Long Distance Caring and COVID-19

Mother-daughter bonds are often described as a connection like no other.  This is especially true for my mom (Terri Mitchell) and me.  I am an only child who was raised in a, now rare, two-parent household.  My dad (Brad Mitchell) often worked long overtime hours to help support our small family and to ensure we never went without.  My father’s long hours at work naturally provided more quality time between my mom and me, and this helped further develop and strengthen our bond.  Like it may happen with many younger mothers, mom and I have been compared more often as sisters.  I have also at times been asked if I was more the parent than she was.  While growing up, little did I know that this may have been a premonition of what was to come. 

My relationship with my mother continued to strengthen as I graduated high school, college, and then through a move to Texas, far away from all my friends and family to complete a graduate degree.  To my surprise, my parents’ social lives seemingly flourished after I moved away (insert the shock and awe of an only child here).  But the distance over the past 20 years has in no way hindered our relationship and probably further encouraged increased communication via calls, texts, now FaceTime, and visits back and forth for special occasions…or just because we miss each other.  Approximately around 2014, after my dad had already been retired for several years, my parents bought a house in the next town.  The goal was for mom to commute while she continued to work two more years until her own retirement.  Suddenly, and seemingly out of nowhere, we were notified that she was making mistakes in her job on tasks that she could have done with her eyes closed after so many years at the same company in the same job–such as forgetting how to make copies on the printer, make coffee, etc.  Unfortunately, it took nearly two years to find the correct diagnosis: Dementia!  She was too young—only 58!  She had already lost her job and began going to multiple doctor appointments, testing, and getting evaluations to try to rule things out and narrow it down to something that is meant for “old people.”  My grandparents were nearing their 80s at that time, and they were in better mental health than their youngest daughter. 

I am a social worker in the medical field and have a baseline understanding and experience with Dementia and Alzheimer’s.  But this is my mom.  My best friend in the world.  She was only 58 years old.  I have not been blessed with children, and even with medical experience, irrationally questioned whether these lacking extended familial connections, support, and incentive to help her “stay young” had impacted the potential progression of this ugly disease.  It made me question everything.  What could we have done differently?  Could we have helped her do anything differently?  Could we have prevented or changed this in any way? 

As things progressed with mom, my dad stepped up and stepped into the role of caregiver.  He graciously credits both the education and emotional support provided by the Alzheimer’s Association throughout this unexpected journey.  My parents have been together since Junior High School. October 2020 marks their 45th wedding anniversary.  It does not take a medical study to prove men are not normally caregivers by nature, but my dad did it.  He did it for about six years—becoming more of a parent, caretaker, and babysitter than a husband.  He did it with minimal assistance from me or anyone else.  As an only child, and female child…I struggled for years with the fact that I could not be there on a regular daily basis to help care for my parents who sacrificed so much for me and our little family.  For years, we discussed them moving closer to me to be in San Antonio, Texas, a sprawling metropolis with more resources at hand than their small rural town in Litchfield, Illinois.  But they were born and raised in Carlinville.  It is what they know.  It is where everyone they know is. 

Caregiving takes a toll that no one other than other caregivers can understand.  Even maintaining daily contact (sometimes talking even several times per day) with my mom and dad is just not the same as being there–providing extra relief, supervision, and support.  Mom was finally admitted into a memory care facility this Valentine’s Day.  Call it women’s intuition, but I knew dad was at a breaking point and I could hear the fear in his voice.  I flew home immediately.  There is something about that mother-daughter bond that provides a sense of comfort and love without requiring words.  Just each other’s presence is enough.  Dad and I worked with mom to help her pick out new furniture and decorations for her “new apartment,” which is luckily only one mile from their house.  The facility kindly let me sleep with her those first few nights to help her adjust with me there, slumber party style.  Only it wasn’t the fun kind of slumber party that both starts and ends on a good note.  I flew back home devastated because this is what it had come to but I knew and understood that neither dad nor I could safely care for her at home without constant help or support.  What loving child can put a parent “away?!?”  But I was reassured by the fact that dad is practically next door, and he has not wavered in his constant devotion and caregiving for mom.  I also knew that mom has always been a friendly, fun loving, outgoing presence in any room, so she is loved by so many–I knew she would continue to have visitors and ongoing support from friends and extended family. 

But this is 2020.  Barely one month later, the COVID-19 lockdown hit as the pandemic spread.  As I write this, it has been 8 months since mom was admitted into the memory care facility.  Any other year, I would have flown home several times to visit.  Now, Thanksgiving is canceled and probably Christmas, as she will not be allowed in/out until there is a vaccine.  Mom forgets things, such as how to turn on her TV, change the channel, charge her cell phone, how to shower, what clothes to wear…but I am very grateful she still has the ability at this time to call and FaceTime (with some assistance).  But to get those calls any hour of the day or night of her crying, feeling alone and trapped are unbearable.  I want to fly home, walk her out, and bring her home with me to live happily ever after.  But this disease will not allow it.  There is no fairy tale ending with this disease.  But all challenges aside, my family and I discuss our blessings constantly.  At this time, we are lucky to be able to have her at Copper Creek Cottages in Litchfield, where they provide specialized memory care for those with Alzheimer’s & Dementia.  But even in good hands, we don’t have my mom.  “They are wasting our time!” My mom said this about us losing time together because of the COVID-19 increase.  Even she realizes how vital it is for people to wear a mask, wash their hands, and social distance. She doesn’t understand why it is so hard for so many to do such simple things.

She is my best friend on earth and I am literally being robbed of the precious, limited time I have with her.  This is not just time we will not get back, but it is time that we are missing of her…with her…her personality, her memories she has, making new memories (for us!), etc.  I miss my mom.  For now, we will continue to talk on the phone at every possible opportunity, see each other on FaceTime (because it is better than nothing), and hopefully (praying as I type this) we will not only be able to simply see each other again in person—but be able to hug, go shopping, spend time with our family, or even just sit and watch TV together.  Time with my mom is time with my mom.  So, I will continue grasping onto whatever I can as long as I can.  And God bless my dad, extended family, her caregivers, and all our guardian angels (her parents included).

To Be or Not To Be (A Caregiver): It Is Not An Option

Six years ago, my wife was diagnosed with Early Onset Alzheimer’s. 

Like everyone else who is faced with a family crisis, we had no choice but to embrace the news and figure out how to deal with it.  My wife, Eva, and I have two children.  At the time of her diagnosis our son, Jonathan, was a sophomore in college and our daughter, Leda, was a senior in high school.  While we are a strong family, the truth is that everyone needed to process the diagnosis themselves, in their own way.  And the ways in which we did this were not only surprising, but inspirational.

We all went through the many stages of grief, but as we each came through the final stage, we responded in different ways.  After a few months of reluctantly coming to grips with Eva’s illness, we finally accepted it and started looking for ways to help and support each other while we figured out how best to deal with the situation.  I adopted the motto “Today is the best day of our life” because I knew we needed to celebrate everyday while never losing sight of the reckless abandon and relentless impact the disease would have on my wife.

My daughter was living at home when my wife was first diagnosed and I think the situation was particularly hard on her.  When she left for college, she knew that I was being left alone to care for my wife and that she could only provide support from a thousand miles away.  I am fortunate to have smart, industrious children and my daughter put her energy at school toward finding a way to provide “support from afar.”

This ultimately led her to apply to a program on entrepreneurship at her school, Colgate University.  She was accepted into the program, which turned out to be a turning point in her life.  Leda saw the challenges that I was having as a caregiver and she started thinking about new ways she could help.  Ultimately, she identified that there was a significant amount of technology in the marketplace that could help a caregiver, but it was not easy to find.  So, she embarked on a journey to create a company to help caregivers find technological solutions that allowed them to be better caregivers; and her company Alz You Need was born.

Over the next five years, my daughter took this simple concept and turned it into a viable company that helped caregivers identify their biggest challenges, and then make them aware of technology-based solutions that could help them.  These solutions included readily available items like Key Finders, to new technology like Bluetooth driven prescription bottles that remind you when it is time to give medication, to online meditation apps and virtual companions.  Along the way, because of her youthful approach to problem solving for senior care issues, she became recognized as an opinion leader within the assisted living community and was regularly asked to speak at national conferences. And in 2018 she was voted as one of the top people under the age of 40 who were making revolutionary contributions to the senior care industry

Aside from the pride that I felt as a parent watching their child excel, I had the opportunity to serve as a testing site for many of the products.  Some of the products worked well for me, and others didn’t, but through trial and error I found the right mix of products to help me become a better caregiver; providing better care to both my wife and myself as a caregiver.

My son, Jonathan, on the other hand became my sounding board and the voice of reason on my shoulder who held me accountable to accept the reality of our situation.  I believe that as a caregiver for a loved one, we slowly become accustomed to the unthinkable as we normalize and deal with the reality of day-to-day care.  Jonathan took on the responsibility of getting me to accept reality and internalize what my wife needed from an outside perspective.

Fast forward six years and we are still caring for my wife.  It has gotten harder, and we are at a point where Eva needs more support than I am capable of providing her.  But while her situation is nothing short of awful, it has been rewarding to see how my kids have responded to their mother’s condition and how they have embraced a bad situation and risen above it to create opportunity and grow as individuals.

No one promises us that life will be fair, but as with any negative situation a significant amount of “good” shines through the bad and I personally believe we have an obligation to our loved ones to get past the pain and focus on these positive outcomes.  Laughing at a time of ultimate sadness can be a first step to honoring the life, love and sacrifices of our loved one and honoring ourselves for the sacrifices we have made. 

Through this journey I have learned that “caregiving” is not just about physical care, but it is also about moral support for me, my wife and my family.  And it is about making sure that the legacy of my wife and her boundless optimism don’t get lost in the day-to-day events forced upon us as we travel on this journey with her.

So our situation is clearly a sad story, although it is far from unique, but it is also a positive story that demonstrates that the whole (our family, friends and organizations like the Alzheimer’s Association) is stronger than each of us individually.  And this is so important because caring for a loved one is a sad and, more importantly, a lonely journey no matter how much help you have.  My kids have shown me that even with all the sadness we have the ability to not just make a bad situation tolerable, but to turn it into a springboard to create positive change and positive memories.  My wife and my kids are my heroes and for that I am so very lucky.

Reason to Hope Co-Chair: Marty Wilke

My relationship with the Alzheimer’s Association began in 2010. I was invited to attend the very first Reason to Hope luncheon in Chicago, honoring WGN Radio legend, Wally Phillips and his family.  At the time, I was the General Manager of WGN-TV and attended as both a representative of the WGN/Tribune family and my own family – as my Dad, Cliff had already been diagnosed with Alzheimer’s. This Reason to Hope luncheon was where I first learned of the critical mission of the Alzheimer’s Association and how they were working to provide resources, education and hope to families affected by Alzheimer’s and dementia.  I left that very first Reason to Hope luncheon newly inspired and hopeful for the future, for families like mine.

I was also impressed by the overall effectiveness and efficiency of the luncheon – in just one hour, Reason to Hope had changed my view of Alzheimer’s and inspired me to become a bigger part of the mission.  I knew immediately that Reason To Hope was an event and an experience that I wanted to share with others in order to do my part to help raise awareness for Alzheimer’s. 

In 2011, I became a Reason to Hope Table Host and invited friends and family to join me. The following year, 2012, I chaired the Reason to Hope Chicago luncheon and shared my Dad’s story with the Reason to Hope community. I have and will continue to support Reason to Hope through the years as a Table Host.  Last year in 2019 and now again in 2020, I am proud to be Co-Chair of the Reason to Hope Chicago luncheon.

The first time I attended Reason to Hope it was clear that I was now a part of a bigger community through the Alzheimer’s Association. Through the years I have seen Reason to Hope grow through the dedication and expanding roster of Reason to Hope Table Hosts.

When our Table Hosts invite their friends, family, co-workers, colleagues – they help create and grow this community within Reason To Hope – a community that shares the common goal of a world without Alzheimer’s.

In addition to Reason to Hope, I have embarked on several other endeavors as a part of my fight against Alzheimer’s. I have participated in the Walk to End Alzheimer’s in Chicago with my family in honor of my Dad and his caregivers.  I also participated in the Alzheimer’s Association family forum education program, and caregiver support groups. As a representative of the Illinois Broadcasters Association I have partnered with the Alzheimer’s Association to promote the Silver Search program to protect endangered missing persons through a state wide awareness campaign.  I currently serve on the Silver Search Task Force and have most recently joined Illinois Women Conquer ALZ.

What gives me a reason to hope is the mission and strategy of the Alzheimer’s Association. As the world’s leading voluntary health organization, funding Alzheimer’s care, support, advocacy and research gives me HOPE!

I have benefited from the Alzheimer’s Association mission, I have embraced the mission, and will continue to participate in the mission by raising awareness and funds to help achieve the goal of a world without Alzheimer’s!

If you want to become a part of the fight against Alzheimer’s, join us at our virtual Reason to Hope event on Tuesday, November 10 at 12 p.m. CT! Learn about the mission of the Alzheimer’s Association and embrace the Reason to Hope community. 

Or if you cannot join us this year, go online and donate to the Alzheimer’s Association Reason to Hope.

Register for Reason to Hope

“Hope Shines On”

My name is Deanne Alexander and I am an advocate for the Alzheimer’s Association. My fight to help find a cure started when my mother Jane was formally diagnosed with Alzheimer’s dementia in 2011. This was when my journey through advocacy to help find a cure for Alzheimer’s began.

Volunteering as an advocate gave me the support from others who were navigating through the same difficulties as a result of the disease and the resources to help find solutions. The camaraderie between all of us was so comforting and helped me and my family get through such difficult times.

The Alzheimer’s Association was a Godsend!

Fundraising has always played an important part in my role in the advocacy program. Experiencing the satisfaction of hands-on activities, gives me a tangible connection to the Alzheimer’s Association. Over the years, I have hosted many fundraising events, they fuel my purpose and passion as an advocate. This year I was frustrated with the Covid-19 pandemic restricting the association’s fundraising efforts.  So when my son, an EM doctor, suggested a fundraiser making masks that represented the cause, I was ecstatic! Not only would it be a service to offer these masks for fundraising, but to help protect the surrounding vulnerable population. He has worked non-stop with the horror of Covid-19 pandemic. He cares for the elderly demented population, so sick, confused and frightened, often just dumped into the ER with no outside support. Realizing the importance of the special needs of these patients, his Emergency Room is now in the process of getting Geriatric ED Accreditation.

Now, getting back to the masks, I wholeheartedly jumped in! I custom ordered purple ribbon fabric, and my friend, who was already making masks, kindly offered to sew them. I wanted to add a bit of personal shine to each one, so I hand painting some of the ribbons with a splash of shiny washable purple glaze. I also had to figure out the best way to arrange for easy payment through an e-commence site. Hence, the fundraiser ‘Hope Shines On’ was conceived.

The price of each mask is $15.00, this includes free shipping. There are two different purple ribbon designs and all the profits will go to the Alzheimer’s Association.

‘HOPE for the Cure’ is the light in all of us, it keeps us going when we feel helpless against this horrific disease. You would be amazed at how many people stop me when I am wearing my mask and tell me about how they are personally affected by Alzheimer’s, or asks a question about where they can find help. So, I truly HOPE you will support this fundraiser. Let’s wear our masks proudly, because every day our loved ones are suffering and we should shine bright with the HOPE that #EndAlz will become a reality.

Check it out here: https://www.hopeshineson.net

For my Grandmother

Keefer Schoon began his love for music when he first picked up a guitar, about ten years ago. He was inspired by many rock artists like Jimmy Page, of Led Zeppelin and Richard Wright, of Pink Floyd. Keefer loved the sounds these artists were able to create and immediately wanted to do the same. Page is still an inspiration for him and that is noticeable throughout his album. In the past four years, Keefer became invested in composing and writing progressions on the guitar where he studies music composition at Columbia College in Chicago. Wright is who inspired him to strive for uniqueness in everything he writes and creates. 

Keefer and his grandmother

It was around seven years ago when Keefer’s grandmother was diagnosed with Alzheimer’s. As her condition progressed, he learned more about what may occur. He was fascinated by the hallucinations part of the disease and thought about how he could express that through music. It was not until about last year that Keefer began to construct an album that would fit around the theme of hallucinations caused by Alzheimer’s. He began writing poems that expressed what a senior may go through as their condition with Alzheimer’s progresses. As Keefer educated himself more about Alzheimer’s, it inspired him to make a full-on tribute to his grandmother, Diane Keefer Stith. This album expresses the overall theme of imbalance that goes on in one’s life with Alzheimer’s. Growing up, His grandmother played the piano for him. This is where he got the inspiration for his song, “For You,” so that he is now playing for her instead. 

Keefer’s grandmother passed while he was finishing up the album on August 15th. His album, titled “Entropy,” is available to listen to on all platforms under the alias “DZ Riley.” This album follows the steady decline of a senior experiencing the various stages of Alzheimer’s disease. It is described to be a heart wrenching and equally beautiful experience that explores the psychological and emotional toll the disease has on those affected by it. All proceeds made from this album go towards the Alzheimer’s Association. 

“Entropy” album cover

Follow DZ Riley on FacebookInstagram and Twitter.

Find ‘Entropy’ on Amazon MusicYouTubeiTunes, and Spotify