To Smile or Not to Smile

Tonight, at a library function, I met someone that knew my brother. After we were introduced, she tilted her head slightly and with a big-ass smile on her face she said, “Your brother passed away last year, right?” She was still smiling. WHY THE FUCK WAS SHE SMILING?!?  I wanted to rip her throat out. If I had the strength, I would have taken my bare hands and ripped her mouth from her face. But I think I was too shocked to completely register my anger.  Why…what…why was she smiling? Really. Please tell me. Instead of scarring her for life, I quietly answered, without a smile on my face, “Yes. Yes he did.” She proceeded to tell me how she knew him and talked about the little dog that lived in my brother’s house but I could still only think about murdering her.

gold-mask-smiling

Has enough time passed that I’m supposed to be ok with someone asking about my brother’s death with a goddamned smile on their face?!? Am I EVER supposed to be ok with this? Because I can assure you that I am not nor ever will be ok with a fucking smile on your face when you ask about my brother or his death.  Losing him was the worst thing to ever happen to me and it has changed who I am. I miss him every damned day. I no longer have that person in my life who will recommend books, movies, and music to me and knows what I’ll like or hate, and will recommend shit I hate anyway. He’d do it just to push my limits but in a way that ended up opening my world just a little bit more. He was that person that made me laugh about things that you probably shouldn’t, but you know you can because it’s ok with him. He was the fucking life and laughter of our family and now he’s gone.

Forever.

So if someone asks you, “Do you smile when you ask about the large black hole in someone’s chest or that limb that they’re missing?”

The correct answer is NO.

Advertisements

Lessons to Learn

I’ve contemplated writing this post for over a month. I didn’t want to write it because it was no one’s business but mine and my family’s, but isn’t everything I write? Then I didn’t want to write it because the rage I felt prevented me from coming up with any words at all. Just today I decided that yes, I would indeed write about this latest shit storm, if only to help someone else down the road.

Let me begin with saying that if you have Power of Attorney for a family member, even for a person with dementia, that power only goes so far. We live in a country where everyone has rights. This is a good thing. It is. But is that person with dementia able to make good decisions, particularly about their health? Maybe, maybe not. Is a 7 year-old able to make good decisions, particularly about their health? We’re dealing with something very similar here. Just because a person wants to do something and is able to verbalize their want, does not mean that they should be allowed to do said want. Do we let 7-year-olds drive because they want to? Nope. Do we let people with dementia go back to their home with no one capable enough to give them medicine or feed them or remind them to bathe or clean up after them? Apparently yes.

My mother’s “friend”, let’s call him Jack, as in Ass, goes to the residential care facility where my mother is living, and packs up her things. He is going to take her back to her home where she’s happiest. Because my mother has rights, resident rights, she can tell the facility that she’s leaving. I can do absolutely nothing. I try to call her and tell her not to do this. No answer. I call Jack and tell him to stop. He doesn’t answer. I call my sister and we rage but we are helpless. Then I leave nasty voicemail messages on Jack’s phone, ripping him a new one. I have no idea what I said. I just know I was furious and frustrated and couldn’t believe this was happening.

I talked to my mother over the next few days. She, of course, was happy as a pig in shit. And you know, it was nice having her happy, but I also knew she wasn’t safe. During one of these conversations, I could hear Jack in the background, mumbling and freaking about something, but didn’t know what at the time. Apparently Mom’s blood sugar was so high that he was trying to make her a doctor’s appointment. He eventually took her to the ER where they gave her insulin.

I sent Jack a text telling him to take my mother back to the facility or he would need to start taking care of my mother. I sent him a list of things that needed to be done, things I discovered she needed when I tried to care for her in my home. “I’m not a caregiver,” he replied. “I just want to hold my friend’s hand as we go through hell.”

Oh, for fuck’s sake, GROW UP! You better do more than hold her hand, you asshole!

Two days later, Jack calls me sobbing. He “overestimated” himself, he said. He couldn’t take care of my mother. He said more, but honestly I have no idea what he said. He was blubbering. He was hysterical. But, as I discovered when I went to Mom’s house, she was NOT going back to the facility. She refused. She wasn’t going anywhere.

And that’s where we still are.

So what does all of this mean? It means, that in order for my mother to be safe and in a place that I know will give her meds and feed her nutritious meals and be there to help her bathe and remind her to change clothes and provide things for her to do besides stare at the television, I must become her guardian. I must fill out applications for other facilities and make phone calls to Adult Protection Services (again) and make appointments to visit facilities and do more paperwork for financial assistance. I must go to court and officially become her parent.

And you know what?

I really don’t want to.

I’ve been dragging my feet with the court piece. I have essentially been my mother’s parent for a few years now–paying her bills, taking her to appointments, and while she lived with us, making sure she ate and giving her meds and cleaning up after her. But once she moved to the residential care facility, I didn’t have to do any of that. I knew she was safe. I knew she was being taken care of. Whenever I visited or called, she was doing well. She really liked a few residents, she occasionally partook in activities, she was ok. I knew she wanted to be home with her cat. I completely understood. But things weren’t good at her home. Things ARE NOT good at her home. So for two months, I didn’t have to be my mother’s parent. I got to be my son’s parent instead. And now that the tide has turned once again, I’m not ready for it. Well…no. It’s not that I’m not ready. I just don’t want it.

I’m angry. I did what I was supposed to do. I tried to help my mom by taking care of her, then when that wasn’t working, I found people to take care of her better than I could. Then this Jack goes and does what I suppose he thought was the right thing, but all it’s done is hurt everyone involved. I have never in my life, felt such rage. I had never fantasized about killing someone before, but Jack changed all of that.

I’m frustrated. The amount of paperwork I have to fill out seems to have doubled. I peck away at it occasionally, but I know the end result of all of this is not going to be enjoyable. Once I become my mother’s guardian, if she still refuses to leave her home, she’ll have to be physically removed. I don’t know what that will entail and I really, REALLY hope I don’t have to find out.  And through all of this, I really, really just want to talk to my mom. I’m trying to do what’s best for her. Is this it? I have no idea. It’s either safe or happy. It apparently cannot be both. At least not for her.

This is the reality of taking care of a parent. It’s fucking awful. Now, not everyone will have this kind of horrible story. Some will have parents who have already planned everything beforehand. Some will have parents that willing go to facilities (which my mother did, then changed her mind). And some of you, like me, may have a parent who has hooked up with an incredible loser that will destroy any good thing you’ve done for your parent.

If that latter example is you, then just know that you’re not alone. Know that others have traveled or are traveling the journey and although it’s worse than riding a crowded Greyhound bus cross-county with a backed up toilet, there is help. Not a lot of help, and the process is extremely slow, but eventually things will change. I can’t say for the better because I’m not on the other side yet. I’m hoping for better, especially for my mom. And if we get there, I’ll be sure to let you know.

alzsucks

 

The Big Scary World

briaroceanI’ve always loved this photo of my son. He wasn’t quite 4 years old when it was taken. It always scares me a bit to look at it, thinking of my boy going out in the big wide world, having to face some challenges alone but also having to handle problems I never even imagined.

This past year my boy has had to deal with more than his fair share of sadness, despair and hard times. It’s one thing to think that I will never be the same after my brother’s death, but I’m 44 years old. To realize that my 10-year-old will never be the same is an entirely different story. He certainly has sad days but he also has more anger than ever before. Just this week, the topic came up about saying goodbye to someone before they died and my son started to cry and spit out, “Just like I never got to SEE someone and say goodbye!” I started to sob right along with him but held him tight against me. I told him how sorry I was, but I also told him that his uncle would never, ever forgive me if I had let my son see his uncle in the hospital hooked up to all of those machines. Phil didn’t want any of us to see him that way.

As a parent, I often wonder what my child can handle and what he can’t. I want to believe him when he says certain things don’t bother him or that he really can do this or that. He told me that sometimes when my mother lived with us, it was ok.  And sometimes it was, but the relief that kid showed when his grandmother moved out was unmistakable. And I don’t have any doubt that seeing my brother the way he was on that last day would have been horribly traumatic for my son, because it certainly was for me.

For whatever reason, I thought a lot about that day today.  I couldn’t tell you what triggered the memory, but there it was. I was actually in the dentist’s chair when it trickled through my mind and I had to hold back a sob while keeping my mouth open so the hygienist could clean my teeth. Really not the best place to have a mini breakdown.

Will my son always wonder and possibly regret not having those last few moments with his uncle? I tried to remind him this week of his last conversation with Phil. It was the same day I had my last back and forth conversation with him. He was in the hospital and my son was in Florida visiting his grandparents. I brought my laptop into the hospital and my brother and son talked via Skype. They chatted about the weather and my son showed his uncle some YouTube video about a video game and they joked around for a bit and they told each other that they loved each other. They said what mattered.

I know I don’t have this parenting thing pinned down yet because I’m still making mistakes every damn day and I’m not sure I’ll ever know what good or harm I’ve done to this poor kid. I’m just trying to listen to him and love him and do what I think is best for him. I think I’m doing and saying what matters.

That’s all I can really do, isn’t it?

 

Walking the tightrope

After 2017, it’s difficult for me to think about what the next year will bring. It will be the first year I’ll begin without my brother. There are still so many “firsts” our family has to live through without him: the Oscars (last year I watched it with him in the hospital), his niece and nephews’ birthdays, Mother’s and Father’s Day, our shared birthday party (his birthday was 6 days after mine). Thanksgiving was sad and weird. Christmas was fucking horrible. The family Christmas get-together was nearly as bad. We’re all faking it until we make it, but not one of us is doing a very good job. We’re lost and haven’t figured out where to go.

When I started to think about resolutions for the coming year, I thought maybe I could try to climb out of this darkness. Maybe this journey could be something I work towards. But what I’ve come to realize is that this pain and darkness I feel? It is now a part of who I am. It won’t always feel so intense, but losing someone you’re close to can only change you.

I know I’m still going through the grief process and I’m certainly at the angry stage now (and have been for a while) but my grief feels double or maybe even triple-fold. Having Mom live with us has been unbelievably stressful in many ways. I grieve for what our lives were before she came here. I’m angry about certain situations that we’ve had to endure. That probably sounds really shitty and selfish, and maybe it is, but I realized that I was spending more time taking care of and spending time with my mother than with my son. And that, my friends, is not ok.  I have apologized to my boy and promised things will change. And I’m working on that now. But that promise will bring more grief for my mother and for me and for what her life used to be.

So what will 2018 bring? I just don’t know. I don’t have a whole lot of hope for much right now. I do *wish* for peace for our entire world, for my friends and family, and for me. But right now the only peace I am able to find is either in a candy bar or a glass of wine or in a pipe. And that isn’t really peace or contentment or anything real. Yet it’s how I have to survive at the moment. Maybe in another month or so I’ll be able to find some balance so I can throw all of these crutches away.

tightrope

Balance. Balance is what I long for. Sanity would be good, too, but I won’t push it.

Good luck to you all, my friends, in the new year and may your dreams, not nightmares, come true.

It’s the Little Things

This morning I awoke with anticipation of a decent day. My boy started 5th grade today and like most first days of school, he was looking forward to it. (Sadly, that excitement typically ends by week 2, but we hold onto the good as long as we can.)  My husband made me a lobster omelet for breakfast, the kid was smiling as he entered the school and I was off to work.

Typically driving makes my mind wander and during those moments, my mind always goes to my brother. Either to good memories or questions I want to ask him or I relive that last visit with him. I always end up in tears, no matter what my thoughts. But this morning, my mind didn’t wander. I kept it focused on my driving and on the radio. Nothing else.

But the day would not be a tear-free day, nor would it let me put my brother aside. I had a visit from my brother’s partner early in my work day. We had to discuss legal issues about my brother’s estate. This was not an unpleasant conversation, but just having to do paperwork for this kind of thing is not fun. It’s much worse for my brother’s partner, but we are all trying to make this as easy as possible for him. If that really is possible.

Later in the day, a book title nearly sent me into tears. “So Much I Want to Tell You.” It’s a book by Anna Akana to her younger sister who committed suicide ten years ago.  Every day I not only want to tell my brother something, but want to ask him so many questions. Like, aren’t you pissed you couldn’t see the new Planet of the Apes movie? Or the fact that Lego Batman came in the mail after you died? Or the fucking fact that you were listening to an audio book but you were only on disc three? Doesn’t that make you angry?!?

It makes *me* angry. It makes me really fucking angry. And unbelievably sad.

But you know what broke me today? Even after the paperwork and the book title, I pretty much kept my shit together. I went home early to be with the boy after his first day of school. It’s a tradition I’ve been able to keep up through all his school years so far, and I look forward to being the first one he tells his day to. As usual, he gave me a pile of papers I had to look through and sign and all that jazz. We call it “Mom’s homework”. So after he told me about his day and had a snack, he asked to veg for a few minutes with a YouTube video. I obliged so I could fill out all the paperwork and get started on dinner. I sifted through the papers, signed where I needed to, recycled what didn’t pertain to us. And then I got to the emergency contacts.

Since Kindergarten, my brother has been my son’s number one emergency contact.

But I forgot.

I wasn’t expecting to see his name and phone number listed in this pile of papers.

It stopped me cold. I just sat staring at his name, knowing I had to cross it out.

That’s when I cried.

I crossed my brother’s name from our emergency contact list and it felt like our lives got so much smaller.

I felt much lonelier than I had a few minutes before.

I felt…guilty….lost….defeated.

And sad. Always so fucking sad.

Grief

 

 

 

So Many Words

They say actions speak louder than words. I suppose that’s true in most situations, but what if words are all you have? What if what you say and how you say it is the only action you can take?

We’ve had lots of discussions in our household lately about words and phrases you’re allowed to use at home but not at school or at work or even around friends. My son got in trouble at school for using words like “freakin'” and “bullcrap” because they were too much like actual swear words. We had a chat about it and I reassured him that he was not in trouble at home but would need to use other words at school. The very next day he used “freakin'” again and although he apologized and is trying to change, he was sent to the principal’s office and I got a phone call.

You may be thinking, “Well, of course he got in trouble. Kids should not be using those types of words!” And you’re right, sort of. I don’t think kids should use those words in school, just like I can’t swear at work (except in the back room where my boss lets me spout off at whatever is ailing me). There is an appropriate time for certain types of language. I try not to use the phrase, “Oh my god!” around some of my friends. I think it offends them and I have no desire to do that. I feel like being sensitive to what others may feel when you use particular words is a part of growing and evolving. I’m still trying to teach my 9-year-old some of that sensitivity but I think he’ll  learn it. It can take time and many mistakes, but it’s doable.

At home, though, I think you should say what you feel. When I get angry or frustrated, I will use words that can make your ears burst into flames. Sometimes I’m muttering and other times I’m yelling. But as a person who ate all of her anger since the age of 7, I like to get all of my anger out before it becomes rage and consumes me. I can run out my frustration at times, but words are typically what purges my body of all the anger or hatred I may have. (And after being bulimic for a time, let me tell you that this type of purging is much more satisfying and so, so much better for me!)

After receiving the second phone call about my boy’s language and feeling scolded for allowing him to use certain words at home, I thought it was time to use my own words to express how I felt. I couldn’t do it over the phone because I knew I’d get upset and say things I shouldn’t. So I sent an email to both the teacher and principal, thanking them for alerting me of my son’s use of language. But I also explained that he is allowed to use those words at home because I don’t want him to eat his anger or punch the wall in frustration or hit someone because they ticked him off. I don’t want him to say nothing and push his feelings deep down until a little nuisance becomes fury. Using words is what we’re taught to do, right? In school, we’re taught to express how we feel by what we say, *not* what we do. And that’s exactly what he’s doing. He knows he shouldn’t use those words at school and he’s trying not to, but it will take time. (I suggested to my son that he use the word “fishcakes” like my 85-year-old colleague from the Blue Hill Library used to use. She used “fuck” when no one else was around. My boy has decided to try the word “flipping” instead, because a girl in his class uses it and she doesn’t get in trouble. I think this might end up being an experiment in gender studies.)

In my email, I also explained that in our home, we really do love words. We compliment each other if we use a good word or phrase. For instance, instead of saying, “That’s not what I was talking about,” my boy says, “No, Mom, that’s not what I was referring to.” AWESOME! Or we talk about words that we enjoy saying because of how it feels in our mouths, like “Mozambique” or “planetarium” or “hullabaloo.” Maybe instead of using boring words like “freakin'”, I can teach my boy to use Shakespearean phrases like, “Thou art like a toad!” or maybe “Your brain is as dry as the remainder biscuit after voyage!” Well, he might not be able to remember that one.  We’ve been trying out other words like “wretched” or “crikey” or “dang nab it.” Something funny or clever that won’t get him into trouble.

shakespearecat

As we continue to discuss the power of words, do you ever find yourself having difficulty in saying certain words that should be simple to say like “I’m sorry” or “I love you” or even just “No”?  I know I do. Currently I have a tough time saying “My mother has Alzheimer’s Disease.”  I can say she has dementia just fine, but something about the word “Alzheimer’s” makes me stutter. The word gets caught in my throat. I think it brings so many depressing images to mind that it’s hard to spit it out. Or it feels like admitting defeat.

However, saying “I love you” to those that I do love or “Thank you” to those that have helped me or been a good friend to me, brings me joy and makes me feel all warm and squishy inside….

…as does saying “fluffernutter.” Seriously. It’s a great word, isn’t it? It uses your tongue and teeth and lips and it’s delicious! Oh and “delicious!” I love that word, too.

What about you? What words bring you joy or make your blood boil?

Let’s have an orgy of words!