Lost and Found

If I’ve learned anything this past week, it’s that Alzheimer’s Disease slowly eats away one’s independence, dignity, eventually humanity. It not only destroys the individual, but it injurs and scars the caregiver and the family.

Last week ended with me losing my mother in a hospital (she can seriously boogie with that walker!) and also discovering at least 6 months worth of unopened mail in her home, including financial matters that should have been tended to. And this week began with me visiting the bank and crying at the desk of a bank employee.

Today I told more people about my mother’s condition. I told people that may only be on the periphery of her life, but ones that need to know why she doesn’t seem like her typical reliable self. My mother’s reputation has been in jeopardy for the past year, and maybe that doesn’t matter to some. But I know if my mother was in her right mind, it would matter to her. She’s been a respected citizen of our little town for nearly 50 years. She’s always been responsible. She paid her bills on time, mostly obeyed the speed limit and every single person I talk to says, “She’s such a sweet woman!” I don’t want anyone thinking less of her because I didn’t pay attention to that growing pile of mail in her living room. If I had done my job, I would have helped her open that shit at least two months ago.

mailBut I didn’t. I didn’t want to. I was afraid. In the back of my mind, I knew my own responsibilities for Mom’s care would increase. I knew I would have to have uncomfortable conversations with Mom about finances–her last bit of true freedom. So I didn’t do anything. I didn’t do anything until….well….until I did.  I had to stop putting it off and just ask Mom if we could organize her mail a bit. But something so simple is still not easy for me to do. To this day, I still dread the thought of my mother being angry with me. She put fear in all her children, and although I can’t speak for my siblings, she put the fear of disappointing her, in me.

So now when I need to ask my mother permission to do something, like open her mail, I’m waiting for my mother to bite back, to tell me “no” and that she has everything under control. But she never says that. Not anymore. She knows she no longer has everything under control.  And as much as it pains me to say it, I guess that’s my job now.

In the midst of things…

My family and I are in the middle of the 5th month of our spending moratorium. After cancelling our vacation,  we seem to always search for that silver lining. We have our days that we feel sorry for ourselves and mope around the house, whining that we’ll never go on a nice vacation….ok, I’m the one that really does that….but other days we try to look on the bright side of things.

For instance, with our tax refund this year, we were able to not only pay off the credit card but one of our loans that had some old debt on it. We paid it off a year early! And with that bit of extra money, we’re hoping to pay off this new car loan by January.  So what does that mean for us? Does it mean we can ease up on the moratorium and try to have a little fun? Well…not really.

Since we paid off the loan, we were able to loan two of our family members a little money (just $20 or $25) when they needed it and it didn’t hurt us too bad. That was a good feeling, and they both paid us back which is even better! But for the past few weeks, I’ve spend more on groceries than normal. I haven’t been as diligent. I kept saying, “Oh, we’re good! Look at all we’ve done!” And then I felt the squeeze. My husband didn’t work 40 hours one week, we both had doctors’ appointments the next week, two of our cats were due for the their shots…you get the picture.  That’s when Holly started freaking out.

I started getting grumpier than my normal. I started interrogating my husband on what he bought and where. I ate cereal for supper more than once, trying to spread the meals out a little more for the rest of the family. Of course, then I gorged myself on chocolate chips on those nights because it felt good and I needed to feel good. Which made me depressed about my weight, my lack of running and the fact that we were low on chocolate chips.  See that nasty downward spiral?

But then little things started to pop up that made me happy.  Little things that were really big things. Like my mom taking my son and myself to McDonald’s for lunch. We went INSIDE the building. We sat INSIDE! Last week Mom went grocery shopping with me. She actually went INTO THE GROCERY STORE. This is really big. I haven’t been inside a public building with my mother in over a year, except for hospitals and doctor’s offices. When we went into the store, she folded up her walker, put it in a cart, and started pushing it all through the store. And I mean all through the store! It was awesome! Really, really awesome. She recognized a few people, she remembered what was on her grocery list, she knew what was going on. It was FANTASTIC!  True, she was wearing the sweat suit she seems to want to wear all the time and she didn’t have her teeth in, her teeth that were never found, but who cares? She was aware and coherent and cruising along. It was a good day.

Other little things that have made me happy? Watching the Oscars with my brother. It may have been in the hospital, but he made me laugh hysterically, like he always does. And right now, at least this week, he’s feeling better and he’s home. So that makes me happy. Hanging out with some of my family this weekend, just having lunch, chatting, watching The Love Boat–all made me happy. Listening to my child spell words for his father–that not only made me happy but amused the hell out of me. Watching comedians on Netflix, laughing at a joke my husband told, talking with some of my favorite people via email and Facebook–all of that made and makes me happy.

There really are silver linings out there, somewhere. Not for everything for sure, and certainly not all of the time. Don’t get me wrong, I’m not all sunshiney and farting rainbows, people! I’m not always happy when friends they tell me about their fantastic vacations they’re planning or what incredible (and incredibly expensive) outings they’re going on with their children. I can get downright pissy. But when I come back to myself, I remember that this debt business isn’t their fault. That’s all mine (and my husband’s). And although I might think snarky thoughts and hope they get into debt because of their fabulous vacation, I usually snap out of it and wish them well and try not to be such a bitch.

Then I go off and start looking and searching and hoping for the bright side, the silver lining, the good stuff.

It’s usually out there.

So let’s go find it.

 

Looking For Motivation

Two winters ago, I gained 7 pounds due to less activity and too many goodies. By the summer I had lost a few of them, but this winter I gained them all back with an extra three for good measure. That’s 10 pounds extra of Holly that I wish I didn’t have. And yet…I can’t seem to care that much.

All of my pants still fit, but most are much more snug than they should be, thus giving me that lovely extra-large muffin top. I cover my squishiness up as best as I can with layers of turtlenecks and sweaters. Winter in Maine is good for some things! And even with all of that, I can’t seem to get my butt on the treadmill or outside more than I do. I’m only running 6-9 miles a week and attempting to do a smidge of weight lifting a few times a week, too. You might be saying, “Hey! That’s great! At least you’re doing that much.” But it’s not really great. It’s not enough, especially since I’m eating anything I want and not giving a damn. Yes, I am moving, but I’m only one step away from Couch Potato Kingdom.

There was a time when I would faithfully work out 6-7 times a week, even though it stressed me out to do so. I justified it by saying the physical activity did me more good in the long run. But now, just the thought of trying to squeeze 6-7 workouts in a week, makes me want to cry. I give myself Wednesdays off so I can volunteer at my son’s school library in the morning and I give myself Fridays off so I can go to my mom’s in the morning and fill her pill container and check her blood sugar and just make sure all is well.

So what are my excuses the other days? I’ll squeeze in a 20-30 minute workout most mornings, but honestly, I have no excuse for not running on the weekend. I have the time but I’m just so apathetic. I have no doubt that part of my apathy stems from my mother’s illness, my father’s newly discovered memory loss and even our lost vacation. But I can’t keep going on like this because I know my physical health will suffer and my mental health is already deteriorating. The winter affects my mood anyway, so the lack of exercise makes me feel even sadder than usual. I tend to fix that sadness with more reading and chocolate and wine. And that, my friends, is asking for trouble. (Except for the extra reading. That’s always good, no matter how you look at it.)

My friend, Aymie, lost 50 pounds last year and ran over 500 miles. She looks fantastic and you can tell she feels great, too. My friend, Moriah, is on a journey to lose weight and to get healthy. She’s lost 14 pounds so far, and although I know it’s been tough, she’s doing it and I’m so damn proud of her. And yet why can’t these women motivate me to get my ass off the couch? I’ve been inspired by these women and others in the past, so why not now?

Maybe I need a goal. Something to shoot for. Use a website like stickk like I have before? Cover my Facebook feed with memes of encouragement?

Maybe I just need to hold on until spring when the temps are warmer and we’ll see the sun more. Although I think the zipper on my jeans probably can’t wait that long. I really need to find something now to make me care about my level of fitness.

What do you do to help with the winter blues or with the inactive times in your life? Is there something that helps you get up and go? What motivates you to take care of yourself?

As usual, any and all suggestions welcome, my friends!

The Right Stuff

Taking Mom to her neurology appointments are emotionally exhausting affairs. They make me feel very uncomfortable. It is obvious that in this particular office, I am my mother’s parent. I am asked questions about her health, her memory and the level of her confusion.  Don’t get me wrong, this is done in a very respectful way. The doctor asks my mother if it’s ok to ask me questions, and so far, my mother has always replied very happily, “Absolutely!” I think she likes that I’m in the hot seat before she is.

Then the doctor turns to my mother and asks her a few general questions about her health or her habits before getting into more serious memory testing. Meanwhile, I sit diagonal from my mom and stare at the floor. I look up occasionally to see the reactions of both the doctor and my mother, but mostly I just try to shrink into myself and disappear. This seems like such a private encounter to have to witness. It feels like I’m watching my mother be interrogated and she appears very vulnerable during these interviews. Sometimes tears run down her face while she answers the questions. I desperately want to leave the room while this is going on, but I have to stay. I give the doctor clues when Mom’s answers are not true or just a bit off. Like today. The doctor asked Mom if she ever goes to the library to get reading material. She book-mobilereplied that she didn’t, but the bookmobile comes around once a month.

Ummm…..what the? We haven’t had bookmobiles in this area for about 40 years. No joke. It was such a random thing to say. I was surprised she didn’t mention the library where I work. But something about that bookmobile memory was just floating around in her brain and it popped out. So bizarre.

Yet most of Mom’s other answers to the variety of questions? FANTASTIC!  At the end of the doctor’s interview, she told my mother how impressed she was with how she did. At this point in the year, Mom should have been on this Alzheimer’s medication for 6 months. But due to the snafu we had this summer, she’s only been on it for a month. The doctor knew about this and yet Mom’s memory and level of confusion had improved tremendously since January when she initially saw the doctor. Let me say that I love this neurologist. She’s always brutally honest, there’s no sugar coating for this lady, and yet she conveys empathy and compassion.  She told us that she realized that last January’s appointment could have been a particularly bad day for Mom and today could have been a particularly good day. But even with that, Mom was more than keeping her own. She was actually improving. The Aricept that Mom is taking typically just maintains people’s memory loss, or delays the advancement of the loss, but in 10% of the patients who take it the medication improves the patients’ cognition. The doctor said that Mom may actually be one of those 10%.  YES!!

*big smiles and clapping hands*

I know that everything can change very quickly. I know that most likely, there will be a day that my mother will not know who I am. But that day isn’t here. Not yet. And it might be just a little further off than it was before. And that, my friends, is reason to celebrate.

Three cheers for a good day!

 

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.

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.