

Advanced Care Planning. 73

Testing for Other Illnesses. 74

Healthcare Power of Attorney. 76

Letter of Competency. 77

POLST Explained. 78

Your Pharmacist is Your Friend. 80

Signs and Symptoms of Common Health Issues. 81

Urinary Tract Infections. 81

Hearing Loss and Dementia. 82

Hypothermia. 83

Stroke. 84

Heart Attack. 86

Working with Emergency Medical Services. 87

The Personal Earthquake Bag Revisited. 87

Chapter 8: Travel, Vacations and Holidays. 90

Travel 91

Vacations: Your Respite. 93

Civic and Religious Holidays. 94

Chapter 9: Preparing Your Living Environment for Your Loved One. 98

Looking Through Your Loved One’s Eyes. 98

Safety First 101

Clutter. 102

Lighting. 103

Color Strategies Inside the Home. 104

Flooring and Trip Hazards. 107

Furniture and Interior Pathways. 108

Bathroom Safety. 109

Sound: What is that Noise?. 111

Kitchen Safety. 113

Smell 114

The Home Improvement Store is Your Friend. 115

Pharmacies, Medical Supply Store, or Used Medical Supply Stores. 116

Lock Up the Following Items in Your Home. 118

Telephone Tools. 118

Chapter 10: Distraction Techniques. 121

I Want to Go Home. 123

Shadowing. 126

Sleep Schedule Changes from Night to Day. 129

Inability to Make Decisions. 129

Hallucinations. 131

Delusions. 134

Crying or Laughing Sprees. 135

Agitation—When the emotional volcano erupts. 137

Aggression. 140

When you are faced with an aggressive response, here are some steps to try: 141

Coping with Your Emotions after an Outburst 142

The Meltdown Trigger List 144

Long Term Coping Strategies for Aggressive Behavior. 148

From Sexual Inhibitions to Sexual Aggression. 149

Gun Safety. 154

The Reframing Technique. 156

Chapter 11: Personal Care. 159

Modesty Garments for Bathing and Toileting. 160

Adaptive Clothing. 160

Bathing Schedule. 161

The Bathroom... 162

Bathroom Safety Revisited. 164

The Bathing Routine. 166

Bathing Hints. 167

Bathing Hint Don’ts. 169

Toileting Schedule. 170

Urinary Incontinence. 171

Bowel Incontinence. 174

Grooming. 176

Shaving. 176

Hair Styling and Makeup. 177

Nail Care and Foot Care. 177

Oral Hygiene. 178

Cleaning Teeth and Dentures. 179

Eye Care. 181

Self-Care. 182

Chapter 12: What’s for Dinner?. 184

Week One. 184

Shopping List 184

Check the Pantry For 185

Pesto Chicken Pasta. 185

Easy Chicken Pot Pie. 187

Meatloaf and Baked Potatoes. 188

Shepherd’s Pie. 189

Ham and Rice Bake. 191

Week Two. 192

Week Two Shopping List 192

Check Pantry For 193

Parmesan Pork Chops and Peaches. 193

Soft Chicken Tacos. 194

Country Ham Casserole. 196

Mushroom Smothered Salisbury Steak. 197

Baked Mushroom Chicken. 198

Color Contrasting the Dishes and Silverware from the Food. 201

Bibs, Smocks, Aprons. 204

Spoon-feeding. 205

Fluid Intake. 205

Swallowing and Pneumonia. 206

Chapter 13: The Deodorant Date: Why You Need Respite. 208

Why You Need Couples Respite. 209

The Deodorant Date. 210

What Respite Care Might Look Like if You are Single. 211

Chapter 14: Elder Abuse. 213

What is Elder Abuse?. 213

Warning Signs of Financial Fraud for Vulnerable Seniors: 216

What You Can do to Protect Your Loved Ones. 217

How to Report Financial Elder Abuse. 219

How to Report Physical Elder Abuse. 220

Ways to Avoid Elder Abuse. 221

Chapter 15: Reinventing Your Relationship. 224

Altered Reality and Second Chances. 224

Chapter 16: Knowing When to Say When. 230

The Signs of Caregiver Burnout 234

Stages of Care. 235

Mild Cognitive Decline. 236

Grief Counselling for Dementia Care. 236

Moderate Cognitive Decline. 238

Severe Cognitive Decline. 241

Death with Dignity. 251

Chapter 17: Long-Term Care Options. 255

Paying for Care. 256

Types of Care Facilities. 257

Signs of a Bad Nursing Home. 262

The Department of Veterans Affairs (VA) 264

Chapter 18: Managing Grief and Guilt. 267

The Empty Nester. 272

Visiting the Nursing Home. 272

The Recovery. 275

Chapter 19: The Signs that Death is Approaching. 278

The Signals of Active Dying. 278

Dealing with the Days and Moments before Death. 282

The Moment of Death. 283

Death and Emotional Healing. 284

Chapter 20: Digital Estates and How to Deactivate a Loved One’s Social Media, Email Accounts, and Other Digital Estates. 288

Digital Estates. 288

Deactivating Social Media. 289

What Happens to Email Accounts?. 292

What Happens to Financial Accounts?. 292

What Happens to Music, E-Books and Photo-Sharing?. 293

Chapter 21: When Your Caregiving Responsibilities Are Over. 295

Financial Responsibility. 295

Reporting to Social Security When a Family Member Dies. 297

How Many Death Certificates Do I Need?. 298

Credit Bureaus: Placing a Death Notice on Credit Reports. 300

How do I obtain a deceased person’s credit report?. 301

Unclaimed Money and Property. 303

Disposal of Unused Medications. 303

Chapter 22: We’ve Come to the End of this Journey. 306

APPENDICES. 309

Appendix A.. 310

Example Medication List 310

Example Appointment Schedule. 313

Appendix B. 314

Preparing Your Living Environment 314

Items that make life easier for older adults with mild cognitive impairment: 314

Items for adults with moderate cognitive impairment: 315

Appendix C. 317

The Meltdown Trigger List 317

Appendix D.. 318

Sample Caregiver Guide for Friends and Family. 318

Appendix E. 326

The Legal and Supporting Documents Covered in this Book. 326

How to Prepare Before You Get Sick or Die. 326

Contingency Starter Plan. 326

One-Time Emergencies. 327

In the Event You Die First 328

Healthcare Power of Attorney. 332

Durable Financial Power of Attorney. 333

Letter of Competency. 334

POLST Explained. 336

Digital Estates. 337

Gun Safety. 339

The Driving Contract 340

Health Care Directive for Dementia. 340

Prepare to Care Guide. 340

Resources. 342

Useful Websites. 342

Advanced Directives. 342

Area Agencies on Aging (AAA) 342

Adaptive Clothing. 342

Assisted Living. 342

Locating Adult Day Care or In-home Care. 343

Document Preparation and Organization. 343

Elder Abuse. 344

Elder Law.. 344

Emergency Preparedness. 344

End of Life Care. 345

Group Caregiving. 345

Health Insurance and Medication. 346

Home Modifications. 346

Long-Term Care Facilities. 347

Medical Documents. 347

Meal Services. 348

Financial Management 348

Medication Disposal Services. 348

Positive Approaches to Caregiving. 348

Support Services. 348

Military Support Services. 351

Respite Organizations. 351

Notes. 352

Recommended Reading. 358

Index. 361

About the Author. 370

Editorial Reviews

"A comprehensive manual focuses on providing care for an aging relative.

Perkins offers a wide-ranging and detailed guide to caring for aging loved ones, particularly as they develop dementia,

Alzheimer’s disease, or other cognitive limitations. Based on both her own years of being a caretaker for aging relatives and research into the topic, the author describes many aspects of elder care, from making the home a safe place for a person with diminished cognition to handling the emotional challenges of memory loss. The book also addresses the impact of caregiving on the caregiver, beginning with a reminder of the therapeutic benefits of laughter (“It will lower your tension, your blood pressure, loosen your muscles, boost your immune system, and release those wonderful endorphins which are natural pain killers and mood enhancers—for free, no prescription necessary”). With checklists and templates,
the book guides readers through such practical matters as establishing medical and financial power of attorney,
maintaining a medication list, preparing for emergencies and respite care, and evaluating nursing homes. Perkins encourages readers to help their loved ones maintain their dignity even when they seem unaware of their circumstances,
with advice on assisting with personal care and providing ways for those with diminished speech skills to communicate their needs. Although there are frequent doses of humor, the author’s tone is never glib, and she treats the needs of both patients and caregivers with sensitivity. The manual explores difficult topics, like end-of-life planning and the high cost of residential care, in thoughtful ways while presenting all the necessary information. Other subjects, such as determining when an elder is no longer capable of driving, managing meltdowns and other behavioral issues, and feeding, are also covered in depth. The guide is of use to those who are caring for an aging relative at home as well as those who are overseeing a loved one’s treatment in a nursing home. The layout and organization of the manual make it a convenient reference book as well as a work that readers can peruse cover-to-cover. The volume is solidly written and informative,
based on concrete data and real-world experiences, making it a useful resource for those dealing with the needs of aging

family or friends.

A valuable, sympathetic guide to the highs and lows of elder care."

~ Kirkus Reviews

Dementia Home Care: How to Prepare Before, During, and After, by Tracy Cram Perkins, offers the lived experience of a caregiver, sharing the experiences that impressed upon her the enormity of the physical, emotional, and psychological task she undertook.

These same experiences made Perkins aware of the dearth of practical resources for the novice embarking on this journey. She hopes to fill that gap with this comprehensive, “user-friendly” guide that goes well beyond the limits of a self-help book, impersonal how-to manual, or clinical tome. From Dementia Home Care, readers will gain new insights into human behavior and how to become an effective caregiver without sacrificing their own well-being.

Perkins’ written voice captivates from the beginning. Her first-person accounts of caring for afflicted loved ones are both relatable and authentic. The reader will find themself laughing aloud, or filled with dread, as the author recounts actual experiences that are otherwise hard to imagine happening to oneself.

Perkins’ book explores issues that can stymie the well-meaning, ill-equipped caregiver.

Unexpected situations and/or inexplicable behaviors tend to push one to react first and reflect later. Dementia Home Care not only reveals the sublimated emotional reactions which can skew a caregiver’s perception–and reactions–but also reaffirms the uniquely human qualities of caregiving that often go untapped and unrecognized.

This amazingly comprehensive book seems to address all questions a reader might have.

It contains sections from the commitment of a caregiver and the realities of hands-on challenges, to what happens when the loved one dies, and everything in between.

Perkins includes chapters dealing with legal nuts and bolts, as well as details that one might not have thought about. From emergency preparedness to closing social media ac-counts to dealing with social security, creditors, and the tax man. She even discusses one's own emotional functioning after their caregiver role has ended.

~ Chanticleer Book Reviews

"A truly practical book. From my experience, Dementia Home Care is incredibly thoughtful and very well done." 

~ Barry Petersen, CBS News Correspondent, author of bestselling Jan's Story

From the Publisher

2023-07-21
A comprehensive manual focuses on providing care for an aging relative.

Perkins offers a wide-ranging and detailed guide to caring for aging loved ones, particularly as they develop dementia, Alzheimer’s disease, or other cognitive limitations. Based on both her own years of being a caretaker for aging relatives and research into the topic, the author describes many aspects of elder care, from making the home a safe place for a person with diminished cognition to handling the emotional challenges of memory loss. The book also addresses the impact of caregiving on the caregiver, beginning with a reminder of the therapeutic benefits of laughter (“It will lower your tension, your blood pressure, loosen your muscles, boost your immune system, and release those wonderful endorphins which are natural pain killers and mood enhancers—for free, no prescription necessary”). With checklists and templates, the book guides readers through such practical matters as establishing medical and financial power of attorney, maintaining a medication list, preparing for emergencies and respite care, and evaluating nursing homes. Perkins encourages readers to help their loved ones maintain their dignity even when they seem unaware of their circumstances, with advice on assisting with personal care and providing ways for those with diminished speech skills to communicate their needs. Although there are frequent doses of humor, the author’s tone is never glib, and she treats the needs of both patients and caregivers with sensitivity. The manual explores difficult topics, like end-of-life planning and the high cost of residential care, in thoughtful ways while presenting all the necessary information. Other subjects, such as determining when an elder is no longer capable of driving, managing meltdowns and other behavioral issues, and feeding, are also covered in depth. The guide is of use to those who are caring for an aging relative at home as well as those who are overseeing a loved one’s treatment in a nursing home. The layout and organization of the manual make it a convenient reference book as well as a work that readers can peruse cover-to-cover. The volume is solidly written and informative, based on concrete data and real-world experiences, making it a useful resource for those dealing with the needs of aging family or friends.

A valuable, sympathetic guide to the highs and lows of elder care.

Kirkus Reviews