Some Gifts In Life Are Wrapped In Very Strange Packages
Lessons Taught & Shared
Lori La Bey’s mother, Dorothy was a constant in her life. She taught her many wonderful life lessons throughout her life. Her mother was a stay-at-home mom when her children were young. She was active in her community; Church, School, Girl Scouts, Boy Scouts, and more. Dorothy was an active hockey mom and loved her various circles of friends. She took great pride in being a community partner. She lived a life feeling purposeful, and caring for her family and others. Holidays, birthdays, and vacations were always made special.
Dorothy loved nature and brought her kids to explore the woods and the beaches. Every summer they would create a zoo and the neighborhood kids loved it. If there was a sick puppy, abandoned animal, or stray cat; our house was considered the neighborhood hospital. We always had a shoebox and an eyedropper in reserve for the next patient in need of care.
The Mother Behind The Movement
Lori remembers her home being the hangout house. Everyone was welcome and always felt safe and cared for no matter what their age. As an adult, several friends told her how much they appreciated both her parents, some wishing they would have been their parents. Funny, back in those days’ families kept their lives private, and as a child herself, Lori didn’t realize other homes were having issues. She knew she was lucky to have a stable home environment. As she grew up, she appreciated more and more the openness and compassion her mother had for others. Her listening ear, a warm hug, and the feeling of safety and protection she gave freely was incredible.
A fighter for the underdog was another aspect of Lori’s mother she didn’t truly understand until she was older. The power and importance of her mother’s compassion became more and more evident. She stood strong with her beliefs, like valuing helping others in need to learn that one receives more back when assisting others.
Lori’s mom was big on her children feeling empowered by earning their own money and being responsible with it. Her mother brought Lori and her siblings to wakes and funerals even when her friends disapproved. Dorothy wanted her children to appreciate life and understand death is normal and nothing to be afraid of. She taught this lesson until she took her last breath.
The Ding Dong Lady
As Dorothy’s children got older, she entered the workforce selling Avon part-time. She labeled herself the “Ding Dong Lady” and loved selling, always having fun. Lori remembers her mom painting her fingernails and toenails all different colors in the summer so her clients could see the nail polish colors. Her customers loved her mother.
Dorothy made them laugh and left them intrigued. Her kids would help put orders together and deliver them; teaching the importance of having a work ethic and working as a team. Management offered her mom a directorship, due to her sales ability; but she turned it down as she didn’t want to be pulled away from her family that much.
Later, when her children were older, Dorothy took a full-time job doing clerical work. This is when her mom started noticing disturbing symptoms in her mid-fifties when she didn’t feel comfortable doing routine things she had always done. She started pulling back socially. At her last job, before retiring she created a three-ring binder of how to do her job, in case she would get stuck. She was so fearful of losing her job. Lori said it was awful to watch.
Slipping Abilities - Misdiagnosis
Dorothy brought up her concerns about her slipping abilities. Her doctor just brushed it off as menopause; even though Lori’s mother repeatedly said, “That’s not my girlfriend's menopause!” Back in those days, their family didn’t know what they were dealing with and neither did her doctor.
Christmas Gone Awry
After a concerning event Christmas shopping where Lori’s mom sat on benches in the mall and wouldn’t enter stores, the family decide to push for further testing. You see, the standard joke was Dorothy could be given a shopping list and get anything on a list blindfolded, but not this time.
Lori’s father asked her to call the doctor and inform him of the incident. She was tossed to the nurse who didn’t want to talk to her. Lori pushed the nurse and told her she knew HIPPA laws. The nurse could not give Lori any information, but she could listen and relay the information to the doctor.
Lori told the nurse the details of the incident and reminded her that her mother was just in to see the doctor and again her mother asked the doctor to check into her symptoms, but he didn’t.
Lori relayed to the nurse that her mother was concerned she had Alzheimer’s disease, which was very strange as back then no one talked about any form of dementia. She had suggested the doctor ask her mother to come back in for some tests. The doctor could say he just learned about some testing to assist with diagnosing mom's symptoms, but no, that’s not what happened.
Incompetent, Ignorant, & Downright Dangerous
Instead, the nurse called her mother the next day saying her family thought she had Alzheimer’s disease, which is not what Lori stated at all. Her mother was hysterical and when her father got home, she locked herself in the bathroom threatening to kill herself. Dorothy was devastated and scared. Lori’s dad who could always handle any situation called Lori for backup. He needed support and he needed it now.
Lori canceled her appointments and rushed over. She immediately called the doctor’s office to learn what was said to her mother and couldn’t believe what the nurse told her mom. She had no regard for her mother's fragile state and had no regard for the damage her message would cause, and the seriousness of the situation. It took Lori two hours to get her mother out of the bathroom. The whole situation was horrible. The family had to wait about two months to get an appointment for testing.
Sometimes A Good Day Can Mess Things Up
By this time, Lori’s mom was telling time by what was on TV. Channel four became her clock.
She was having trouble using the vacuum cleaner, washer, dryer, stove, and even the phone; to name a few things. Yet the test the doctor chose was the ten-question test. One even the family knew was not in-depth enough. On the day of the test, her mom had a good day and passed with flying colors, There was no further investigation as to why her mother was having so many issues with time and common tasks she had always done.
Sorry to say, as far as healthcare has come in the past four decades; most people still struggle to get a diagnosis of dementia and most families don’t know that the majority of doctors are not trained in this area. Families need to see a neurologist specializing in dementia.
Appropriate Testing Is Critical
It wasn’t for another ten years before an actual battery of tests was completed on Dorothy as Lori’s mom refused to go back to the doctor. By then Lori’s parents had moved up their lake home two and a half hours out of town. Her father had been diagnosed with brain cancer and her mother’s symptoms had progressed. Dorothy had totally pulled back from social activities unless it was a small circle of long-time friends; most of which knew something was wrong and usually her father or Lori was present.
This time like the last time, the family had to wait a few months to get in for the two-half days of testing for her mother. The tests were so upsetting for Lori’s mother as she couldn’t complete the tasks. Her mom was exhausted like a wet noodle; limp unsure what lay ahead. A written report of the evaluation was delivered by mail. Not even a consultation! It read, Dorothy has the mentality of a three-year-old. She most likely has Alzheimer’s disease. Don’t let her out of your site. The whole family was devastated, unsure what that even meant or where to go for help.
Finally, A Doctor That Understands
Thank God Lori’s parent's primary physician retired after forty years. This opened the door to securing a new doctor. A better doctor.
They got lucky using the same primary doctor her father was assigned.
Dr. Abid was wonderful. He was compassionate, and more knowledgeable, even though still extremely limited due to being so long ago. He was passionate about his work. He understood the realities of the effects of dementia on the person diagnosed and the family.
Lori said she will never forget the doctor's name, and gives Dr. Abid a shout-out anytime she can. In fact, she was able to meet with him in 2021 and got a chance to thank him for all he did for her family.
As Lori’s mother’s dementia progressed, so did her father’s cancer. The family convinced her parents to get an apartment back in town for safety reasons for the winter. Eventually, her parents couldn’t travel on their own up to the lake anymore and so Lori would make sure they were able to get up there often. They enjoyed their lake home immensely.
A Critical Fall Brings Clarity
Lori’s father ended up having to move into a nursing home after falling two flights of steps. Her mother moved in with Lori and her family which was the plan, but after a couple of weeks, things changed again.
Dorothy had a moment of clarity and asked to move to the nursing home. Lori asked why. Her mom responded referring to her father saying, “We’ve been together 49 ½ years and I’m not leaving him now.”
WOW, what clarity her mother had!
Keep in mind, at this time in her life, Dorothy couldn’t look out the window and know if she should wear her snow boots or flip flops; yet she knew she was married to a man she adored and that she wanted to be there for him, especial when he was sick.
Advocating For Mom
Lori made the move happen but didn’t go along with the nursing home's suggestion of moving her mom into her dad’s room. She knew her parents were two peas in a pod and that her mom would die of loneliness once her dad passed, so she requested her mother move to the most social unit as she loved activity but just wasn’t able to engage the way she used to.
Lori wanted her mom to have one meal and to participate in one activity on her floor each day the rest of the time, Lori would bring her up to be with her dad. Lori was grateful to be self-employed and have the flexibility to accommodate this, as it made all the difference in the world to her parents and herself.
A few months later her father passed away and her mom was acclimated to her new environment but continued to teach Lori multiple life lessons throughout her journey with dementia. Her mother lived at the nursing home for fourteen years.
Lori believes her mom's story should be a book or a film sharing the fear, frustration, stigma, beauty, passion, and love wrapped in the strange package of dementia.
Are you interested in learning more about the mother behind the movement?
Lori La Bey is a change agent shifting dementia care around the world.
Just ask Oprah, Maria Shriver, Sharecare, AARP MN, or The National Institute for Dementia Education who have recognized her cutting-edge approach to dementia care.
Lori's mother lived with dementia for thirty years, so you can be comforted knowing she truly understands the needs of those diagnosed, their families, and the professionals who care for them.
Lori La Bey was named "Health Hero & Alzheimer's Empath" by O Magazine.