Every Christmas, it’s my family's tradition to make homemade tamales! We make pork, chicken and raisin, usually 12 to 15 dozen. Christmas Eve dinner always includes these specialties, and then our extended family takes some home for Christmas morning. I love everything about this time of year, from our family get-togethers to knitting gifts and watching all of my favorite Christmas movies.
Although we plan to continue these traditions together, I will be resting more than usual. I will require my daughter’s assistance in preparation for the holiday season and help from my sisters in making our feast.
It’s not easy when you don’t feel like you. It’s even more difficult when you start to notice that you are forgetting things.
In 2016, I was finding everyday work difficult, having to use sticky notes at all times to remind myself of the littlest of tasks. “I am having memory problems and I don’t know why,” I told my doctor. “Nothing is making sense to me.” My physician performed some cognitive tests before referring me to a neurologist. Following a neuropsychological evaluation and PET scan, I was diagnosed with mild cognitive impairment (MCI). The aftermath was a blur. This past summer, my diagnosis was changed to Alzheimer’s disease.
Although I was shocked upon my initial diagnosis, I had a gut feeling that it wasn’t going to be good news. I agonized over the next few weeks, trying to decide how to break the news to my friends and family. Finally, I shared my diagnosis with my two adult daughters. They were devastated, as was I, knowing that they would have to be my caregivers someday. Although they have grown up, I still see them as my little girls.
I know exactly how my daughters feel because I experienced an Alzheimer’s diagnosis with my own parent. For five years, I worked full-time while taking care of my mom. Now I am experiencing caregiving from the other side.
I am one of the youngest in my family, the fifth child of six; when I shared my diagnosis with other members of my family, many of them reacted with denial. While my family tried to come to terms with this new situation, so did I. I had to start accepting the new me.
A New Day
Despite my family history, I didn’t see this coming; I always saw myself working until I was much older. Now my life is totally different, but I am dealing with the cards I’ve been dealt. After all, God only gives you what you can handle.
I still have so much to give and want to continue to use the skills I have, which is why I became involved in the Alzheimer’s Association National Early Stage Advisory Group (ESAG), which I applied for after finding information on the Alzheimer’s Association’s website.
I want to make sure the right resources are being provided in my community, because I know that anyone who is recently diagnosed – or who steps into the role of a caregiver – needs help. The most important thing to remember as a caregiver is not to neglect yourself; you are no good to anyone else if you do.
It is extremely overwhelming, providing support for someone you are so close to and love so much. You want that person to be with you forever, so to speak, but you know that you’re going to lose them. The sad part is you lose them twice: when they forget you, and when they pass away. I regret that my daughters will have to experience what I did.
A New Goal
In our Latino community, people are afraid of dementia; a lot of Hispanic people are not going to the doctor or talking openly about the disease. We deal with familial issues internally: if there is a problem within the family, we take care of it.
I can recall my brother’s reaction to my diagnosis. He said that I didn’t need to tell anyone, and that it was no one’s business but ours. I know he said this to protect me, but I have told people, despite it being extremely difficult. It’s hard for me to think about the Latina women who don’t have the support system and resources I do. Who is helping them?
It’s my goal to help get more information out to the Latino community that is tailored to their needs. People are more comfortable in their native tongue, and it’s important that we consider all of the communities who aren’t as inclined to ask for help.
A New Me
As for me, my days are different now. In the past, I would simply jump in the car and go wherever I please. Now everything has to be thoroughly planned out. My youngest daughter Jessica recently moved home to help me and goes with me everywhere. My oldest daughter Lizette handles my budget and the day-to-day things I used to do but can’t do now.
I used to read a lot, but now I have to read things over and over just to let them sink in. I don’t have as much energy, crowds make me antsy and I have trouble maintaining a conversation when my words don’t come out the way I want. My learning ability has certainly changed; it’s difficult being an educated woman who had so many plans that were cut short.
As a Latina woman, I am a natural nurturer. As a community, we believe that it takes a strong person to take care of a family, and that is something I have always done. When Jessica moved in, I was happy, but also sad. She is putting her own personal life on hold by coming home and helping me. That being said, our time together is special. We attend early-stage support group meetings through the Alzheimer’s Association, have long lunches together and even go to the movies during the day, which is something I never did before in my life! I’ve had to accept that life isn’t all work, work, work anymore; I’ve slowed down, and that’s okay. Shopping around the holidays is certainly easier with an extra set of hands!
A New Dawn
You have to be tough if you are living with dementia. You have to push yourself continuously and keep your brain active, and it’s my goal to be as mentally alert as possible for years to come. This new chapter in my life has allowed me to be positive because of all the support I have around me.
To others living with this disease, I can only say “embrace yourself”: love who you are, and accept who you are today. You will continue to make new discoveries about yourself, and you will make mistakes along the way. Don’t trouble yourself over those mistakes. Now is the time when you have to accept the new you. Your new personality and reality won’t be perfect, so don’t strive for that. After all, no one is perfect, whether they have dementia or not.
You may be shell-shocked when you first hear of your diagnosis, but educating yourself will make things easier for you and your family. Do only what you want to attempt to do, go only where you want to go and create whatever it is you want to do this holiday season. You will be with family, the ones you love, and they will understand that you can’t do everything you used to do. No one will care if the house or the tree isn’t perfectly decorated. Just live every moment together in caring for each other. This holiday season, I am so thankful for being able to pray. I am thankful for having another year of still remembering my family and those I love.
About the Author: LuPita Gutierrez-Parker served as a regional admissions advisor for Eastern Washington University for 10 years, following a 32-year career in social services. She has two adult daughters, two cats (Vader and Chewie) and enjoys knitting, swimming, movies and volunteering in her community in Yakima, WA.