By Rebecca Cheng
How many of us have walked into a room and forgotten why we came in? We may say we’re just getting old, but this might be one of the first signs of Alzheimer’s disease, not a part of normal aging.
My family has experienced a mixture of feelings at Mom’s medical updates. She has been wheezing and has had difficulty swallowing. Soon, she may forget how to swallow as she has forgotten how to walk.
More recently it’s been difficult to know if she recognizes us. Sometimes she’s teary-eyed, and perhaps she is remembering days past. Or she could be cognizant of her declining mental state and inability to care for herself, or in pain or experiencing discomfort.
She’s become like a baby who can’t speak as we try to understand her body language. Unlike a baby, she won’t grow up and become more talkative; rather her mind continues to regress as the disease progresses.
Oh, dear Mom, are you at peace? I wonder as you view the world without speaking and show signs that you are losing the ability to eat. What can we do but spend time with you and love you?
Sadly all the Mother’s Day and birthday gifts of flowers, purses, and clothes are no longer needed. Your needs are so simple—to be loved, to have your children and grandchildren around you, and to be hugged and treated with dignity. We love you, Mom; don’t ever doubt it. We think of you constantly. I, for one, wish I could always be at your side. Your legacy is passing on through the generations. I hope I can be a mom who lovingly cares for her children the way you have cared for yours.
Coming Out of the Blue
A few years ago, no one could have predicted this outcome. After my father’s death, Mom’s independence prompted her to refuse each child’s invitation to move in and take care of her. Moving forward, she downsized from our childhood home and gave away many cherished worldly treasures. My introverted mom learned a new normal, living without Dad as her constant companion even while losing her support system as close friends also passed away.
We gradually noticed a few things amiss after a brief time of settling into her new home. A burnt pot here and there became more frequent. Over-microwaving set off the smoke alarm repeatedly. Would she have been as careless if Dad were still alive?
Finding Help and Support
We hired someone to help Mom with meals and laundry after she fell. The role evolved from housekeeper to caregiver. We were in denial over her declining mental state, optimistic about the future. Instead of accepting her memory loss, perhaps we should have hired mental health care professionals to stimulate her mind right away.
Drugs such as Aricept, Namenda, Exelon, and Razadyne are among the most common drugs used to slow the progression of the disease. They can be effective for at least a few years. The average Alzheimer’s patient lives a little more than eight years after diagnosis, but I’ve had friends’ parents live more than 16 years. I shudder to make this calculation for my mother.
A Perfect Caregiving Solution
Later we discovered an assisted living facility designed to meet the special dementia and cultural needs of Alzheimer’s patients. Tailor-made for my overseas-born mother, they spoke Chinese, served Chinese food, and even had Chinese cable TV.
The patients’ days were well-structured with meal and snack times, activities, lessons in Chinese and English, and singing praise songs together. Christ’s love was the inspiration for the workers. We were amazed at God’s provision for my mother and for us.
We fought the idea of putting mom in a care center, but it turned out to be the best thing for all. She was prone to wandering. The group home had a lock system to keep residents inside 24/7. There were no more early morning calls from the caregiver finding my mom missing. We had more restful sleep each evening. She lived in a structured environment, essential for people with dementia.
Slowing the Progression
One friend told me her father-in-law countered the early signs of Alzheimer’s by playing Mahjong. Joining a Mahjong club, he has remained sharp mentally, enjoying his life. Due to the gambling connotation, my mother would never embrace Mahjong.
Dr. Mary Newport watched her 52-year-old husband, Steve, rapidly decline. She gave him coconut oil and saw a reversal of his disease in 37 days. This has never been scientifically proven, but we now try to give Mom some coconut oil, always hoping and praying for tangible changes.
Painful and Difficult Decisions
When Mom began losing weight rapidly, the doctor asked what our family wishes were with respect to DNR (Do Not Resuscitate) and a feeding tube. If my mom continued this pace of weight loss, his Hippocratic pledge dictated the insertion of a feeding tube unless the family chose otherwise.
We wrestled with the decision for days. Our research showed the facts were clearly against the feeding tube. Feeding tubes added very little time, if any, to someone my mom’s age. In addition, the patient could die during the insertion process and the tube could be torn out if the patient did not like it.
For most people, the quality of life was not improved. Feeding tubes weren’t normally recommended for patients with dementia, as things would only get worse. But this was my mom!
Logic and common sense seemed to dictate not using a feeding tube, but our feelings seemed to say we must do anything and everything, including the feeding tube, to add another minute to my mom’s life. A friend who recently lost her mother to Alzheimer’s at a more advanced stage told me she regretted her choice to insert a feeding tube.
Although we aren’t supposed to compare, I do it constantly to find out more information and to see how others chose to care for and love their parents. Still, each case is different. God is stretching me to trust in his care for Mom and us.
Finally a friend and medical professional helped settle it for me. “You aren’t deciding for your mother. What treatments would your mom desire if she could speak for herself?” This was a totally different issue than the one we were addressing. For us, logic matched my mother’s stated wishes for no feeding tube. My sister found a document Mom had prepared earlier specifying only hydration but no added nutrients. It was resolved peacefully among the siblings with Mom’s wishes specifically obeyed.
This experience convinced me to make it easier on my children by putting all this in writing long before needed, a true gift to avoid second-guessing. Thank you, Mom.
Since then Mom has stabilized and hasn’t lost weight. We could find ourselves in a different situation tomorrow, but for today, there is peace and God’s goodness to us. Each day is a new day.
I think back to the person she was, a busy mother who was always cooking, cleaning, or on the go. Never an idle moment in her life. Sadly, Alzheimer’s disease has robbed me of my mother. At a time when my own children are grown, I have more time to spend with her, but we cannot have relaxing times together.
Alzheimer’s disease is the most common form of memory loss and dementia. There are over five million American Alzheimer’s patients over age 65 with an expected rise to more than 13 million by mid-century and 24 million globally. Although the progression of dementia can be slowed down, it can also progress rapidly.
My grieving has gone on for several years, yet Mom is still alive. If we look hard enough, she is still in there. Lord, help us to love our mom and help her to feel our expressions of love until you take her home.
Lord, it’s hard to understand where she is mentally, but I hope she understands one thing in her heart—that she will be spending eternity with you and my father. To me that’s the best and most comforting thing of all. I look forward to the day when I will see her again in all her wholeness.
Rebecca Cheng is a pen name.
Help for Caregivers
The 36-Hour Day: A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life
by Nancy L. Mace and Peter V. Rabins
(John Hopkins University Press, 2011)
The Twenty-Third Psalm for Caregivers
by Carmen Leal
(AMG Publishers, 2004)
Facts about Alzheimer’s Disease
• It’s the most common form of dementia.
• It happens mainly after age 65, although early cases may begin from 30–60 for 5-10 percent of the people with Alzheimer’s disease.
• Changes to the brain include protein deposits (plaques) and tangles and nerve cell damage.
• Causes include genetics and environment.
• Minorities may be more susceptible.
• Risk increases for females, those with high blood
pressure, and head trauma history.
• Symptoms include memory impairment, lapses of judgment, subtle changes in personality, difficulty
performing activities of daily living, visuospatial
problems, loss of motor functions, difficulty swallowing, loss of bowel and bladder control, and inability to recognize family members and to speak
• Emotional and behavioral effects include aggression, agitation, depression, sleeplessness, or delusions.
Sources: National Library of Medicine, A.D.A.M, Inc., NIH and Alzheimer’s Association, medicinenet.com