5Fifth
*****REVISED DRAFT*****
Sweet Memories
My Mother’'s Life Story and tThe Lessons I Learned from Her Journey with Dementia
by
James C. Neville
To: Clair, Alden, Timothy, Tyson, and Brynn
Continue to Grow in God’'s Light.
Love,
Papa
Contents
Acknowledgements
Preface
Introduction
Chapter I: Prayers Answered
Chapter II: From the Woods to the Hood
Chapter III: Looking for aA Dad
Chapter IV: New Opportunities
Chapter V: RESPECT
Chapter VI: Mother Millie
Chapter VII: Getting Understanding
Chapter VIII: Risk Factors
Chapter IX: Psychological vs. Physiological
Chapter X: The Mind, Tthe Body, and Tthe Spirit
Chapter XI: Reversing the Roles
Chapter XII: Behavior Modification
Chapter XIII: Sweet Memories
Chapter XIV: The Helper and Tthe Cussee
Chapter XV: 24/7 Care
Chapter XVI: Acceptance
Chapter XVII: Prevention
Chapter XVIII: Preparing for Your Future
Chapter XIX: Resources
Works Cited
About the Author
Acknowledgements
I want to first thank my Lord and Savior, Jesus Christ, because without Him this book would not have been possible. I want to thank my mother for raising, guiding, and protecting me. Her strength, tough -love, and kindness equipped me and gave me a great foundation for life. I want to thank my wife of 42 forty-two years, Dinah, who has been by my side every step of the way. I want to thank our sons, Mel and Tim, for being great husbands, fathers, and dads! And, our daughter, Bre, for being a great woman of God and for providing her expertise in designing the cover of this book through her business at www.BMariePhotog.com. I want to thank my brother, Rick, and his wife, Yvette, who both co-labored with us throughout our mom’'s journey. I want to thank my brother, Jack, for moving mom so many times during her lifetime and his wife, Mae, for all the wonderful meals, chats, on the phone, and all the quality times you and mom had together. I want to thank our daughters-in-laws, Trishette and Tierra, for being great moms and virtuous women of God. I want to thank my sister-in-law, Linda, for being a beautiful, loving wife to my brother, John. I want to thank my nieces (John’'s daughters), Karla, Dujuana, Myesha, and Mandesha for being loving and kind and growing up to be strong and beautiful women in the absence of their father. I want to especially thank Mandesha for visiting her grandma and giving her that great little dog named Muffin who brought mom so much joy. I want to thank my niece, Mia, a.k.a. Tinsey, for loving her grandma more and more. I want to thank my nieces, Crystal and Jasmine, for loving and looking after their grandma. I want to thank my niece, Toni, and her husband, Jason, for the joy they brought to their grandma. I want to thank my nephew, Rasheed, and his wife, Carlita, for all the good and loving times they had with their grandma. I want to thank my cousin, Audrey, for her beautiful eulogy and for the love she had for her Aunt Millie. I want to thank my cousin, Dennis, for planting the grapevine that brought mom so much joy. I want to thank my cousin, Elaine, and her husband, Bob, for always making mom laugh when they came to see her. Last, but not least, I want to thank my cousin, Mac, a.k.a. Kelly, who always found time to visit Mmom during some of her most difficult times.
Preface
My purpose for writing this book is to share my mother’'s story and the lessons I learned from her transition through the different stages of dementia. In essence, by reflecting on my mother’'s life and legacy from a Christian perspective, I use her story to illustrate the different stages of dementia and the challenges I faced as a caregiver.
While conducting my research for this book, I noted that some of the charts list the progression of dementia in five stages, i.e., (1) no impairment, (2) questionable impairment, (3) mild impairment, (4) moderate impairment, and (5) severe impairment. Other charts, however, list the progression in seven stages. And, although the five-stage chart accurately describes the stages of dementia, the seven-stage chart provided a better description of my mother'’s journey through the final stages of the disease. Hence, the shift from one stage of the disease to the other towards the end of my mother’'s journey was not as abrupt as described in the five-stage chart. In other words, it was more gradual over a longer period of time, especially after my mother was prescribed the drug Aerosep.
For example, using a dementia rating scale, both the five-stage and seven-stage models have the same or similar descriptions for stages one through three. In stage one, there is are no obvious signs of dementia and the person is deemed normal, i.e., no impairment. In stage two there is are some signs or symptoms that may be questionable or very mild, however, the symptoms are normally associated with old age, such as misplacing or forgetting things, but at some point the person can locate or remember whatever they misplaced or lost. And, for the most part, the person can still function independently.
However, the signs of dementia becomes more noticeable in the mild impairment (stage three ). For example, the person begins to get confused more often while driving, loses things more frequently, start having problems managing their finances and medication, etc. However, the person can still perform many activities of daily living without assistance, i.e., eating, getting dressed, going to the bathroom, etc.
The five-stage and the seven-stage descriptions differ slightly from this point on., tTherefore, as I stated, the seven- stage description worked better for me, i.e., the seven-stage concept breaks moderate and severe into two-part phases. In the moderate (stage four), a person’'s memory and their ability to negotiate activities of daily living becomes more difficult.: They may forget how to safely operate and use appliances, such as a microwave or a stove. They may forget to pay their bills,; may have less memory of recent events,; have problems counting backwards by a specific number, or they may withdraw from being around people.
The signs and symptoms of dementia in the moderately severe (stage five) are very critical and it becomes more apparent that the person needs assistance to negotiate their activities of daily living. For example, memory loss increases to the point where a person cannot remember their own address or phone number or what day and time it is, etc. They may start putting on multiple layers of clothing or being inappropriately dressed for the occasion or season. They may also become confused about activities and events. They may also need assistance using a phone and doing other things they used to do without assistance.
In the severe stage (stage six), the person needs total assistance with their activities of daily living, such as assisting them with cleaning themselves after they use the restroom. This is also the stage where it becomes apparent that the person cannot live alone or be left unattended in an unsecure dwelling. Wandering and other safety concerns becomes an issue at this point. The person may also forget the names of family members, but can recall a familiar face or person. And, tThey may not know the meaning of time and their behavior and personality can drastically change. For example, seeing and hearing things that are not there,; becoming suspicious of people, etc.
The very severe (stage seven) is the final stage of dementia. The person’'s language skills diminishes to the point where they become incoherent.; tThey need help eating, they cannot walk or sit without assistance,; unable to hold their head up or control their movement. This is also the stage where pre-arranged tube-feeding or other pre-arranged plans are executed, changed, or modified. For example, tube-feeding is a form of life support. Therefore, the patient may have instructed his or her wishes through an advance medical directive as to whether or not they want to be tube-feed at this stage of life. However, the doctor(s) and family members may discuss or re-consider the tube-feeding or other options prior to executing any prearranged plans. Hospice care is also a factor at this point.
When I introduced my mother at the beginning this book, her dementia iwas already in stage six, i.e., her condition was severe. From there, I reflected back over her life beginning when she had no impairment. Then I examined her lifespan and her legacy to see if there were any connections between her risk factors, life experiences, and the onset of dementia.
I also discussed the new discoveries regarding the causes and the prevention of dementia and Alzheimer’'s. However, due to the narrow scope of my research and the constant advances in the field of medicine, this book is not intended to be an authority on these diseases. Therefore, the main goal of this book is to promote awareness by sharing information about dementia and Alzheimer'’s combined with the lessons I learned from caring for my mother.
This book also addresses some of the signs and symptoms of dementia and concludes that diet, exercise, and other life-style changes can prevent or slow the progression of dementia, especially in the areas of early detection and treatment. And, based on the information I found, the prospective on prevention looks promising. I also included a list of helpful dementia and Alzheimer’'s resources as well as other information to assist the reader.
My sources of information include the Journal of the American Geriatrics Society,; Journal of Alzheimer’'s Disease,; and Nursing and Health Sciences, as well as several other publications.
Introduction
While sitting next to her during one of my daily visits to the nursing facility, my mother stared at me unlike any time in the past. Her eyes pierced me. Then she motioned me with her right hand and whispered, “"Come here. Come here, Sug.”" I was already sitting close to her, so I leaned over and got closer. With a gleam in her eyes, she smiled and said in a soft tone, "“I love you. I love you, Sug.”" As tears began to swell in my eyes, I hugged her tight and kissed her on her the forehead and said, "“I love you too, mMom.”."
This was indeed an unexpected event because prior to that moment, mMom had not spoken much in several weeks. a And when she did speak, her words did not make much sense. Therefore, that moment gave me hope that the mom I once knew was still with us. I was also very thankful that mMom’'s loving, “"social butterfly”" spirit was still intact, a. At least for the most part. I say this because, after mMom’'s dementia diagnosis several years earlier, I found it difficult to accept the changes that were taking place in her. And, although mMom was aware of the inevitable, she never wavered in her faith and she thanked God every day for His grace and mercy.
In retrospect, I truly believe that my mother, through her faith, prayers, and obedience to God, allowed His angels to perform their assignments in a mighty way! For example, her favorite scripture was Psalm 23, which she lived by. Therefore, she walked in the path of righteousness. She feared no evil. And she surely believed that God’'s "“goodness and mercy”" would follow her all the days of her life. Most of all, she believed that she would “"dwell in the house of the Lord forever." .”
This is her story, her legacy, and her journey through the different stages of dementia and the challenges I faced as a caregiver.
I:
Prayers Answered
My mother always prayed since the time I can remember. Therefore, it was normal for me to see her on her knees both day and night, praying to the Lord. Mom not only prayed during the dark days of her life, she also prayed and thanked God during the good times in her life. And, I know for a fact that her prayers were answered.: Like the time when my brother, Larry, who had suffered from epileptic seizures since his childhood, was drafted and subsequently sent to Vietnam despite our pleas to the draft board.
Mom’'s prayers not only kept Larry safe in Vietnam, her prayers also kept him safe after he returned home and was attacked by several police officers who thought he had drugs in his briefcase. Larry did not have any drugs in his briefcase. He only had the eight-track tapes that he played in his car. The police arrested him anyway and charged him with assault and battery of a police officer. The charges were later dismissed after it was learned that, during the melee of Larry’'s arrest, the assaulted officer’'s teeth got knocked out by his own partner who accidently hit him in the mouth with his club.
My mother also prayed for me, and I’'m glad she did. For one, I knew about God, but I did not have a relationship with Him through His son, Jesus Christ. In other words, I was not saved at the time. Therefore, while growing up in Jersey City, I engaged in some activities that were contrary to the will of God and the plans He had for my life. As a result, some of these activities almost got me killed. For example, when I was nine years old, my brother, Larry, and a few more kids in our neighborhood found out that the white kids from the other side of town had hid some of the goods they stole from a freight train. Therefore, we conspired to steal their stash. And, since I was the smallest, my job was to be the lookout.
We went to the location and searched along the railroad tracks and did not find anything. We kept going further and further down the tracks and just as we got close to a tunnel, a white railroad police officer jumped out of the tunnel and started shooting at us. We ran for our lives as the bullets flew by us. I ran so fast, I thought I was flying because I did not feel my feet touch the ground when I descended down a hill. Thank God none of us got shot and I truly believe that it was my mother’'s prayers that saved my life.