by The Mari Twins
Alzheimer’s Disease, you have probably been hearing more about it, on the news, social media, topic of conversation at different health forums, and even from new advocates such as actor Seth Rogan. We should all be informed and talk about how Alzheimer’s disease is affecting our loved ones. The Alzheimer’s Association defines it as a type of dementia that causes problems with memory, thinking, and behavior. The symptoms of Alzheimer’s develop slowly and become severe over time impacting daily life tremendously. One of the biggest misconceptions with Alzheimer’s is that it is seen as a normal part of aging. Unfortunately, it can impact people starting in their 40s and 50s. Gerardo Joven was in his late 50s when the changes starting to become evident including memory lapses, forgetfulness, concentration problems, difficulty finding the right words to say, depression and anxiety. That was only the beginning for Gerardo, nobody would even imagine what would transpire after being diagnosed with Early – Onset Alzheimer’s Disease.
Gerardo Joven, was born and raised in Spain and later settled in New Jersey. He is a hard-working, charming, handsome, loving man. He was always the life of the party and worked endlessly to make certain to take care of his family. The image of the strong, hard-working, loving father was quickly altered when only at the early age of 57 Gerardo Joven was diagnosed with Early-Onset Alzheimer’s. Although physically he was with us, we quickly lost our father, he was no longer the same person. With very little answers on how this could have happened and how did we all miss the warning signals, we decided not to dwell on how we could have identified the earlier signs but focus on how we would create a safe environment at home for him. It has been a long trajectory of accommodations for our father, always taking into account his best interest. Life for Gerardo now at age 67 is 24/7 care and our family is far from giving up on him. We acknowledge each birthday and holiday. We treat him with respect and sit him with us at the dinner table. He is unable to eat by himself, care for himself, speak, and lately his walking has slowed down significantly, but Gerardo Joven is alive, he is still a member of our family. He has his first grandchild now and little Camilo knows who “Belo” is. We are all his caretaker, we all take shifts to stay with him, to feed him and care for him. There have been several times when Gerardo’s Alzheimer’s confusion has caused terrifying moments, that we had to overcome together as a family. If we did not stick together as a team the situation could have quickly escalated to a disaster. There is no easy way to deal with this disease that steals our loved ones, but as caretakers and family members there are precautions that can be taken.
Transitioning. When Gerardo was first diagnosed, he still went to work in New York City. Gerardo knew his routine and somehow made it to work. Probably one of the most stressful moments. What if one day he lost his way to work or coming back home? What if the train schedules changed abruptly? His place of employment was extremely supportive and together we developed a system that would maintain the whereabouts of Gerardo available. This was obviously very risky but Gerardo wanted to work and was completely unaware that his memory was failing. Always keep your loved one with Alzheimer’s safe, do not restrict them from all activities, but make certain to take the steps necessary to create safe activities, tasks, and routines. Slowly we had to explain to Gerardo that he could no longer go to work. This was a difficult period for Gerardo, he could not understand why he had to stop working. Afterwards, we had to take away his car keys, it was just becoming too dangerous for him to drive. For Gerardo, anxiety set in quickly, he could not understand why life was changing so much. It was very heartbreaking to see that we had to minimize his activities outside of our home but we had to make sure to make daily life safe. Never go against the person with Alzheimer’s, there already exists enough confusion, instead make arrangement to smoothly transition into a safe environment.
Assess your home. Many of our loved ones with Alzheimer’s find themselves confined to their homes. It is extremely important to assess the entire house and determine areas of danger. Anything can pose as a threat once judgment is impaired. Make sure the doors are securely locked as well as windows. Just like when there is a baby or toddler in the house make certain to put everything away or out of reach. The stove becomes a threat too, remove the knobs. During the earlier stages, Gerardo wanted to wander outside of the house often. His internal clock was interrupted and he did not know the difference between day and night. This was a huge problem at night. What if he became confused and walked out of the house? We decided to put extra locks on all doors that would make it impossible for him to be able to get out. If this is a choice you need to make, please have an emergency exit plan implemented and all acting caregivers must be informed of it. Throughout the process of caring for a loved one with Alzheimer’s open communication is a must. We also had to take down all the calendars and clocks. Gerardo became obsessed with the date and time and continually went to check. It provoked Gerardo’s anxiety level to rise. Something as simple as removing a calendar can make a great difference. Make sure to look at your home in the eyes of someone with Alzheimer’s.
Develop routines and provide encouragement. Daily routines are what works best for Gerardo and our family. Once he was home, we had to find simple things to keep him busy. We tried a few adult day care centers to occupy his time during the day. The facilities were equipped with the proper attention for patients with Alzheimer’s. Their activities included music, arts and crafts, and manual tasks that would keep patients busy. Gerardo became more confused going to different locations and agitated. We decided that keeping him at home comfortable would be best. Since we noticed that different environments or different daily activities would create impulsive negative behavior, we began creating routines for Gerardo. He knew what to expect during the day and created a more relaxed behavior. A schedule for grooming, meals, activities, napping, and bedtime was set up and the same structure is still followed everyday. It is also a good idea to inform your loved one which task is taking place and what you will be doing next. When possible encourage your loved one to complete daily tasks and activities on their own. Make certain to acknowledge them when they complete it. If they are able to dress themselves, lay out their clothes and opt for using clothing that are easy to put on. My mother would lay out Gerardo’s clothes on the bed and he knew where to find them, minimizing confusion. This also allows for a sense of independence and accomplishment.
What is most important throughout this process is to continue treating your loved one with Alzheimer’s with respect and acknowledge their presence. They are the same person but with new needs and behaviors. Always treat them with patience and understanding. As your loved one’s Alzheimer’s progresses avoid becoming frustrated, repeat instructions as many times as necessary, keep communication clear, be affectionate with hugs and kisses, include them in family activities, and when they ask the same question over and over again, simply answer every time. Do not ask the person to remember things, or try to force them to understand, or struggle with a reality they can not begin to comprehend. Adjusting to this new life will not be easy. There will be so many emotions and questions. Show your loved one how much you really love them, let them know that you are there, act with kindness, remember you are all they have.
As for Gerardo, he lives a comfortable life at home. The doctor finds it remarkable that we have been able to maintain Gerardo at home after all this time. Gerardo and Nury just finished celebrating their 38th Wedding Anniversary and their love seems stronger than ever. Nury is the definition of strength, her heart is filled with love and there is nothing she cannot do for her husband. Gerardo has forgotten many things, he cannot function alone, and we had to bring in a nurse to the house to assist in the morning routines. As a family, our goal is to keep Gerardo safe and happy as long as we can.
Every family situation with Alzheimer’s is different and unique. Planning ahead, preparing for challenges, and learning what to expect is very important. For more information and support visit the Alzheimer’s Association or Alzheimer’s Foundation of America websites. Both sites are filled with resources that will educate and assist your families during this process.
Maribel and Marisol Joven, better known as the Mari Twins were born in New York City from Ecuadorian and Spaniard Parents and they serve as positive role models in their community. They are passionate about their culture, health and wellness, education, and fashion. Currently residing in New Jersey, Maribel and Marisol have successful careers in the Education and Healthcare fields. Maribel and Marisol’s efforts to better the well-being of others or create awareness can be found in their volunteer work. The Mari Twins are proud to represent the Icla DaSilva Foundation, Literacy Volunteers of America, Handfuls of Hope, and are Sunday School Teachers at their local church. Maribel is the current Ms. Latina Galaxy and former Ms. Belleza Latina International 2013. Marisol is the current Ms. New Jersey Belleza Latina. You can follow them on their blog, Life with The Mari Twins.