Dementia Home Care

How to Prepare Before, During, and After

Tracy Cram Perkins

• Publisher: Behler Publications
• Year: 2021
• ISBN:
  9781941887134
• Topic: Medicine
• Subtopic: Diseases & Allergies

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.

Chapter 1: Introduction

We all look for quick answers and shortcuts. Especially when we are under great stress. This book is for anyone who is struggling to care for someone with dementia. It contains what-can-I-try-in-this-moment tips you can use whether you are caring for your family member or friend.

Each person’s journey is different. The road of dementia care will change every aspect of your life and theirs. Dementia is like playing Hide and Seek: “Ready or not, here I come.”

None of us saw dementia barreling down the hill at us like a Mack truck with no brakes, because it arrived slowly with plausible explanations for everything. Only when we look back do we see the mounting evidence.

No two people experience dementia the same way. No two family members will care for a loved one with dementia the same way. Caring for someone with dementia is one of the most stressful burdens a person can ever accept. We have more training to drive a car, operate a smart phone, or boil water than we do to take care of someone who is saying the long goodbye.

Unlike a day job, with dementia care there are no vacations, no pay raises, no glowing performance reviews. Unlike raising a child, there is no first day of kindergarten, no graduations, no weddings to look forward to.

My journey started when my younger sister called to tell me our father reached his tipping point and didn’t have the health to continue caring for our mother. Our mother had cancer and the treatment caused her dementia. My husband and I decided I would quit my job and take over my mother’s care. What I didn’t know then was my father already traveled down the road of Alzheimer’s Disease. Alzheimer’s Disease is a great mimic, disguising itself as anything else, even from the person who has the disease. I didn’t discover he had it for several more years.

I wasn’t a caregiver. I didn’t know the first thing about caregiving. I didn’t have any medical training. I did know I needed help and lots of it.

The caregiver, that’s you—and me. You may think a caregiver is a person working at a skilled nursing facility who is trained and gets paid. Nope, we fall into the category. We tend to think of ourselves as wives, husbands, life partners, daughters, sons, friends, or extended family. You are a caregiver. Even if you’re three thousand miles away and managing as much as humanly possible over the phone, you are still a caregiver. We are America’s largest health care provider, the unpaid family caregivers.

Dementia care is difficult. It requires patience, adaptability, and a strong back. From learning how to transfer someone who doesn’t want a bath in and out of a tub to dealing with verbal abuse caused by delusions and paranoia. As the caregiver of my family, I know firsthand the depression and anxiety and guilt which comes with dementia care.

My biggest frustrations occurred when something happened with my father and I would vaguely remember reading about ways to take care of the issue but couldn’t find it in any of the books on my bookshelf. Days after the event I would find the possible solutions when I was looking for something else. This book grew from not being able to find the information that should have been at the end of my tired, stressed-out fingertips.

I have organized this book with emphasis on the caregiver. Not everyone with dementia will present symptoms in the same order. The chapters are ordered with the general progression of the disease. In this way, you won’t spend a lot of time searching for help, instead, you will spend a little time finding possible workable solutions.

Unlike other books in this arena, the chapter on laughter is at the front of this book. You will find it is one of the best tools in your toolbox. Not enough attention is paid to the therapeutic effects of laughter.^{1, 2, 3} My husband and I found the easiest ways to motivate my father involved joyous laughter. We made sure it was one of the last things he heard before he passed.

“Laughter is not at all a bad beginning for a friendship, and it is far the best ending for one.” -Oscar Wilde

Clarification of Terms

You will notice when you read this book, I describe the person affected by dementia or more specifically Alzheimer’s as a loved one. After this chapter, I will use the term loved one sparingly. I realize not every caregiving situation is with someone you love. It could be an estranged spouse, one of your cantankerous in-laws, stepsiblings, or someone whose lifestyle you didn’t agree with. We don’t use the snappy words caree or carer here yet like they do in the U.K. What I will do is vary by chapter using the pronouns she or he or they after the introduction of the word loved one. In most cases, however, the majority of people who receive the caregiving are cared for by people who love them.

How This Book Works

This book is designed for reading from start to finish or fanning through the pages until you find what you are searching for. Each chapter contains a text box listing the content of the chapter. For those of you happier with a table of contents or an index, you will find them at the front and rear of this book. For those of you reading from start to finish, you may notice some repetition of subject matter in several chapters. This is for the active page fanner who otherwise might miss an important tidbit.

Within some of the chapters are text boxes listing suggested materials for activities, explanation of terms, or possible solutions to an issue you may be experiencing with your loved one where applicable.

For example, your mother tells you, “The animal drank go juice.” What is she trying to say?

In the chapter Memory Aids and the Family, you will find the Five Magic Words and More⁴ with a text box listing questions you can ask her in conjunction with using cue cards that may clear up what she is saying. It could be she wants more coffee with her breakfast, or she thinks the dog needs to go outside for a personal moment.

The Five Magic Words and More Phrases

• Tell me more about XXX?

• Describe a/an XXX for me?

• Show me a/an XXX?

• Show me what XXX does?

• Show me how you use it?

I encourage you to write down a special or humorous moment with your loved one or jot down notes in a journal. In the chapter The Power of Laughter; The Caregiver’s Perspective, page 7, I share an example from my own journal to give you an idea how to get started if you are not used to journaling. Writing it down will help manage your stress and give you a cherished keepsake once you have recovered from caregiving.

The Appendices contain further examples referenced in various chapters and footnote citations, along with information on where to get additional materials, including websites and suggested reading.

Now let’s get on with your journey.

†Some of the names of the caregivers in the anecdotes have been changed.

Chapter 2: The Power of Laughter; the Caregiver’s Perspective

“Laugh (n). A smile that burst.” ~John Donovan

A Good Laugh a Day Soothes Tension Away

If you are reading this, someone you care about has some form of dementia. For family members and caregivers, dementia will change every aspect of their lives.

Whether they live in a different state and call regularly or are sharing a home with a loved one, the situation will be stressful.

When it happened to me, I didn’t realize I was already a caregiver, driving my dad to doctor’s appointments, helping him with meal preparations. I didn’t realize I would need a crash course in everything from administering medications to working through hallucinations. I didn’t realize it wasn’t about me. It was about my dad.

I needed to slow down to enter the Alzheimer’s “school zone.”

Typical example: After dinner, my father opened the refrigerator door and rummaged around. He found a block of white cheddar cheese in one of the keepers. He opened the package and took a huge bite from the cheese block.

I walked into the kitchen to wash the dinner dishes. My father’s cheeks bulged; his mouth partially open.

“Dad, what are you doing?” My voice rose half an octave and my blood pressure rode the elevator through the ceiling.

He glared at me and put his empty hand on his hip. “I’m hungry,” he said. His mouth full of cheese. A piece of cheese flew from his mouth to the floor.

He finished half the block and placed it back in the fridge. Leaving the refrigerator door open, he wandered to his bedroom.

Something needed to change, and he couldn’t change. The progression of the disease meant change could only go in one direction. It was up to me. I needed to laugh.

Let’s put this into perspective. Hold your hand up in front of your face. Place your palm against the tip of your nose. What can you see? Could you walk around without bumping into things? Maybe. You can see around the outside of your hand, just not what’s right in front of you. Your vision is limited, isolated. That’s what caregiving for someone with dementia does. It isolates. It exhausts. It depresses.

Move your hand out a foot from your nose. This is where you are with a good support network. It’s a place of safety, respite, sharing, caring, isolation relieving. A place to ask for help. Don’t isolate yourself. Support comes in many forms, accept the gift that it offers. Not everyone will ask for help or will have the time to join a support group—even one online. For your own well-being, I urge you to join one.

Move your hand out to arm’s length. This is where a laugh a day drives the tension away. If you don’t laugh, dementia’s side effects will put up roadblocks with the strength of amorous skunks on a hot August afternoon. Who wants that?

Laughter’s Health Benefits⁵

You cannot laugh without being present in the moment. 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.

Laughter Inducing Techniques

Dr. Annette Goodheart, a pioneer in the field of laughter therapy, practiced in Santa Barbara, California, during her lifetime. She referred to laughter as “Portable therapy.” She wrote, Laughter Therapy, How to Laugh About Everything in Your Life That Isn’t Really Funny, encompassing her experiences and the benefits of laughing.

In the chapter titled, “The Big Tee Hee,” Dr. Goodheart said, “We are taught in this culture to face our problems straight on, to be brave, and to strive to solve those problems, not avoid them or skirt the issues. We all want to do the right thing, and so we try hard to solve our problems as our culture has taught us—head on, directly, and with great seriousness. This approach is often paralyzing. It is remarkable that we do ...