What's in a name?

 I’ve always hated my name. I mean really…when my mom and dad looked down at that sweet baby girl right after she was born, what did they see. A future wrestler? A future tennis star? A future rapper/inventor of headphones? A dreaded seal ( I hated when that movie came out).
Did they see the struggle and the teasing that was going to come along with leaving the vowel off the end of the name? The letter “A” could have saved me from so much!

I had been studying postmenopausal bleeding at Vanderbilt University School of Nursing when my mother mentioned she was having stomach pain and some spotting. I told her over and over again to go to the doctor. She didn’t. She just took 1 ibuprofen and said she was ok. One ibuprofen? Who does that?

By the time I came home for Thanksgiving break, her stomach had become swollen. By Christmas break, she looked as though he was 6 months pregnant. I would measure her stomach to see how much it had grown over night. Her doctor had given her Lasix (a diuretic) to remove the fluid.  A thoracentesis (a procedure to analyze fluid surrounding the organs) had been scheduled.

I stood with my mom as the procedure was performed. I literally was her support because her head was on my chest as they placed the needle in her back and drew out the fluid. Now remember, I was in school and I knew what needed to come out. I knew that I needed to see clear fluid come out into that syringe so that I could tell my mom that everything was ok… that this fluid was just temporary and not a big deal.  But that’s not what happened.

What happened was that cloudy fluid came out and I had to stand there with a stoic face knowing that my mom had cancer and not being able to tell her until her doctor told her and she told me. She finally told me and told me not to tell anyone else. That was hard.

She used to say, “there are 2 types of lies: omission and commission”. Basically, you are leaving something out or you are committing the crime. So here we were being liars through omission…even to my Big Mama. I am going to burn in hell for that one.

Finally, the gynecologist got back to her and told her that what they originally thought was a polyp had turned out to be a little bit of cancer. Who says a little bit of cancer? When you hear the word cancer, you go deaf. Everything was in slow motion. The doctor is talking, but it’s like the teacher on Peanuts…womp, womp, womp , womp, womp…

At the first surgery, my mom was in the hospital room. She pulled me close and said, “I want your face to be the last one I see before I go in and the first one I see when I come out of every surgery I have.” Uh, no pressure there mom.  I tried my very best to make that happen. I worked with my professors and was able to do my final rotation closer to home. I think I only missed one surgery but was there for the recovery.

When the doctors performed the surgery, the cancer was much worse than they ever could have imagined. It was in her cervix, the uterus, ovaries, and a fat pad in her stomach, part of her rectum and had spread like sand paper on the inside of her peritoneal cavity. That’s why she had so much swelling around her abdomen. The cancer was drawing in fluid.  After surgery, her stomach went down and she said she had gotten a tummy tuck and a six pack…pure foolishness. 

My mom was a fighter. She was one of the high school teachers that integrated Franklin County High School in Rocky Mount, Virginia. At her wake, one of her white students came up to us and said he owned his own business because of the things she had taught him. She changed his life. 

She fought off cancer for 5 long years.

She was funny. She told me that when she was little, she didn’t always stop to use the bathroom. A boy from the neighborhood would come by the house. “Mrs. Polk, I found Cookie’s panties again.” She would tell me this story and I would tell her she was just fast! One day she called me after a chemo treatment cracking up.  She said that she chemo makes her have to go to the bathroom and she could barely get there in time. “Andre, I threw my panties in the trash and came on out”.   We were both screaming on that phone! “Mama, you cannot walk around America without panties”.

She was my best friend. My mom was not my friend growing up. She was my mom and that was what I needed. As I went away to college, our relationship changed. She and I began to really talk. I talked to her about life. About God. About everything. I would talk to my mom about 3-4 times a day. She was my “lady”. I talked to her driving home from work and would tell her about my crazy patients. We would just laugh. One day, she said what would I do if I couldn’t have you to laugh with?

How does this fit in to taking care of a person with dementia? Well, before my dad had dementia, he had other comorbidities, diabetes, hypertension, hyperlipidemia, bipolar disorder, arthritis, dental disease, etc. My mom took him to a million doctors appointments each week. How many did she take herself too? None.

As care givers, we have to take time for ourselves, or just like my mom, we will leave others to laugh by themselves.

I am a lot like my mom. I am a fighter, funny, a friend and I lose myself in taking care of others.  We have many similarities and I do not want one of them to be a lack of taking care of my health. 

My mother and I have helped each other through many things in life. We held each other up. Not to sound cliché, but she was the wind beneath my wings. 

What's in a name? That which we call a rose 
by any other name would smell as sweet?

What ole Billy Shakes is saying here is if we called a rose something else, isn’t it going to smell just as nice?

 If I had another name, would I be the same person that I am today? I don’t know. The teasing has made me stronger, smarter, quicker and funnier. 

Andre means manly, brave, or a famous bearer; a person who carries or holds something.

I used to hate my name.

My mom’s name was Delores Andre

I am Andre Lestina

I carry a part of my mom with me every day. OUR name.

Introduction

Will Smith said it best...
"This is a story all about how my life got flipped, turned upside down. I'd like to take a minute, just sit right there. I'll tell you how I became..." hold on...not a prince of a town called Bel Aire. A caregiver of a little old 81 year old Guyanese stubborn little man... who everyone falls in love with, but can be as mean as a snake!

Yep, after my mom passed away quicker than I ever expected, I became the power of attorney for my dad. Not only did I become responsible for his medical and financial affairs, but I was also responsible for taking care of him. I knew that he had been deteriorating. I knew that he had become depressed and somewhat incontinent. But, he had given up on life. We had both lost my mom who was a huge part of our lives.

Let me back up a little

 My mom had been diagnosed with ovarian cancer in 2008 and had died suddenly with complications of c-diff in May. Prior to that, my dad had been a pastor in the AME Zion church for over 60 years. His church had been taken away (long story short) due to politics. He had gone into a deep depression. Preaching was all he had known. Having his church taken away plus my mom's illness was too much. Sometimes life's stresses can induce dementia... or at least speed it up. AND it is hard in the elderly to tell the difference between dementia and depression. Plus my dad shakes and shuffles so I think he has Parkinson's too! The diagnosis has been hard to get. I am being sent around and around to get the proper diagnosis. I'm actually still working on it.


Back to the story

The first few days were so hard for the both of us. My dad had not gone to the hospital to see my mother so the first time seeing her was at the funeral. He was so sad. After the funeral, he had a hard time remembering that she was gone. We placed a picture by his bedside for him to look at. He thinks that I am her a lot of the time and that is hard for both of us. My sister and I remind him that I am not her and that she is gone and that starts the grieving process over.
Then there's bath time. Here is a secret about me. I am scared of dentures. I am not sure as to why, but they creep me out. My dad has dentures. The first time we did bath time, he had trouble getting them out! Oh, the horror of us trying to get those slimy suckers out of his mouth. We did it. I'm still not 100% over the fear, but I have had to forcefully stick my hand in there and yank those suckers out!!!

A few weeks after my mom passed, my dad and I really got into it. Sometimes people with dementia can be very mean. This had been going on for weeks. He had been yelling at me almost daily. He was in an angry state and I was helping him get out of the bath. He was getting cold and yelled "You call yourself a nurse, you little piece of shit". I had enough and yelled back "If I am a piece of shit it's because I came from a big piece of shit named William Douglas. That's you! You old shit!" He looked at me in shock. I have never had a problem since that day...well not like that at least. I think he is somewhat scared of me...

The purpose of this blog

The purpose is just to post some encouragement to those who may be going through what I'm going through and to provide a little comic relief. When dealing with dementia, you have to figure things out and find ways to cope. Mine is humor. When my sister and I first started this journey, we ate a lot of fast food. We would ask my dad what he wanted to eat. He said I really like those salmon rolls we ate yesterday and that tomato juice to drink. We would not know what he was talking about. For a week, we tried to figure out what he was talking about. Finally, one day as we were eating, he told us he loved these salmon rolls. Turns out they were chicken burritos from Taco Bell and the tomato juice was Simply Lemonade Blueberry. Whenever he had a sad day, we made sure he had that for dinner.
I find myself checking on him while he is asleep and making sure he has his hat before he leaves the house. But he isn't my child, he is my father...the one who used to take care of me. This has been one hard transition. Won't you join me on my journey?