My Mom’s Early Alzheimer’s Story For Better Understanding Of The Disease At a Young Age, for Being Patient Voices Community Please, mom don't forget us
I would have never imagined that our mother would inherit the same disease as my grandfather. She is the 7th sibling out of 10, what are the odds, right? My mother was diagnosed with Dementia three years ago, at the age of 49. Prior to my mother’s diagnosis, I began to notice big changes in her behavior before my family did. The worst part of all of this, is knowing how it all ends. There is no cure, only the consolation of different test medications to slow down the disease. I never knew that I could experience multitude emotions, in such a short period of time. Some days I feel joy because she is happy. On other days, there’s the guilt, the shame and the wonder how I didn’t see the signs earlier? When I did, why didn’t I act faster? or sooner…Now, I guess we will never know. It is progress at a fast rate and we can’t make it stop, only slow it down with medication.
According to her doctor, my mother has maintained the moderate early stage of the disease for three years now. However, lately it has worsened. Her short-term memory lasts 15 minutes, sometimes a bit more depending on the mood she starts the day in. Her long-term memory comes and goes. On those ‘bad’ days my sisters and I try to talk to her or simply be present until the episode passes. At this stage, she requires reminders to eat and to shower. At least, this is what her caregiver (her husband) tells us. She can still do a few things on her own, however, the list is slowly decreasing.
The one aspect in my mother’s life that we hope to not only maintain, but hopefully increase, is the relationship she has with her family. While spending time with my daughters and my sisters, my mother is at her happiest. The bond between my mother, my sisters and myself has always been strong. By trying to maintained it, we believe it makes the process easier for her and us. We record, write and take pictures of everything. My sisters and I have compiled photographs into albums and soon will hung picture frames around her house. I know that it may not seem like a lot, but it really does help her calm down on ‘bad’ days to see photos.
Photos of my daughters and my mother are found within the albums, it is one of my priorities too, my daughters and her abuela moments to be saved. At a young age, my eldest at two years old, did not understand what was happening to her grandmother. Our way to explain it to her was by using the character Dory from the movie ‘Finding Dory’ as an example. By my daughter watching this movie, she has a greater understanding of what her abuela is going through and it helped make the development of their relationship much easier.
I know that if our lives were reversed that my mother would do the same for us. We used to be very close; she is not only our mom, she was our best friend too. She always encourages us to tell her everything. We still do, which is one of the many reasons, we believe she has held on for this long.
My advice to make it easier for the patient and yourselves: YOU must accept it first, and then accept the new them too. Easier said than done, right? By accepting it first, YOU the caregiver become their positive light in their darkest hours.
By accepting it first, YOU the caregiver become their positive light in their darkest hours.
My mother is different, but not in a bad way to her. For the reason that she inherited this disease at such an early age, we see that she is fighting for every memory that she has left. She adds our pictures and things about us inside my younger sister’s school bag every day. We will never give up on her either, and we make sure she knows that everyday too. Nevertheless, it does take some time to admit and accept it, so taking that time for that helps immensely.
Essentially, all we can do is love and appreciate every moment we have with her. Life really is a gift, and she has been able to hold on, for the past three years; because of her love for us and her life. I feel as those acknowledging who she was, and how she would have wanted to be remembered, is the most important part on this journey. It really is a story that you know does not have a happy ending. I wish with all my heart, especially as a writer myself, to change how the story ends.
At this time, we are on the process of hiring full-time care, in order to keep her at home as much as possible. That’s also the hardest part of this whole mess. Looking at her and knowing that she’s there somewhere and you hope with all your being, “please, mom don’t forget us”.
Angie Olivo is a mother, wife, environmental scientist, writer, Founder & CEO of writersyep.com
She and her sisters (Lucille Olivo & Allison Olivo) have being their mother’s part-time caregivers since before their mother was diagnosed.
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