Day 39 – The Paranoia of the Caretaker

 

The final trailer for Fantastic Beasts came out today.  Harry Potter books and movies have a very special meaning to my 3 1/2 member family unit (the 1/2 is my four-legged child).  I taught my daughter to love reading with those books.  When she was about seven, I started reading the first one, one chapter a night, when it was time to go to sleep.  We were living in Puerto Rico at the time and I did not want her to forget English (she was born in the US).  I also secretly hope that the books would have the same effect they had on thousands of children here and she would get hooked.  By the third book, she was sneaking readings of two and three chapters during the day while I was not looking.  By the fifth book, we were buying them at midnight on the appointed night and by the time I had finished the 40 minute drive from the bookstore to my home, she had already read half of it.  By the end of the next day, she was done.  The day after that, I had finished.  My hubby would take a week or two after that.  We all read the books, we talked about the books and it was tradition to watch EVERY movie on opening night.  It was fun times and bittersweet when it was over…and then it was not thanks to this new one.  I watched the trailer and started crying because the paranoia of the Alzheimer’s caretaker is that one day in the next 30 years, I will also forget all of this.

Maybe if I write about it I will store it in a different part of my brain and not forget how nice it felt to have something in common with my child.  I was the mean one so it was great to be the cool one who could read the book as fast as she could. Yes, they were years when we actually counted how many exact hours it took us to read it.

I don’t want to forget any of it.  I don’t want to forget how excited she was when I would come to her room every night and read to her.  I don’t want to forget the look on her face of sheer triumph when I finally realized that the book was not making any sense because she was reading chapters behind my back.  I don’t want to forget all the premieres and the trials and tribulations to be able to make it to the theater in time to watch it.

I call it paranoia because, even though the experts say that the disease is not inherited, my mother’s aunt had it, her sisters had it and now she has it.  My odds are not exactly great.  I am paranoid because it is said that only 5 million Americans have dementia.  If there are 324 million people in the US, that is less than 1% of the population.  That would mean that the odds of me knowing someone else who is struggling like I do is very small (unless I join support groups online and off).  I am surrounded by friends with family members who have the disease, sometimes both grandparents or parents.  Seems to me that we are covering up how bad the statistics really are for this disease.

I already have memory issues.  It has been a long eight months and the lack of sleep does not help anyone.  I can read and find all the resources to make sure  I avoid getting this disease.  I can pray all I want.  That does not change the odds against me.

What am I going to do?  I’m going to start some scrapbooks with words a five-year old will understand.  I am also going to put everything in English and Spanish.  Why?  Because Spanish is my first language and my mother is the perfect example that many patients forget the secondary language when they are moving towards the sixth stage.  I’m going to do for me because I don’t have time to waste looking for somebody to bless me while I deal with this craziness.

What do you think?  Leave your comment below and share with others who might feel the same way.

Day 36: The Walk


 

 

One of the most important aspects of my journey as a caretaker is the need to stay in shape.  I am not.  At 250 pounds, I am twice the size I should be.  It is more about not exercising than eating but the end result is the same.  I’m fat.  There is no shame in that.  Life happens and some of us deal with it by eating ice cream and not exercising it off.  So I decided to do the walk and benefit others while I get in shape.

It was my first official Five K and it benefits the St Jude Children’s Hospital.  I finished it in about an hour and twenty minutes.  I was exhausted, I was hungry and I cannot wait to do it again.

The thing is, I don’t know how many people were there that day.  I do know that we were cheering each other on and raising $100k for charity and that feels fantastic.

I sent a couple of FB Live videos during the event saying what I am about to say to you now.  On October 15th, we have the Alzheimer’s Awareness walk.  I am already registered for that one too.  The deal is this:  find an event near you that speaks to you and go ahead and do it.  It is a great way to do well while doing good.  You will feel amazing.

The walk was on Saturday and I am not going to lie.  I could not walk on Sunday and today I am back to my walking routine.  It is doable, one step at a time.

What causes are of interest to you?  Leave us your comment below.