Written by: Dr. Khalilah Johnson, Executive Contributor
Executive Contributors at Brainz Magazine are handpicked and invited to contribute because of their knowledge and valuable insight within their area of expertise.
“To give at the level necessary, I had to give all of myself to care for her. I had to be in it 100% and in order to do that, I had to let go of me.” I am so honored to have the opportunity to have interviewed Shirley Johnson about her personal journey with Alzheimer's. As June is Alzheimer's and Brain Awareness Month I wanted to share her story in hopes that it will help others who are dealing with similar situations as well as provide a voice for caregivers and family members who might be struggling with this disease on their own.
It's truly an honor to interview you today. Thank you for sharing your inspiring journey with us.
How did you first find out that your mom was suffering from Alzheimer's, and become her caregiver? What were those beginning days like for you?
It was very difficult. My mom was very combative in the beginning and she would strike out at me at given times. I didn't fully understand dementia. I just knew she was no longer able to remember and do a lot of things she used to. It wasn't easy for her to accept the loss of her independence.
Some researchers have referred to Alzheimer’s as the long death because of the 7 transitional stages to grief. Give us an overview of what those stages looked like for you.
It’s very hard to detect the early stages of dementia because memory loss can be a sign of aging. We noticed she would repeat herself a lot or forget how to cook or even care for herself. She would often drive herself somewhere and didn't remember where she was. She would put all her clothes on at one time and you couldn't convince her she wasn't already dressed. She would forget how to use her words or that she had already eaten.
Mom was a vegetarian most of her life and we would be out at a restaurant and she would order a burger. "If you left the door open, she would leave to try to find her way back home.
It wasn't easy to accept the different stages because there were good days and bad days. “One day she would arrive at daycare and be excited; the next she wouldn't know why she was there. Each stage of her decline, I grieved.
Tell us about your mom, who was she before all of this, and what lessons did she teach you?
My mom was an awesome woman! She was my best friend, I could always talk to and depend on her. She called me every day and there was nothing she wouldn't do for me. When I was pregnant, she would wash my clothes, cook, and clean for me. Once she even drove three hours to bring groceries and then drove three hours right back home.
She was on a fixed income but would always offer to pay. Her thing was, “you don’t ever have to be without, I’m here for you.” She lost her mom at three and never wanted anyone to feel alone. She would invite strangers’ home from church for dinner because they looked like they were by themselves. Her love was unconditional, there was no amount of sacrifices she wouldn't make for others. She loved people.
She loved to bake, read, write, and sing. She would walk daily, and most people couldn't keep up with her. She lived a very healthy life: she never drank or smoked. She was a great teacher, and disciplinarian who believed strongly in education and worked hard to make sure her children had opportunities. An exceptional writer. The church would often ask her to write welcome letters, greetings, and tributes, she was a brilliant writer.
"When going through her things we found many personal notes, she would write everything. She wrote about what she was feeling and thoughts about what she was going through, and tons of reminder notes." "After she died, people shared so many stories of how she helped them," from helping people overcome addiction, to illness, to homelessness, all types of stories of selfless acts of love.
What advice would you give to someone in the audience who is currently going through this tough time with their loved one?
Be patient, understanding, and realize that this is not the person you knew. It will hurt when they forget all the memories you shared. Dementia is one of the hardest diseases. You watch them leave you and you can't bring them back.
Play their favorite music, music is known to give comfort. Hug them, love them, care for them as if they're fragile and special.
Educate yourself - I watched videos of other people's stories on YouTube. The Alzheimer's Association and the Department of Aging were great resources. I switched her doctor to a geriatric doctor, who specializes in Alzheimer's and they were very good at finding resources.
Join support groups, go to meetings, go to conferences, and stay connected to the community.
Get support and counseling. When you're a caregiver of someone with Alzheimer's, you feel like you're by yourself and nobody understands. It helped me when I was able to talk to a friend who cared for her mom because I knew she understood. Caregivers are known to decline during and after, so make sure to take time to care for yourself.
What did you learn about yourself from the event of your mother's diagnosis?
I learned through this who she was, although that may sound crazy. I learned how much we were alike. I looked at all the many things she had written, and it helped me to see myself. I was able to see my own selfishness. To take care of someone else, it takes great sacrifice. In the beginning, I didn't want to make them.
I had to work through anger and frustration, blaming her for allowing this to happen. It's a process of growth, learning, and self-examination. We are not naturally forgiving or unconditionally loving people. We must become what she was.
Her whole journey forced me to move forward. It forced me to face my own demons. "It made me see my ugly and unpleasant attitudes." To give at the level necessary, I had to give all of myself to care for her. I had to be in it 100% and in order to do that, I had to let go of myself.
And if I was asked, I would do it again, because I wouldn't miss out on this journey I had with her. As the best parts of her died, so did the worst parts of me. Every time another version of her left, a new version of me appeared. In life, it can be easier to avoid dealing with difficult things and not dealing with our pain but with Alzheimer's, you don't have a choice.
"You don't get to say, this is too much for me. You must deal with whatever happens at that moment."
"There are so many decisions to be made, like what does she need right now. What to do about her healthcare or does she need a hug."
"I had to study her because she couldn't communicate. It was like having a newborn baby, you must figure out what their movements and cries mean."
Thank you so much for sharing your powerful story of selflessness. What’s even more amazing is that at 61 years old as a caregiver you not only held down a full-time job you also graduated with honors with your B.A. in Social Work. You are truly inspiring.
Tell us more about that and what’s next for you?
When I decided to go back to school for social work my original reason was, I wanted to help young people. I realized they needed guidance, mentoring, and support. When I became a caregiver, I also realized there wasn't enough support for our seniors. So, I changed my direction and started taking classes in aging. I began to learn how our seniors are neglected and how badly they're treated. It's sad because they took care of us, but a lot of children will walk away because they can't handle it. Our seniors are like infants, they retreat.
It’s amazing that while being a caregiver for my mom, I was even able to graduate at all and to graduate with honors while maintaining straight A's in the beginning, working a full-time job and an internship was God's grace. I had to find people to watch her so I could go to class.
I believe I inherited my faith and resilience from my mom. It's funny because my mom would always say, "I would be the one to take care of her." She was so strong, and everyone leaned on her and she was always there. I decided to retire when my mom went into hospice, because she needed to be taken care of 24/7 and was confined home. Prior to that, I was in a master's program, so my plan is to finish.
For now, I'm adjusting. It takes some getting used to realize I'm free to go about the country as I want. When I was caring for her, even going to the store was hard. Today, I'm still grieving and changing my routines. It's been 5 months but sometimes I still look at the monitor to check in on her before realizing she's not there anymore.
My emotions are a mixture of peace, sadness, and celebration because of who she was. When I think of her it makes me smile and feel grateful. I’m at peace because I know she's no longer suffering. In the end, the hardest part was when she stopped smiling.
Sometimes she did nothing else, but I would go in her room and she would smile and that would be enough to get me through the day. My goal is to finish school, take vacations, and enjoy what opportunities life brings—unafraid.
I can't imagine how difficult it must be to care for a loved one with Alzheimer's and Dementia.
What are the most important lessons you learned from your mom?
Being there and being kind is so often enough. She would sometimes become agitated, but if I went in her room and said, “Hi Mom” then gave her a hug, that was all it took for me to see her smile again."
On behalf of Brainz Magazine, we want to thank Shirley Johnson who has shared her story about caring for her mother diagnosed with Alzheimer's before transitioning this past December. We hope that those living through similar struggles will find comfort in Ms. Johnson's words.
Dr. Khalilah Johnson, Executive Contributor Brainz Magazine
Dr. Khalilah Johnson, is an Executive Coach, Communication Architect, and Trauma & Resilience Expert with a multi-generational trauma history. After years of suffering severe trauma starting as early as adolescence, she struggled with deep depression, sleep deprivation, and detrimental memory loss; leading to her being diagnosed as permanently disabled. She went from being locked inside of her own mind and limited in speech, to today, being an award-winning powerful Inspirational Keynote Speaker, International Best-selling Author. She is the CEO of Redefined Unlimited Executive Coaching Firm, Brazen Nation Media Digital Marketing Agency, and Power After Trauma LLC. In pursuit of a breakthrough for herself and others, Dr. Johnson, is now a distinguished member of the American Academy of Experts in Traumatic Stress, in collaboration with the National Center for Crisis Management, and a Licensed Interfaith Chaplain. Her professional training includes over 40 specialists’ certifications in the areas of holistic healing, psychology, trauma, marketing, and business. Dr. Johnson teaches the same methodology she used to break free from a life sentence of a disabling, mental, and emotional prison, through her signature program, UNPACK 2 IMPACT; The 5 E’s of Effective Generational Transformation. In this program, she has taught students that span over 97 countries, how to clear blockages of limiting beliefs, identify, and break intergenerational trauma patterns, turn purpose into profit and go from invisible to influential. Her story has inspired millions globally and has been shared on Fox, NBC, CBS News, Chicago Tribune, Authority Magazine, and Thrive Global. Her mission: breakthrough barriers, build better businesses and become bridges of hope, to future generations.
