Living with Alzheimer’s
Do you know someone with Alzheimer’s Disease (AD)? Do you personally know a caretaker of someone with AD? Have you ever thought of what all parties involved go through? Maybe, maybe not. Maybe it’s so far distant from you that the thought has never crossed your mind. Maybe someone’s told you about a friend or a family member dealing with the disease and all you thought of is, “Wow, they won’t remember anything.” Well sit back and let’s dive into my experience living with Alzheimer’s disease in my own backyard.
Before I get started let me give you a short lesson on AD (founded on the Alzheimer’s Association website, www.alz.org). Alzheimer’s is the most common cause of dementia, a general term for memory loss and other cognitive abilities serious enough to interfere with daily life. Alzheimer’s disease accounts for 60 percent to 80 percent of dementia cases. Alzheimer’s worsens over time. It’s the sixth leading cause of death in the Unites States. Those with Alzheimer’s live an average of eight years after their symptoms become noticeable to others, but survival can range from four to 20 years, depending on age and other health conditions.
So are you ready for this roller coaster ride?....
Something didn’t seem right...her thoughts became repetitive and trips to the supermarket were daily just to fill the pantry with foods she already had. “Y todas esas cajas de Cherrios?” She would respond, “Un especial que habia.”
It wasn’t until we took a trip to DR where she became disoriented, and kept forgetting where she placed her belongings. This is when we realized we may need to see a doctor. Upon our return to NY, we scheduled an appointment with her primary. There she admitted to us that she was once going in the wrong direction while trying to get home. Nerves spiraled through my veins trying to understand what that meant. Her doctor recommended we see a psychiatrist.
That early morning in the Fall of 2010 sitting at El Centro Medico Dominicano for our first consultation anxiety sat beside me. A series of questions were asked from medical history, recent accidents, trauma, to depression but all were negated. After all was said and done the process of elimination led to potential early stages of dementia. Scheduled for an MRI and return in 14 days, we were told. This time on our return visit anxiety sat inside me. The news hit us, although only a brain autopsy would give us a definitive answer the MRI excluded other cerebral pathology. Overall results spoke to no other than DEMENTIA. The tears dripped on our shirts and the questions as to how or why began to run through our minds. She’s only 60 years of age, and studies showed that Alzheimer’s disease often begins in people over 65 years of age. We then learned that approximately 200,000 Americans under the age of 65 have younger onset Alzheimer’s. There was no preventive care only medication that would slow the progress the infamous Namenda and Aricept.
Little did we know to buckle up because the roller coaster ride had just begun. Regular doctor appointments, ensuring she wasn’t left alone, medication became a regular intake, and subscription to the Alzheimer’s Association. The cooking decreased, the dependency increased. She would ask, “Quien eres tu? or “Quien soy yo?” Those questions till this day break my heart. Her birthday became felicidades para todos. Her behaviors were uncharacteristic. “What is happening?,” we would ask ourselves. She needed 24/7 supervision. The Home Health Aid would call, “Mira te llamo porque tu mama salio del apartamento pero solo llego haste el elevador”. (“I am calling you because your mom left apartment but she only reached the elevator.”) Thoughts of “what if one day she makes it outside?” Days became nights and nights became days. Talk about a roller coaster when you are upside down and your legs are dangling. She tried communicating but her thoughts were tangled, she struggled and we struggled.
How do you handle this disease while trying to build your own family? Is it selfish of you to think about yourself? Do you sacrifice you to care for the person who gave life to you?
The family would say, “En Santo Domingo hay un doctor que injecta la Madre Celula que cura el Alzheimer’s.” (In DR there is a doctor that injects the mother cell that cures Alzheimer’s)
The doctors would say, “Young ladies there is no cure for Alzheimers, I recommend you begin reading about the disease and join support groups to help you find comfort. It will get to a point where she will need to be placed in a nursing home.”
“En Santo Domingo hay un doctor que injecta la Madre Celula que cura el Alzheimer’s.”
(In DR there is a doctor that injects the mother cell that cures Alzheimer’s)
“THERE IS NO CURE FOR THIS DISEASE.”
“EN SANTO DOMINGO HAY UN DOCTOR QUE INJECTA LA MADRE CELULA QUE CURA EL ALZHEIMER’S.”
(In DR there is a doctor that injects the mother cell that cures Alzheimer’s)
Holy shit this was a freaking game of tug of war while upside down with your legs dangling.
“Mis hijas ustedes son hermanitas, nunca se pelen porque el dia que me pase algo solo se tendran una a la otra para quidarse.” (“My daughters you are sisters, don’t fight because some day something will happen to me and you will only have each other.”) We held on to those words like no other. We cried together, we laughed together, we remembered together, and we prayed together. We were in this game of tug of war together. It was us against the world. No answers to our questions, and our mother was not a guinea pig, so we continued to pray and ask God to guide us in the best direction. That’s one thing I’ll give credit to my mom for, the faith she instilled in us moved mountains. Maybe not in the direction we wanted it to but in the direction the Lord believed they should be moved.
Again, going back to the questions, do we put a hold on our lives to care for the person that gave life to us or do we become selfish and focus on us? We were both married with children, what do we do with our families? We asked ourselves what our mom would have wanted for us. The answer without a doubt was to live our best life to the fullest. We contemplated and contemplated because, Jesus a un Nursing Home ella no puede ir. (To a nursing home she can’t go.) More words that would replay in our thoughts like a broken record. The perception, our mother, our family, or ourselves. GEESH what a dilemma! So we decided to keep her home with 24/7 home health care until that option was exhausted.
In 2017 within less than 4 months my mom was hospitalized twice, once for malnutrition and the second for a burn due to negligence. How could this happen? She was in the comfort of her own home with 24/7 care. Well, needless to say your perception is your reality. I won’t speak negatively about Home Health Aids because I admire their work. Is it negligence when you are caring for a person for 72 hours straight and you finally find a second to bathe, yet the patient gets up and touches the hot pot? This ended our contemplation, it was the moment to place my mom in a nursing home. She didn’t understand but it felt like leaving your child in school for the first day of pre-k, yet the difference now was that you weren’t going back at 2:30pm for dismissal.
Was this the right decision? We weren’t sure, we weren’t sure about anything because it was our first time ever dealing with such disease. However, what we did know was that my mother needed 24/7 professional medical care, where she would be observed by Nurses and Doctors who would ensure daily intake of medications and have experience in dealing with such patients. Placing a parent in a nursing home doesn’t mean all your worries are gone, but it puts ease on the caretakers. Well it did for my sister and me. We build a strong relationship with the staff and would ensure we visited as often as we could. It allowed us to take care of our family at home, while also ensuring our mother was well taken care of. Nursing homes have their flaws also. Think about a Nurse assigned to 14 rooms with 2 patients each, or a Nurse Attendant assigned to dinner duty from 5:00pm –6:30pm and needing to assist 5 patients who have difficulty eating by themselves yet each patient takes over 30 minutes to eat their full meal. Talk about understaffed, overworked, and underpaid….but that’s for another day…So, what we learned to have was patience and hope.
Don’t get me wrong there were those seconds where she would say something coherent or her personality traits would appear those seconds made up for the hours of chaos. That moment where she would see you and give you her blessing, or wink an eye, or as you were saying bye she would shoo you away with her hands, or even when she would throw a Coño at us. Is there hope? Absolutely there is hope but the reality is that her mind was gone. So why hope? Because it’s what keeps you alive, it’ what keeps them alive. It’s what helps you overcome all of those obstacles you encounter such as the insurance not covering 24/7 home health care and you having to fight for it. It’s what keeps you calm when the medication isn’t sent to the pharmacy on time.
When she pulls your hair because she doesn’t want to bath.
When she smacks you because she thinks you are an impostor.
When she now has to eat through a syringe because she no longer has strength to open her mouth.
When now she could no longer walk and is bed bound.
When she spends her days with her eyes closed and the only thing that assures you she’s up is the grinding of her teeth.
BUT the HOPE that you can kiss her yet another day, or hug her and physically tell her I LOVE YOU or Bendiciones Mami although she won’t respond.
That is hope and hope still lives.