Why I Walk… Betsy’s Story

Betsy Skibinski is a resident of Palatine, Illinois and an active member of the Lost Souls team for our Northwest Suburban Walk to End Alzheimer’s. Betsy lost her mother to Alzheimer’s after a twelve-year fight against the disease, inspiring her collaboration with the Alzheimer’s Association. Betsy has two adult sons and six grandchildren who she loves very dearly. Retired from teaching English, Drama and Speech and then corporate sales, she currently designs costume jewelry in her private, 1000 square foot studio. From necklaces to bracelets and earrings, Betsy has “never met a bead she didn’t like”. You can see Betsy’s work on Etsy.

Betsy’s mother, Jeanie Gibbs was an active member of her community in both Rockford, Illinois and Sun City West, Arizona. In Rockford, she was the head of the Pink Ladies volunteer group at the Rockford Memorial Hospital. Upon moving to Sun City West, she became involved with the Lioness Group and many other community associations. Jeanie was an avid lover of fashion and jewelry, boasting a shoe collection of over 300 pairs. She hosted parties at her apartment in Sun City West and remained a central and unifying member of her community for years before her diagnosis. 

Betsy began to notice a change when her mother started struggling with balance. She would lose her stability when using the stairs or stepping off a curb. Because her family didn’t know much about Alzheimer’s, they did not realize the source of the problem. After Betsy’s father passed away, she began calling and visiting Jeanie more frequently, as they lived in different cities. She began to notice changes in her mother’s behavior. Jeanie would insist upon putting away Betsy’s car keys and purse in places where Betsy couldn’t find them. She poured herself a glass of orange soap thinking it was orange juice. Betsy learned that her mother’s assisted living dinner mates didn’t want to sit with her any longer due to her repetition of words and stories. 

Upon visiting her doctor, she was originally diagnosed with cognitive impairment. The doctor told them to be patient, as the disease would progress. Betsy was forced to take away her mother’s keys, and moved her into a care center, across from her former apartment. In her new home, Jeanie began sitting by the door and waiting for someone to enter so she could sneak out. Betsy had to maintain constant communication with the day and night staff so that she could monitor her mother’s movements and activities. 

Betsy was heartbroken when the time came when Jeanie no longer recognized her. As her Alzheimer’s progressed, she just stopped speaking. Betsy was in Sun City visiting when Alzheimer’s finally took her mother’s life. “Although it was a long process, I loved my mom so much, and I know in my heart I did the very best I could.” 

Betsy’s experience inspired her to become involved with the Northwest Suburban Walk to End Alzheimer’s. She’s hosted fundraisers and designed and sold bracelets to support her Lost Soul’s walk team. As a part of the Lost Souls walk committee, Betsy travels as a mentor to Rotary Clubs, Knights of Columbus, Lion’s Clubs, and various retirement homes to educate and fundraise for the cause. “I find it very rewarding to create this awareness by talking about my mom’s journey, and sharing a book called “My Mom”, that my mom and I had created together with my mom’s personal likes and photos of the family.”

In her sixth year as an active member of Walk to End Alzheimer’s, Betsy continues her work supporting the Lost Souls team and contributing to the fight to end Alzheimer’s. “A big thank you to the Alzheimer’s Association for the care and support to aid the families, as caregiving is a daunting task.” 

Signs of Alzheimer’s or other dementia versus typical age-related changes

While there are noticeable changes that can be related to the onset of Alzheimer’s or other dementia, there are also typical age-related changes that can be misconstrued for dementia. Our 2020 Alzheimer’s Disease Facts and Figures report lays out some of the differences as well as how to move forward if you are concerned about behavioral changes that do not seem age-related. 

 It is important to understand which changes call for extra attention, and which are to be expected. Some causes of dementia-like symptoms include Lyme disease, sleep apnea, depression, side effects of medications, thyroid problems, delirium, vitamin deficiencies and excessive alcohol consumption. These problems may be reversed with treatment, unlike Alzheimer’s disease. 

Typical age-related changes in memory/behavior:

  • Sometimes forgetting names or appointments, but remember them later.
  • Making occasional errors when balancing a checkbook.
  • Occasionally needing help to use the settings on a microwave or record a television show. 
  • Getting confused about the day of the week but figuring it out later
  • Vision changes related to cataracts, glaucoma or age-related macular degeneration. 
  • Sometimes having trouble finding the right word.
  • Misplacing things from time to time and retracing steps to find them.
  • Making a bad decision once in a while.
  • Sometimes feeling weary of work, family and social obligations.
  • Developing very specific ways of doing things and becoming irritable when a routine is disrupted. 

These changes are common as a person ages and are not always cause for concern or extra attention. Some memory loss and changes in behavior are to be expected. There are some shifts in conduct, however, that may be more notable than the typical changes listed above. For an in-depth explanation of each sign of Alzheimer’s or other dementia, visit our full 2020 Facts and Figures report.

Signs of Alzheimer’s or other dementias include:

  • Memory loss that disrupts daily life.
  • Challenges in planning or solving problems.
  • Difficulty completing familiar tasks at home, at work or at leisure. 
  • Confusion with time or place.
  • Trouble understanding visual images and spatial relationships.
  • New problems with words in speaking or writing. 
  • Misplacing things and losing the ability to retrace steps. 
  • Decreased or poor judgment.
  • Withdrawal from work or social activities.
  • Changes in mood and personality. 

Understanding the difference is important, that’s why here at the Alzheimer’s Association we are committed to always bringing you the facts. If you have questions or concerns, our helpline is available 24/7 at 800-272-3900. 

Indoor Activities to Keep You Entertained During Shelter-In-Place

Shelter-in-place can be difficult to navigate for the 230,000 people living with Alzheimer’s in Illinois. Aside from the concerns of wandering, keeping occupied and entertained can also be a burden. Here are a variety of ideas to stay engaged and bonded with loved ones when staying indoors: 

Play a game. Dominoes, checkers, cards or board games engage multiple senses at once. Some friendly competition can strengthen your relationship and be a good way to have fun between just two people.

Spend time in the kitchen. Cooking or baking a loved one’s favorite dish or trying a new recipe can be a fun adventure together. Ask your loved one if they have a cherished recipe or use the internet to experiment. 

Test your knowledge. Try identifying all the states on a map or listing the presidents. Try to complete the list as a team, or turn it into a friendly competition with the prize of picking the next activity. 

Get personal. Look at family photo albums and share stories or make a family tree poster board. Reminisce about past times together, it can bring up memories that you realize you haven’t yet shared. 

Enjoy some self care. Brushing a loved one’s hair, a hand massage with lotion, or giving a manicure can generate a feeling of closeness. Discuss what types of personal care are relaxing to you and find the best way to enjoy it together. 

Read together. Relax and unwind by reading aloud. Find a good novel, a classic favorite tale or an autobiography of someone you’ve always admired

Arts and crafts. Unleash your imagination by creating a piece of art. Model with playdough, color in a coloring book, or even draw freehand on a blank canvas. 

No matter what activity you choose, indoor bonding can make even the coldest days feel a bit warmer. Use these tips as a reference next time the Illinois weather keeps you inside! 

Diagnosing Alzheimer’s and other dementia

There is no single way to test and officially diagnose Alzheimer’s or dementia. Physicians and physician teams instead use a series of steps and other factors to determine a living diagnosis. Oftentimes these steps can help physicians diagnose a person with dementia, however, they do not always explain the cause. 

Physicians combine the following tools to administer a diagnosis:

  • Reviewing medical history for both the individual and family. This includes psychiatric history and history of behavioral or cognitive changes.
  • Conducting blood tests and brain imaging to rule out other potential causes of dementia symptoms. 
  • Speaking with a family member to learn about changes in skills or behavior. 
  • Conducting cognitive tests as well as neurological examinations. 
  • Brain imaging to detect high levels of beta-amyloid, a hallmark of Alzheimer’s disease. 

Though Alzheimer’s disease is the most common cause of dementia, there are other possible causes. Different symptom patterns often indicate different causes of dementia. Physicians will use the series of tests to try and determine the single or mixed sources of dementia symptoms. The better they understand the sources, the more comprehensively they can design a treatment plan. 

Though no exact test exists for living individuals yet, understanding the process can help you know what to expect when going in to be seen by a physician regarding memory loss. If you aren’t sure where to start, we have resources designed to help you find a provider, understand your diagnosis, and decide how to move forward. Call our 24/7 Helpline for assistance at any stage: 800.272.3900.

For more from our Facts & Figures 2020 Report, click here.

Caregiver Tips: Reducing the Effects of Sundowning

People living with Alzheimer’s or other dementia sometimes have problems sleeping, or behavioral issues that start at dusk and sometimes last through the night. This is known as sundowning, and there are steps you can take to minimize its effects. The changes in their sleep schedule can lead to more behavioral issues, so it’s important to minimize the difficulties as much as possible. Oftentimes sundowning peaks during the middle stages of Alzheimer’s, though it can surface at any stage.

There are some factors to look out for that can exacerbate sundowning:

  • Mental and physical exhaustion 
  • Upset in the “internal body clock”, causing a biological mix up between day and night
  • Shadows due to reduced lighting can cause confusion about what people living with Alzheimer’s are seeing 
  • Inability to separate dreams from reality can cause disorientation

Ways to help reduce effects of sundowning:

Keep a precise schedule. In order to maintain a restful night’s sleep, set times for every meal, bedtime, and waking up. Even working in a timed daily walk or exercise routine can help uphold the day’s structure.

Avoid stimulants. Nicotine, caffeine and alcohol can all affect one’s ability to sleep. Television can also be activating, so turn it off at least an hour before bed and avoid using television during periods of wakefulness during the night.

Be active during the day. Resting most of the day can cause restlessness at night. Discourage late afternoon napping and instead replace afternoons with activities. Puzzles, card games, cooking/baking, looking at family photo albums, reading out loud, or listening to music are all stimulating options to help fill the day. 

Stay mindful of your own exhaustion. Sometimes loved ones living with Alzheimer’s can pick up on your stress and become agitated. Caregivers need to get enough rest at night as well to ensure they can stay energized during the day. 

Keep the home lit in the evening. Shadows and the dark make for unfamiliar and sometimes disorienting settings. Keep the home well lit until it’s time to sleep.

Create a safe and comfortable sleeping environment. Make sure to keep the room at a comfortable temperature. Install the appropriate door and window locks to avoid wandering- door sensors and motion detectors can be used to alert family members if a person is awake and roaming. 

Share your experience and connect. Join ALZConnected, our online support community and message boards. Here you can share your experiences, what did and didn’t work, and hear from others about coping mechanisms or just general support. Join ALZConnected
For more information on caregiving and staying safe during COVID-19, visit here.