And then there were four…

My mother always said that when she gets to the point where she needs to be in a home, then that’s what we need to do. She never wanted to live with her children because she never wanted to “burden” us. But now that we’re facing the truth that she needs to be somewhere besides her own home….well, let’s just say that without planning for the future, we can say whatever we want but it doesn’t make it a reality.

I moved Mom in with my family a few weeks ago. She just had a major surgery that would help her circulation and we just couldn’t send her back home. She had stopped taking her medication, even with many reminders. Her diabetes was out of control (will lose several toes next week), she barely ate, and her house was….awful. You have to understand that my mother was always an immaculate housekeeper. Everything was cleaned A LOT. Very little clutter (except the occasional tabletop or closet) and just a really neat house, you know? I realize that when you get older, you can’t do as many things. I get it. But not like this. Food was rotting on the counter. Plants could grow on the carpet. Burnholes in the mattress and clothing. This wasn’t my mom’s house anymore. This wasn’t my mom. And this wasn’t safe.

So, what to do? Assisted living? Nursing home? My house? Honestly, there weren’t many options. At that time, if she didn’t come home with me, she’d go back home. And I couldn’t do that. I felt like that was neglect on my part. Cruel, even. But is it cruel to take her away from her home? Maybe. But the things that have happened at my house since she’s arrived has made me realize how bad her dementia and her physical health really are. Every time I had to go to her house, I was always worried about what I’d find. And don’t get me wrong, there were good days. But so many bad ones.

Is it any better with Mom living with my family? Well…..yes and no. She now takes her meds, she eats, she changes her clothes every day, she washes up and she showers. Most of those things were not happening at her home. Is she happy? I’m not sure. Was she happy before? I don’t know. I really don’t.

And what about my family? Lots of changes. Difficult some days, but we laugh as much as we can. My husband has been an absolute saint through all of this. He’s been so supportive and helpful. My son is doing well, although we have had many discussions about what we don’t like about our current situation and what we do like. He loves his grandmother with everything he has, but it’s still difficult when you lose your bathroom and Grammie acts odd sometimes. Both my husband and I try to carve out one-on-one time to spend with him. We always spent time with him before, but now it’s even more vital.

And me? Well, I finally start counseling next week so maybe that will help? I’m definitely feeling more stressed than ever before, feeling pulled in so many directions. I ended up crying on the phone to the hospital when they changed my mother’s appointments after I had completely rearranged my life so I could get her there. The woman on the phone was unbelievably sweet but I can just imagine what she thought.

I often think about my brother and wonder what he would think of all this. I miss being able to talk with him and vent. My sister has been as good of a help as she can be, but Phil would help us find he humor in all of this. I’m trying to do that.  Like guessing which cupboard my  mother will put the peanut butter in. Yesterday was the refrigerator so I got that one wrong! And at least now there are as many humans in the house as there are cats!

alzheimers-nurse-humor

We are working on a plan for when Mom’s health changes. But that takes time. I’ve already waded through piles of paperwork, nurse and social worker visits, and there’s still more to be done. Do I want my mom to stay with us? Yes. Most days. I love her and I’m really trying to do what’s best for her. But I also know that I need to have boundaries. My family needs those boundaries. When Mom’s mental and/or physical health gets to a certain point, then another move will have to happen. In the end, I know I need to do what’s best for me and my family. I just hope I’ll know what that is when the time comes.

 

 

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Suddenly

I know. You want to sing it, don’t you? It’s ok. You can.

This morning started out as a typical Sunday morning. I slept a little late, watched a bit of tv with my boy, baked breakfast cookies for the week and started laundry. After a while, I decided I didn’t want to go out and walk on this dreary day, so I started to move furniture in the living room so I could work out there. I had to move my body but nothing too strenuous. As I was moving the hassock, my  husband asked me a question. I started to answer, then stopped. I tried to take a breath then apologized to my husband and started to sob.  He ran over to me and hugged me and just let me cry.

I had this sudden feeling of powerlessness and loss and sorrow. My mom is about to go through a pretty intense operation on Tuesday to help her circulation in her left leg. It’s a tough thing for anyone to go through, but a 71-year-old woman with a frail body and mind? It’s even tougher. I’m scared for her. I’m scared for us. I think she’ll make it through the surgery, but her mind might not. Will she know my sister and I when she wakes up? Will she know her son is gone? I don’t know.

I was missing my brother this morning, too. In the fall and winter, nearly every other Sunday my brother stopped by my house to have tea while I baked something. He would tease my son or chat with him while I washed dishes. I’d lean on one side of the counter while he sat on the other and we’d munch on goodies and talk about our week. Eventually we’d head into the living room and continue our conversation. It was a part of my week I always looked forward to.

I miss him so fucking much.

I wish he’d be at the hospital with us while we wait for Mom’s surgery to be over. He’d make us laugh and just be there. His presence just made me feel better. He’s part of my home.

After crying in my husband’s arms for a few minutes, I walked about the house and realized I just needed to be outside. So I slipped my headphones on, told my family I was going for a run and left. This is only the third run I’ve been on in the past month, but it felt ok. It was really difficult and I trudged more than I ran, but I refused to walk. I needed to sweat out some of this anxiety and sadness and just plant one foot in front of the other. So I did. And it was ok. I felt better than I had when I left my house. So that’s something.

On a side note, if you read my last post, you know I’m trying to get a counselor/therapist/someone to talk to. It hasn’t happened yet. I did make a few calls, finally got an appointment, but then cancelled it. Our electricity (like many in Maine) had been out for a few days last week and I couldn’t deal with doing one more thing. And no, I didn’t reschedule yet. I need to get Mom through her surgery and then we need to take life day by day after that. Am I making excuses? Probably. But the thought of adding one more thing to my life at this moment makes me want to pull my hair out. And I like my hair. So this will have to wait. For now.

If you’re feeling particularly generous or positive or hopeful on Tuesday morning, try to send a little of that my mom’s way, ok? I know she’s a tough ol’ bird, but a little extra optimism wouldn’t hurt.

That First Step

I’ve always said that blogging has been my own source of therapy. I write about my issues, get everything out of my heart and head and typically I feel better. I often get feedback from my readers, many of them being my friends, and usually I feel like my head is clearer, my body a little lighter and I’m not as alone as I thought I was.

But now….now I think blogging might not be enough.

As I’m writing this post, my brother has been gone for 11 weeks, 5 hours and 11 minutes. I think I hurt more now than I did that day. Everything was fresh and raw and horribly painful that day, but now I feel empty. Hollowed out. Lost.

For the past few weeks, I’ve known that I should seek out counseling. The combined stress of trying to care for my mother and dealing with my grief has been overwhelming.  One morning when my boss encouraged me to give the counseling program a call, I broke down in tears and told her I just couldn’t. My mom’s health has deteriorated very quickly in the past few months and I’m taking her to one doctor or another each week, sometimes twice a week. The thought of adding something new to my schedule broke me.

Then my best friend started nudging me, trying to get me to make that call. I put it off for another week then finally made the first call. This was just to set me up and give me a list of counselors I can call and try to meet with. My stomach hurt the entire time and I willed my voice not to shake. After the call ended, I put my head down on the table and cried. If it’s this difficult just to get a list of names, how the hell will I be at an actual session?

Now that I have my list, I still haven’t been able to call anyone. In fact, two days after getting the list I thought, “Ok. This is good to have, but I’m really fine. I can handle this.” I spent the afternoon cleaning my mother’s home, having lunch with her and taking her to the store. Sometimes when I spend time with Mom, I miss her. I miss the person she used to be. I felt like that this week, but I also tried to make the best of the situation. We chatted about food, my son, our cats and how beautiful the leaves were looking. “I can do this, ” I thought.

And then I spent the evening with my son. We’ve been watching The Flas71289d196e3604c520bb1fdd7bf20310h on Netflix. So, if you haven’t been watching season 3 of The Flash and intend to, skip this part now. *SPOILER ALERT*  In this episode, Cisco, one of my favorite characters because he makes being a geek look so damn cool, has been seeing visions of his dead brother, Dante. Cisco gets his hands on an artifact that messes with his mind and he eventually must seal the artifact away. But in doing so, he will never see his brother again. His rational mind knows that this image isn’t really his brother, but it doesn’t make the task any easier. So he has to choose–see his brother again or lose his brother forever but save his friends’ lives.

As Cisco makes his choice, I cover my face and sob into my hands. My son asks me what’s wrong, but I can’t answer. I’m sobbing so hard that it’s difficult to breathe, much less talk. My sweet boy then slides closer to me on the couch and hugs me. I end up crying on his shoulder, literally. I finally pull myself together after a minute and let my boy go. All he says is, “Uncle?” I nod. I apologize to him, but he said that it was ok. Then he takes off his shirt and says, “Here, Mom. You can just use this as a tissue.”

I love that kid so much.

So…after that little breakdown, all from a damn tv show no less, I think I might be able to make that phone call. Or I know I should.

I know I have to at least try. That’s all I can promise myself right now. But it’s a start.

 

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.

 

 

 

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.