Alzheimer’s Diary: ‘Do not give up hope, don’t become complacent’ after learning stages

(This is part of an ongoing diary as Ginger Sanders shares the emotional journey she is taking with her husband, John, as they discover his onset of Alzheimer’s. Over 5.4 million Americans are living with Alzheimer’s disease; one in eight older Americans has it. Ginger and John Sanders did not expect to be among those statistics. Ginger’s touching story puts a real face and real name on the statistics and – she hopes – will help all of us understand what so many of our fellow Americans, loved ones and neighbors are going through.)
 

By Ginger Sanders
Special to KyForward
 

As John and I travel this new path with the Alzheimer’s bump, we wondered if we could have done something differently had we known the disease’s symptoms. Following that thought, I wondered about the stages of Alzheimer’s and what was ahead of us.
 

Although I’ve wanted my columns to center on our personal Alzheimer’s journey, I would be remiss if I did not share what I have discovered. My first column detailed our first inkling that John may have some memory issues which is why he was tested using the Alzheimer’s Mini Cognitive Test. And to our delight, he scored 100 percent. But that elation was short-lived when, three months later John displayed worsening memory issues. We repeated the test except this time he failed the test. This is after ONLY THREE MONTHS!! Little did we know that was one of Alzheimer’s symptoms ( See www.alz.org).
 

Honestly, after discovering Alzheimer’s warning signs and its progressive stages, I am numb. It can be (and many times is) overwhelming. The signs and stages of Alzheimer’s are so scary. It is difficult to explain to loved ones about Alzheimer’s. I found a terrific resource for explaining Alzheimer’s for all ages (even though it says for kids and teens) here.
 

With all that I have discovered and learned, my new mantra is: DO NOT GIVE UP HOPE, DON’T BECOME COMPLACENT. HAVE FUN!
 

I thought it would be helpful to share Alzheimer’s 10 warning signs or symptoms along with the stages of Alzheimer’s. Don’t let it overwhelm you. Knowledge is good and will prepare you.
 

Alzheimer’s 10 warning signs:
 

1. Memory issues are starting to disrupt daily life (i.e., forgetting important dates or events, asking the same information over and over, losing words in sentences). In John’s case, it was losing words and/or his train of thought.
 

2. There are challenges in planning and solving problems (i.e., keeping track of bills, remembering which medications to take.) Since I do the bills, this sign was not evident and he stills maintains with his medications.
 

3. Difficulty completing familiar tasks at home, work or leisure (i.e., driving to a familiar location, remembering the rules of a favorite game). John forgot how to use a chainsaw. Needless to say, he doesn’t use one at all anymore. However, most of his other skills and tasks, he does very well.
 

4. Confusion with time or place (i.e., losing track of time or date, forgetting where you are or how you got there). John has not exhibited this to date.
 

5. Trouble understanding visual images and spatial relationships (i.e., difficulty reading, judging distance, determining color or contrast).
Again, John has not experienced this symptom. Although we did have his eyes checked to make sure he was not having visual problems
 

6. New problems with words in speaking or writing (i.e., having trouble following a conversation, stopping in the middle of a conversation and having no idea how to continue, finding the right word). Of all the signs, this was the one that triggered our concern for John. This is still the most prominent issue for him.
 

7. Misplacing things and losing ability to retrace steps (i.e., putting things in unusual places, losing things and not being able to go back over your steps to find them again). John has had only one problem which is losing his glasses. To help him, we changed his eyeglass frame to a more prominent frame so it would be easier to see and find. Problem solved!
 

8. Decreased or poor judgment (i.e., poor judgment when dealing with money, giving large amounts of money to telemarketers, paying less attention to grooming or keeping yourself clean). John has not experienced this issue to date.
 

9. Withdrawal from work or social activities (i.e., removing yourself from social activities, hobbies and work projects). John has become self-conscious when he is around anyone outside our family nucleus. He also doesn’t feel comfortable doing woodworking, which is understandable because woodworking can be very dangerous.
 

10. Mood and personality changes (i.e., becoming confused, depressed, suspicious, anxious). I have not observed any change in John’s personality or any confusion. He has more self-consciousness due to him losing words when speaking or losing his place in a conversation.
 

Alzheimer’s stages:
 

Stage 1: Very mild cognitive decline (may be normal, age-related changes or earliest signs of Alzheimer’s disease). May last 10-15 years.
 

The person may feel as if he or she is having memory lapses — forgetting familiar words or the location of everyday objects. But no symptoms of dementia can be detected during a medical examination or by friends, family or co-workers. So many go undiagnosed.
 

Stage 2: Mild cognitive decline (early-stage Alzheimer’s can be diagnosed in some, but not all, individuals with these symptoms). May last two to five years. This is my John’s stage.
 

Friends, family or co-workers begin to notice difficulties. During a detailed medical interview, doctors may be able to detect problems in memory or concentration.
 

Difficulties include:
 

• Noticeable problems coming up with the right word or name
• Trouble remembering names when introduced to new people
• Having noticeably greater difficulty performing tasks in social or work settings Forgetting material that one has just read
• Losing or misplacing a valuable object
• Increasing trouble with planning or organizing

Stage 3: Moderate cognitive decline (mild or early stage Alzheimer’s disease). May last three to five years.
 

At this point, a careful medical interview should be able to detect clear-cut symptoms in several areas:
 

• Forgetfulness of recent events
• Impaired ability to perform challenging mental arithmetic — for example, counting backward from 100 by 7s
• Greater difficulty performing complex tasks, such as planning dinner for guests, paying bills or managing finances
• Forgetfulness about one’s own personal history
• Becoming moody or withdrawn, especially in socially or mentally challenging situations

Stage 4: Moderately severe cognitive decline (Moderate or mid-stage Alzheimer’s disease). May last three to five years.
Gaps in memory and thinking are noticeable, and individuals begin to need help with day-to-day activities. At this stage, those with Alzheimer’s may:
 

• Be unable to recall their own address or telephone number or the high school or college from which they graduated
• Become confused about where they are or what day it is
• Have trouble with less challenging mental arithmetic; such as counting backward from 40 by subtracting fours or from 20 by twos
• Need help choosing proper clothing for the season or the occasion
• Still remember significant details about themselves and their family
• Still require no assistance with eating or using the toilet
 

Stage 5: Severe cognitive decline (Moderately severe or mid-stage Alzheimer’s disease). May last 1-5 years. This stage is so scary. I am apprehensive how I will cope at this stage.
 

Memory continues to worsen, personality changes may take place and individuals need extensive help with daily activities. At this stage, individuals may:
 

• Lose awareness of recent experiences as well as of their surroundings
• Remember their own name but have difficulty with their personal history
• Distinguish familiar and unfamiliar faces but have trouble remembering the name of a spouse or caregiver
• Need help dressing properly and may, without supervision, make mistakes such as putting pajamas over daytime clothes or shoes on the wrong feet
• Experience major changes in sleep patterns — sleeping during the day and becoming restless at night
• Need help handling details of using the toilet (flushing the toilet, wiping or disposing of tissue properly)
• Have increasingly frequent trouble controlling their bladder or bowels
• Experience major personality and behavioral changes, including suspiciousness and delusions (such as believing that their caregiver is an impostor) or compulsive, repetitive behavior such as hand-wringing or tissue shredding
• Tend to wander or become lost
 

Stage 6 and final stage: Very severe cognitive decline (severe or late-stage Alzheimer’s disease) May last several weeks to a couple of years.
 

In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases. At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing is impaired.
 

Crucial issues include:
 

• Vulnerable to infections, especially pneumonia and urinary tract infections
• Loses ability to communicate with words
• Has difficulty eating or swallowing
 

Caregiver role:
 

• Focus on preserving quality of life and dignity
• Express caring and love through touch, sound, sight, taste and smell (i.e. picture charts of family members, rubbing their backs and shoulder, favorite music, favorite meals or snacks, rides in the country, etc.
 

Although the Alzheimer’s patient may not recognize people, it is important to encourage interaction.
 

Again, keys to combatting Alzheimer’s are:
 

• If you or your loved one are having memory issues, take the Mini Mental State examination.
 

Once diagnosed, do the following:
 

• Find a reputable Alzheimer’s clinical trial and enroll in it.
• Take your medication religiously.
• Perform physical exercise daily (it keeps the blood moving and makes you feel better).
• Eat organic foods as much as possible.
• Take 2 tablespoons of virgin coconut oil daily.
• Take 600mg DHA fish or algae oil daily.
• Read, do mental games.
• Stay active and interactive
• Voice your fears to a loved one.
• Get in touch with your spiritual link, whether with God and/or Jesus.
• Don’t wait on doing things you have always wanted to do.
• Appreciate every day and your loved ones.
• Find ways you can help others.
 

Although Ginger is a vice president of sales for a renowned antimicrobial company (SAS Global Inc.), her main objective is to stymie the onslaught of Alzheimer’s on her husband, John. Ginger lives with her husband and three dogs on their farm in Lawrenceburg. A dedicated family person, she and her husband have 11 grandsons. Ginger Sanders is a transplant from South Carolina and a product of the University of South Carolina where she majored in the English Literature. She has taken on the fight of Alzheimer’s to win and help others as they struggle through the quagmire of this disease. She can be contacted at ginwsanders@gmail.com.