January 2017 is All About Possibilities

Welcome to 2017. January 2017 is all about possibilities. What does it mean to you?

To us, it means looking for other options for treatment and cures for diseases. It means looking for other ways to support all caregivers in their journeys. It means bringing you information to keep you motivated, alert, alive, healthy and to keep you current on what to expect for the new year.

This blog is not interested in politics. However, if a politician finally helps us with any legislation that will make the life of our loved ones better, I will be sure to talk about it. If we need to start or help a petition that might make our struggle less severe, that is where our efforts will be.

So, let’s recap the first two days of the year. We discovered that certain medical, physical conditions, have an impact on my loved one’s mood. There is a possibility that medication will improve that situation. We will keep you posted.

In the last 36 hours, my aunt passed away from complications of lupus (and possible signs of AD), the year started and we started working out. We consoled several friends that have seen their loved ones move on. We offered support to those that are experiencing changes in LO (loved ones) behaviors. We also started including work out in our daily schedule in the hopes that we keep them going. We have decided to take on a new philosophy about life and death: they are just two sides of the same coin and we need to be selfless and let our loved ones transition however and whenever they see fit.

2017 is all about possibility. Do not let the true negative people affect your well-being. What do I mean by that? Not all complaining is negative. If your LO is in a facility and you complain about a CNA, that is not negative. It is a necessary part of the process. If you are at work and see something wrong and know some options on how to fix it, complaining, done the right way, is not only positive, it could be a game changer. People that don’t want to listen to complaints? Those are the negative people and we don’t have any space for them in our life now.

So what are your possibilities for 2017? I can’t wait to find out.  While I wait, I leave you with a motivational video I found on YouTube to start your new year in the right direction.

 

Last Post of the Year

My father passed away 11 months and 14 days ago. The only silver lining on his passing was that I no longer had a censor on social media. It is not that I was afraid of him as a parent. It was that I know he was set in his ways and I did not want him to worry about me. Still, there were times that I posted things that would terrify him.

Imagine my surprise when on December, his birth month, several people I know personally have started making comments on post about what I should and should not say on social media. Ironically, on my daddy’s birthday, I have something to say about this.

1) Do not expect me to conform to your way of seeing the world. The same way that you don’t want people telling you what to do, who to believe or what to believe in, I expect the same consideration. I am who I am. I don’t like using dirty words online and I have no problem saying them in public. I am overweight, overtired and smarter than average. If you don’t like me for who I am, I am sure you have plenty of people around that don’t like you either. You can always unfriend, unfollow or just forget about me. There are seven billion people in this world. I am sure I will make new friends.

2) I don’t care for what corporate America thinks. My father, my sister and most people who work in corporate America, cringe when I say something bad about a particular company. Funny how they don’t notice when I say good things about other corporations. I have a voice, I am going to use it. Most importantly, if there is any doubt around, I am a firm believer in capitalism. I believe in not shopping where I don’t care to shop. I will often criticize what I think is a mistake by any corporation in the hopes that someday they finally learn that the reason why many are going under is because they have made short-term gain a priority and if they don’t look at the long-term, they will end, just like Sports Authority, Comp USA and many others before them. I also believe that if a corporation wants to tell me how to think and what to say, then I have a right to do the same about them. For example, if I decide to go back to corporate America, I would never sign anything that says I can no longer state my opinion online. For one thing, I never post the name of the place I work for unless that chapter of my life is over. Second of all, it is nobody’s business what I have to say about anything. Third, my handle is rarely my name and there are plenty of people in the US with my name. If a CEO of a company can email his employees telling them that they should not vote for X candidate because that candidate wanted to start a universal health plan, therefore influencing his thousands of employees to vote a certain way, then I have every right to say that I don’t like X company because they don’t sell organic products. Let’s keep this straight. The days when companies were loyal to their employees are over so telling us how to think is now harder than ever. And just so we are clear. If any family member of mine is fired or asked to interfere in what I write, what I support or what I do with my life, it will be a thrill to see them in court. I have lived all my life in fear. That part of my life is over as the end is closer than the beginning and I now see that living in fear is such a waste of energy.

3) Politically correct is not the same as abusive, insulting and offensive statements. Having said that, I have never said anything offensive. I have stated my truth to the best of my abilities and for that I will never apologize. Unlike poor Steve Martin, who called Carrie Fisher beautiful and was bashed for it, I will not take anything back, especially when I am not insulting the person I am saying it to. If a third-party feels offended, they need psychological help because they should mind their own business. That does not mean that you cannot state your opinion. You have every right to say how you feel, especially when it is something that was stated publicly. Where this goes south is when people decide to bash, demean or insult the other person. We are now in a society where people confuse opinions with facts, and where we lost respect for other people’s opinions. We need to stop this before nobody can say anything because it will offend someone. And the offended people need to stop being so defensive.

4) We have created an environment where social media is only permissible for good news. If people share their engagements, marriages, children, promotions, etc. it is OK. However, when a person decides to share their struggles, their divorces, their miscarriages, cancer or any other reality of life, we are frowned upon and told that we should not share our private life. The last time I looked, marriage, children, promotions and all the other things were part of private life as well. Life is not all ice cream and chocolate. Believe me, if it was, I would be first in line. The reason why social media studies harp so much on the levels of depression generated by “social media envy” is because people are more interested in being liked than they are in being real. Where is it going to end? The saddest part of this is when you read stories of suicide victims. You have a family showing you their college kid’s profile on social media as they tell you that they had no idea that their kid was going through hell. You listen to coworkers of someone state how this person seemed so normal on Facebook and yet they were so desperate for attention they bought a gun and proceeded to shoot ten of the people they worked with. People are ashamed to tell their truth. We are scared to say when we are scared, sad, depressed, lonely or overwhelmed. We live in a society where “negative” feelings are to be avoided at all cost and medicated whenever possible. I have news for you. It is normal to be sad, it is perfectly OK to feel lonely, and there is nothing wrong with feeling overwhelmed or pathetic every once in a while. Having feelings is not positive or negative, what actions we take based on those feelings can have positive or negative impact. There are people around that will not judge you if you are sad and many will love you in spite of having down days.

The reality is very simple. I know most of the critics love me. But they don’t know me. They think that, because they have been in my life for twenty, thirty or all 50 years, they know me and they know what is best for me. They are wrong. If they were right, they would know that when I tell you that I don’t want your opinion, I really don’t want your opinion. If they really knew me, they would know that at this particular point in my life, I would rather declare bankruptcy than go back to a corporate job. Nothing wrong with people who want to work at a job. Me? I feel like I gave up who I was to try to conform for twenty years, mainly to make my dad happy and help put food on the table. I’m done with that. I am now following my truth. Will it be hard? YES. The funny thing is that because I am 50, finding a job in corporate America right now would be harder than succeeding by myself, so I might as well give ME a chance.

Live your truth people. If you don’t, one day, you will meet your end and you will find yourself crying for everything you did not get to do. I have no intention of doing that.

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.