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.

Day 32: Exhilaration to Frustration

If you noticed that I have not posted anything in two days, I apologize.  This is one of the things that happens when you take care of someone else and get very little sleep.  You also live in a constant cycle of going from exhilaration to frustration and everything in between.

I believe caretakers of loved ones with Alzheimer’s are in a unique position to understand people with bipolar disorder.  This is not a joke or a statement that I make lightly so before you start trolling me, I would appreciate it if you actually got the entire thought process.

I have a family member that is bipolar.  It took a while before this person was diagnosed and the mood swings alone were not fun.  There are other things that come from being bipolar.  The depression, the moments of mania, and all the other things that happen make this particular condition seem so familiar to people like me.  I am sure that there are caretakers that are also bipolar and think I am making a joke or making a crazy comparison.   I will say this.  When I have days like this entire week I think I can understand what a person with this disorder experiences.

The best example was Wednesday.  I got a nurse to keep an eye on my mom for four hours.  Usually, we run errands when we have a paid caretaker.  I have even started thinking that I am going to start having my groceries delivered by Blue Apron or Home Chef or whatever company is out there, just so I can actually enjoy my family’s company for those precious hours.  The thing is that on Wednesday, my daughter and I went out for a little while and were recharged with energy.  Then, at about ten at night, my mother starting throwing up and complaining of abdominal pain.  We took her to the ER.  I went from planning the rest of my week and thinking I was going to get some things done to sitting in an emergency room feeling sorry for myself.  Then I found a support group on Facebook and started talking to them.  That gave me a little ray of hope.  By the time I got home it was 2:15 AM.  I fell asleep fairly quickly.  I woke up a few times, and then finally crawled out of bed at 11 AM.  No, I am not exaggerating.  I don’t know if it was the stress, the time of the month, the bed or what, but I could barely move.

The thing is, every time I have been able to create a new normal, and I think I figure it out enough, something happens and I go back to square one.  I see how other people cope with their situations and I honestly don’t understand how they do it all.  Seems impossible to me that you can have productive work, a clean house, a healthy lifestyle and take care of your loved one all at the same time.

The advice from the group is comforting.  Most of the comments focus on taking it one day at a time (sometimes one minute at a time).  I don’t know that I can do that and keep my sanity.  I’m the kind of person that likes to make a list and check things off.  I like to have an idea of where my life is going and what I have to look forward to.  Right now, the only goal I have in life is to get a decent night sleep.  One.  I don’t even expect to have two or three, I settle for one.  If I keep sleeping during the day I waste all those hours I could be using drumming up business.  That is not to say that I don’t take advantage of the hours I spend awake at night watching over her.  I do most of my social media and some housekeeping (paying the bills, organizing documents, coming up with ideas for projects I have planned) while I wait for 3:00 AM.  Usually, when she wakes up a million times, she sleeps from 3 to 7 and I can get a good four hours of sleep myself.

I’m not telling you this to scare you from taking care of your loved one or to gripe.  I am letting you peek into our lives because I think it is important for all of you to know the good, the bad and the heartbreaking moments we live as a family.  This woman gave a huge chunk of her life to raise four kids.  Two of those kids are no longer with us.  It falls to me and my sister to make the necessary arrangements to make sure that she is OK.  I volunteered for this mission knowing it was not going to be easy.  If I am honest, then I have to admit, I had no idea how hard this really was.  I’m pretty sure it is just as hard as raising a baby, only this is not a baby and when she does not like something she talks back and you have to remember that she does not mean anything she is saying because she (the mom you know) is not there anymore.

My mother does not like to be told what to do.  When she does not get her way, she pouts and says she wants to go home.  She still thinks her parents are alive and well living in her hometown.  They died more than 28 years ago and the house no longer exists.  She knew this in another life.  She acts like a nine-year old and many days she does not remember my dad.  I have to keep telling myself that she is not really mad at me.  It still hurts when she says those things.  I know she forgets them five minutes later.  I know I should too.  Some days I can.  Some days hurt more than others.

Tomorrow, I will probably wake up feeling great and thinking that the worst is behind me.  Some days that will be true and others, it will be wishful thinking.  Now, if you will excuse me, I am going to post in my support group how people do this because I really don’t think I am doing a good enough job.

If you have any suggestions, make sure to leave them in the comments below.