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1 A collection of stories about people with dementia the author has known, loved, and worked with. Every story teaches family caregivers how to better care for, and interact with, their loved one with any type of dementia such as Alzheimer's. LOVE, LAUGHTER & MAYHEM: Caregiver Survival Manual For Living With A Person With Dementia Buy The Complete Version of This Book at Booklocker.com:

2 LOVE, LAUGHTER, & MAYHEM Cindy Keith, RN, BS, CDP "A Wealth of Wisdom! How I wish I d had Cindy s practical and crucial advice during the most horrific year of my life as the sole caregiver to my challenging elderly father and sweet but ailing mother, both with early Alzheimer s which went undiagnosed by professionals for over a year!" --Jacqueline Marcell, author of Elder Rage and host of the Coping with Caregiving radio show

3 Copyright 2010 Cindy Keith, RN, BS, CDP ISBN: Library of Congress Control Number: All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, recording or otherwise, without the prior written permission of the author. Printed in the United States of America. BookLocker.com, Inc Cover Design by Todd Engel, Engel Creative Edited by Joyce M. Gilmour

4 TABLE OF CONTENTS Reflections From The Author... xiii The Diagnosis... 1 Nurturing And Humor Are Keys To Calm And Contentment... 5 I Just Say What s On My Mind My Brains Are Already Gone! I Might Have To Kick You Out! DO IT!! DO IT NOW!!! Reach For The Sun, Alice But What If They Don t Want To Go Back To Sleep? Redirecting Ella Mae s Thoughts A Worthy Goal Facing The Painful Truth Holiday Pins and Needles He s Selling All My Fur Coats! Do You Think We Should Still Take Our Vacation? Safety In The Home I LL WHUP YOU! Driving With Dementia Okay--You Can Have My Car Keys! Isolation The Mack Truck Heading Straight Toward You--Fearing For Your Own Safety I m Going To Kill You! ix

5 Cindy Keith, RN, BS, CDP How Can We Convince Mom To Move Here? When Will I Have To Make The Nursing Home Decision And What Do I Need To Look For In A Facility? Let s Talk About Falls I Don t Want To Stay Here! Forever Following Old Glory C mon--give Us A Hug He Won t Keep His Shoes On! Unique Problems When The Husband And Wife Both Have Dementia I ve Had Two Of The Best Things Happen To Me Today I m Just So Embarrassed Bathroom Humor The Patient s Perspective: Where Are These Thoughts Coming From? Something Terrible Has Happened To Them YOU DRUNKEN BASTARD! Eating Everything In Sight! Bea--Please Come Down Off That Fence Why Is Hydration So Crucial? I Want Beer! Complimenting Gracie More Hydration Tips Maintaining Weight Is Also Important x

6 LOVE, LAUGHTER, & MAYHEM Stealing Cookies! Tips To Help Maintain Weight Facility Caregiver Mealtime Tips I Have To Catch The Next Bus You Have Such Beautiful Furniture! The Thief Among Us Esther s Stolen Treasures The Cake In The Clothing Let Go! It s Mine! Eli s Praying Method Help Me! They re Going To Break In Here! Delirium They Just Stole My Baby! A Nasty Surprise Attack A Close Call I Want To Go Home NOW! The Cows Need Milkin! It s Different When It s Your Own Father Index xi

7 Reach For The Sun, Alice It s 3:40 a.m. and I catch a movement out of the corner of my eye and turn to see Alice slowly ambling down the hallway toward the nurses station. Her white, wispy hair is pressed flat on one side of her head, and in wild disarray on the other side. She s cold, and has her arms clutched across her chest, no slippers and no housecoat. I rise with a smile and hurry toward her: Alice! What woke you up at 3:30 in the morning? Oh, it s not 3:30, is it? I thought it was time to get up and get ready for work! I put my arm around her and slowly begin to turn her back toward her room. Yes, it s almost 4 a.m., and you really look cold. Let me help you find something to keep warm. Yes, I m cold. How do I turn up the heat? But now that I m up, I might just as well get ready for work. I don t think I ll get back to sleep. Oh my! What I wouldn t give some mornings for an extra hour or two of sleep! What time do you need to be ready for work? Oh--I don t know. I guess I m usually ready by--by- -Oh, I don t know. I get ready early. 25

8 Cindy Keith, RN, BS, CDP I ll tell you what, Alice. You climb back into this nice warm bed. Here s an extra blanket for you, and try to get a little more sleep, and I promise I ll get you up in plenty of time to get ready, PLUS, I ll make sure you get your favorite oatmeal with raisins and brown sugar for breakfast. How does that sound? Well, I don t feel very tired right now. I don t think I ll be able to go back to sleep. I understand, and that s fine if you can t. We ll find something to occupy your time if you re up early, but let me put your music on and maybe that will help you. I wouldn t want you to be sleepy all day tomorrow at work. I tuck her in, put soft, relaxing music on, dim the lights, and sit on the edge of her bed. Alice, here s a good way to relax enough to get back to sleep. Tell me about a vacation you once took. Where did you go? Oh--there were so many. You know we always liked to go to Barbados every year. The children just loved it. Okay--Alice, close your eyes, and picture yourself on the beach with the children. Feel the hot sun, how your feet feel in the sand, and hear the waves. Can you see all of that? 26

9 LOVE, LAUGHTER, & MAYHEM Alice smiles and closes her eyes. Yes, that sun was pretty hot so I always wore a hat on the beach. What a smart idea that was. Now, I m going to leave you here to think about Barbados and what a wonderful time you had. Remember the warm sun, and the laughter of the children playing on the beach. I gently kiss her forehead and quietly leave the room. Alice is snoring softly when I check on her twenty minutes later. What could I have done if Alice had not been able to go back to sleep or had resisted my redirection back to her bed? Read on. 27

10 I LL WHUP YOU! Bea was always such a little dynamo around the facility. When she was first admitted, she constantly wanted to be busy, so we would often give her chores to do such as pushing a non-electric floor broom down the hallways, or folding aprons or towels from the special basket of items we kept for residents to fold. You will recall the story earlier when I told you about how Bea reacted to an employee attempting to vacuum a hallway where she had just run the nonelectric floor broom. In Bea s mind, she certainly knew how to vacuum the floor, and she had done a good job, so this employee was clearly doing something wrong and needed to stop. If my employee had not stopped at Bea s request, then Bea would have interpreted that as a direct reflection on her capability to properly vacuum a floor, and she would have reacted in anger. In order to preserve Bea s dignity in that instance, the employee reacted appropriately by stopping her vacuuming and apologizing to Bea. As most people with dementia are, Bea was quite astute at reading body language and interpreting the tone of voice used when speaking to her. She was standing just outside my office one day talking to an employee about doing some activity and I heard this employee respond to her in a patronizing voice: Now Bea, you know you can t do that anymore at your age. I looked up in time to see Bea draw herself up to her 86

11 LOVE, LAUGHTER, & MAYHEM full four foot height, glare up at the employee with her jaw locked, as she shook her finger beneath the employee s nose and said in a furious tone: Don t you talk to me that way. Just cause you re bigger than me doesn t mean I can t whup you when you need it! And as she stalked away, she smacked this employee on the behind to drive her point home. Bea recognized she was being treated like a child, and she didn t like it one bit. I often use this story of Bea when training staff on dementia care because it illustrates so clearly how crucial it is for staff and families to be aware at all times of what their body language is saying, and what the tone of their voice conveys. Because of the brain damage, the person with dementia can no longer figure out what all the spoken words mean. Just as you and I do without even thinking about it, just as infants, and animals do, we all read body language. Body language and tone of voice speak louder to a person with dementia than the spoken words do, always, always, always! Something else to consider on this topic is that when a person with dementia can no longer express their anger or frustration at someone with words (because their brain just can t find those words anymore) they will often resort to using their fists to get the point across. If Bea had lost the ability to say those words in anger, she would still feel the anger, and not being able to verbalize it would have resulted in her using her fists to make her point. 87

12 A collection of stories about people with dementia the author has known, loved, and worked with. Every story teaches family caregivers how to better care for, and interact with, their loved one with any type of dementia such as Alzheimer's. LOVE, LAUGHTER & MAYHEM: Caregiver Survival Manual For Living With A Person With Dementia Buy The Complete Version of This Book at Booklocker.com: