This month is Alzheimer's and Brain Awareness Month as recognized by the Alzheimer's Association. The purpose of the month is to highlight the fact that diseases like Alzheimer's and other dementias are significant public health issues that must be discussed and researched. It also brought to mind a friend of Connelly Law who we met in April of 2019. Her name is Patti Barr Hagadorn, age 65, who at that time was writing a column for the Fort Wayne Sentinel, a well-known Indiana newspaper in America's Heartland.
Patti's column was unique. Why? Because she was diagnosed with early-onset dementia (EOD) and used that column to document her descent into this dark world. But shortly after doing this blog on her, she stopped her writing. Plagued by her increased symptoms of EOD and sundowner's syndrome, she no longer had the strength to put her thoughts to paper. But recently, something amazing has happened, and before we discuss this, let's learn more about Patti and EOD.
Early Onset Dementia
In the United States, nearly 6 million people of all ages have Alzheimer’s and even more have other types of dementia. Of this group, 80 percent are 65 and older and less than 200,000 have EOD, as in Patti’s case. The research appears to show a strong genetic component to EOD, traced to rare mutations in three genes. The earlier dementia begins, the more likely it is to be genetic in origin. James Giordano, Ph.D. professor at Georgetown University Medical Center, says inflammation is believed to be what triggers changes in the brain, resulting in EOD diagnosis.
“A high level of inflammation in the body can cause diabetes and/or heart disease, among other things,” he explains. “That same type of inflammation is now believed to induce actions in the brain that lead to dementia symptoms.” There are also other possible causes of EOD including a history of traumatic brain injuries and alcohol abuse.
Some researchers feel that EOD is an extremely aggressive form of the condition while others say the rapid decline is the result of a late diagnosis. In any case, it is a form of dementia that doesn’t get the attention it deserves because of the relatively small number of people who develop it.
Because dementia is usually associated with those over the age of 65, doctors don’t usually consider this as a possibility when a younger person presents with the symptoms. Many medical providers are not trained to diagnose EOD so obtaining an accurate diagnosis for the presenting symptoms can be a long, difficult, and frustrating process.
History of Head Trauma
For Patti, she attributes her EOD to traumatic brain injuries she experienced early in her life. “My first injury was due to my being a silly child thinking I could balance on a narrow ledge,” said Patti. “I fell and hit the back of my head.” But the most serious injury she suffered occurred in 1974, shortly after graduating from high school.
“[It] was on September 17, at 7:17 pm. It happened at the corner of Clinton and Pontiac Streets [in Fort Wayne]. A drunk driver ran a red light and the car I was in had no seat belts. I remember the Jaws of Life cutting me out of the wreckage,” Patti stated. “I spent 11 days in the hospital. I was 18 years old and had just graduated from Snider High School.”
Upon being released from the hospital, the family thought that she had fully recovered, but her on 19th birthday, she had a seizure and ended up on a cocktail of anti-seizure medications that she said worked “fairly well”, but the injury and the treatment she was receiving presented with other obstacles as she tried to live an otherwise normal life.
She met and married her husband, Jim Hagadorn, and like any other couple, they planned to start a family but then came a warning from her medical providers. “My doctor said conceiving a child would be difficult; the medicine could possibly affect the baby,” said Patti. “I did manage to get pregnant, only to lose our little boy, Christopher, in my fourth month.”
“We managed to carry two daughters to term but with much difficulty. Jamie is now 39 years old and married to a wonderful man named Chris. Amy is 34 and has cerebral palsy.”
When EOD Struck
When she reached her mid-fifties, Patti’s health began to change dramatically. She started having severe and repeated episodes of forgetfulness that her family doctor could not explain, so he referred her to a specialist. After a series of tests, she received a stunning diagnosis – EOD. Since that time, the entire family has been forced to make life-changing adjustments, including her husband Jim leaving a 42-year factory job in order to assist Patti on a full-time basis.
Patti’s decline has been slow, and the co-occurring diagnosis of Sundowner’s Syndrome, a neurological phenomenon associated with increased confusion and restlessness in patients with dementia when daylight wanes, has compounded the problem. Because of this, she needs to get to her bedroom quickly and turn the lights on or suffer bouts of confusion, agitation, and delusions.
In an interview with Barb Seiminski, a freelance contributor to Today’s Catholic, a newspaper that serves the Diocese of Fort Wayne-South Bend, Indiana, the couple shared many thoughts on the diagnosis and the future. “Each day Patti wakes up hoping to remember everybody and what is going on,” said Jim, adding that they will celebrate 41 years of marriage this year.
Every day seems to bring new struggles for the couple, who are still trying to be strong in coping with the progressing illness, Jim admitted. “I still cannot comprehend what is happening to Patti, but the blessing in all of this has brought each of us much closer to God, whom we rely on more and more.”
“I remember the good old days, but I cannot remember my address, my husband's middle name, what I ate, and where I live. The list is long but not my stamina,” shared Patti.
“The bathroom confuses me. Dressing confuses me, counting money and signing papers are a no-no. They tell me Jamie's wedding was beautiful. I do not remember. I am a retired florist and did the flowers, but I could not recognize my work in the pictures. This disease is terrifying to all who are affected. I watch my family members' faces as I struggle to speak. They always say, ‘take your time', but time is not exactly on my side these days.”
The Newspaper Column
As stated earlier, Patti has decided to battle dementia in a unique way by penning a newspaper column for the Sentinel in which she journaled the ongoing changes that were happening to her. Her columns were humorous and inspirational. In one column, she provided some especially poignant thoughts after looking at pictures from her childhood and the "good times" with her grandparents.
“Sometimes I re-live those days. I can still smell the sheets and blankets kept in a chest by the side of her home. A door that was never locked by the way. I remember snuggling into the makeshift bed awaiting the next day’s fun. Then 2 o’clock in the morning would roll around and I would have to give up dreams to take my baby sister home. She needed her bed, her blankie, and her familiar surroundings. Not me! I was bound and determined to pump water, play games, and drain Grandpa Mel’s beer bottles. I also ate dog food they kept in a barrel in the kitchen. Perhaps if Grandpa would have let Peggy (my sister) drain the last tiny bit of beer we would have all gotten a good night’s sleep.”
Seems like a memory that any of us would have and enjoy, but for Patti, memories like that were disappearing quickly. She wrapped up that column by writing, “Thank you, God, for one more column. Lot’s of neato keen love from a happy-go-lucky person with a slight memory problem.”
The Costs of Dementia
Alzheimer’s and any form of dementia is a heartbreaking diagnosis, but EOD is especially insidious. When a diagnosis is made for someone over the age of 65, they may have someone home to help them or qualify for services through Medicare. But not so for those who are younger.
“EOD has many consequences that those who develop dementia over the age of 65 may not face, such as in Patti’s situation,” said Attorney RJ Connelly III. “Because most who begin experiencing these symptoms are still working, the inability to perform the tasks they once did may be viewed in a different light by employers and co-workers, resulting in someone losing their job or just quitting because of embarrassment. When this happens, they lose benefits and health insurance, things they so desperately need as the disease progresses.”
“The medical costs associated with this diagnosis are staggering. For instance, those with a disabling cognitive impairment were four times more likely than those of the same age with normal cognitive status to have been hospitalized in the previous two years,” continued Connelly. “Their out-of-pocket costs for medications were four times higher, and they were two times more likely to have received medical home health care. Without insurance, their life savings and retirement accounts are depleted rapidly.”
"Data also shows that just a third of those aged 55-64 with such a cognitive impairment receive social security disability payments (SSDI), something they paid into during their working years. Some people who apply for SSDI have been denied because they do not fit the 'disability requirement' and one client I have worked with was denied twice and told that as their cognitive abilities declined, they could be 'retrained'", said Connelly.
Although families usually provide care at home for as long as possible for people of any age with dementia, most people require nursing home care in the late stage of the illness. Some use assisted living and other paid long-term care services, such as adult daycare, respite care, and in-home personal care, at various times in their illness. And a problem exists here as well.
“When we talk to individuals who have EOD, they tell us that they feel ‘out of place’ and feel they do not ‘fit in’ with the services provided,” stated Connelly. “They say it would be a huge benefit to them to meet other people and families struggling with this type of dementia, but it seems such resources are sparse. They also say they would benefit from transportation services and help with school-age children who are still at home, services that do exist for other medical conditions.”
For those who provide care, training to address EOD is not generally available due to the lack of information on this type of dementia. Continued research is offering more clues into this condition, and given the rapidly aging nation, there is a need for more training and services for those with EOD and all types of dementia.
A Return to Writing
Now let's talk about that amazing development. After over a year of not writing, a serious family illness pushed Patti back to documenting her thoughts and feelings. A recent illness that affected her daughter and her frustration with what she was witnessing in our society pushed her to provide us once again with more insight into her thoughts. On Wednesday, June 16, I received a message that Patti had penned her first article in quite some time. Her husband, Jim sent it to me and I want to share it in our blog -- not just for Patti, but for all those who are on a shared journey with her.
My name is Patti A. Hagadorn. I am married to the love of my life, Jim, and have been for forty-plus years. We have two daughters, Jamie Covey and Amy Hagadorn. Jamie is also married to a wonderful fellow by the name of Chris. Amy is still living at home. ( She has cerebral palsy). This is a little bit about our family.
I am writing this because this is how I deal with my feelings. I am a sixty-five-year-old woman with early-onset dementia. In 1974 a man who had been drinking ran a red light and after a whole lot of seizures and a teeny weenie diagnosis of this disease, here I am. Terrified of tomorrow, the next hour, the next minute, the next second.
As a family, we thought that we were dealing pretty well considering all that we have read and been told by my wonderful doctors. I could not tolerate Aricept or Namenda so we have been winging it..so to speak. Then one day I woke up and my family is barely speaking to me! I am perplexed as to why?
After a very frosty good morning by my husband, I get up the courage to ask him what in the world is wrong? Jim starts to recall the details of the night before and it seems as if I turn into a screaming banshee at sundown! Thus another new diagnosis of
Jim did a pretty good job at first trying to make sure that I was home and in my familiar surroundings. Then it all starts to change. The comfortable world I was snuggling into came crashing down!
I see people wearing masks, there is no good news on television. People dying every day by the hundreds. So many that funeral homes could not keep up or let families say a proper goodbye! My son-in-law is a nurse. Every shift he had I prayed for him. Then we would pray as a family that this horrible, horrible time in our world would soon end. Just going to the store shook me to my core. I did not think it could ever get worse. But I was going to find out just how wrong I was.
Our oldest, Jamie, has been unwell for a very long time (The details I won't share). She had gotten an infection and was taking medications to control it. On a Monday morning, Chris woke up a found Jamie on their Kitchen floor. After some time in ICU Jamie was sent home.
On a Monday, after Chris had left for the hospital, I tried calling Jamie. She did not answer which is not like her. But as the hours went by, we continued to call [and] text. Still nothing. Jim decided we had better stop by their home and we noticed her pet ducks had not been fed! Alana, her sweet neighbor pounded on her door, and still no answer. Frantic with worry Alana called 911 and we raced home to get a set of keys. We pulled up just as the EMS and police arrived.
The police would not let Jim in and at that moment, I knew, I just knew, something terrible had happened. We were able to get in and see her as they were getting ready to transport her to the hospital. Because of Covid, only one person at a time. I sat in the waiting room, frightened, alone with my thoughts. Finally, a tech said that I could be with her. She was on a Bypass machine, unresponsive. I just sat there with Jamie and made the usual bargain with God, (let it be me).
Her doctor came in and looked me in the eye and said, “Mom, You are a hero! Fifteen minutes later I don’t know that your daughter would have made it”! It was well into what we call “MOM’S CRAZY TIME”. I vaguely remember letting a sob come out of my mouth that did not even resemble a human being. It was a guttural sound coming from somewhere in my body that made me shake and sob uncontrollably! The doctor was truly amazing. Even though she could have actual contact with me, the look in her eyes told me that she understood. For that I am grateful.
As to the fear I have now, it’s not any better. I am a believer in God and his miracles. I am a believer in prayer. I am a believer that all things happen for a reason. I have dear friends and family pray for me daily. My husband reads me scriptures each night. We have a king-size bed and we do what we like to call, “The Hagadorn Prayer Huddle". We lock arms and pray. Amy then goes to her room and then Jim tries to help me by reading God’s words.
My friends are well-meaning. They think that if I just lay this at God's feet and leave it there that I will be fine. But each new day brings this foreboding fear that will not leave. I have no control, none. It just stays inside me until I feel as if I could explode! My dementia is leading us into uncharted territories now. Even though Jamie is on the upswing and the global pandemic is taking a turn in the right direction, I, like so many other people who have this disease, am left trying to deal with the fallout.
I will never stop praying, I will never stop hoping! With a little luck, maybe this is one thing I will forget!
Let's hope this is just the first of many articles to come for Patti and all of us at Connelly Law wish the Hagadorn family the best.