Category Archives: Family Life

“See ya later”

Bare with me folks, this is going to be a long one. It’s not pretty, it’s not elegant, it’s not even edited. I’ve delayed this post because I didn’t have it in me to go where I need to go for this one. The only way I can get this out is to just do it. It has to be raw. I would skip it altogether if it hadn’t been for certain connections.

Through this blog, I’ve been contacted by others who’s lives have been touched by Alzheimer’s/Alzheimer’s type dementia, whether through a comment or a private email. Because of those connections and previous posts, I feel like I have to post this update before I can move on to another subject so for the few of you who don’t know, here goes.

Grandpa has passed.

To be fair, the grandpa I have always known has really been gone for a long time, but that didn’t stop me from holding onto what was left for dear life. He was having many more bad days than good and more often than not, he didn’t even wake up for visits anymore, but there were still moments, good moments in the last year when his face would light up when he saw me in between dozing, and the best moments when he knew who I was from 50 feet away and be thrilled to see me. Those moments were worth holding on for, however fleeting.

I’m going to tell you how this all came to be over the last 15 days. The day of my previously mentioned shuttle incident, my mom told me that grandpa’s nursing staff was using the word “dying.” (They’ve always been very careful not to use that word, so we took notice)

They had our attention and it was scary, but we didn’t rush to any immediate reactions. This was the 5th time the family had been called in for him over the years. Each time, he always made fools of us by pepping right up the next day. I would always think Well, he is older now and his condition is worse. This might really be it, but it never was so when I got this call, we agreed that I would try and wait until Friday to go back to Muncie since they didn’t give us a timeline. If anything changed, mom would call. (I had an emergency bag packed, but I was hoping for more time. This was Monday, January 25, 2016.)

The next day, mom called me at work saying that the nursing home had told her to come out there. Grandpa had a fever. She wasn’t sure what it meant in the grand scheme of things and they didn’t say much else so I told her to go check it out and call me back. When the phone rang a few minutes later, my heart sank. I knew when I saw her contact ID on the phone that it was time to go. (It was.)

Sobbing, I headed for the door hoping to God it wasn’t the same shuttle driver from the day before. It wasn’t. When I got to m car, I went to get gas and then to my house to get my things. My dad called during this bit of time telling me that he and my brother were coming to get me. (Mom and dad didn’t want me to drive so they were coming to get me and my brother would drive m car back.) I argued, but they weren’t having it so I packed some more things for what was clearly going to be a longer trip.

I wasn’t really thinking straight. You’d have thought I never packed a bag in my life the way I just grabbed every black and grey item I had and tossed it on a pile with my 15 pairs of underwear and 2 pairs of socks. (Really.) As I did this, I couldn’t help but to remember when my grandma Mimi passed. She had been in the hospital for a while and I had been there everyday. I can’t remember how many days or weeks it was, but I wasn’t leaving her, that is of course until I finally did. I went with my dad to the Indianapolis airport to pick up her son who was flying in from Oklahoma. Before we made it to the airport, she passed. I have carried guilt over not being there ever since because I knew it was going to happen. I’m not exaggerating. Every part of me knew she wasn’t going to make it many hours longer, but I had to get out of that hospital so I left. I haven’t yet forgiven myself. It’s been 11 years and 4 months. I couldn’t live with that again so I had to do everything I could to get to grandpa before it was too late.

I threw my stuff in the car and called my dad. I told him I wasn’t waiting for him, which was a good thing since they hadn’t even left Muncie and I live two and a half hours away. I texted Jason to let him know I was leaving and I was gone. I drove 85 most of the way and made it in record time. I went straight to the nursing home.

Time felt eternal in the room, but looking back on it, I don’t think I was even there for a half an hour before he passed. Five minutes after I got there, my aunt came and said her goodbyes. Just minutes after she left, my cousin walked in and a very short while later, he was gone. I believe he held on for that goodbye, one final thing he could do for me…something else I can never repay him for.

People always say their whole world changes when someone dies. Most of the time, that isn’t entirely true, they’re just a wreck of emotions in the moment. I say this not to diminish anyone else’s loss; I too have said it, but felt much lighter soon after. I’m still an emotional mess, but I can honestly say that my world has forever changed and there’s nothing cliche about it. All this time, something about having him here felt like still having a piece of my grandma too; they were parts of a set. With his loss, I feel like I’ve just lost them both. Truly, I know that I am lucky to have had my great-grandparents for so long, but maybe it just makes them that much harder to lose?

Everyone loves their grandparents, they’re the people who are supposed to spoil you and say yes when mom and dad say no. That’s the stereotype anyway, but they were so much more than that for me. For 27 years, they weren’t just grandma and grandpa, they were my second mom and dad, and my parents know this.  They were my foundation and my mental/emotional support system. It sounds stupid and selfish to say that I believe I was closer to my great-grandparents than anyone else has ever been with their own, but of course I feel that way. Doesn’t everyone? Our own relationships are all we know so of course we feel that way. So yes, that’s how I feel and I don’t believe there’s a person in the world who understands it.

For the last fifteen days, I’ve had to fight off the nightmares, remind myself how to function, and just figure out how to exist with a piece of me missing from the world. My friends and family are checking on me and Jason is incredibly supportive. I appreciate it beyond their understanding, but this one isn’t going anywhere. I used to think being his caregiver was the hardest thing I’d ever gone through, but my God, this has trumped that by a mile. I’ve been gutted.

Grandpa is so much better off now. I know this with every part of me. He no longer had any quality of life and he didn’t deserve the hell that he was put through over the last few years. Now he is finally whole again and with grandma, and with all of us left here. He’s once again the brilliant and stubborn man he always was, but knowing that doesn’t make it better. We humans can be a really selfish species when it comes to loss and as much as I’m glad to see his suffering end, I miss him.

Edith_and_Earl_tattoo
Always together & always with me.

When I left the nursing home after he passed, I got in my car and the first thing I heard on the radio was Brantley Gilbert’s “Hell of an Amen.” It’s fitting. Earl Ray Flowers lived a full life in his 97 years on this earth. In the end, it was a hell of an amen.

I love you, grandpa. I’ll see ya later.

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Think Before You Speak

In the back of my mind, I spent the day searching for what would be my next blog post. To my disappointment, that topic punched me in the gut on my way home this evening. Let me tell you about my day.

First, I should set the scene. I work in a small city, but for a major corporation with about 2,000 employees at my particular location (there are many). A company that big in a town this size, perhaps in any town, leads to parking problems, hence I ride a company-provided shuttle from a rented parking lot to the office, 3 miles away. I’ve been doing this for 11 months. It’s routine and I’m fairly familiar with each driver.

Today was a regular day on the job. I made some progress, worked on a couple of documents, and even handed in a final draft of one to my editor so I was feeling pretty good about my day when I headed home. As I’m standing outside of the main entrance, I’m talking to my mother on the phone when the shuttle I’ve been waiting on pulls up.

My first thought was oh no, not this guy. The driver is truly the only driver on the afternoon shift that I dislike. This man has no sense of social etiquette, professionalism, or personal boundaries in conversation, but his voice has a polite tone so people are often fooled by him. He gives me the creeps. (Other drivers have told me I’m not alone.)

Oh well, I thought to myself. I’ve just gotten off of work. I’m more than ready to go home–you know the feeling–I’m ready for a dinner date with my mister and it’s January, I’m not going to stand outside and wait 10 to 15 minutes for another shuttle when I could already be at my car if I just take this one. (Side note: Mister is what I call my boyfriend. Boyfriend just sounds juvenile for a man pushing 40.)

Anyway, I suck it up, say my best friendly hello, and take the first seat. I’m right behind the driver. (I always take this seat when I’m first in so I can be the first out.) The driver attempts to strike up a conversation even though he sees that I’m on the phone, so I try to respond, but also point out that I can’t really chat with him at the moment.  He gets out and walks around, I’m assuming to stretch his legs. Eventually, 10 or so more passengers climb in, he comes back and radios to the other drivers that we’re heading out so they can head in.

I’m still on the phone with my mom getting an update on grandpa, who may have just taken a turn for the worse. This is a call that I’ve been dreading for years. As she is telling me this news, I hear something that infuriates me to my core. At this moment, I imagine myself with blood streaming from my eyes and ears as my blood pressure has rocketed through the roof and headed straight to Mars!

The extremely loud driver had just made a joke over his walkie-phone to another driver (we’ll call him Ted) about Ted’s senility and whether or not dementia had finally set in. This idiot goes on, but at this point, I can’t hear anything he’s saying. I’m fully enraged and ready to pounce. For a split second, I thought I was going to lunge at the man. I pictured it vividly and if there hadn’t been other passengers, I’m not so sure I wouldn’t have.

Let me point out that as I’m on the phone, I’m crying. I’m trying to hide it so that at least not EVERYONE on the shuttle knows it, but I already had confirmation that the man in the seat two feet away is aware and I’m certain the driver is too, along with anyone else in the front half of the bus.

I have never in my life held back as much as I did in that moment. Maybe I shouldn’t have, maybe I should’ve embarrassed this man in front of every passenger riding with us. Maybe I should’ve screamed and cursed, maybe I should’ve thrown something, maybe I should’ve politely explained to him why he is an utter imbecile with no sense of his surroundings, but I didn’t. After all, I do need to keep my job. Instead I dug my finger tips into my seat, bit my bottom lip, and loudly told my mother who asked what he had said that I would repeat the inconsiderate, moronic remark when I was in a more appropriate setting.

That’s my long-winded way of getting to my topic, which is: Some things are NOT funny. I love comedy and I’m a fan of comedians who say everything is fair game, sometimes I even agree with them, but the shuttle ride from work is NOT a damn comedy club! I didn’t walk into a show knowing nothing was off limits and I could be offended, all I did was head home from work.

BE AWARE OF YOUR SURROUNDINGS.

KNOW YOUR AUDIENCE.

That last one doesn’t just go for writing. Know your audience. If you’re in even a semi-professional setting where you don’t know everyone, it’s probably best to not make such jokes or comments. You never know what someone is going through at any given time and regardless, dementia is not funny. Alzheimer’s is not funny. Does watching someone you love, someone you’ve idolized since birth, forget who you are and wither away into nothingness sound funny to you? No, it doesn’t. Do you know why? BECAUSE DEMENTIA IS NOT A DAMN JOKE!

This disease has become the biggest curse of my life; it has become my biggest fear and my greatest cause. If you’re still with me, sharing my day, first of all, Thank you! Second, please, PLEASE think before you speak. Please know that this is a disease that destroys families. There’s nothing funny about AIDS or cancer, and there’s nothing funny about dementia. If you’ve been touched by this disease, I would love to hear your story too.

It’s Time for Another Edition of Grandpa Guilt

Let’s start with a quick recap of recent events, shall we? …. and let us all remember that quick can be a relative term.

I relinquished my full time caregiver status over Grandpa and moved into an apartment with a friend. I’d still swing by on my days off from my new job. We’d chat for a few minutes and he’d just doze off, but he’d wake up every few minutes to see if I was still there. Some nights, I’d stop on my way home from work at 1:00AM just to make sure he was sleeping well and breathing normally. It’s been a little over a month and everything seemed great, until two nights ago.

After the last day of my temp job, I stopped at my parents on the way home. (We were supposed to make plans to go to the James Dean festival in Fairmount, IN.) Before I could open my car door, my dad was knocking on my window telling me to go to Grandpa’s; Grandpa thought he was dying.

I then peeled out of the driveway and drove my Buick Rendezvous across town to his house at unreasonably high speeds as if I were Dale Earnhardt, reincarnated. I was actually hoping to be pulled over because I was going to ask for a police escort, if not a ride-lights blazing. –The police must’ve been busy chasing down donuts because there were none to be found.–When I pulled in, my mom and aunt were on the porch, smoking, and they gave me the run down. I knew from their account of things that he was just having one of his episodes, as he does after not sleeping for days, which explains his weakness.

For me, this was nothing out of the ordinary. For them, it was as if the world ended. He was crying and talking about how the ARMY doctor told him he didn’t pass his physical and was going to die within 24 hours. The only thing odd about this story to me was that he said ARMY. Grandpa was a NAVY man in his day, you know, back in the ancient times. I convinced my mom and two aunts that all was well, but I’d stay with him and keep him calm. He was up and down, talking to the invisibles until just after 3:00AM before finally crashing. I stayed until 6:30 AM to make sure that he was going to stay in bed so that both he and his daughter, who also lives there, could rest. By the time I was finished with errands and back at my apartment asleep, it was 10 in the morning. At 11:15, I woke up to the 6th call from my relatives telling me that Grandpa was shaking violently and uncontrollably, his blood sugar was only 40, he was vomiting, and couldn’t get warm. They’d called an ambulance.

—That’s the back story. I did say quick was relative, didn’t I?

I was at the ER as fast as I could fly. Conditions like congestive heart failure, fluid on the lungs, high white cell count, and pneumonia were being kicked around the room like a hacky sack in a high school parking lot. Congestive heart failure was a shock. While it’s true that Grandpa is 95 and his mental health is in shambles, his physical health has always been ship-shape, other than being a big wobbly from time to time. He’s never had any heart trouble and he gets a thorough check-up from his family doctor every couple of months.

Fluid on the lungs was far less surprising because within three hours, he’d developed what the family called “death gurgles.” He sounded like he was drowning with every breath. Before they could tell us what was wrong, they let us know that they would be admitting him. This hospital has never been known for its speed, but they got him upstairs in a nice, private room quicker than they’d ever done before. Once he was up here, his condition worsened. He went from being incoherent and barely responsive to not responsive at all. We couldn’t wake him no matter how much we shook our how loud we shouted. They eventually said to call in the family and prepare for the worst, so we did.

I had been forced to go home for an attempt at a short nap before that announcement was made, but after an hour, I awoke to my grandma and brother beating on my window. (We’ve discovered that it’s nearly impossible to rouse me after sleeping only an hour.) I drove back to the hospital and sat with him for a couple more hours. It was a morbid and terrifying sight. I knew what was happening, and I understood that it has been coming for quite some time, but saying goodbye is still difficult, as is watching your mother finally realize the reality of the situation–that may actually be the hardest part.

I didn’t want to leave, but no one wanted his daughter to be alone, so I was sent out to stay with her for the second night. Since I’ve moved everything to my apartment, my options were a recliner or the couch. I went with the scratchy, uncomfortable couch over the old, smelly recliner. As tired as I was, there was no way I could sleep. The couch could’ve been a pile of feather-filled clouds with Jon Bon Jovi sitting on it and I wouldn’t have been able to relax. My mind was all over the place;  I couldn’t shake being back in that house and walking in his room to check on him out of habit every ten minutes. As I laid on the couch, I couldn’t help remember the way I used to fall asleep on it next to his recliner when I was young. I’d always stay with him and my grandma, and every Monday and Thursday night, they would watch wrastlin as they called it. When I was young, I hated it, but it was the only TV in the house and there was no way around it so I would try to watch it with them, but I’d always fall asleep. Grandpa would toss a blanket over me without ever having to get up from his chair and once his “program” was over, he’d tuck me in to keep me from rolling off the couch and go to bed. I’d never know I’d even gone to sleep until he would wake me up in the morning with the promise of fresh biscuits and gravy, sausage, and coffee. He had been giving me just a touch of black coffee to drink with him and grandma since I was four; it made me feel grown up and special. I hated it, but I asked for it every morning.

These memories made me so happy for a fleeting moment, but then the guilt came flooding over me. I had lived with him for six years and been responsible for him for three and a half. In all that time, he’d never been sick. I made sure his diabetes was under control; I made sure he was at all of his doctor’s appointments and that he had all of his medications. I kept him in the house when he was off the rails and thought he was going to hitch up the donkeys and go in to town to the general store or when he thought he was heading off to work. We made one trip to the hospital in that time, but it was to make sure he wasn’t concussed after falling out of bed and hitting his head. After that, we put him in a hospital bed with rails on it and he was fine again. Now, not even two months after I’ve flown the nest, he’s in the hospital with the worst case of pneumonia he could possibly have, on the strongest antibiotic they can give him, and it’s looking like the end. How could I have left him in the incapable hands of strangers? Maybe if I’d stayed, he wouldn’t be sick. He wouldn’t have gotten too cold and he wouldn’t have been given so much sugar. Maybe if I hadn’t abandoned him, as he had never done to me, he wouldn’t be in the hospital dying of pneumonia. The rational part of me knows that his time is coming to an end, but maybe if I’d stayed, he could’ve gone peacefully at home rather than suffering at a hospital. Maybe this is my fault.

It was these thoughts that drove me to prayer, something I don’t do often or lightly. It was these thoughts that kept me up all night and left me with eyes too swollen to drive here this morning. Imagine my shock when I finally made it to his room at 11:30AM and found him awake, alert, and grubbing on barely edible hospital food. Imagine my suprise when he said rather clearly, “Well, hello there,” the way he always does when I pop in. This doesn’t mean that he’s out of the woods and on his way home, but it’s enough to let me breathe easy for a little bit.

For the last week, I’ve been contemplating whether or not to apply for a full time position at the place I just temped, or to relieve some of the incompetent CNAs at his house and work there. Everyone has been telling me for quite some time that I need to live my life and go on about my business, and I had been leaning toward applying, but last night was a wakeup call for me. If I feel this guilty now, there’s no way I can’t go back there if he makes it out of here. I’m not moving back in, but I can’t work an hour away 5 days a week with him in this condition and as much as I wanted to get away and “grow up,” I know now that I’m going to be “stuck” here for a while longer. I’ve spent too much time ranting about my terrible relatives who can’t take the time out of their day to visit him to become one of them. I can’t explain it, and it doesn’t make any sense, but I feel like he’s mine. He and I have always been close, but after moving in and becoming his caregiver, I feel like we’re closest. It doesn’t matter that my mom, my aunts, and my great-aunt has had more time with him. It doesn’t matter that he’s mostly unaware of the extent of my presence. Somehow, he’s become mine and I have to be around, even if he doesn’t know it.

“This Growing Up Is Getting Old”

**Thanks to Jason Michael Carroll for the title idea**

After six years of living with my great-grandpa and three and a half of being his full time caregiver, I have finally moved out. I thought it would feel like a much bigger release than it does. Do not misunderstand me; on one hand, it feels great, but on the other, I feel terribly guilty. I was absolutely elated when my best friend and I first found our apartment, but while packing, I broke down in tears. These weren’t, “I’m so scared, what if I am making a mistake and fall flat on my face out there in the real world” tears. These were guilty, “I feel like I’m abandoning someone who has always been there for me” tears. Fortunately, I have great friends who have been there throughout this ordeal reminding me that the grandpa I remember and love would not want me to be tied down to him 24/7 instead of living my life, and they’re right.

My grandpa was always a proponent of my getting an education and doing something with my life. That’s what I’m going to do. It hasn’t yet been a full week, but I’m completely moved–my room is still partially in boxes, but I’m out–and as I sit here typing this, I’m at my new job. (And yes, I am allowed to be doing this on the clock. It’s fantastic.)

Although my new job is in Indianapolis, I’m still living in Muncie. I couldn’t bring myself to go too far away and I’m still popping in and checking on him, but I can’t bare the burden of his well-being on my own anymore and I’m happy to say that I don’t have to. We have hired professionals to assist with his care so that he can stay at home, as he wished, and I can not stay at home, as I wished.

I’m nearing 25 so for most people my age, moving wouldn’t be as big of a deal, but this is my first real move. (Moving from my parents to my grandpa’s doesn’t really count in my mind.) I haven’t had a “real job” since I left the grocery store to take care of my grandpa. To be working again and on my own, sort of, feels daunting in someways, but perhaps not as much as it should. My current job is only temporary so if I don’t find a permanent job at the end of this assignment, I could be in real trouble. For some reason, I’m not worried. Instead, I’m worried about grandpa forgetting me faster now that I’m not around all day, everyday. Yesterday when my mom went to visit him, he asked her who she was. Just to hear that on the phone was heartbreaking. He’s done the same to me a few times, but each time was in the middle of an “episode” and easier to take. Yesterday, he was as normal as normal can be for him. I don’t know what I’ll do when the day comes that I walk in on a “normal” day and get the same greeting.

Many people are have been doubting my decisions, but they were decisions I had to make. It was time to “grow up.” With that said, I’m terribly sad by the fact that I’m almost 25 and I feel 55. I missed what were supposed to be the best years of my life. I missed the college experience I thought we all got to have. I missed the opportunity to be young and dumb. So while people are telling me it was time to grow up, in some respects, I grew up a very long time ago and now I’m already sick of it.

I suppose there’s not much of a point to this post. To be honest, I guess I’m looking a pat on the back, tell me it’s okay to do what I’m doing, and that the ages of 18-24 don’t have to be the best years of your life. I certainly hope they weren’t.

The Sentimental Ramblings of a Graduate

Warning: I try to keep this blog as far away from the diary side as possible, but tonight I am going to take a brief moment for myself and reflect on the last six years.

Why? In less than 10 hours I will graduate from Ball State University and that means something around here.

I realize that graduating from college is becoming standard, not to suggest that it should be impressive, but it is still a big deal for me. My parents did not attend college, nor my brother or any of my grandparents, so the possibility of going never seemed real to me. I grew up saying that I would go to college, but I said it because everyone else did; I never truly believed it. Even if I tried, I wouldn’t be able to afford it. Finding out about all the financial aid I could get was mind-boggling, and at first, I thought it was a gimmick.

Six years later, five in school and a year off, I’m graduating with a BA in English. As a creative writing major, I knew my job prospects were slim, but after taking care of my grandfather and not working a “real job” for three and half years, it didn’t even seem important anymore. Imagine my suprise when I was hired by a national company to work as a tech support web chat agent just yesterday. Adding to my resume, I will be working as a social media tutor at the Midwest Writer’s Workshop at the end of the week. These things have made me realize that the last six years, though trying and tiring, are going to pay off.

Re-entering the workforce in a professional setting helped make this notion “click.” I may feel 90, but I’m just now nearing 25; it’s time to start living the life I expected to have. I can’t wait for it, I have to go out and create it, and that is what I’m going to do. This is where I say thank you to the people who’ve supported me and given me that extra push every time I needed it. To my friends, my family, and a few key professors, thank you for investing your time in me. You are all very much appreciated.

-Mo.

Dementia, Tears, and Kenny Chesney?

If you were anyone else, I would use this opening paragraph to explain to you how powerful music can be, how it can take over your mood in just a few notes, or how the first few bars can suck you into a memory that you can’t escape for three or four minutes. But you’re different. You’ve managed to find your way to my blog for all things fine arts and that tells me that you already know about how important music can be in one’s life.

music-notes

Why is this on my mind today? Glad you asked. Moments ago, I was downstairs in the kitchen straightening up. (You know, dishes, sweeping, taking out the trash, setting the coffee… the usual.) Well I can’t do anything without music, enter iHeartRadio. I was listening to country–don’t judge me yet, you don’t have to like country to understand this–and a song by Kenny Chesney started playing. I love Kenny, always have, always will, and I have all of his albums. The peculiar thing is, I didn’t recognize the song. As a lyric lover, I sat down to pay better attention. (Some might consider this a mistake as I spent the next 10 minutes in tears.)

My mood went from thankful, because my grandpa had gone to bed early and I could relax a little, to being devastated because reality set in all over again, for about the 9 millionth time. This was the song.

*To understand why this brought me to tears within 20 seconds, you should probably know that I’m my grandfather’s caregiver. He is a month away from 95 and is living with dementia, which means I’m living with dementia. It’s no party.

*

Well folks, as I sit here, an oozing bag of tears, I can hear grandpa grumbling in his room. He no doubt thinks it’s 9:20 AM rather than PM, so I must go. I had more to say, but instead I’ll leave you with a question.

What song tells the story of your life? What songs capture you and orb you to another place, or possibly the past?

The Great-Granddaughter of Dementia

Day three, 4:11 AM. No sleep.

Grandpa has been rabid this week. I’ve been doing homework in five minute increments for three days, but I have a strong feeling that when compiled, it will be senseless. There’s more to be done, but at this point the choice now involves my health. Bed, it is.

I roll myself up in my comforter, burrito like, and close my eyes for a pleasant twenty seconds before hearing a stir from the baby monitor. I don’t have children, but I have grandpa. As much as it hurts both my body and my soul, I pry my eyes open just in time to see him–it’s a video monitor–emerge from his room, fully dressed. Again, it’s 4:11. He went to bed at 2:30.

I know he’s up for the day. I know it, but I’m still desperate for him to recline in his chair and relax, so I stay in my burrito. He is standing in the hallway choosing, living room or kitchen? Living room! Please God, living room!

Kitchen.

The clench of my jaw is broken as an explosive curse escapes from deep within my throat. I’m angry. I’m not angry with grandpa, not at all, but I’m angry with dementia. I’m angry with dementia, with science, possibly with God; I’m not even sure anymore, but I know I’m angry. I toss the covers from my body and descend the stairs.

He’s in the fridge. He doesn’t see his breakfast of eggs, sausage, and pancakes. He doesn’t even look, he just reaches for the eggs without any thought; all that remains is habit. I take them from his hand and show him the plate. He’s weak from lack of sleep as well. As usual, after three days, he can barely walk and he can’t form a clear sentence. He keeps reaching for eggs and I keep blocking, eventually I get in him to sit down. I test his blood sugar, feed him, and give him his medications. I’m hoping against hope that for some reason, today will be the day that a mild sleep aid knocks him out for a few hours. The doctor prescribed them months ago, but I don’t like to give them to him. Sleep aids make me nervous at twenty-four; he’s ninety-four.

 

He isn’t fazed. After he’s had his fill of the kitchen, he heads toward the living room to seek out his tennis shoes. It’s time for work. He retired in 1983 from a factory. The factory has been closed for seven years. He won’t find his outside shoes; they’ve been hidden for months.

The clock on the wall reads 5:05. I have less than 4 hours to get ready and leave for campus, but I can’t go back upstairs for my clothes or he will go out the front door. My mother is coming to watch him while I’m gone, but she’s never been here during an “episode” and he tends to only eat and take his medication from me when he’s like this. The morning is full of his typical dementia-behavior. I spend my time trying to keep him calm, hoping he’ll sleep and he spends his time fighting me tooth and nail. As 9:00 approaches, I know I’m not making it to my first class. I make a call to the doctor. “Dose him again and give him a melatonin tablet.” This is when I find out that she’d only prescribed a half dose of a mild aid to begin with. No wonder they have never worked.

Finally, he’s resting and my mother has arrived. I’ve skipped most of the day and now have one class left, but I need to go. I’m hoping he will sleep two hours, long enough for me to leave and return. I cover him up, give him a small squeeze, say a quick “love ya,” and head for campus. As I start for the door, a picture catches my eye. I’m six years old and standing on the front porch, here, holding hands with “Papaw.”

I go back to his chair.

I look at him lying in his chair, expressionless. I look at his abdomen to make sure he’s breathing, as I often do. He is. I pause for a few moments. It is now that I finally accept reality. Papaw is gone. No, he didn’t suddenly stop breathing, but he’s gone and he has been for quite a while. The jolly, Santa-like man that I grew up adoring, who prided himself on “smarts” and would have captured the moon had I truly needed it disappeared three years ago the moment he slipped into his first hallucination. He’s gone and dementia is pure evil, a gift to the human race from Satan himself. That’s my reality.

I start for the door a second time, hiding my welling eyes from my mom as I go. I wait until the car is warmed up before I let a single tear fall, but as the tires grab the pavement, I lose all control. I need to go straight, campus is ahead of me, but I turn left. I don’t realize it yet, but I’m heading to the cemetery. I’m going to visit my grandma, to cry and ask her to forgive me. I don’t know why I need her forgiveness. Was this recognition some sort of cardinal sin? Did I do something wrong? No, I don’t think so. I haven’t given up; I’m still taking care of him, but something in me feels wrong.

*

Grandpa w:beer alone 2

Cheers, grandpa.

*

 What do I do now? How do I hold on to my reasonings for doing this in the first place when I feel like the person I volunteered to do it for is gone and I’m mothering a shell? I remind myself that he took care of five generations, including me, and that he deserves someone to return the favor in his time of need, but there are moments, brief moments when that isn’t enough to provide any solace. I keep going through the motions. I feed him, medicate him, clean him, and watch him, but it’s so hard to witness that I either cry myself through it or I stop caring. I need a third option. This can’t be okay, can it?

College Kid to Caregiver (and back again?)

Have you ever watched a Rom-Com or “chick flick” in which some actress who you’ve seen play the same role 100 times goes through some comedic lows and just past the three quarter mark, she gets the chance to grab life by the bal-excuse me-hand, and run with it? After watching it, did you make fun of the bad jokes and familiar plot line, but secretly wish you could do the same thing? Yeah, me too.

IMG00233Five years ago, I moved in with my strong and loveable great-grandfather. For his age, which at the time was eighty-nine, he was rather healthy and getting around the house pretty well, but he was also stubborn and needed someone around to keep him from pushing himself too far. His daily routine included working on his truck and tinkering with various appliances so imagine my suprise when three years later, he was diagnosed with Alzheimer’s type dementia. It progressed rapidly and within a month, it became apparent that he would need 24 hour assistance.

Five years before his diagnosis, when he was making his living will, we made a promise to him that we would never place him in a nursing home so after his diagnosis, the family got together to work out a plan. The plan called for me to quit my job since my grandfather agreed to pay for the necessities I would need, so I did. The plan also involved having regularly scheduled assistance from three other relatives, but that part didn’t work out. Within three months, I was mostly on my own with him. I have one relative who isn’t mentally capable of helping, one who isn’t physically capable, and another who, like the rest of the family, just can’t be bothered.

(You know how people tell you that college will be the best years of your life? I sincerely hope they are wrong.)

I did not know it at the time, but moving into my grandfather’s was first of many choices that essentially equaled me giving up my early twenties. Quitting my job was was the so-called final nail in the coffin. For the majority of the last two years, I have not been able to leave the house with the exception of going to class and in order to do that, other things need to be

done. Meals need to be made, medications need set out, etc. I have friends who try to equate the situation with that of a working mom, but they are not the same. Being a caregiver for a dementia/Alzheimer’s patient means having to take care of someone who is convinced they are your boss. I used to think the kids I babysat for didn’t listen, but I did not have a clue, and let’s face it, there is a difference between changing a baby’s diaper and changing an adult diaper. Instead of going out with my friends, having lunch and dinner dates, going to the movies, shopping, taking a drive or even just going for a walk down the street, all of which mothers can usually do, I’m at home watching the man I grew up calling a my hero forget who I am.

What does this have to do with predictable chick-flicks? Not much on the surface. I am usually trying to squeeze in a few minutes of homework time in between calming down my grandfather so I don’t have much time for movies, but when he’s finally asleep and the house is still, all I can think about his how I wish my life was a rom-com. I could leave this place in the dust, jump in the car and start my adventure, make my own choices. That’s really what I want, to make choices solely for myself. I forget what that’s like. In fact, I can’t remember the last time someone asked me to do something that didn’t require a grandpa-related response, that is, until recently. Last week, I discovered that a band I like added a new stop on their tour. It was only three hours away and tickets were only $20.00. When a friend suggested we actually go, I just said yes. I didn’t think about it at all, but after the conversation, reality set in. Who would watch grandpa? How would we get there? How would I make it to class on time? Where would I get the money? Fortunately, it was too late. The tickets were purchased. The concert was three weeks away so I had time to try and figure it all out, but it was still the most spontaneous I’d been in years and it felt incredible.

It has been a week since I planned this mini trip, but I can’t stop thinking about it. I can’t stop thinking about not coming home, about driving even farther away in search of my true story because this can’t be all it is. I’ve always been desperate for the day I could have my own place, but it’s no longer the innocent thought that it was when I was a kid and thought being an adult would be the greatest thing in the world, the way we all felt. Instead, it’s now a feeling riddled with guilt. I wish everyday that I didn’t have to take care of him, but he never complained about taking care of four generations of children, some who weren’t even related. How do I reconcile the desire to be young and free from such responsibilities with the desire to be the devoted granddaughter? How do I deal with the fact that I want nothing more than a little help, but don’t want to leave him with anyone else? How do I deal with the possibility of him waking up five minutes from now and not knowing who I am? Most importantly, how do I know when enough is enough?