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 33: The Toll on Families

I belong to several online an offline, formal and informal support groups.  Obviously, I would not share any person’s life or circumstance without their permission.  I share my story because it is exactly that, my story from my perspective and I own that.  When people tell me that I am misinterpreting something or that I take certain things too seriously, I remind them that they are not in my head or in my experience and they need to keep their opinion to themselves.  Their opinions are based on their experience and their head, so it has absolutely nothing to do with me.  I will say, that one of the things that I see the most, and that most books don’t emphasize enough, is the toll on families from taking care of a loved one.

Let me set one scene for you:  you have a family with several children.  There is always one family member that takes care of the loved one, there is one child that helps and there is always one family member that seems to stay away.  This will, no doubt, cause resentment with the person taking care of the sick person.

There are some that say that the one that stays away does not have the stomach for it.  Well I have news for you.  If you would have asked me a couple of years back if I would volunteer to take care of my parents, watch my dad die and be a witness to my mother slowly losing her mind and all her faculties, I would have said NO.  And now, here I am.  So for those people who think they don’t have the nerve to confront the reality of their loved ones, either grow a pair or go away.  You have nobody to blame but yourself if you did not make an effort.

Now let me set the second instance of family trouble:  You have a family that takes in a person that has a terminal disease.  The family has to completely change their lives and routines to help this person through that process.  They do it with all the love in the world…and then pressures come in.  From missing their old lives to having nosy family members barking orders, and everything in between.  This is my advice to you if you know somebody going through this:  keep your advice to a minimum and just ask how you can help.  Sometimes these people just want to vent, others might need to get out for an hour.  Your opinion does not contribute anything.  A shoulder to cry on, a person to hang out with, even if all we talk about is the struggle we are going through, or just a little help hanging out while we clean an old closet, are worth a lot more than your ideas or opinions.

Those of us who are taking care of a loved one feel very isolated.  We see everyone else moving on with their lives while we are stuck on neutral, or seemingly on neutral.  We can no longer do any spur of the moment things.  Every outing, every party, every event has to be planned weeks, sometimes even months, in advance.  You might think nothing of asking us to go to your house.  We have to pack, plan, prevent and ensure for the health of this one family member.  As much as we appreciate the suggestions and the fact that you care, we really can’t just get up and go.  And sometimes, I admit, we are just too tired to want to do anything.

I have not even talked about the most important toll this disease takes in families.  In my case, this is my mother.  I feel absolute responsibility to keep her healthy, clean, fed and taken care of.  There are hundreds of decisions to be made daily.  I am averaging four hours of sleep and I cannot tell you when was the last time I had a full check up.  My daughter comes and helps.  She is also averaging four hours of sleep a day.  She works and has other interests.  My husband works and has other interests too.  We are all exhausted, burned out and just plain tired.  We argue, snap at each other and have entire days when we barely speak to each other.  After a few days of this, we will talk, cry, bitch and mope.  Funny thing about the self-help movement is that the one thing they tell you is not to dwell on the bad stuff.  Guess what?  If you don’t talk about it and share your feelings with people who are going through it, you will end up sick or worse, you will stay mad at those who live with you.

In the end, we let all our frustrations out and we continue.  The one thing we all have very clear is that this is not her fault.  We don’t blame her, we don’t get mad at her.  We don’t always know how she is going to react to different things and we try to keep our little tantrums far away from her.  We want her environment to be cool, happy, funny and light.  That is the most important thing.  In order to achieve that, some days, we have to make great efforts and that takes a lot of time and energy.

If you have a family member taking care of a loved one, don’t think you know what they are going through.  You don’t.  In fact, as much as we compare notes, none of us caretakers know exactly what the other ones go through.  Every situation is different.  I have friends who have a family member that no longer speaks.  I know one person whose loved one thinks it is cute to poop in public.  I don’t know what that is like.  I can imagine and I can give her a shoulder to cry on, but I really don’t know what she is going through.  We all have struggles, even when we are not the one taking care of a terminal patient.  You can let your friend know that you support them.  Don’t ever tell them you know what they are going through, because you don’t.  More importantly, you don’t know how they are going to take it.  I have a friend whose life partner is very ill.  The other day she got upset because someone made a joke about going into a “coffee coma”.  Now I don’t find that phrase particularly offensive.  My girlfriend was livid because her loved one has been in a comma twice.  I personally have no problem if somebody says that in front of me.  She does.  My brother was in a comma before he died.  Then again, it did not affect me the same way it affected her.  That is the key.  It is not just that you don’t know exactly what they are going through.  It is also the fact that two people can react completely different to the same situation.

Unless somebody asks for your opinion or advice, keep it to yourself.  I think it is cute when somebody tells me what to do.  The last time I looked, there are three people and one dog looking after my mother.  All three of those people have other responsibilities that also need to be taken care off and that we cannot forget.  Your two cents on how to save time, make money, deal with situations, is not needed at the moment.  So why are you trying to tell us how to do anything?  Did we ask?  Do we care?  It is very easy to come from the outside and think you can handle this.  I can’t help but notice that you are not dealing with this so you have no idea what the day-to-day is like.  We understand you have good intentions.  Intentions do not give me an extra hour of sleep or take the stress of this life any easier.

So in summary, I give you three pieces of advice if you have a friend or family member taking care of an ill or terminal loved one.

  1.  Grow a pair and help out.  Don’t just visit once a month or a few times a year.
  2. Don’t offer advice unless you were asked for it.
  3. Volunteer a shoulder to cry on, an hour of your time or your presence.  Ask “What can I do to help?” and actually do it.  This, my friend, is worth more than anything.

For all of you caretakers out there, I can understand your frustration.  We are all on this together and we can help each other, and all those around is, understand what this is like.  One step at a time, one post at a time, we can let them know what this is like and how they can help.  We cannot assume they know because most people don’t.  If you have any other suggestions on how people can help you deal with taking care of a loved one, leave your comment below.  If you know someone who is going through this, share our story.  Hopefully we can help.

(This post was inspired by an anonymous person who posted on a support group about their feelings on family dynamics.  It is meant to provide some guidance to those who are not in this environment and have no idea how to help a friend or loved one carry this load).

 

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.