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Published On: Wed, Jan 28th, 2015

Just Another Caregivers Story

10408802_851466704884435_577414633449272328_nJust Another Caregivers Story

Alzhiemers, Dementia, Cerebral Vascular Disease, Oh My!! Where do I start? How about the reality, I am exhausted all the time, every day, every minute, and every hour? If you are a caregiver, you are familiar with my plight. I am Alba Sanchez. And this is my story.

I am a change of life baby. Which means that my parents were always old and sick ever since I was a little girl. My parents were together since the age of 16. They meet in Puerto Rico in Ponce around 1936. My mother Alba Baez (Mita) was a white Puerto Rican from the upper classes. And my father, Gilberto Sanchez (Tito) was a dark skinned bohemian orphan who grew up with his uncle’s family. Papi Tito was a singer and romanced my mother through the radio. They couldn’t have been more different, and more made for each other…… El uno para el otro.

My mother gave birth to her first child at the age of 19 and within a year she wanted to come to the states. Papi Tito said, “You’re going to New York when New York comes to Puerto Rico”. So Mita packed her bags and came here alone. She arrived on a Friday and by Tuesday she was working in a factory. She made enough money to bring over her daughter, her mother, her sister and her sisters two children, which she eventually she raised as her own. She was a lot stronger than I was at that age or anyone I know. In Puerto Rico all classes were taught in English, hence my mother knew the language when she arrived. She did not bring my dad over.

She was determined to raise her kids in the American Middle class and became a degree nurse, while working full time and supporting a lot of people, her mom took care of the kids. My mom had no intention of ever going on public assistance. And after a couple of months of Drama and detective work Papi Tito made it to New York and joined his young wife and the family.

She raised my sister Norma in the States. In 1963 Norma graduated from The University of Minnesota. My mother paid for her complete education with no financial aid. That was a rare thing in the early 60s. It’s a rare thing now. It was an even rarer thing for a Latina to get an advanced education at that time.

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It seemed that my mother accomplished a lot by sheer triumph of will. She ruled the family with an iron fist, old school style.

Norma and I recognized that my mother had always been unstable and unpredictable since childhood. In truth, if Papi Tito had been the true head of the house hold we probably would have had a great childhood and wouldn’t have accomplished much.

Norma moved away right after college. My abuela lived with my family till she died. The house was empty and Mita decided to have another child, me. I was named Alba after my mother. I was her second, her name sake child, born 23 years after her first.

Mita always had some strange crazy mean streak in her personality and she focused all of it on her daughters. Since, in her day, “Only crazy people went to psychologist and psychiatrist,” she was never diagnosed with any mental disease. However my mother could be very abusive, a rageaholic and control freak. Both me and my sisters suffered much because of this personality flaw. And at times she was the nicest most generous, funny person I have ever known. At 5 I was sent to a Catholic boarding school. As much as I hated growing up with the nuns, who had a mean streak of their own, at least they were stable and their abuse was predictable. I cannot say that about my mom…

The mean streak grew greater yet, because she was career driven and successful, no one else mentioned it. To be fair my mother was very generous with me. She vacillated between kindness and evilness. Till this day, me and my cousins refer to her as Dr. Jekyll and Mr. Hyde. I never lacked for anything. I was given every opportunity because of her. I only bring up the personality disorder because she still has it, only worst, and I wonder if it is somehow related to the dementia. There are many times I don’t know if my mother is acting peculiar because of the dementia, her personality flaw, or if she is just genuinely a mean, violent person.

Anyway cut to ten years ago. I was having a grand old time traveling and working on the road lecturing at colleges and giving workshops. I was also working as a free-lance writer for TV. And spearheaded a bi-lingual commercial campaign for HBO Latino. As well as appearing and being the face of a group of station IDs that became a program called Habla. I was the face of the campaign. I was making pretty good money and had started reaching some of my career goals. And then “IT” happened….Alzheimer’s

I was writing a show that would open up the 40th season at La Mama Experimental Theater. And one day out of the blue my Mita started acting really crazy. I mean crazier than normal. She was not just raging but going into some uncontrollable crazy places. And I couldn’t get her to snap out of it! She was yelling and screaming and not making any sense. She was super aggressive with me. Then she started accusing me of trying to kill her! What the……!!! I tried to reason with her, but that wasn’t happening. Before I knew it she was outside on the corner yelling and screaming. Someone called the police and she ran to their car in desperation, she told them I was trying to kill her. The police didn’t believe her but called the Ambulance and they took her in to Montefiore Medical Center.

“Wait what just happened?” Now we were in the psych ward, my Mita was sitting yelling and screaming at the top of her lungs. She was telling the Drs did not to listen to me because, I was an eloquent speaker, but I was evil and good for nothing.” Someone tell me What Just Happened!

One of the nurses saw me sitting in a stretcher across the room, because I did not want to continue being her punching bag. And then the nurse said IT. It was the first time I ever heard IT. She said IT The D Word. She said, “You are a very good person”, (If I had a dollar for every time I’ve heard that), “it’s a shame these DEMENCIA meds don’t really work.” I did not know what she was talking about but I had to see a Dr. I needed to understand what happened. Then suddenly Mita came back! In a flash she was kind, relatively normal and recognized me. She wanted to go home. And given the fact that dementia denial runs deep, I did too. I knew this time was different but I figured nothing really happened, it was one of her rage things that she and I would soon forget. I figured we would be going. But the Dr. insisted she be put in a mental institution called Gracie Square. I can’t say I was against it. Did I mention I was exhausted?

Well the next day my cousin Nelson who was doing the sets for the show at La Mama, came in from Puerto Rico. He did not make the rehearsal because he had gone to visit my mother and just couldn’t bare seeing her that way. Nelson, could not function for the rest of the day. That saddened me terribly but the show must go on…. And no one had any idea what I was going through.

I still didn’t know what was going on. I called the social worker at Gracie Square to try to get some information from her but she just said, “Do you intended to put your mother in an institution?” What the hell was she talking about! When my mom was discharged no one personally informed me of the diagnosis. I was given a whole bunch of papers to sign with the diagnosis that someone, I never met came up with. It never mentioned diagnosis no mentioned of Dementia. I signed them, we left in a cab. I say we but I left with a women who I did not know. Mita was totally out to lunch, she was completely drugged. I’m not going into the details because, if you have an elderly parent who is not doing well and is on many meds, you are probably very familiar with an overly drugged parent. I was told to sign a piece of paper and was given 12 different med scripts. She was speaking crazier than before she went in. The papers did not say she had dementia or Alzheimer’s or Cerebral Vascular Disease.. It said she had paranoia, hallucinations and depression, no A, C or D words. Nothing! Her meds included Thoriziem, Zoloft and Aricept among others. Aricept, what was that for? No one said.

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I wanted a true diagnosis. I didn’t fill any of the Prescriptions. I did not feel it was responsible to do that until I knew what was going on. Until I had a real diagnosis, not something written as a formality so my mother could be dispatched from the mental institution.

Finding out the diagnosis was a journey in itself. After the Gracie Square Fiasco I was on a mission. I knew that my mother might have some paranoia and be delusional but I did not feel that that was the complete story. I felt that she was delusional because of some other condition. But I did not know what.

Her family doctor sent her to a neurologist who did some test. She questioned my mother. My mom forgot most of what she was being asked in between answering the questions. Finally after a couple of weeks of testing we got the verdict back. My mother was told she “had a little bit of a forgetting problem”.

Ok so let me get this straight a “forgetting problem,” leads to paranoia, hallucinations and me being accused of trying to commit murder. It was normal for elders with “a forgetting problem” to not remember their surroundings, their address and the fact that they have said the same thing over and over and over again. I wasn’t satisfied with that so I went to another doctor at Stony Brook Hospital on Long Island. He was very clear what my mother had. He said the D word and the A word. And he did not offer anything else just a diagnosis and scripts. I was happy because now I knew what was going on. But sad because now I knew what was going on. No one really prepared me for what this diagnosis could lead to.

Meanwhile back at Kings Harbor Medical Facility, my father was living paralyzed and speechless. He had had a major stroke and never recovered. He was in a home only because everything with him went down so fast I didn’t know what was going on. And he was quickly put into a home. Had I known he was going to die there alone, I would’ve bought him home immediately.

WHAT JUST HAPPENED TO MY FAMILY! GONE IN AN INSTANT!

My father died a death without dignity. I vowed my mother would not live her last years in a home.

When people mention caregiving the comments often go like this, “Wow caregiving is such a wonderful thing if you can do it. I couldn’t do it”. Now I realize that caregiving is not for everyone, and that we all make our choices but…. Yes some people are more suited than others to do it, but like every choice made, caregivers give up A LOT to do it. IT’s A BIG SACRIFIC. Many caregivers had successful careers and lives before Alzheimer’s hit. We contributed much to society. But let’s face it, there is nothing like taking care of your own. And it is often a solo act, and a thankless job.

I am tired of reading statistics about how Alzheimer’s is going to be epidemic by 2015. If so why does the average person who becomes a caregiver, always seem to not know what is going on, and what it entails? Why are caregivers routinely taken by surprise? Oftentimes it is really hard work to get correct information even from professionals. There needs to be a system set in place for family members to get support and an opportunity to understand more of what is going on. If Alzheimer’s is reaching epidemic proportions, than the information for caregivers coming from the medical sources needs to be much more useful and easily available. The Government and private agency’s need to step up for the caregivers.

And the law that just passed in New Jersey that requires families to nominate a designated caregiver and give them special training needs to be passed nationwide.

Did I mention I am seriously exhausted?

On one of the many emergency hospital visits in the beginning of this journey, the Dr. remarked, “Oh you must have 5 people dealing with this.” And I said “no only me”. He didn’t believe me. No one really believes me. Most people take it for granted that I must have a nurse’s aide helping out. But I don’t.

Now you may wonder if I have siblings why am I doing this myself. Well the short answer is that many people are in my situation. And often there’s one child in the family that takes it on. That would be ME!

Also Norma believes there is nothing wrong with my mother. As far as she is concerned, mom has always been wacky. In the beginning before the forgetful diagnosis, I had asked my sister, Delia in NY to watch my mother for a little bit. I was working on doing a presentation for the board of Ed. I wrote a play on voting and was trying to get it up and running. If I booked the job it would have been a pretty penny and had helped me get better medical care and other things for my mother. That is why for the first time ever, I asked my darling sister Delia, in NYC, to take care of my mom. She did, but then my sister Norma that lived in the Midwest came to visit and decided to take my mother to Iowa. Okayed it since I thought she was going on vacation, and it would be really good for my mother to spend some time with the family. I and had no idea that they were going to put her in assisted living behind my back. Why would they do such a thing?

To make a long story short my sister decided to keep her in the Midwest and emptied her bank accounts. Suddenly her husband, I can count the times I saw him in person on one hand, was making all the decisions for my mom. I don’t know about you, but I considered it a bit arrogant for a son in law, who was never involved in my mother’s life, to be making decisions for MY MOTHER. Especially since I had power of attorney and had been handling my fathers and mothers situations solo for years. WITHOUT ANY HELP FROM ANYONE!

The decision was made, my mom would be in assisted living in Iowa, and they would visit once a week. How quaint. No one took into consideration that Mita had a paralyzed husband back in NYC who could pass away at any time. Also my not knowing where she was for 9 days was very stressful, particularly because I had witnessed firsthand the progressive deterioration of her faculties and did not know if she was safe.

A type written letter arrived by Federal Express with the instructions on what was going to happen to My Mother. I was informed that there really was nothing wrong with Mita other than stress. “How would they know, they never spent enough time with her to know what was going on, in the first place.” And decisions were made, without my consent, by my sister’s husband. Did I mention I had power of Attorney? And they knew it. I did not know if I would ever see my mother again.

A couple of months later I got a call in the middle of the night from my cousin here in NYC. Apparently the assisted living where my mother was staying was trying to get in touch with a family member. My sister and her family had bounced to New Zealand and did not leave a forwarding number. The person making the rounds at the assisted living found my mother in her apt, apparently she had fallen and hit her head. They took her to the adjacent hospital but Medicare would only pay for a couple of days in the hospital. They did not feel good about putting her back in assisted living. They found my nephews number scribbled on a wall calendar. They called him, he called me. The nurse told me to come pick her up. That she barely had any food in the refrigerator. I went to Iowa packed her stuff up and came back to NY on Amtrak with my 85 year old mother. I could not afford the $2000.00 plane tickets. I took my mother to visit her husband Papi Tito every day that summer. Papi Tito died that fall on November 16. I don’t ever regret bringing her back.

My sister are convinced I am caregiving because I do not want to work. The other family members are Missing in Action. I am dealing with everything that goes on with Dementia. Including trying to figure out what my life is about. And my sister at 71 yrs. old, is still wondering why my mother was mean to her when she was a child. “Hey sis…I got real issues to deal with NOW! Vascular Dementia and Alzheimer are very in the moment. I can’t get caught up in what I didn’t get in my childhood. Every moment is a surprise. But hey Stress, can do that to you.” Did I mention that I am exhausted All THE TIME!

Actually I think that my sister feels great that I bought my mother back. She says she did the best she could. She can now justify that I bought my mother back so she doesn’t have to contribute anymore. She’s off the hook. Family is overrated.

Why do I do this? I don’t know, but I know there is no other choice for me. I saw my father suffer for 10 years and die a violent death. Perhaps that’s why. Or perhaps because I am a single Hispanic women, with no husband or children. My mother is the only thing I have left. Maybe, it’s a cultural thing, I am the youngest and a good Latina daughter….. Or because she is part of my DNA….I don’t know. But I know there is no other choice for me period. However it would be nice to have a helping hand every once in a while, especially from my siblings. None of my siblings have really showed any genuine concern for me especially through this whole ordeal. They barely call and they haven’t visited since my father’s funeral. They didn’t even come to our home after the wake. Papi Tito died 6 years ago.

Everyone Caregivers story is different. My Aunt Lucy had it and she was a pleasure to be with. She forgot things but she was kind and funny. I loved spending time with her.

I wish someone had sat with me and gave me an idea of what was happening. The only organization that truly helped was The Alzheimer’s Association and now AARP. I was able to get to understand a little of what was going on.

I need respite. Alzheimer’s is an expensive disease, and caregivers often have no income, so they cannot take a much need, well deserved break before they break, because it is too expensive to do so. Because my mom worked 47 years at Bird S Coler Hospital, and held other jobs she cannot get Medicade unless she does a pooled trust. The pooled trust doesn’t work for us. It does work for many people, so I would recommend caregivers check it out.

My mother is now in her 8th year after diagnosis. She turned 91 in October of 2014. She is doing well, considering. She still recognizes people has a sense of humor and loves to dance salsa. This is a lot of work. They say comedy is hard, Dying is easy. I say Comedy is a piece of cake next to Dementia. In between my bouts of exhaustion, in the rare time I get to wonder about myself at all, I wonder who

Am I? What will happen to me after this? Dementia is an expensive disease. Will I be left destitute? Not just financially. ..

I have tried, and am using many alternative therapies. I believe because I used allopathic medicine in combination with alternative therapy’s my mother has fared very well. Our path may not be for everyone but I am really satisfied at how these therapies have worked for us.

My mother is in many clinical studies at Mt Saini. I respect and love her doctors. As a whole the researchers are now moving towards prevention. And I can appreciate that, but I just want to say as long as there is no known cure for Dementia I will continue to seek out alternatives to help my mother. Ayurveda, Music Therapy, and Coconut Oil etc. whatever I can find. Dementia is a race against time and even placebos have their place.

The Dirty D word has changed me. My mother, my father, both my aunts have been impacted…

I use to be artistic, funny and by God, I was interesting. Now I hide knives, turn off all the gas stove, and sleep with one eye open to make sure no wondering happens. That’s when I am able to sleep

I urge all Latinos that are impacted by this to speak up! There is information and resources out there. If you see abuelito/a acting a little strange, putting his shoes in the refrigerator, yelling in the middle of the night or wondering, get him checked out. The earlier in the process that you know what’s up, the quicker you can attend to it. Early prevention is where it’s at. You can get on some of the drugs that might slow down the progression.

Talk…many people are affected by this you are not alone. Talk, Search, and Love. Because in the end Love is the major ingredient as to why my mother has lasted so long. We have to love Alzheimer’s to death. It makes all the difference. And Love includes taking care of yourself because if you fall they fall.

When people ask me if I have kids I say “no, I had parents at a very young age. Who I loved dearly. And I am the best parent I have ever met.” Peace be with you….. Peace and Love……

Alba Sanchez
Disclaimer: This is NOT a paid or sponsored post, it is me appreciating the resources AARP has to offer
Here Is The Link
Check out the Caregiver Resources –> http://www.aarp.org/cuidar 
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Just Another Caregivers Story