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.

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.

 

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.

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?

 

 

 

 

 

Parenting Your Parent

My mother is strong-willed and fiercely independent. In other words, she is stubborn and won’t do a damn thing people tell her to do.

Mom has faced many health challenges in the last 20 years: Ramsey Hunt syndrome paralyzed part of her face permanently, fibromyalgia and arthritis bring her pain nearly 24/7, and osteoporosis has weakened her bones so much that she has broken both hips and an ankle in the past five years. Yet through all of this, she has typically found some semblance of a bright side or tokens of happiness that keep her going. Don’t get me wrong, she complains plenty, but she tries to find other things to discuss–my son, our cats, the weather, who showed up in the obituaries, etc.

But things are starting to change. My siblings and I believe that the early stage of dementia has begun and although we’ve all been in some state of denial, we know that all of our lives will be affected. So many things need to happen for Mom’s safety and her state of mind, yet Mom is the one who still has the power to say “No, I won’t do it,” or “Yes, ok, let’s do this.” Can you guess which answer she’s chosen?

We had a mini health crisis at her home recently, resulting in the calling of an ambulance. They checked her out and although she *really* needed to go to the hospital, she refused to go. My son and I stayed at her house for a while afterwards. I cleaned up the house a bit, made her bed, made dinner, and just chatted. Like nothing had ever happened. Living in a state of denial is something that my family and I are really good at. I was raised in that state, escaped for a bit, but can easily move back into it. I want the bubble I live in to remain clear and comfy and undisturbed. I hate drama and messes and uncertainty. But when your mom isn’t feeling well and she won’t get help and she could die because of that lack of help? It keeps me in this permanent sense of uncertainty and fear and helplessness. And I fucking hate it.

About three years ago is when I officially became my mother’s parent. Apparently Mom had several mini strokes and ended up driving to my home in the middle of a snowstorm while wearing summer clothing. She thought she worked at a local convenience store and told me about the people she worked with and so on. It was scary and I didn’t do the right thing. I at least convinced her to stay at my home, but I never called an ambulance. The next morning when she was my mother again, she refused to go to the ER, but did ask me to lead her home. Now, you must realize that where I live is where my mother was born (literally) and grew up, and the house she lives in now she has lived in for 30 years. But her brain was still feeling fuzzy enough that she wasn’t sure she knew her way back home. And that’s when I knew things had permanently changed between us. I cried a lot during that time, mourning the loss of someone I could always rely on.

Mom will always be my mother. I am so grateful for the fact that I still have her (and my dad) in my life. I realize how fortunate I am. And my respect for Mom will never waver. I am, in fact, very much like her. I’ve tried to be independent, I’m stubborn, too, and I can swear as well as she can. (Mom is a former prison worker so she can curse a blue streak!) But so many of the little things I would ask her for, I need to do myself now. And if I can’t, I need to ask someone else. Like make raisin-filled gluten-free cookies. I still can’t do this, but need to figure out how. I can ask Mom, and she’ll help as much as she can, but typically the answer will be, “Let’s do that later.” This is Mom-speak for “I have to figure it out first, so you don’t realize I don’t know how to any longer.” I know she hides things from me because she doesn’t want me to know how weak or tired or sick she is. Not because I’ll worry (although I will), but because she’s afraid her independence will be taken from her. (Kind of like a kid hiding the broken vase under the couch so she can still go out Saturday night.) And I get it. I honestly do. I said as much to her, but also told her that I don’t want to find her dead in her home, when she could have been saved by getting help before things got too bad. She said she understands, but I think her fear of losing her independence is greater than her fear of death.

So now I call her nearly every day, check on her at home, take her to doctors’ appointments when needed and bug her about calling for her test results. My siblings do a lot of these things, too, but since I work less than 15 minutes away from Mom’s house, it’s often easier for me to do this stuff. But now that I’m about to go away for a week, I feel that bit of “parenting worry” I get when I leave my kid for any extended bit of time. Yet the worry I feel is not for him, but for my mom. I’ve even contacted my sibs to remind them I’m going away and to call Mom more and find out what her doctor said and maybe vacuum for her if you get the chance. (Thankfully they know what a control freak I am so they don’t seem offended.) I know I’m doing the exact thing with Mom as I do with my boy. I make sure they have what they need and “Are you sure?” and “Do you know how to do that?” But with Mom, it feels much more critical. Like if I screw up, she’ll die.

This is a responsibility I do not take lightly, but if I was completely honest, it’s also a responsibility I do not want to have. I don’t know what I’m doing and I’m trying to figure out what’s best, but I also feel stretched to the max. I have a hard time parenting an 8-year-old boy, so trying to parent a 68-year-old woman seems like an impossibility.