Becoming My Mother

motherdaughterThere’s no doubt I am a lot like my mother. We look alike in some ways, have many of the same mannerisms, same obsession about making things neat, same love of vanilla ice cream. As I watch my mother’s mind deteriorate, I can’t help but wonder if we will also share the same fate.

I’ve been thinking about this a lot lately, particularly in the last month when my husband found my vitamins in the refrigerator. I’ve also had more of those moments when I just cannot grasp that one word I’m looking for. Do you know what I mean? You’re having a conversation with someone and all of a sudden you draw a blank on that one specific word. You haven’t lost the thread of the conversation (yet) but you can’t think of that one friggin’ word.

I often find myself in this situation when it comes to naming actors. I’ll be talking with a library patron about a particular movie and if I can’t remember the actor’s name, I start googling the other film titles I can remember just to narrow down the possible name. It drives me bananas!

And then on Friday, I got this weird vision impairment thing for a few minutes and it made me stop and think, “Shit. Do I need to go to a neurologist, too, and find out if my brain is already going wacky?” Maybe. Maybe I need to be a little cautious and make sure I’m ok. And maybe I’m just freaking out about my mom and worried that I’m following down the same exact path she did.

My sister and I often talk about how doomed we are. On nearly every branch of our family tree, a female member had dementia or Alzheimer’s disease–both of our grandmothers, at least one of our great grandmothers, and all three of our aunts. This past weekend there was an incident with my mom, and I asked my sister, “Is this what will happen to us?”

Not only is it frightening to watch my mother go through this horrible decline of her mental and physical health, but to think that my sister and I may have to go through it, too. Will my son be on the other end of the phone line, listening to me cry in confusion and frustration, just like I listened to my mother? Will he have to take me to my doctor’s appointments and tell them what is really going on in my life, because I have no memory of what happened the day before?  The thought of putting him through all of that gives me a belly ache. And yet, I am already turning to my 8-year-old son and saying, “Bri, what’s the name of that song? You know, the one with the guy that loves the girl?”

I can only hope that in the future, I’ll realize my decline, realize that I could harm myself or someone else. Having someone tell you that your memory is getting worse, doesn’t always do the trick. It makes you want to prove them wrong. Admitting that your mind isn’t what it used to be is a *very* difficult thing to do, and when you fear losing your independence, it’s nearly impossible. I can only hope that I’ll have the courage to admit to myself and to others when my mind is failing, and get help before I lose my chance to make my own choices.

This is what I fear for my mother. I want her to still be able to make whatever choices she wants to, to make her life her own. But things are getting more and more difficult and I feel like her time is running out to make those choices. We had several conversations in the past and papers have been signed, but not everything has been said. There are still things to be done and decisions to be made.

But…not yet.

Right now it’s just time to take deep breaths, to stay calm.

And to hope.

I no longer know what to hope for, but hoping for something good seems like the way to go.

So let’s do it. Let’s hope for good and see what happens.

 

 

 

The Memory Game

Did you ever play Memory as a kid? I always loved it when I could remember where that one matching card was, especially that damn red apple. If I played with other people, I, of course, would want to win and would just hate it if someone beat me. And then, as an adult, I played with my little boy. All I wanted was for him to win, to feel good about himself. I never “let” him win, though. I would try to send him telepathic messages, telling him where the fish was or the beach ball, but rarely did that work.

memory

Last week, I took my mother to the neurologist, to play a new kind of memory game. I again found myself willing someone else to “win,” telepathically sending her words that began with the letter “F” and giving her numbers to count backwards with.

It was extremely difficult to watch. With each question, Mom was getting more and more frustrated and very tired. She would cover her eyes with one hand then rub her forehead and let out a big sigh.

My siblings and I know that sigh VERY well. It’s her “I am so sick and tired of you and what we’re doing and the best thing to do is for you to leave the room” sigh. And that’s what I wanted to do. I kept looking at the door. Maybe pretend I had to use the bathroom? I wanted to run away from that room and tiptoe back to it an hour later.  That’s what I used to do as a kid and my “fight or flight” response was screaming at me to just leave.

But I couldn’t.

So I stayed. I silently mouthed to the doctor that Mom was getting frustrated. The doctor nodded and she started to ask Mom questions about her children and grandchildren instead. Just a conversation. It worked…for a few minutes. Then the doctor slipped in a few other memory questions but Mom caught on after a bit, stopped talking and just stared at the doctor. It was so unbelievably uncomfortable. The neurologist was getting “the eye” from my mother! I’m sure that woman would have burst into flames if my mother had anything to say about it.

Thankfully the testing finally ended, or rather the doctor stopped trying. She wasn’t getting anywhere with Mom, so she did a short physical exam instead. Funnily enough, Mom relaxed at this point. This was something she was used to, something she was familiar with.

Unfortunately, my poor mother not only has a hurting brain, but her body is a mess, too. She smokes and this doctor, the very first ever, told Mom that her lungs sounded horrible. I was almost happy she said it, although it’s not going to make any fucking difference now. She’s 69 years old and she’s going to smoke a pack a day. Period. Diabetes is also corroding her body–her feet, her legs–I had no idea things were so bad. I should have, though.

Once the entire exam was over, the neurologist recommended a few physical tests (MRI, EEG) that will need to be done in the next week or two. We won’t go back to see this doctor until April, but will hopefully have more answers before then.  She did toss terms at us like frontotemporal dementia and transient global amnesia due to mild strokes that might explain some of the strange behaviors my mother has exhibited. But nothing is really known right now, except there are serious gaps in my mother’s memory and in her ability to understand or follow instructions.

I don’t really know what will happen now. I’m relieved that we’ll have some answers to why Mom acts the way she does. Sometimes all this guessing we’ve been doing gets exhausting and honestly, it’s just foolish. My family and I can look at our grandmother and our aunts and get a very good idea of what’s happening, but still not have any concrete answers or facts. With these tests, science can at least tell us why she can’t remember where she put her teeth and possibly, how much worse her memory will get. Although I suppose we all know that answer.

You know, I have so many wishes swirling around in my heart right now. Wishing I would have made my mother see a neurologist four years ago when things started going wacky. Wishing I would have told Mom’s doctor about her feet when I got a glimpse of them last summer. Wishing that Mom didn’t need me as much as she does. Wishing that I could tell her how scary it is being her parent and that I’m afraid something is going to happen and it will be my fault.

And wishing, always wishing, Mom was my mom again.

The Great Outdoors

This has been a stressful week. Nothing extraordinary happened at work or at home. The library was very busy for the first few days and I was finally able to be productive for the last two. Home was the usual hectic schedule of trying to squeeze in making dinner and taking the boy to basketball practice and do my own workouts and laundry and all the other stuff. But there was nothing more stressful than usual.

And yet by Friday afternoon, I wanted to hide in my home and never talk to anyone again.

Typically I enjoy working with the public. People can drive me crazy but I usually find humor in odd behaviors or just roll my eyes at those that irritate me. But not this week. I had reached my fill of humans and I needed the day and week to end. I knew I had my son’s game to go to this weekend, as well as a visit to my mom, yet I wasn’t sure I could face either event.

I got up this morning WAY too early and a little grumpy. I still refused to think about the day ahead and just read a book for a while. Once my husband was up, we talked about my frustration with people and needing a break and about the courses I started to look into, possibly for a career change. Maybe something I could do from home or just something *not* with the public and with very few people. He was surprised but just let me talk. My son woke up then, so no further conversation was had, but that was ok. I needed to do a little self-assessment and figure out what’s going on in this brain of mine.

A while later, I bundled myself up and went for a run. It was 28 degrees, plenty warm and dry enough, but my face still froze. And yet it was a very enjoyable run. I just listened to my music and pushed myself when I was able and didn’t really think at all.

Once I got home, I stretched and did a few chores then showered. My kid got ready to go and we were off to the game.

No anxiety. No anger. No frustration.

Huh.

How come?

Did I purposely say to myself, “Ok, Hol, get a grip. You’ve got to do this, so just let it go”?  Of course not. That would probably be a very emotionally healthy thing to do, but I’m not there yet.

Was it the run?

Yeah. I think so. There’s something about a bit of heavy breathing and sweat and fresh air that does something to my brain. Something really, really good. Not only does my body feel better after a run, but my mental and emotional health is vastly improved. Endorphins are the absolute best drug.

But I don’t think it was *just* the run, but being outside.

All I want to do in the winter is stay indoors and sleep and read and not interact with anyone outside of my household. It’s cold and my body hurts when I’m cold, so leave me alone and let me stay inside and bake blueberry muffins and cranberry bread. I walk and run on my treadmill and lift weights and watch exercise videos, therefore my fitness level is still maintained, so why go outside?

Maybe because there’s a lot of life out there. It may be winter in Maine but there are birds and deer and rabbits and turkeys and squirrels and I get to see them right here, in my town, on my road, in my yard!  The trees may be bare but the snow and ice make them beautiful again. The spruce and the pine are always gorgeous, too, and just seeing them brings me comfort I wasn’t aware I needed.

Photo courtesy of Stephen LaRochelle

Photo courtesy of Stephen LaRochelle

Hearing and seeing all the life that is out there, makes me want to live. Makes me want to be a part of others’ lives, too. Even those annoying humans.

Well…some of them, anyway.

Do you ever just want to hibernate? Or hide? How do *you* keep going? I’d love to know.

 

 

 

 

 

My one intention

Typically I love the beginning of a new year. It’s so full of possibilities. This is the year I’ll finally [fill in the blank]! So many people scoff at the “lose weight” or “exercise more” resolutions that are made, but you know if that’s what you want to do in the upcoming year, then screw the naysayers. Some people just want to see you fail, no matter what your goal is. So don’t worry about everyone else, just do the best you can for yourself.

In the past, I’ve made some of those same resolutions and I eventually succeeded.  I lost over 50 pounds one year and have kept it off. I ran over 600 miles in 2012 and completed a half-marathon in 2013. But I’ve also said I’d try something new each month, which I’m pretty sure never happened, or to be happier with myself, which will just be an ongoing battle.

This may be the first year I don’t have any kind of resolution or goal for myself. There are things I would  *like* to do or become–I want to be physically stronger, I want to write more, I want to run a smidge more than I did last year, I want to bake gluten-free bread in my oven successfully–but if these things don’t happen then they don’t happen. No harm, no foul. Honestly, right now there are other people’s lives that will impact my own in such a manner that I don’t really want to have any goals. Not any personal ones, anyway.

Instead I have hopes and wishes for others.

I want my mother’s memory and health to stabilize for an entire year. I want my brother’s heart and health to maintain a good state. I want both my son and husband to enjoy moving their bodies.  I want my best friend to find true love.

I want all of us, all of you, to be happy.

But the only thing I really intend on being this year is sane. If I can balance my day to day life–the work and parenting and keeping in shape and caring for Mom and making dinner and doing laundry and taking care of the house and being a wife and a friend–and still find a little time for me to read and write? Then sane I will be. Or rather become. I’m pretty sure I’m not there yet.

So happy new year, my friends. May all your resolutions or goals or intentions come to fruition, and may all of our wishes and hopes and dreams come true.

 

 

 

Calvin and Hobbes and Santa Claus

I always get a bit nervous when I see my son’s teacher has sent me an email. I’ve gotten a bunch over the past few years. Some good, letting me know about something spectacular he had done that day (especially with writing, since that’s something he constantly struggles with), and a few that were not so good. Mostly about his behavior or a scuffle on the playground.

And this week? This week I got the email informing me that my child was telling everyone in his class that Santa didn’t exist and it was just their parents putting the gifts under the Christmas tree.

Oh shit.

A few months ago, I briefly mentioned in this blog, the evening my boy found out the truth about Santa Claus from a Calvin and Hobbes comic. He cried himself to sleep that night, and kept repeating, “I’ve lost a friend! I’ve lost a friend!” The day after this happened, he went into complete denial mode and I just let it go. It was in the summer and I didn’t feel the need to discuss it anymore at that time, and he definitely didn’t want to talk about it anymore.

I started thinking about this again a few weeks ago but was really unsure how to bring it up. I really, really wanted him to face the truth. I hate lying to him and I wanted to stop the charade. I don’t think he ever noticed the different wrapping paper or hand writing or any of the other tricks we implemented, so why even bother? I wanted him to figure this out himself, I guess. Although is it better to tell your child, “Hey, I’m sorry but I’ve been lying to you your entire life,” or is it better for them to figure it out (or read about it) and feel betrayed? It’s all just icky.

santa

Instead of finding a way to bring this up, my son did it on his own. He mentioned Santa a few times last week, and I just looked at him and shrugged my shoulders. He knew the truth and I wasn’t going to flat out lie anymore, so I let him think about it. At that time, I had no idea he would say anything to his friends. NO IDEA! I thought he hadn’t completely admitted to what he really knew, so there was no sense saying anything about keeping it  a secret.

After getting the email from his teacher, I told my boy that he needed to keep the information about Santa to himself and he asked why. I told him that it might upset some kids and they didn’t need to know this right now and they didn’t need to hear it from him. He kept whispering, “I’m so sorry. I didn’t know, I didn’t know. I’m really sorry.” I let him know that it wasn’t his fault. I was responsible for this. I never told him not to say anything. Apparently when my kid learns something new, everyone needs to know about it.

I asked my son why he told people about what he learned. “Some kids were talking about Santa and I thought they should know the truth. They don’t know, Mom!” I told my son if any of his friends asked him about Santa and the presents, that he needed to tell them to ask their parents about it and let those parents deal with it from there. (And if any of you are parents of children in my son’s class, I AM SO SORRY!)

In a weird way, I feel proud of the kid. Even though he hated the truth, he felt others shouldn’t be left in the dark. And maybe he didn’t want to feel so miserable by himself, which is exactly what I would have done. Misery loves company, right?

I thought I’d feel really sad when this little piece of Christmas magic died out, but I’m not. If you know me, you know that I *love* Christmastime. I love the music, the lights, the gifts, the movies, the stories, the whole shebang. And I love Santa Claus. I love the entire idea of him and what he stands for. Giving because it feels good is a fantastic thing. But I don’t like telling my child that this old man sneaks into our house once a year and leaves boxes in our living room while we’re sleeping, nor do I like telling my child that it’s ok to sit on that old guy’s lap. Seriously. All of that is really creepy.

Now my child will know that his parents stay up way too late on Christmas Eve and wrap and put things together and make everything appear picture perfect, all because we think he’s pretty darn great.

Star Wars figurines? $20

Video game?  $50

Knowing how awesome your parents are?

PRICELESS

 

 

Surprise!

Visiting my mom these days tends to fill me with trepidation. What will I find this time? Each visit brings something new–cuts on her face from falling out of bed, an unpaid bill with possible consequences, confusion about the location of her hairdresser she’s been seeing for nearly 20 years.

At this point, Mom still knows who I am and isn’t confused in any way about me, but I worry that one day soon she won’t know my son. He’s growing so quickly and looks so much older already. I’m afraid that one day she won’t recognize him, and who will be more heartbroken when that happens? My son or my mother?

This last visit, though, I wasn’t worried about that. We already knew what special surprise we had waiting for us. We had a task that needed to be accomplished. The search was on….to find Mom’s teeth.

Common-Dreams-Losing-Your-Teeth-2

Doesn’t this sound like a Janet Evanovich novel?  Crazy!

But it’s what needed to be done. Apparently Mom took her teeth out sometime in the middle of the night. She found her bottom teeth somewhere WAY behind her bedside table, but no top teeth. So the hunt was on!

As my son and I looked under and in the couch, I started to wonder if he’d remember this one day and how he’d look back on it. Will he remember it fondly or just shake his head and think how bizarre things were? Or maybe both?

After the couch there was searching under the bed, behind the bed, under tables and bureaus and chairs. But still no teeth. And this, my friends, was over a week ago. Mom can chuckle about it, but I know it bothers her. She keeps saying how funny it feels not having her top teeth in during the day. Where the hell could the teeth be?!? She has a cat, and honestly, I even looked in the cat box just in case he dragged them in there. It would be horrible if they were in there, but at least they would have been found!

I am really trying to find humor wherever I can. I think when you love someone who has dementia, you *must* find humor and happiness wherever and whenever it’s possible. There are so many bad days and bad visits and dreaded phone calls, that when I have a good afternoon with my mom, I hold onto it with everything I have. I must remind myself that there are still good times ahead. They might not be like they were before and they won’t be as frequent. There will be more good moments than good days.

But that’s something. And right now I’ll take it.

 

A gift

A few weeks ago as we sat at the dinner table, my son picked up his napkin and put it to his forehead. “Well,” he sighed, “I’ve got a new tic.” He removed the  napkin to show us his eyebrows raised on his forehead. Then he waggled his eyebrows like Groucho Marx…except my boy didn’t do it on purpose. This might have seemed amusing if it wasn’t a tic. If he just wiggled his eyebrows to be funny, then we’d probablygroucho2 find him a hat and fake glasses and show him YouTube videos of the Marx brothers to explain who he looked like and why it was funny. But as my son continued to sigh throughout dinner and kept his napkin covering his face, it was no laughing matter.

 

This past summer, Bri’s body (or rather his body’s reaction to anxiety) created a tic that physically hurt him. He started to nod his head in a very quick, jerky movement. Sometimes the nodding is up and down as in “yes,” and sometimes it’s a shaking of the head as in “no,” although typically it’s the former. There are times when the nodding is so frequent, that I’ve had to ask him to answer me verbally when I ask a question. On at least one occasion, I asked him something and didn’t hear him answer “no” but he was nodding his head as in “yes.” He got upset because of the confusion, but hopefully the verbal responses will help in the future. What’s even more upsetting is that sometimes after a particularly bad day, he’ll try to settle down at bedtime but will cry out to me, “Mom, my neck really hurts!” I always respond with a visit to his room and many whisperings of “I know, sweetie, I know” and light massages of his neck.

Although my son has had transient tic disorder for a few years, it seems to be getting more difficult for him to handle. Or rather he is more aware that the tics are happening. I am grateful for at least the rotation of the tics, the fact that one particular movement will go away for at least a little while. For instance, he doesn’t blow on his hands like he used to. He might start again tomorrow, but right now that’s not what his body feels is necessary. I just keep hoping the nodding of the neck will disappear soon. The fact that this tic is hurting his body scares me. I’ve read about folks with Tourette’s Syndrome and how the various jerky movements negatively affects their bodies. How could it not?

The most disturbing aspect of all this though, was watching my little boy’s body create a tic while we had what we thought was a relaxing dinner. It had not been a bad day and it had been a good evening. I keep asking myself, “Why does his body do this? Why does it react to stress and anxiety this way, even when it’s not a particularly stressful day or moment?” I don’t have specific answers and yet I know from observation that he tends to tic more at night, no matter what his day has been like. I do think he tries to resist the tics while at school. (I’ve seen him at a birthday party try to hold his face still and open his eyes wide so he won’t squint and scrunch his eyes.) Once he gets home, he knows he can be himself and I think his body just lets it all out and it tics like mad–eye scrunching, eyebrow raising, head nodding, blowing on the hands–the whole kit and caboodle.

But this morning? This morning I wasn’t thinking about anxiety or body tics or deep breathing exercises or any other kind of stress reliever.  I was only thinking about getting our four cats outside so they’d stop bugging me. And as I let them out, I heard my son waking up. I didn’t know it, but I was about to receive a very special gift.

Typically my husband, the early riser, is already awake but this morning he slept in. I whispered to my son that he could get up if he wanted to, but we had to be quiet. So we went into the kitchen and quietly talked about what we dreamt the night before while we made tea and coffee for ourselves. (Don’t worry, decaf tea for him!) Then we tiptoed into the living room, sipped our drinks in front of the lit Christmas tree (yes, you read that correctly) and talked about video games, my sister’s 50th birthday, our freaky cat we secretly think is Batman, and ghosts. And near the end of this lovely conversation? I realized that my sweet boy hadn’t tic’ed once.

Not once.

I love my son more than anything that has ever existed in this world. I’ll love him if he dyes his hair purple or turns into a yeti. I love him and all his eccentricities and goofiness and bad jokes. And I love him with his tics. But I also love him without his tics and can appreciate those few moments when his body and mind are calm and happy and in sync.