Before The Diagnosis
As caregivers, I believe it is important for us to remember our loved ones before the diagnosis because once they are diagnosed, everything changes. A diagnosis brings an abrupt shift to all lives involved with the loved one. New responsibilities are added and other life plans are put on hold. Then at one point, we can become all encompassed with caring for the disease and forgetting who our loved one was before they were diagnosed. I will talk a lot about my mom and the different stages of Alzheimer’s, but for now, I want you to know who she was before my family ever thought this could ever happen to us.
As A Parent
As I was growing up, my mom was loving and caring. She attended all sporting events, ballet recitals, plays, etc. Mom supported my brother and me with whatever goals we had and did whatever she could to help us achieve them. She was involved, helping us build California missions, dioramas, and solar systems; reviewing our math; signing reading logs, and listening to us talk about our days at school. She was a great mom, and I wish I told her that more. During the difficult times, and there were plenty of them, she focused on cheering us up by singing Bushel and a Peck by Dorris Day and ending the song with a big hug. Even in rough times, there was love.
I was fortunate that our relationship grew into a friendship at a young age. We would talk about all topics. I truly enjoyed spending time with her. That said, we had our ups and downs as most mothers and daughters do. I can still remember the level of anger in her voice when she would yell to my dad, “YOU NEED TO TALK TO YOUR DAUGHTER!” after she and I had the occasional screaming match over who knows what. This didn’t happen often, and we always managed to work things out and get back on track.
As A Teacher
When I was in grade school my mom decided to make a career change, and while working full time, she went back to school to become a teacher. I can remember her and a classmate sitting in our dining room reviewing course materials and preparing for exams. They would quiz each other and review for hours. When she finally switched careers, she began working at one of the county high schools teaching math. At the time, I just enjoyed the fact that my mom now had summer vacations too, but as I grew older I realized my mom had put into action what so many just say: that you can be anything. She made a giant career change, and in doing so, she gave me permission to do the same if I ever needed to cross that path. And I did just that several times.
When my mom taught students, she was very involved in other school activities, as most teachers are. Students enjoyed talking with her and asking her questions, and she enjoyed the same with them. She beamed with pride coming home from school saying, “I challenged a football player to a wall sitting competition in class today–I won.” The students appreciated her and respected her. She would help the ones that needed extra support in work and in life.
One time while buying my brother a pair of basketball shoes, she took advantage of a sale and bought a second pair. Later she told me that she called one of her school’s basketball players into her classroom after school had ended. Mom gave the student the shoes to try on and make sure they fit. When they did she told him they were his (she knew he couldn’t afford new shoes for the season) and to not tell any of anyone. He hid them in his backpack and went home. Secret safe between the student, his family, and my mom.
My mom was very clear with her students: if you respected her, did your work, and tried your best, she would return the same to you, sometimes tenfold. And if you didn’t, then you reaped what you sowed. To her, kindness could mean the difference between extra credit to get you a C versus disrespect that may keep you at a D. Some of you may read this and think that is wrong; from my perspective, she was teaching her students some life rules. Rules that I valued and took from her. Kindness matters.
As a teacher, mom’s summer vacations became project vacations. I’m not talking little projects, either, I’m talking “do it yourself” house renovations. One summer, she painted the outside of our house. Another year, she decided to tile the kitchen floor and master bathroom. On a different summer, she painted the entire inside of the house, and I believe the summer after that she was back to painting the outside of the house again. During the summer she was a painter, plumber, tradesman, gardener (sort of–most of the plants died, admittedly), but most importantly, she was there for my brother and me. I don’t think it is something we appreciated then, but now I think it was one of the best moves my mom made.
Why Should You Care?
I know you may be reading this and thinking why do I care. And really you don’t need to. But if you are a caretaker to a parent with cognitive loss, then you know that this matters. It matters to remember who they were before the loss. To realize as cognitive decline, dementia, or Alzheimer’s disease takes hold of your loved one, warping them, it is easy to get caught up in who they are now and not who they were. If I can provide any advice to young caretakers out there, it is this: write your loved one’s past and keep it in a journal, a picture book, or stories to yourself. Then review them when times are hard. The disease will change them, but the stories that will bring you back will settle your mind to bring you to the present that while this person in front of you is still your loved one, they are also not. Your loved one is the memories, their impact on your life, the one in the journal, photo albums, and stories. This will be hard and may cause even more grief with each stage, but it is important to remember who they were to provide the care and love that they need as you begin the challenging journey as caretaker, as you begin your role reversal.
Share Your Story
Who was your loved one before the diagnosis? They are special and I want to hear about you and them. How has your life changed since the diagnosis? Share with me in the comments below.