Dec 152017

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.

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  12 Responses to “Accepting the New You During the Holidays – and Beyond”

  1. Your involvement fills a critical space. As a caregiver whose spouse is mild Alzheimer’s it seems most information is geared to moderate or severe Alzheimer’s. Information, planning and spousal communication are areas of great importance. Thank You !!

  2. Blessings to your and your family on your journey, LuPita. You do a great service to others by sharing your diagnosis. Thank you.

  3. I’m so very proud of my hermana. I love and miss you. Thank you for taking these bold steps- of educating and empowering others— which is very much who you are— You’ve always been a rock for many others. I wish I was closer by to help in your support circle. This article and pictures with your girls is everything. Mijo loves his Tia Pita – and I love and appreciate all you’ve done. Prayer is powerful and I will keep you and family in prayer. And I’ll call you to catch up.

  4. I agree that not enough is shared about early dementia. My husband doesn’t want anyone to know. He’s never done Facebook, so for my birthday my friends and I raised $600 for the Alzheimer’s Association. These are the Golden Years! I’m going to enjoy him and help him enjoy life as long as possible!

  5. Thank you for this very well written account of your experience. My mother was diagnosed with Alzheimer’s about five years ago. I moved back to years ago to be closer to both my parents during this time. I have three other siblings one other of which is very involved with my parents lives. It is difficult to watch it is difficult to be a part of on this end of it. You have the gift of having both experiences as you said. I want to thank you for your article because it really shed light on what it is like for someone who is been Diagnosed. Happy holidays you are in my thoughts and prayers as are your daughters.

  6. Acceptance, moving on with new normal and living the moment as you are doing is so helpful for the caregiver. My wife Pamela ( mild cogn…..) doing that too. There is so much left to enjoy……….thank you for sharing and happy holidaze to all

  7. These are very trying days, weeks and months. Your ability to write and share your story is pretty amazing as I fully understand the difficulty you’re having with forming thoughts and putting words on paper. My wife is on a similar path to you but likely a slightly more advanced stage. She too served for 20+ years in education as a counselor. Too young for this dreadful disease with no family history at 56 and a diagnosis two years prior. I can only hope she will find the willpower, motivation and desire to help her condition and hopefully slow any progression in the months and years ahead. I can truly say, it is certainly not how we planned to spend our “Golden” years but once again more proof that our lives are not within our control. The hands of our God and his plan is yet to fully unfold. A miracle is still within our reach!

    Thank you for sharing your story.

  8. Thank you for this article. You sound very intelligent and organized and upbeat. I took care of my mother for a year with all timers. I think it’s harder on the Family then the person. I pray for you and wish you the best. You are lucky that you have a wonderful family.

  9. Your article and the wisdom you expressed touched me deeply. I cared for my brilliant husband as I slowly lost him to Lewy Body dementia. Now, at 75 years of age, I am experiencing my own mental decline. Your words gave me hope. I dread that my daughter will have to care for me. But I am blessed to be near family who love me and I know the Lord will help us get through this. Your strength and faith our blessings. I pray for ease and many moments of joy in your future. God bless you and your family.

  10. Thank you for the post! Just in time! I am in my early stage now. Looking for a good doctor that can lead me through this! I live in South Carolina! Any suggestions of who I need to see??

    • Hello Jose. You can find resources for the South Carolina area and contact information for your local chapter office here: They will be able to assist you further. You can also call our 24/7 Helpline at 800.272.3900.

  11. Thanks for sharing. It takes lots of courage. I care for my mom (she moved in with us 2 years ago) and needs 24/7 care now. I’m always looking for new answers. I just read a book you might be interested in. It’s too late for my mom, but might be helpful to you and your children (& me). The author’s credentials appear legitimate and the explanations make sense to me and what my mother has experienced, but I’m skeptical given I don’t hear people talking about this book and it’s author. I’d love to know someone else’s thoughts. I got this from my library. It was a new book there: The End of Alzheimer’sThe First Program to Prevent and Reverse Cognitive Decline by Dale Bredesen, MD. I believe he is a professor at UCLA based on my small amount of research. I haven’t had a chance to ask mom’s neurologist yet if he’s heard of it.Good luck! God bless you and your family!

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