The Good, The Bad and the Exhausted

It’s been a rough few months for my family. My mother’s health and mind are declining faster than I’m able to cope with. My father’s memory is fading, too. My brother was in the hospital for a month and I ended up in the hospital for four days for pancreatitis. We were all feeling helpless and at times, hopeless.

But within those two months of ickiness, there was Mother’s Day, my dad’s birthday, and my birthday. My son finished fourth grade, his baseball season ended (hopefully his last season ever) and he grew another half inch.  I lost 5 pounds (although I don’t recommend pancreatitis as a way to lose weight). My husband, son and I all read a bunch of great books during this time, had several amazing sushi dinners at our favorite restaurantsocks, Ichiban, and we finally saw the movie, Wonder Woman.

When the shit started to hit the fan in May, I was finally running more after this long winter. I was up to 8 mile runs on Sundays. It was a great stress reliever, but it was also nice to have mileage goals in mind again. I had hoped to be at 12 miles by now, but my body had other plans for me. So this morning, after my first full cup of coffee in a month, I put on my favorite socks and went for my first run in three weeks.

I’m not gonna lie. It was really difficult. The first half wasn’t bad, but I started to lose energy just after mile one. Had to take walking breaks on the way back and finished the 5K with nothing left in me. Just thinking about the power of my sock capes flying behind me was the only thing that pushed me through that last quarter mile. The heat and humidity were a factor, too, I’m sure.  I nearly passed out twice after I got home (saw spots, light headed) and my energy didn’t really return until the evening.

I don’t know about you, but I’m not very good at treating myself well. But I really need to. I need to learn to be good to myself. I need to learn to let things go, to not stress over situations that I cannot control right now, or possibly ever. I need to listen to my body. I need to admit that it’s ok I don’t run as much as I want to and it’s ok I can’t eat whatever I want right now. It’s sucky, but it’s really ok.

Now that summer has finally arrived here in Maine, I’m trying to have a more positive outlook on at least the next few months. If I can’t run as much, I’m hoping to take more walks in the sunshine and try a little more weight lifting. If I can’t eat ice cream every day (which is a crime), I’ll try to find yummy but healthier options. I’ll try to spend more time with all of my family, bring out photos to remind all of us of good times in the past and continue to plan good times for our future.

I will try to live in the moment. I will try to not wish away the weeks, wanting the painful bits to hurry up then go away. I know the pain will pass and I can get to the other side eventually. I just need to live through it, learn through it and move on. As my dad always says, “You can’t live more than one day at a time, right?”

Right.

So here’s to you and me, living in the moment during this summer of hope. Let the good times roll!

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.

 

 

 

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.

 

In sickness and in health….

This afternoon, in a quiet voice with tears building behind my eyes, I said to my husband, “I hate you just a little bit right now.”

He replied with a sigh, “I know. I hate me right now, too.”

Today, due to years of unhealthy habits, my husband was required to start using insulin.

He’s been diabetic for quite a while now and has taken medication on and off.  He’s overweight and unhealthy and has done nothing about it.  He eats a lot of fast food and drinks soda and never exercises.  His favorite pastimes are playing video games, watching movies and reading.

And you know what?  I am royally pissed off right now.  Both my son and I just watched my husband, as he injected himself in the belly with his first shot of insulin.  My son couldn’t watch and turned away while plugging his ears, asking me to tell him when it was over.  But I stood there and watched.  I wanted to see this.  I wanted to show him that yes, I will watch him do this to himself, like I watched him consume tons of junk food and sugar and carbonated beverages over the 19 years we’ve been together.

Did I ever try to help him, you may ask?

I

tried

everything.

I sympathized and offered to make him better lunches.  I empathized and asked what can I do to help.  I asked him to walk with me. To run with me.  To lift weights with me.   I carved out extra money from the household budget to buy healthier foods.  I begged, I ignored, I yelled, I cried.

What the fuck else was I to do?!?

I kept thinking that once we had a child, my husband might start to eat a little better or try to get a little exercise.  I thought that having the responsibility of caring for a little person, and being a good example for another human being, would be enough to *want* to change.

But it wasn’t.

Yet the thought of possibly going on insulin made him change, although it was already too late.

Last week, he began nutrition counseling for diabetes, and since then has attempted to cut soda from his life and start eating well.  He’s keeping a food diary and for the first time in many, many years, I can see that he’s really trying to do this right.  The other night, he called on his way home saying he was bringing dinner.  I thought it might be Chinese food or some kind of takeout, because that what it would have been a month ago.  Yet he came home with a roasted chicken and grapes and all the fixings for a salad.   I was stunned….and a little bit giddy.   Is this his tipping point?  Is the threat of insulin shots what he needed all along?  And now that he’s officially on insulin, will he continue to eat right (or attempt to) and maybe exercise?

I have hope.  I have a lot of anger, too, but I’m trying to let that go. (I’m especially angry that I need to learn how to inject him with the “special” syringe if his blood sugar becomes so low that he goes into a coma.  I’m not happy that I have to even know about this, but I’ll learn it because I don’t want my husband to die.)  I know he’s a bit depressed right now, and he’s angry at himself, too.  He can’t believe that he let himself get to this point…and honestly, I can’t either.   I had hoped he would have learned from his father (who is also on insulin).  So to try and break this horrendous pattern, my husband wanted Bri to watch him take the insulin shot, hoping it would scare him so much that Bri would eat better and become more active so he wouldn’t ever have to take insulin himself.

Want to hear my theory?  You need to set a good example, be a good model of behavior, then perhaps your children will follow your lead.  But do as I say and not as I do?  Bullshit.

So…where does this leave us?

Exhausted and sad but hopeful.  With a weight loss of at least 50 pounds, maybe he can get off of insulin.  It can happen.  But I can’t make my husband eat right and exercise.  My son can’t make his father healthy.  There’s only one person who can make this happen.

Just one.

You can do this, Wally.  I have faith in you. ❤