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 34: Taking Care of ME

After weeks of complaining of feeling bad and thinking I need to fix this and then going back to my chocolate and soda, this week I decided to try something new.  I am now making one decision at a time in the process of taking care of me.

What do I mean by this?  Well, to give you an example.  It is sometime in the morning.  I am hungry.  I have all the ingredients to make a fabulous smoothie or I can have a bowl of chocolate cereal.  I grabbed my bullet, stuffed it with fruits and coconut water, some superfood chia and hemp seeds, some coconut flakes, and off we went.  I’ve had one of those smoothies every day since Sunday.

Another example of making decisions happened yesterday.  We had been making simple dinners because I am not organized enough to pre-plan my weekly meals yet.  However, yesterday, I did not feel like cooking, or cleaning the entire kitchen.  The solution?  We ordered online and picked up some Crisper’s.  My choice?  Caribbean Crab salad.

I have an alphabet of conditions from sinus infections,  to IBS and everything in between.  Making one decision at a time has allowed me the luxury of an entire week of relatively no flare-ups, and when I did have some issues, they lasted hours, not entire days.

So what is my next decision in taking care of me?  I want to get to the point where we cook at home every day and plan the week in advance.  I am not there yet.  I admit, planning things in advance is not my forte.  But little by little, I think we will get there.

One last piece of advice?  DO what works for YOU.  Whenever I write and tell you what we do in our journey as Alzheimer’s caretakers, I am giving you what works for us as an example.  I don’t know if what we are doing is going to help you.  I can’t guarantee it will.  I can tell you that it works for us.  If you have been doing something else and it has not worked, maybe you want to give our suggestions a try.  It does not hurt to try something new and maybe it will inspire your own solution to your situation.

Have any advice on the food front for those of us struggling with keeping it healthy?  Leave your options below.  Don’t forget to share this message and subscribe.