Caring for Carolee

Howard D. Mehlinger

Description

“I appreciate it as a good fusion of personal experience and practical tips.”
-Dayna A Thompson
Alzheimer’s Educator
This booklet is intended for readers who wish to learn about the impact that dementia can have on the lives of happily married couples. The author traces the changes that have occurred in their individual lives and in their relationship to one another since his wife was diagnosed with Alzheimer’s disease. Beginning with their awareness of her disease to the present day, the reader will learn about the adjustments they have been forced to make as they strive to “live normal lives” in their own home, as long as possible.
This booklet is also a love story. It is told from the husband’s (and primary caregiver’s) point of view. He explores what it means to care for a loved one when the loved one is no longer capable of caring for him.
There is nothing remarkable about the lives of the individuals described in this booklet. Hundreds of thousands of American men and women who are caring for a spouse afflicted with one or more forms of dementia have similar experiences. What is noteworthy is the near absence of first-person accounts by those who are coping with dementia on a daily basis. This booklet helps to help fill that gap.

Sujets

• Santé et bien-être
• Santé du quotidien
• Santé au quotidien
• Santé au quotidien
• Fitness
• Health
• Dementia
• Diseases
• Alzheimer's

Informations

• Publié par: AuthorHouse
• Date de parution: 11 avril 2014
• Nombre de lectures: 0
• EAN13: 9781496903617
• Langue: English

Extrait

CARING for CAROLEE
 
 
What It’s Like to Care for a Spouse With Alzheimer’s At Home
 
 
 
HOWARD D. MEHLINGER
 
 
 

 
 
AuthorHouse™
1663 Liberty Drive
Bloomington, IN 47403
www.authorhouse.com
Phone: [phone]
 
 
 
 
© 2014 . All rights reserved.
 
No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.
 
Published by AuthorHouse 11/29/2022
 
ISBN: 978-1-4969-0362-4 (sc)
ISBN: 978-1-4969-0361-7 (e)
 
Library of Congress Control Number: 2014906468
 
 
 
 
Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.
Certain stock imagery © Thinkstock.
 
 
 
Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.
CONTENTS
Foreword
Acknowledgments
Chapter 1: Alzheimer’s Changed Our Lives
Early Symptoms
Denial
“What’s wrong with mom?”
Chapter 2: Attempting To Live Normally
Activities of daily living (ADL)
Dressing
Bathing
Grooming
Dealing with Incontinence
Feeding
Transferring
Managing Medical Treatments
Providing Intellectual and Emotional Support
A Typical Day
Chapter 3: Stages of Alzheimer’s Disease
Denial
Grief
Despair
Anger
Resignation
Chapter 4: Caring for the Caregiver
Wrestling with SIG
Employing Help
Join a Support Group
Chapter 5: A Few Lessons Learned
Caring for Carolee: An Epilogue
If You Can …
About the author
FOREWORD
I FOUND IT TO BE a unique and worthwhile work. I appreciated it as a good fusion of personal experience and practical tips. Many of the experiences that you shared provided good “food for thought” about decisions that may need to be made or considerations for the future. I found it especially encouraging for those who wish to provide care at home, while being realistic about what that might mean. I saw this very personal story of yours as a “support group go to” in many ways. Thank you also for discussing the issues of intellectual and emotional stimulation. I think that this is something that is not talked about much, particularly when the patient is past the early stages. I also found the section regarding your own struggles as being potentially helpful to others who may think they just have to “grin and bear it.” We are all humans, and you are right, as our loved one changes, so do we.
I hope that you continue to publish this and that we can find a good way to get it into people’s hands. Thanks for sharing your story with others, in ways big and small.
Dayna A Thompson
Alzheimer’s Educator
ACKNOWLEDGMENTS
I AM INDEBTED TO THOSE who helped me become Carolee’s caregiver and to those who helped me write about my experience. My first teacher was Carolee. She understood that part of caregiving would be accepting responsibility for the many homemaking tasks that she could no longer perform. She taught me to be a homemaker. As the disease progressed I employed professional caregivers, part-time, to assist me with her care. Two of these professionals, Evelyn Hawkins and Larita Knight, have taught me much of what I know about caring for an Alzheimer’s patient. They have been my primary caregiving instructors.
I have also received help and support from friends, neighbors, and family members. They have made my life as caregiver easier than it would have been without them. I belong to a dementia support group that meets twice each month. The group consists of individuals who care for spouses afflicted with Alzheimer’s or another form of dementia. The members of the group have provided practical advice and much moral support. The group has been led first by Cathleen Weber and later by Dayna Thompson. Both women have been sources of inspiration and professional wisdom.
With regard to this publication, John Woodcock provided editorial advice that helped shape the final product. Eve Russell, Barbara Johnson, Evelyn Hawkins, and Larita Knight read early drafts of the manuscript and offered valuable suggestions. Dayna Thompson reviewed a draft from the point of view of a behavioral health professional. I am grateful to all of these readers and advisors. Alas, any errors or mistakes that remain are solely my responsibility.
CHAPTER 1
ALZHEIMER’S CHANGED OUR LIVES
MY NAME IS HOWARD. I am an 82-year-old, retired, university professor. I live in Bloomington, Indiana with my 80-year-old wife, Carolee, who is afflicted with Alzheimer’s disease. She was diagnosed with the disease in 2003. For the past eleven years, I have cared for her in our home.
I was poorly prepared for the job of caregiver. My various college degrees seem irrelevant. My previous positions as a high school teacher, athletic coach, professor, and university administrator did not provide experiences that apply easily to caregiving.
Carolee and I have enjoyed a traditional marriage. I was expected to be the primary breadwinner for the family; Carolee was in charge of managing the home and raising our children. Our marriage has been a partnership, and each of us had separate responsibilities. We helped each other when we could be useful; otherwise we stayed out of each other’s domain. The only point I am making is that there was nothing in my training or prior experience that prepared me to be her primary caregiver. Indeed, if you were to ask our children, they would probably tell you that I was wholly unqualified to be a caregiver. The term caregiver was not a word they would have associated with my name.
What does one need to be a successful spousal caregiver? To do the job well the caregiver needs lots of time, much patience, empathy, a sense of humor, adequate physical strength, and a willingness to learn new skills. Love for and devotion to one’s spouse is certainly important also, but the way in which these emotions are felt and expressed changes during the course of the disease. In our case, the purchase of long-term care insurance and the development of an estate plan prior to Carolee’s illness proved valuable. Long-term care insurance enabled us to employ individuals on a part-time basis to help care for Carolee. The estate plan contains documents that allow me to make legal and medical decisions for her as her legal representative.
Early Symptoms
I don’t recall when I first noticed symptoms that suggested Carolee was experiencing some form of dementia. Looking back on this period, I know now that she was suffering from Alzheimer’s at least two years before she was diagnosed with having the disease. She was losing weight and sleeping more. She complained that food no longer had much taste for her. She lost interest in many activities that she once enjoyed, e.g. playing bridge and cooking. She forgot conversations that had transpired only a few minutes earlier and repeated stories that she had just told.
Perhaps the most obvious signal of the disease occurred a few months prior to our learning she had Alzheimer’s disease. Carolee had hip replacement surgery. When I visited her in the hospital a day after the surgery, I found her sitting on the edge of her bed, appearing very upset. I sat beside her and she whispered, “There is a Nazi here and they tortured me.” I laughed, thinking she was joking for some reason. She was not joking -- she was frightened. The “Nazi” turned out to be a kind but determined physical therapist, and the “torture” took place in the physical therapy room. Carolee was having a hallucination, triggered by the anesthetic and her Alzheimer’s disease. I have since learned that an anesthetic can have the effect of prompting extreme symptoms in patients suffering from dementia.
In the weeks that followed Carolee’s release from the hospital, I occasionally suggested that we should consult a doctor to learn if she were experiencing symptoms of a disease. She always brushed aside my concerns. I asked our family physician to provide me with some kind of memory test that Carolee and I could administer to each other at home. She refused to take it. I noticed that she was reading articles about mental illness, but she did not want to discuss her symptoms with me or our doctor.
Denial
For the first time that I had known her, she was in denial. Carolee, who was usually fearless in confronting any kind of problem, was frightened by what she thought might lie ahead for her. She understood that to lose one’s mental abilities is to lose much of what makes us human. Inevitably, dementia would also lead to a loss of her independence. What could be more frightening? It is not surprising that many who show symptoms of dementia resist having a rigorous examination.
When my efforts to persuade her to see a doctor failed, I waited until she was due for an annual health checkup with our doctor. A few days prior to her exam, I wrote a letter to our family physician and described the symptoms I had observed. I stated that I doubted that she would tell him about these symptoms, and I urged him to give special attention to them. I felt very guilty writing such a letter without her knowledge, but I believed that if she were suffering from some kind of mental disease, we should begin treatments as soon as possible.
The doctor gave her a memory test and concluded that she showed symptoms of Alzheimer’s disease. He also recommended that we co