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 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).