Getting My Shit Together

A few months ago, I read this fantastic book:

getyourshitHave you read it? Or anything by Sarah Knight? I love her. Yes, she swears a lot (hence my attraction to her work) but she also gives great advice. And although I loved her last book more (The Life-Changing Magic of Not Giving a F*ck), this book came at the right time. A time when I was feeling out of control and needed to get a grip. Unfortunately, it didn’t work, though. Maybe I need to read it again?

Last week at the library, we had a fantastic speaker by the name of Janie Downey Maxwell. She has a blog called Organizational Habits where she discusses what one can do to become more organized. Her talk was called “Organizational Zen” and she not only talked about tools to become more organized (planner vs. calendar) but also how one can find a bit of peace while becoming organized.

I’ve been anxious to hear what Janie had to say. I’ve never felt more out of control than I have this past month. Last week I had an appointment with a surgeon (Dr. Huang) to talk about my pancreas. I didn’t fully understand why I was seeing him before my new gastroenterologist. Huang wants to do a CT scan of my pancreas so he can see it when it’s not screaming at me. Totally smart and completely understandable. I may have a cyst or a pseudocyst or possibly something else sitting on the tail of my pancreas. He very subtly mentioned the rare case of pancreatic cancer, but said there’s no reason to worry right now because they don’t know anything yet and I seem fine at the moment.

Huh.

Ok. I wasn’t too horrified…until I left his office. I went to take one of his business cards and realized that not only this doctor, but everyone in this office were surgical oncologists.  Well….fuck. I’m just glad I didn’t know that BEFORE my appointment.

So…between my health issues and attempting to “fix” Mom’s finances, all of my goals for this year have gone right down the tubes. Our spending moratorium hasn’t gone well since the end of April. We’ve helped my mom out a bit, then had an unexpected car repair and dentist appointment, so out came the credit card from my little hiding place. My goal of running a half marathon again this year is going to go on the back burner. This body just isn’t having it.

After listening to Janie, I decided to finally put forward something I should have done months ago. I often feel overwhelmed by my range of responsibilities, don’t you? I was afraid to write everything down because if I saw it all in black and white then this feeling of drowning would overcome me and a breakdown would be inevitable.

Yet…I’m doing all of it anyway, so why not have a slightly better handle on this crazy thing called life?

Meet my new pencil and planner:

planner

It is time to yank up my big girl panties and stop freaking out and just do it for fuck’s sake. Write it all down.  Every appointment I take my mother to, every appointment I take my son to, and yes, even every appointment I need to take myself to–write it down. The dates to pay my mother’s bills, the dates to pay my bills, the dates to clean my mother’s house–write them down. When to run, when to walk, when to breathe—write it all the fuck down.

But I want to write down the fun stuff, too. The hikes in Acadia National Park I plan to do with my son, the ice cream we plan to eat, the anniversary dinner with my husband, the mini vacation in Bar Harbor, the beach day with friends, my friend’s wedding in New Hampshire. I have to write all of that down, too, because honestly? All that other stuff–the doctor visits, the cleaning, the bill paying–that is what life is really made of.  That’s the shit we *have* to do, but doing the fun stuff is how we are able to carry on and do everything else in life that’s difficult and messy and just plain awful. And I have to be able to see those fun things in my planner. I have to know that all of this hard stuff is not *just* what life is. It has to be more than that, right?

It has to.

 

 

 

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Looking for Contentment

I am a tall woman who lives a small life. I live in a very small town with less than 3,000 people. I work in a small, rural library in a town of only 4,000 people. I rarely travel, except to and from work and to soccer practices and games and to my mom’s house and to most of my mom’s appointments. I run and I read and if I want to have a drink, typically I’ll have it at home where it is considerably less expensive.

Most of the time, I think this is ok.

It’s not the exact life I thought I’d have, but it’s not horrible. It can be hard some days and weeks, but it’s not bad. It can be horribly hectic, particularly weekday mornings (probably like yours, too!)–trying to squeeze in a run or a walk before or in between getting the kid ready and making dinner for that evening and doing laundry or dishes and fitting in a shower in there somewhere. And if I’m volunteering at the school library that morning? Forget it. I don’t even try to exercise on those days unless I’ve been up since 4:30 due to the cats hitting my face with their paws….claws out.

Again, not horrible. A little bloodshed, perhaps, but could be worse. And yet, I strive to find contentment. Do you?

I often wonder if social media is what has done this to me. I see my friends taking their children to far off places or flying to another state to run and drink (and vomit?) but having an adventure of some sort anyway.  Typically I’m very happy for my friends and family and the journeys they are fortunate enough to take, but this week it really got to me. I was thinking about all of those lovely images as I entered the local pharmacy where I needed to pick up extra vitamins for my mother because she couldn’t remember to get them. As I kneeled on the floor trying to determine which calcium was the right one for her and which one wouldn’t bankrupt me, I felt my shoulders slump and had to blink back tears. This? This is what my life is? Sitting on Rite Aid’s floor trying to find the cheapest yet most effective vitamin for my poor mother whose entire life seems to center around her cat? How has this happened?

Once I got back to my car, I had to take some deep breaths and try to snap out of this funk. Feeling sorry for myself or for Mom isn’t going to get either of us anywhere, yet sometimes wallowing in self-pity in private doesn’t really hurt, does it? If it does hurt, then I’m a damn mess.

I didn’t shake the blues until two days later. I barked at everyone at home and at work, until my boss and I had this great conversation about “kitchen envy” and trying to put things in perspective. She loves to cook but has a small apartment with a small kitchen. Yet some of her friends will post photos on Facebook of their gorgeous homes and kitchens and my boss will drool a bit over them. But she reminds herself that she has a small place with that horrible orange countertop so she can have decent vacations and save for a good retirement on the small salary that she makes.

Perspective. Again. I keep having to remind myself that it’s about perspective.

I do live a small life in a small town in a small state. But I also live in a lovely town in a gorgeoudscn3538s state. My family and I took a walk in the Bangor City Forest this weekend, to attempt to “leave town” but also in payment for a promise that we’d do something together OUTSIDE. It was one of the best days I’ve had in weeks. I watched my kid kick butt on the soccer field, I got to walk in the crisp air with the trees falling from the trees with my family around me, then I stuffed myself with sushi and rice noodles and tea. It was a good day. A BIG day in my little life.

Does this mean I don’t want to travel with my family (or without them) or fly off and run a race in another state? No, of course not. I yearn to take my child to San Francisco, a place I’ve always loved, or to go to Seattle, a place I’ve never been but desperately want to go to. I’m not into racing much these days, but I’d love to do the Brain Freezer 5K again, for sure! (No alcohol, but ice cream and possible vomiting.) But for this day, for right now, I didn’t need to buy an expensive gadget or travel to another state to have a great day. I just needed to look around and realize and appreciate the wonderments I had right in front of me.

 

 

 

Answers

For months now, I’ve been waiting for a doctor to say the word, “dementia.” My siblings and I have known that is what is causing our mom to forget so many things and causing her to repeat herself time and time again. We knew dementia was the only explanation for why there were so many incidents with Mom over the past few years. But no one could or would confirm our beliefs.

Until yesterday.

But have you ever expected an answer to a question, and when you received that expected answer it gave you no relief? It just confirmed your nightmare?

Yeah. That’s how this feels, too.

When the doctor used the words “vascular dementia,” it was a bit of a relief, only because we finally had a diagnosis and it confirmed that my siblings and I were not insane (well…not for this reason, anyway). It’s also a slight comfort to be able to say to someone, “Look, my mom has dementia so she might not remember you after today.” It gives us a word to use to explain our mom’s behavior, a word we can use with certainty.

But today, after using the word a few times and having it flit around in my brain, it just makes me so fucking sad. This diagnosis means that my mother will never, ever get better. She will never, ever remember more than she does at this moment.  If you were to meet her today and again tomorrow and again next month, she would be meeting you for the first time.

Every.single.time.

Our only hope is that between medication and exercising the hell out of her brain, she will slow down the progression of this disease. But it’s all up to her now. This medication is not a magic pill by any means. If Mom doesn’t work her brain by doing jigsaw puzzles and reading and word jumbles, then even that pill can’t slow things down much. But there are physical issues, too. If she stopped smoking, she could slow the disease down. If she can control her diabetes better through nutrition, she can slow this down. If she can keep her blood pressure and cholesterol at good levels, she can maintain her memory as it is now. It’s completely doable….but must feel daunting.

And then the neurologist used the word “Alzheimer’s.” The only way to truly know if someone has Alzheimer’s disease, is to place a slice of their brain under a microscope. Obviously that isn’t going to happen, but with Mom’s family history of dementia and Alzheimer’s, the doctor felt fairly confident that her memory loss was also a part of Alzheimer’s disease.

skull

You know, that word felt like a slap in the face. I don’t think I fully expected to hear the word, and although it didn’t change the diagnosis at all, it still stung. My mother’s initial reaction was, “Well…at least I have life insurance.” I reassured her that this wasn’t a death sentence (yet), but now after thinking about it for a day, I completely understand her reaction. It *does* feel like a death sentence. We watched one of my grandmothers die from Alzheimer’s and it was absolutely horrific. She could no longer talk by the end and was literally a shell of the woman she once was. And maybe that was what Mom was thinking about.

But the doctor said to my mother, “Don’t just give up on life because what I told you.” The doctor often sees patients just shrug and say, “Well, that’s that. I’m doomed,” which is basically what Mom’s initial reaction said, too. The doctor said that if she works hard and kicks and screams, she can at least maintain her cognitive health as it is now.

Mom’s posture changed when the doctor said this last bit to her. Mom said that she could do this. She’ll work hard. And if there is one thing just about anyone who knows my mother will tell you, is that she is a damn hard worker. But…usually that hard work has been for other people. I can only hope that through our efforts to encourage her by playing card games and doing puzzles with her, Mom will step up and fight for the memories she has left.

I’ll be honest and say that I don’t have much hope. I know my mother and I know she won’t quit smoking. I think she’ll take her medication and I think she will try to do some mental exercising, but I think part of her has given up.

I hope I’m wrong. I hope Mom’s mind stays on an even keel for a while and I get to have her for a while longer. I hope she works her brain so much she kicks my butt at UNO. She’s been known to surprise all of us a time or two, particularly when it comes to her health. And now I’m hoping for at least one more surprise from her.

Here’s to hoping.

And hard work.

And a cure.

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.