Who To Love

I write to sort out my thoughts. I also have hundreds of entries that have never been posted for that very reason. This one is one that I have been dealing with but not knowing if I should write something just for me or if it should be shared. I decided on the later because of how much it is really touching my life.

My uncle has ALS. He is entering the final stages and it is ripping me apart. This week the dreaded day came where I went to visit and he did not wake up, he was not alert. I know he will be again, but the day approaches where I he might not be responsive. I have been tracking his deterioration mentally for a couple of years now with percentages. His upper extremities are at 0% now, even the side to side wiggle he used to do with his fingers is gone, his legs are now bellow 10%. His head remains the most active but even that is hard to gauge now. He seems depressed, he seems angry, he seems to finally be losing it and wants to trow himself from his bed.

To say that this is hard to watch is a understatement. The side story is the one that comes with a lesson.

I did not know that one of the big decisions with ALS is “vent or no vent”

I was aware of the whole feeding tube part, but did not realize that there are more tubes involved as well. And with no living will, things get a little trickier… OK a lot more complicated.

Let him die with dignity… and I guess that means him not knowing what he has and keeping the hope alive that he will get better.

True to my black sheep persona I was alone in team reality for 2 years. People started coming to my team little by little until there is only 2 people standing on team denial. However, one of those people is the decision maker that is pushing for extending life as long as possible.

My first big blow out came after the long hospital visit where he was outfitted with is trach and feeding tube.

Me: We need to start thinking of next steps, palliative care, I don’t want him to suffer.
Denial: Don’t even mention the word death in front of him.
Me: We cannot ignore it he is going to die.
Denial: I forbid you from even saying that word in front of him.
Me: He is not going to ever eat again, or more than likely even talk.
Denial: I have been the one dealing with those things and I will keep him alive as long as possible.
Me: That is no life, he stopped living the day he asked me what he should do. I have been dealing with the reality that he will die since that day.

… then I walked away, I felt the anger rising, I felt the rage just boiling over… I felt powerless… I cannot fight the disease, I cannot fight the person that is going to keep him “alive.”

And here is where the title of the post gets tied into all of this. Nobody knows what goes on in the middle of a relationship. You only see glimpses. Actions do speak louder than words… and I have seen a lot of actions lately, actions against a person that is almost completely paralyzed and cannot walk away anymore.

The first one came some months ago. One of the many extended family friends that stepped out to the plate to take care of my uncle at night decided to not do it anymore. It was not because he could not take the burden but because every little thing seemed to set “denial” off. “Denial” will then spend the rest of the night arguing with my immobile uncle about, money, or family, or past transgressions. I wish that was the first glimpse but some years back my uncle took a “sanity” vacation away from it all. The fact that he used to have to “sneak out” to visit family was always a clue, but from my black sheep point of view I could see how that seemed at least logical… trying to keep the party in peace.

One of my uncle’s saying resonates strongly with me… “Love does not last in an empty belly.” I used to take it as an encouragement to always be a good provider. Now I doubt that it meant that to him… I have more questions than answers, but he is not able to communicate as before and I wish I knew so much more than I do… in my eyes, love would foster compassion, and may actions right now don’t seem to be about compassion.

You have to be very careful about who you end up with, you never know who will be making decisions for you. Write a living will, know how that other person would react. I used to think that being a caregiver for your spouse was a given, but not everyone is equipped emotionally or physically. The last 2 years of seeing my uncle like this have really made me evaluate my life and what I want from it. It is not just about who to love, it is also about who truly loves you.

Villain vs Victim

When I have a lot on my mind, the best way for me to deal with things is to write about it. I share it with others in the hope that it might help someone as it helps me to put my thoughts in order.

My parents got a divorce when I was in my early 20s. It has been one of the most difficult things that I have ever had to go through. I did not realize back then how much it affected the next 5 years of my life. For me, family was the most important thing in the world and in one short week I went from having a family (dysfunctional, but it was my family) to being on the street and looking for a place to live.

Even as a quasi-adult, being a “kid” of divorced parents was hard. The first thing that happened was that you had to “pick” sides. I did not feel like I picked sides at all, but then I started to understand that there is a whole villain vs victim mentality that would become a theme every time that a divorce happens.

“OMG SOMEONE HAS TO BE BLAMED!”

It still pisses me off to this day that every conversation about the subject has to have a quick discussion about who is the one that “fucked up.” Sure, everyone draws lines in the sand and some people have the talk about 50/50 but in reality there is never a villain and most of the time there are only victims.

This post does not dismiss the fact that there are relationships where one of the people is mentally or physically abusive to their partner. Those are valid reasons to leave. It is not that simple though, and I have a huge issue with the whole “you decided to leave” mentality.

The one that is “left behind” is the one that suffers. It is a short-sighted view that assumes that the other person does not feel. Don’t get me wrong, there are a lot of people in divorces that really had no clue the other person had already moved on emotionally and are surprised. Getting into a routine in a marriage is quite easy and, eventually, monotony can set in. Divorce can be a surprise to one of the parties, but that does not automatically makes that person the “victim.”

I know in the divorces I have been closely involved with both parties knew that something was wrong for a long time. Sometimes steps were taken to correct those things, sometimes steps were taken to ignore those things. In the end it is seldom, at least in my experience, that divorce comes as a total surprise.

I have my own rejection issues. I don’t let those cloud my judgement though. The person that does the dumping is no braver or more victim in the situation. Being the woman in the relationship does not automatically make you the victim either, yet a lot of people think that way.

Trust me when I tell you that the feeling that someone chose something else, alcohol, another person, a job, a lifestyle over you does not make it easier to dump that person. In my experience at least it took a lot of thinking and trying to make things work before the decision was made. I know with my parents they tried for years to make things work, made many changes… heck even a move to a different country made things hopeful, but what is not meant to be cannot be changed. Specially not when both people are not committed to the change or making things work.

Without getting too personal about my parents divorce and from knowing both of them my whole life, their relationship was doomed from the start. It was not a relationship based on mutual trust and it created tons of issues that continued to escalate during the 20+ years that it lasted. While you can say that lack of communication skills might have contributed, they were just really not meant for each other.

Marriage is work, but it should not feel like work. The work that you do should be done gladly. You should be able to do the things you need to do to make the relationship successful, not just because you’re expected to, but because you want to.

I see what my Mom has now, with the love of her life – they have been together for 8 years now, they have never had a fight, they are still in love like they used to be the first day. That gives me tons of hope. It makes me think that some day I can have the same thing in a relationship. It makes me long for what they have. It really makes me realize that I am not stupid for wanting to be happy every day, that it is possible, and that the person who deserves to be by my side for the rest of my life, is someone who finds that desire endearing and not foolish.

I wish everyone involved on that situation could have had the same happy ending. The more I live, the more I see that it is truly a personal choice to reach that level. You cannot make others happy… I keep saying… it has to come from within… and life keeps on lashing me with that thought over and over.

With what I am going through myself now, I am not interested in being the villain or the victim. I am not interested in rehashing the past 2 years or even the past 6. I am only interested on moving forward and learning from this experience. I know I did a lot of growing the last couple of years and I know I am better person because of it. I know what I want and don’t want out of my life. I know that to be happy I have to be around other happy people. I have taken steps towards that in many ways and it has improved my life a lot.

*This is my blog and I reserve the right to delete any comment that I find to be not of my liking. Just letting you know before you state your “opinion.”

When do I go home?

I thought that looking at an adult and hearing them ask you a question like you should have an answer was difficult. You know what sucks even more… when that adult is now almost completely paralyzed, cannot talk because he just had a tracheotomy and all he can do is mouth “When do I go home?”

ALS sucks. No way around it. You can curse the disease all you want, it simply does not go away. It ravages the body leaving most of the mind intact. As a bystander to the process it really changes you. It makes you see who really is equipped to deal with life and who simply waits for others to take charge. I never thought it would be this hard to make people make decisions… decisions that should have been made long ago. Nobody plans for stuff like this, but they should.

Do you know what DNR means? would you rather be cremated or 6 feet under?

It sucked last November to decide details on the fly for my family. Not only were we mourning the loss of a loved one, there were decisions to be made, phone calls that needed to happen and also money needed to take care of stuff. Death is not cheap.

You would think going through this would make us as a family more aware of being prepared, having frank conversations. Not really. We are still divided on decisions about level of care. We are now basically doing a lot of guessing between what is best for the sick one… what would he have really wanted? is he all there? How long do we hang on.

I cannot answer that question for him. I try to soften the blow by letting him know they still have to try to get him a little better before he can leave. I also tell him that home might not be an option anymore and a specialized clinic is the next step… codeword nursing home/hospice… is it a white lie at that point if the place does specialize on ALS?

I would love to take him back to his home and have him die of “natural” causes. Is that what he means when he asks “when can I go home?”

I wish I knew, I wish I had more answers, better answers… better yet, I wish I knew what his true feelings were. Not sure if the deprived of oxygen still drugged up version of him would think the same as the healthy, vibrant person I remember.

I hold his hand, make every stupid dirty joke I can think of to make him smile. But dam, I never knew a simple question from one of the adults in my life asking me “when do I go home?” would hurt this much. I do hope you are comfortable the remainder of your days, I will do my best to make sure you have the proper care. I am sorry I cannot do more. I do hope you get to go home soon.

I Know You Hate Me

As much as some people would love a nice chunk of drama, this is not it. My life is surprisingly free of it. I guess the changes I have been making do make a difference. The moment you remove the noise and listen to the well tuned airwaves things seem to get pretty clear. This post is a little different, it’s more of a series of thoughts that have been floating in my head. I’ve had tons of crap floating in there lately. Some of them have to do with the terminal illness of a loved one and not really knowing how to cope with that.

This part is personal… very personal. So much so that even as I write it I wonder if it is mine to tell or not. I just don’t want to forget this. Not the pain part, but who I am right now and what I think about the situation. Reading back on post from years ago is a great little reminder of who I was back then, but better yet. How have I changed.

ALS is a horrible disease. I quit talking about it partly because of the things it was attracting… horrible human beings that want to promise a cure, but are actually in trouble with the law for scamming the sick and elderly from their hard earned life savings.

There were terrible things that I had to face, but nothing compares to what the person with the disease is going through. You know what the hardest thing was for me to take… the fact that shame had anything to do with the situation. Yes, shame. As in, I don’t want people to see me having to be fed. It was not simply the pride of someone that always took care of not only themselves an others. When part of who you are is being a provider, making that unwelcome transition to be the one receiving care is not an easy one.

I was very angry. My whole life I have fought the stupid shame monster. As I get older I care less and less what others think. I am better at not taking things personal. I can honestly say that if you don’t like me, I am OK with it. I finally understood that lesson, some people will just simply not like who you are. “I know you hate me, and I am totally OK with that.”

I don’t know how to transmit that feeling to someone else though. How do I remove that shroud of shame from someone else who has always been proud. I know I have personally seen an elderly person out on the road and said they should have their license removed… but what about when that is your last sense of pride and independence.

We live in the world of superficial interaction. I am sure your Facebook has people that you don’t know well, but either would like to know better or thought you knew at one point. I have heard from others that they hate “such and such type of update.”

“I hate the people that post every meal.”
“I hate the people that post pictures of their kids on different outfits.”
“I hate the people that take up working out and all they post about is their workout.”
“I hate the people that seem to only post about their new found religion.”
“I hate the people that post about their travels.”

Why do we have such an easy time hating others for what they share? Is it always some level of jealousy?

I have not had to do it a lot, but when I do get a negative comment to something I am excited about I am quick to point out that you can unsubscribe from me, or even unfriend me. I think that feature is golden. If I don’t like your noise, but like you as a person I can simply not follow your updates. Sharing things in the internet can make us seen one dimensional, but we are all complex being with tons of shit going on in our lives. From following my Facebook you would never know that I worry about people close to me having cancer, I have someone with a terminal illness and I see them deteriorating every time a little more… my close friends know that via phone call, I don’t need the empty sympathy of a comment or worse, someone liking a sad status because they are too busy to actually type a comment. (I have seen it done, someone posts something really sad and people actually click the like button.)

So even though I think I have conquered shame, I still don’t want to fall to.

“I hate the people that post about their relative dying.”

I am not ashamed of it, I don’t want to share it… I just hate the fact that my relative feels judged in some way because of his condition. I hate the fact that there is nothing I can do about it. Nothing I can ever do (besides curing him) will ever bring him back.

We are all complex creatures going through this journey of life. I like to think that if you get to know me you won’t hate me, but if you do… don’t waste your time. I am certainly not wasting mine.

Stupid Arguments

In recent years, thanks to a lot of very frank conversations with my wife I have found out a little more about the relationship dance. Often times it is not the action that is important, it is the intent and how you communicate that intent. We don’t have to always guess exactly what our significant other wants, we just have to want to make them feel special.

One of the most famous arguments, and to me most frustrating is “What are we going to have for dinner?” We have tried so many different ways of settling that dumb argument, but in the end as long as I continue to be both flexible, loving and not frustrated with her inability to just know what she wants (or me guess what she wants before she knows it herself) we are O.K.

I am the master of taking things personal. Using that same example I would see it as a competition. Hey I am “better” because I will eat whatever, I am the flexible one, I win. In reality I was not being the best I husband I could be in that situation. I could have been providing choices and enjoying the whole experience of picking something together. I could have been decisive and say, this is what I want tonight, or I really have a taste for this. Instead many times I would just trow my arms up in frustration and just give up. Dumb right? But so are any arguments when communication breaks down.

I am a firm believer that we all have pressure valves. We never argued about much, but for a bit we seemed to argue about that dinner thing a lot. That was a way for us to get frustration out. There are more constructive ways of course, but nobody is perfect.

Everyone talks about communication but nobody really tells you what it means. I have a simple formula for it.

If there is anything that you tell a friend and you end with the sentence “but I cannot tell X to Y because they will get mad, or won’t understand, or never listen,” then you are not communicating.

We all seem to get into this routine of thinking we know a person completely and know their reactions to everything. It is almost like we are in a game show like the newlywed and lose if we don’t know all the answers.

Guess what, though? That’s wrong! The best part about a relationship is having the room for the other person to surprise you. Hey you might have been married to them forever and they hate spicy food, but then maybe the one hundred time you ask they might be like, “you know what, let me give it a go.”

I am not saying that you should push every button that you know the other person does not like. I am saying don’t always assume the same response, don’t always try to guess what they would say. You may know them well and know 90% of the responses and be right… but what about that other 10%. That is what communication is about. Letting yourself be surprised by that 10% that is different from the same response as always.

I have done things in life that I never though I would. I am learning things about myself every day. A lot of it thanks to my wife. Are we perfect? No way. We still have our communication problems. I think is important to keep on asking questions, never thinking we know everything about each other. That keeps it fun, keeps it fresh.

Most important of all, make sure that you do communicate those things you think you can’t. Make sure it is at the right time and in the right setting, but say them. Your partner in life should be that person that you can share everything with. If you don’t feel you can, there is something wrong and it should be addressed.

Trust me, you will have a way happier relationship if you ask what the other person is feeling or thinking instead of assuming you always know.