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xv Contents Dedication...................................................................... ................................................v Epigraph........................................................................ .................................................vii PrefaceÉ.. ................................................................................ .......................................ix Acknowledgments ................................................................................ .........................xiii About the IllustrationsÉÉÉÉÉÉÉÉÉÉÉÉÉÉÉÉÉÉÉÉÉÉÉÉ..xix Part I. Being a Caregiver: Challenges and Solutions Meet Patricia (Pat) Callone, MA, MRE .....................................................................1 The Special Journey of Caregivers to Persons with Alzheimer's Disease or Related Dementia Persons with Alzheimer's Disease ........................................................................3 Persons with Alzheimer's Disease and Their Families .........................................4 Stresses for the Caregiver....................................................................... ...............5 Early-to-Mild Stage of Alzheimer's Disease .......................................................6 Moderate Stage of Alzheimer's Disease ...............................................................7 Severe Stage of Alzheimer's Disease....................................................................8 A Dozen Tips for Caregivers 1. Consider Your Strengths as a Caregiver ....................................................11 2. Consider the Strengths of Others ...............................................................12 3. Evaluate Your Activities ..............................................................................13 4. Deal with Hurt ................................................................................ .............14 5. Handle Anger and Guilt........................................................................... .....15 6. Find Ways to Relax . . . And Discipline Yourself to Do Them..........................16 7. Keep Friends Close; They Will Give You Energy to Keep Going ..............17 8. Being Responsible vs. Responsive ...............................................................18 9. Accept Life's Frailties ................................................................................ ..19 10. Reflect on a "Patient's Bill of Rights" .........................................................20 11. Create Your Personal "Advisory Board" .....................................................21 xvi 12. Nurture What Remains ................................................................................ .22 About Dementia Chart: A Caregiver's Perspective: Preserved Skills That Can Be Nourished During Disease ProgressionÉÉÉÉ.25 Part II. The Reluctant Caregiver: A Husband and Wife's Personal Story Meet Carl J. Pfeifer, D. Min. Meet Janaan Manternach, D. Min. Twelve Questions and Answers How do I balance my identity as wife and caregiver? How do I handle being constantly interrupted? How can I strengthen my resolve to take the time to listen when my husband is trying to communicate, in order to give him the dignity he deserves? What strategies can I use to enable my husband to be ready to go somewhere within a certain time frame? How can we become comfortable telling others openly and freely that my loved one has Alzheimer's disease? How can I mature into a willingness to do what needs to be done to protect and enhance my loved one's dignity? How do I reckon with the fact that my constant concern and preoccupation with the vagaries of the disease keep me in a constant need of more rest? What do I do with the guilt I feel when my responses are genuinely noncaring or reveal a denial of what is happening in the person I'm caring for? How do I keep loving the person who is, in many ways, no longer the spouse I fell in love with? How do we deal with social situations in which the person with Alzheimer's disease can't participate? What do I do with the resentment I feel about having to take over all the tasks and jobs that used to be my loved one's responsibilities? What are some ways that I can remember that God is with and for both of us every minute of every day? xvii Part III. True Stories: Relationships between Persons Affected by the Disease, Their Caregivers, Family Members, and Friends Meet Connie Kudlacek, B.S. ................................................................................ ..27 Reading the Stories ................................................................................ .................30 Summary Page............................................................................ .............................31 1. Why Can't Mother Remember? ...................................................................32 2. How Can He Be So Insensitive? ..................................................................34 3. Is This the Person I Married?......................................................................36 4. Is It Okay If I Don't Tell the Truth? ...........................................................38 5. How Should We Handle the News that It's Dementia?.............................40 6. How Do I know If Something Is Wrong? ....................................................42 7. Would My Mother become Violent with Her Own Sister? ........................44 8. Who Has Power of Attorney?......................................................................4 6 9. Whose Rights Prevail? ................................................................................ .48 10. Where Are the Keys? ................................................................................ ..50 11. Who Comes First? ................................................................................ ........52 12. Who Does the Changing?....................................................................... .....54 13. How Was I to Know?........................................................................... .......56 14. Is There Caregiver Abuse? ...........................................................................58 15. Should a Caregiver Be On Call 24/7? .........................................................60 16. Should We Use Restraints or Medication; What Is the Priority?..............62 17. How Do I Know It's Not Just Old Age? ......................................................64 18. Who Needs Help; The Caregiver or the Person with Dementia?............66 19. Can You Accept Me for Who I Am Today? ...............................................68 20. To Hold On or Let Go? ..........................................................................70 Part IV. Caregiving Styles: Three Ways to Respond Meet Barbara C. Vasiloff, M.A............................................................................. .73 Discover Your Preferred Style ............................................................................75 The "You" Style (#1)............................................................................ .............76 The "We" Style (#2) ................................................................................ ...........78 xviii The I style (#3) ................................................................................ ................80 Learning Which Style Fits Best Early-to-Mild Stage........................................................................... .................85 Moderate Stage........................................................................... .........................86 Severe Stage ................................................................................ ........................87 Part V. Alzheimer's Disease: Changes in the Brain Meet Roger A. Brumback, M.D. ...........................................................................89 A Dialogue with Dr. Roger A. Brumback Doesn't everyone get senile as they get older? ..............................................91 What is dementia? ................................................................................ ...............92 Is it true that some things are only done by certain parts of the brain?...............94 What happens in the brain of the person diagnosed with Alzheimer's disease?.95 As the disease progresses from the early-to-mild stage what happens in the brain? ..........97 What happens as the disease progresses toward the moderate stage of Alzheimer's?................98 What happens as the disease progresses into the severe stage of Alzheimer's? 99 What actually causes Alzheimer's disease? ......................................................101 Is it true that the disease can actually go undetected for many years?..............101 Is Alzheimer's disease more common than it used to be?.................................103 How long does it take people to die of Alzheimer's disease?...........................104 Is there any treatment for Alzheimer's disease? ...............................................104 What is the medical treatment for Alzheimer's disease? ..................................104 What is supportive treatment for Alzheimer's disease? ....................................105 Chart: A Doctor's Perspective: Timeline of Preserved Skills in Stages of Disease ProgressionÉÉÉ.............106 Appendix 1 Additional Information about the Brain...................................................109 Appendix 2 Self-Assessment: How Healthy Is Your Brain? ......................................115 NotesÉÉ......................................................................... ..................................................117 Comments and Suggestions ................................................................................ ............119
Library of Congress Subject Headings for this publication:
Alzheimer's disease -- Patients -- Care -- Handbooks, manuals, etc.
Alzheimer's disease -- Patients -- Family relationships -- Handbooks, manuals, etc.
Caregivers -- Handbooks, manuals, etc.