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.


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.



The Comforts of Food

Since I was 7 years old, I have turned to food to ease my anxiety, to diffuse my anger, to make me feel good…or at least better. I have eaten away every emotion until only what appeared to be happiness remained. Looking at it now, I’m sure it was the sugar and fat that gave me that euphoric feeling.  And yet knowing this, and after losing over 80 pounds to finally get out of the fat lady’s clothing store, I *still* turn to food when the going gets tough even though I promised myself I wouldn’t ever again.

These past few weeks have been extraordinarily stressful. It’s not the best excuse, but there it is. Fortunately, my food choices have at least changed since my big girl days. I used to eat lots of chips or ice cream or leftover Chinese takeout as my binge foods of choice. Now, when I’m feeling blue or need to take the edge off, I eat rice mixed with canned peas and shredded cheese and a teaspoon of butter or a big bowl of Cinnamon Rice Chex with almond milk.

I know, I know, I’m so naughty!


Me, 4 years ago, eating a scrumptious gluten-free cupcake from Babycakes in Orlando.

It may not seem like a big deal and honestly, in the big scheme of things it’s not. Since I lost this weight, I’ve been obsessed about keeping it off. I still intend to keep it off and I’m sure I’ll keep counting those calories and running when I’m able, but I also realized this week that I have to start making some kind of effort to let this go. It won’t be easy, and it won’t be overnight that’s for damn sure, but I have to find a way to make myself a little happier and a lot less stressed. That may mean I’ll skip a morning workout and read instead or maybe have a snack between breakfast and lunch so I don’t maim any of my co-workers.

Does this mean I might gain a pound or two? Maybe. Will I freak out if I do? Of course I will. I’m not naïve enough to think that just by saying, “Hey, I won’t get stressed by that little bit of weight gain!” that I *won’t* get stressed. I most certainly will because that’s who I am. What I’m shooting for, is to not get AS freaked as my normal. To try to take it a bit in stride and realize that it’s not the end of the world.

This past week I thought a big chunk of my world really was about to end, and gaining a pound or two doesn’t feel like that at all. Gaining a bit of weight can be resolved at some point by eating less and exercising more and going to bed hungry more often than not. It’s a serious pain in the ass, but it’s not the apocalypse.


So tell me, what are YOUR comfort foods? Anything funky or boring (like mine)? I’d love to hear it if you’d like to share.


The remedy

Hope is a funny thing. It can help you sleep, allow you to smile and laugh when you didn’t think you could, and can even push you out the door and get that bit of fresh air and exercise that you so desperately need.Hope

This has been a weekend filled with tears and stilted conversations and many, many spoken “I love you’s.” My family is scared and sad and feeling helpless and attempting to prepare for the worst….but have decided to say “Fuck this” and instead we’re hoping for the best.


My brother has been in the hospital for nearly a week. What we had hoped would be a 3-day stay with one cardiac procedure, has turned into a life or death situation that we were not expecting. My brother’s heart is an anomaly anyway, and we should have known it wanted to throw everyone a little surprise.

Through medicine, we hope the issue will be resolved and the original procedure can take place without a hitch and my big brother will be as well as he can be. This is the hope and the wish and the good thought and the prayer and the good vibe we are putting out into the universe. We expect it to be fulfilled.

So if you have control over these types of things, consider yourself put on notice.

Do NOT disappoint me.


Picture this

As I enter the yard, the lawn has been mowed and there are trimmed bushes in front of the house. When I walk into the small, but clean and organized home, there is no trace of dirt on the carpet or dust on the television. The kitchen floor is swept and Mom is at the counter whipping up a batch of cookies. Mom is a tall woman (5’9″ish), thin yet strong. It’s possible the house smells like cigarette smoke, but it probably also smells like chocolate and sugar and a hint of dish soap.

Now fast forward four years.

I walk into the yard with the overgrown bushes and am greeted with a trash bag on the walkway that has been ripped open by animals. When I enter the house, I see a rug coated in dirt and grass, and Mom, now 20 pounds lighter with the look of a frail wounded bird, is sitting in her favorite chair because her body doesn’t allow her to do much more. The kitchen floor is also dirty, and when I open the trash can to throw something away, tiny flies dart out at me as I try to slam the lid back down while covering my face. I can only smell cigarette smoke. Nothing more. Until I go into the spare room where the cat’s litter box is stored. There is no more clean litter and the box is filled with urine and feces. The cat has done the best he could with what he had.

I don’t cry. Not yet.

I sweep the kitchen floor and vacuum the rug while Mom tries on the clothes I bought her for her birthday. I scoop the cat box as best as I can and try to leave the little guy with something until I can get back during my lunch break with fresh litter. I talk to Mom for another minute before I have to leave for work. It’s obvious she’s in pain today. The dark half-moon smudges under her eyes tell me she’s hurting. She doesn’t complain, just states that she hurts. I give her a hug and tell her I’ll call her in a bit before I come back over in the afternoon. I take the trash out on my way to my car, and I have to hold my breath as I open the large trash can. It not only stinks, but maggots drip from inside the cover onto the garage floor. I stuff the bag in and try not to retch.

As I drive the 15 minutes to work, I take several deep breaths. When I get to work, I ask my boss to smell me because I think I smell like smoke and/or cat pee. She tells me I do smell like smoke….and then I cry. This wasn’t a “silent, tears streaming down your face” kind of cry. This was a blubbering, snot-inducing sob, while trying to tell my boss why I was so upset. Mom was actually doing pretty well that day. Her memory was decent and although she was hurting, she could still get up and walk around with her walker.

But…she wasn’t my mom anymore. I’ve known this for several years, but the great leap in those two images, the stark difference in “before” and “after” finally became real to me.  I know she is no longer the baking, clean-freak I grew up with (and became!) but is now an old woman who can no longer care for her home like she used to.

I am the person responsible for cleaning it now.

And I hate it.

But I think she hates it, too.

She always thanks me profusely whenever I go over and for some reason, I always feel a little guilty when she thanks me like that. Admittedly, if my visit is before work, I’m running around her house, cleaning up, not sitting down and chatting much, because I need to get to work (and typically this is after taking my son to school and running around my *own* house getting supper in the crock pot and doing laundry and who knows what else). I’m sure Mom can feel my tension but also understands my “I need to get his done” attitude, because that’s how she always was while I was growing up. I do know Mom appreciates my help, but I also know she’d give anything if she could do it on her own again.

And so would I.

Does that make me selfish or a bad daughter? Probably. But I have to be honest, at least with myself. B_wears_her_heart_on_her_sleeve_by_fangedfemut I also know I need to come to terms with all the changes. Over the past week I have had multiple emotional outbursts, some with tears and others in anger. No one has been immune–my family, my co-workers, my friends. I’ve either yelled at or cried on nearly everyone.  Wearing my heart on my sleeve is an understatement this week. I have felt just so….exposed, with every emotion I have felt being raw, painful.


I’m aware that the stress I have felt isn’t just from Mom’s situation but also from other health-related concerns within my family. Yet I have no control over those problems. I can only hope and send good thoughts and say encouraging words, but there’s nothing else I can do. But with my mom? I may not have control over the deterioration of her mind and body, but I can do little things like vacuum or sweep or bring her good food, and I need to take some consolation from those few things I *can* do. I need to give myself a break and not get angry or frustrated when I walk into her home and it’s not like it was a few years ago. This isn’t her fault and I need to stop acting like it is.

I need to remember that Mom is still my mom and just try to forget all the rest.

Sometimes it’s difficult to just “be”

Lately, there have been many moments when I realize that my son really “gets” me. He’s always been one to compliment me and call me beautiful, just like his father does. That’s one thing we try to do in this house is to boost each other up and not tear each other down. (Ok…that’s not really true. We tend to tease each other incessantly, but it’s done with love and if there’s ever any bad feelings, we stop.)

But it seems that just in the past few months, my son has realized a few things about his mother and felt the need to share his observations. “Mom, you seem to be particularly cranky. Did you go for a run today?” Or, “Hmmm….I think you need a treat. You should go buy an iced coffee.”

Then this afternoon, after having an unexpected house full of family and food and fun, I finally sat down beside my boy after everyone had left. My cold was making my head hurt and my eyes sting, but I needed to spend some time with my son. I watched him play a video game and we discussed which was easier while playing, being in first person or third.  As we talked, I started to lose my voice so he entertained me with making his character on Halo do wacky things. (I personally love it when these guys dance.) But after just a few minutes, he quit the game and left the room. I put my feet up and tried to read for a bit. No matter how bad I feel, I typically hate to lie down to nap or just rest. There isn’t enough time in the day to get done everything I want to do, as it is. Being sick doesn’t change that.

But as I tried to read with my eyes watering, my son came back into the room and said, “Here, Mom. Let me tape this to your forehead.” It was an “Out of Order” sign he had made for his computer so no one would touch it. As he placed the sign on my face he said, “There. Isn’t that better?” And as I closed my eyes and put my head back into my chair, it really *was* better. I needed a few minutes to just stop. No reading, no thinking, no doing.DSCN3175

Just being.

And it took an 8-year-old boy to teach me this.

By placing a sign on my forehead.

I’d say little nuggets of wisdom come from all people of all ages. We just need to take the time to listen.




Creating Dignity

“Can you tell me what happened? Can you tell me why you went to the hospital?” the doctor asked my mother.

Mom starts to turn to me to refresh her memory, to fill in the gaps, until the doctor firmly said, “No. I don’t want you to ask your daughter. I want YOU to tell me what happened.”

I was sitting beside my mother with my 8-year-old son on my lap. We were packed in a corner in the small doctor’s office. While I wrapped my arms around my son, I stared at the doctor and in my mind I kept willing my mother to remember. “You can do this, Mom!” I kept saying to myself. But when I glanced at my mother’s face, I could see the color rising in her cheeks. She was staring at the doctor, too, but just kept saying, “I don’t know. I…I don’t know.”

When Mom finally turned to me, I put a hand on her shoulder and said, “Remember, Mom? You were driving to Hartland and you started to shake?”

“Oh, YES!” my mother nearly shouted. I was nearly expecting her to raise her fist in triumph as she recalled her little escapade that ended with a trip to the emergency room. And as she was telling the story, my son whispered in my ear, “I didn’t know that’s what happened.” He looked scared. I nodded and held him tighter.

Although Mom’s was not a good story, I was so happy she could remember it. During those few moments when Mom looked so embarrassed and helpless, I would have done anything to make her feel good again, to not feel ashamed or scared.

I’ve thought a lot about that doctor’s visit today, wondering if when I take my son to school tomorrow, *he’ll* be the one who needs a little protecting. His tics have been quite calm over the past few days, but today as he talked about his upcoming first day of school and how excited he is, his tics started to increase. He’s been blowing on his hands a lot and raising his arms. I remember last year on the first day of school, I cried when I drove home after watching him tic like mad as we walked into the classroom. His teacher at least knew about the tics, but this year, we haven’t even met the teacher.  Fortunately most of his classmates seem to “get” my boy and don’t seem to care about the tics, but there’s always someone new to explain it to, or some little shit on the bus who is looking for a kid to pick on and ridicule for the school year.

As my son was getting ready for bed tonight, he was telling me about all the things he wants to tell people at school tomorrow, like about the Youtubers he thinks are cool and he wants to get his friends to subscribe to those Youtube channels. He wants to make a sign to have on the playground, telling people to come to him so he can tell them all about these great gamers. And as my boy told me all of this, I was cringing inside, just hoping that no one beats him up, and also hoping that he will find his tribe sooner rather than later. Most geeks I know didn’t find others like themselves until they were at least in high school. I want my son to find his people NOW. I want him to feel like he belongs with others that he is not related to. I want him to feel safe and happy, not ashamed or scared of who or what he is.

I want to make two of the people I love most in this world to feel good about themselves and to feel safe and happy. That is all I want to do.

It’s really not that much to ask, is it?