Mom’s Losing Her Memory I’m Losing My Mind!
Taking Care of Mom and Dad with Memory Decline
by
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Alice, 83 years old, sits in an elderly care community with eyes closed, listening to a voice telling her to open her mouth and take another bite. Alice keeps her mouth closed in protest, not to ingest another bit of food. Alice has lost 15 pounds during advanced stages of Alzheimer’s dementia, a disease she has been battling for 8 years. She also has lost her ability to walk independently, and she is weak and unsteady. She is confined to a wheelchair for safety.
The persistent voice of her daughter, Gretchen, once again demands that she should open her mouth and take a bite of dinner. Gretchen, now in her fifties, is searching for distant memories of when she was young and this role was reversed. She tries to remember the tricks her mother did to get her to open her mouth.
Gretchen recalls a time when she herself was ill and very dehydrated. Her mother would hold a spoonful of clear soup and beg Gretchen to open her mouth, promising her a new outfit after she got better. “Mom,” Gretchen explains, “If you eat and get stronger, we can go shopping!” However, Alice’s mouth remains closed.
Gretchen is losing patience. “Open your eyes!” she demands. Gretchen looks into her mother’s blue eyes hoping to find a spark of attentiveness, and instead, gazes into what seem to be the eyes of a distant stranger who has no interest in Gretchen or what she is saying.
Gretchen has had a long day at work and is tired. She wonders what food she has at home to make dinner for herself and her husband, who by now probably is waiting for her at home. She turns to Alice, who is very thin and does not resemble the able-bodied mother that raised her. She wants Mom to eat, regain strength, and return to a time when she could remember Gretchen’s identity.
Alzheimer’s disease has taken Alice from Gretchen, but Gretchen wants her Mom back. Occasionally, Alice may be more bright-eyed, with moments of clear memory, lucid thoughts, and conversation. However, these times pass, and Alice returns to a state of not knowing her daughter Gretchen at all. Alice then repeatedly asks questions about where her long-deceased parents are located and she reflects on their recent visit. Gretchen does not know how to handle these statements about parents who died many years ago and thoughts that are not reality.
Gretchen’s eyes fill with tears as she struggles with this responsibility that is overwhelming and frustrating. How does this happen? Why is it happening to Alice? What is the best way to care for her? Who has the answers? Gretchen knows she is not the first person to encounter this situation, but it is the first time for her, and she is lost.
Little guidance is provided for many typical journeys and challenges in life. Surprises are around every corner along life’s most important paths. Why are we surprised? Why is there not more guidance before big events in life, such as childbirth? I remember thinking during my first experience giving birth, and all the new experiences that followed, that there is too much unshared information. So much of what happens to us throughout the generations is not discussed.
Despite the difficulties of raising children, many people have the passionate opinion that their experience of raising children was their most significant accomplishment. The small print should read, “With the child rearing experience, you may encounter sleepless nights, emotional upset, financial stress, and other disturbances.” Although literature is available for advice, most sources are inexact and contain theories and opinions that may not apply to the situation. This may cause anxiety about not doing it correctly. For example, ‘time-outs’ never worked with my children. I tried this many ways and read how it should work if done correctly. My children would just get up any time they pleased. The magnitude of the responsibility, experience, formal hands-on instruction, and guidance were lacking in the raising and guiding of children. The unfortunate ‘first child syndrome’ should be labeled the ‘experimental’ child syndrome, defined as when the parents learn. This critical information about child care and rearing responsibility is transmitted through self-study at home with books, the Internet, and parent magazines.
The surprises and challenges in life do not end with child rearing. Another hidden reality that goes unspoken is the secret of what actually may happen when we finally get our children to a stage when there is not as much physical and directional work anymore. The kids are more independent, and family activities evolve, so the child and adult become more connected through conversations and negotiations. We dream this day would come, but it arrives with the surprise of yet another unspoken reality for which we may not be prepared.
We become blindsided with the care of Mom and Dad, with no preparation for this monster of new responsibility. We find ourselves fumbling through issues with little guidance. A new, ‘learn-as-you-go’ experience now faces us when we must care for aging parents.
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About the Book
“The subject of physical and mental deterioration and its consequences on people and their loved ones is one that most of us prefer to avoid, even those of us who provide medical care to the elderly. Yet, this is often part of the human experience. Information written on the subject is usually dry and didactic. Kathy Stewart has granted the reader access to her world, the assisted living community, where extraordinary needs are met by extraordinary people. Through interesting, illustrative, and poignant vignettes, a realistic, often intense and yet hopeful experience is accorded the reader. This book, crafted professionally and compassionately, is a gem that should be read not only by relatives of people suffering progressive memory loss but by all of us, since many of us will eventually be touched by this situation in our lifetimes.”
—Mark H. Greenberg, MD, FACR, Rheumatologist, Author of “Doctor, Why Do I Hurt So Much?”
“Few events impact an entire family more than the onset of dementia in a parent, spouse, sibling, or close friend. Drawing upon her own personal and professional experiences, Kathy Stewart has developed a practical guide for caregivers. The book is easy to read, yet it provides a wealth of useful information which is accessible to all. It should provide knowledge and comfort for anyone caring for an individual with dementia.”
—George A. Kuchel, M.D., FRCPC, Professor, Citicorp Chair in Geriatrics & Gerontology, Director, UConn Center on Aging, University of Connecticut Health Center
“Kathy Stewart has provided an outstanding, informative, and useful guide. This book is required reading for all adult children and caregivers who seek to provide the best possible care for Mom and Dad. I wish I had this book when my own mother developed stroke-related dementia and needed extensive specialized care.”
—Elly Trepman, M.D., Professional Associate, Department of Medical Microbiology, University of Manitoba, www.manuscriptsurgeon.com
About the Author
Kathy Stewart has been a Registered Nurse for more than thirty years, providing intimate guidance for aging adults with memory decline. She is an Executive Director of an assisted living community. She treats patients and consults with families on all aspects of health, dementia, and Alzheimer’s disease. Kathy is a sought-out consultant and speaker on elderly care to hospital personnel, hospice caregivers, and family and community groups.