Does it ever get better?

“Does it ever get better?”

This question has been roaming around my brain and heart for the past 72 hours. It was asked in a Christmas card, addressed to my parents. While I can't speak from the point of view of a parent losing their child, I can speak to losing a brother. I wish these dear friends of my parents weren't in this situation, didn't belong to what I've come to call “The Club”. I wish no one I knew was in this club of heartache.

Does it ever get better? Yes, each year means you're still here to share the memories of Christmas’ past, childhood mishaps and all the good that was your loved one. You are here to share their story, their part in your history.

Does it ever get better?  No, the tears burn just as much today as the day you first felt your heart rip in two. The tracks seem to wear in to the surface of your cheeks. The saltiness is a fresh reminder that instead of laughter over a cup of coffee you're missing him/her.

Does it ever get better? Each birthday is remembered as if you can touch them. You sing to them, even if only under your breath, to remind yourself of the beauty of the life gone. You smile at the sun warming your face and feel the touch of their hand.

Does it ever get better? A song comes on and your normal day turns to tears and overwhelming sadness. You could be sitting in traffic or staring into space and that song, the song you shared, stops your heart for a beat and reminds you that they aren't here. As the years pass that song doesn't bring the gut wrenching grief, it turns to a calming balm on the bad days- a balm that you know is truly Heaven sent to remind you that they are still with you.

Does it ever get better? Looking at pictures of your loved one will change as the grief proceeds. One day you will be able to look at him sticking his tongue out on a family vacation or her rolling her eyes at you and instead of being taken to the worst day of your life, you'll hear him beg for a hot dog and fries because he’s “starving!” or her telling you that you're the worst parent because “all my friends are going!” You'll find a box of baby pictures and you'll be taken back to the day you brought that bundle of joy in to the world- including standing up your best friend for her New Year’s party because you went in to labor and you'll remember she didn’t believe you until she saw your preemie baby boy in the hospital. You'll find elementary pictures and remember just what a dork your brother really was. You will pull out her high school pictures and wonder what she was thinking to put those colors together, let alone got her hair that darn high. You'll be able to look at pictures from the days, weeks or months before they left this earth and your heart won’t feel as heavy as it did that very first year you were grieving.

Does it ever get better? Finding a shirt of his stuck in a box and that scent wafting up to your nose will have you bawling in that first year. Find that same shirt, smell his cologne in the fourth year and you just miss them so. You will cry both times, but it will be different.

Does it ever get better?  It becomes different. The rawness becomes less intense as years pass. The vast canyon you feel inside your heart and soul, it shrinks a bit year by year. The emptiness in your heart gets filled with memories of old instead of new and you adapt to it. Your memories of him/her become more vivid- you feel the wind in your hair on that beach vacation, you smell the grass he was cutting or you taste that awful cake she baked for you. You long to hear his voice one more time and in the still of the night or the overpowering loudness of your grief you hear him say “I’m okay. You'll be okay. I’m still with you.” And you take those words and hold on to them so tight that you worry you've changed them but then once again you hear “I’m okay. You'll be okay. I’m still with you.”

Does it ever get better? I find that after 7 years of missing Tony, things are never going to be what they were when he was alive. It’s not a matter of bad or good- just different. My birthday will never start with his call at 12:01 am- no one else can sing to me the way he did. Christmas shopping will never be as hilarious as it was with him- he got into the shopping cart and sang LOUDLY to everyone and never cared if people thought he wasn't right in the head. The 4th of July will never again involve the words “Don’t tell mom…” and that’s probably a good thing. The anniversary of his death is never going to be easy because I remember our last conversation, the look on his face as he was lead from earth to Heaven, the feel of his beard under my fingers as I hugged him one last time- all those memories pour in to that one day and I can get swept away. But he has also made things different in a good way- he got me to move out of my comfort zone in WI, he helped the doctor find what was going on with my heart and most importantly he helped me grow so that when the love of my life came back in to my world I knew not to let him go. I look at the world around me with eyes that see more than most; a soul that experienced grief on a deeper level than many will ever know; a heart that longs for what was and a mind that realizes it can never be.

Does it ever get better? After 7 years of grief I can honestly tell you that it doesn't get “better”. HOWEVER, it becomes normal to live with that hole in your heart. You learn to accept that your world is different. You adapt and you keep going with life, but it never, EVER, gets better. 

Failing and other worries....

Yesterday was a rough day for me. There are many things going on here and I feel like I’m sinking and failing at all of them.

1.  Mom is talking to people I can’t see and doesn’t want to live. 

2.   Mom needs me to be in the room with her more and more.

3.   I worry about Dad.

4.   My craft room is a mess, our bedroom looks like a hurricane tore through it and my office needs to be finished. 

5.   W is a neater, more organized person, than I am and I worry he’s going to get pissed at me and walk away one of these days. 

6.   Our garage is full of boxes that need to be gone through. 

7.   Our storage area in the basement needs shelves built and boxes gone through. 

8.   Our 14 yr. old sasses me and doesn't seem to care about anything, even his own belongings. 

9.    I got used by a “friend” and I am still hurt over it. 

10.   My body is painful and I’m tired.

More often I am spending the entire day with mom in their room. She is now on oxygen at night but is asking for it during the day. So instead of being able to wheel her out to the living room or the kitchen, we are in their bedroom listening to the same audiobooks over and over. I work on my laptop in the recliner but that leaves a long list of things undone. Yesterday I rearranged our pantry which was a necessary evil. It took me a few hours longer than it should have because I had to check on mom a lot so I took 15 minute breaks every hour. Whether or not I’m in the room, mom talks to people I can’t see. She talks to people that are dead and if I answer her or respond to her in any way she gets very upset with me for interrupting. She tells me she hates me because I make her do things. She tells me she wants dad to send me away. She tells me I’m mean to her. I should be used to it by now, but I'm not and it’s hard to hear over and over. Last night she was asking to die. She doesn't want to be a burden.  She wants to know when she will die. I can't get her to understand that Dad and I don't have that info. I told her that no one comes in this world with their expiration date stamped on their ass. I know there are times when she does know what’s happening to her. I can understand her fear and don’t blame her for getting upset. I wish we were already past this stage.

I worry about Dad and how he is dealing with what’s going on with Mom. We don’t get to talk as much as we used to as one of us is always with mom. And talking about her in front of her is not a good idea- she can get pretty damn vicious. I don’t know how he’s doing with the changes in mom. I know I cry and have W to hold me. But what about Dad? I pray he’s talking to one of his friends because carrying this big of a weight alone sucks.

I am used to being in control of my own world. I am used to doing everything on my own. W is doing his best to pick up the slack but he does say snide remarks about doing them or while doing them. I feel like I’m failing him because I see the mess and haven’t been able to catch up on it. When I have time I want to spend it with him or with the boy so that we are doing family things. I worry that he’s going to get fed up and walk away because this is more work than he thought it would be and too much is falling to him. I am used to having a long list of things to accomplish and taking my time. If it gets done today great, if not, tomorrow it’ll still be there. W doesn’t operate that way. He sees it and wants to take care of it right away. The problem is, he wants to know where to put stuff which means I either have to be down there with him when he’s working on it or it’s just going to have to wait- I can’t keep walking away from Mom to tell him where to put things. If he has things that he doesn’t know what to do with, it goes in a storage bin. I will need to get through that bin at some point. And when he does do things, I look around and don’t see my touch on things anymore. Our home is being put together but I feel like it’s not mine. I know it’s illogical because most of the stuff around is stuff I owned before he moved here or its things we’ve picked out together. It’s a control thing for me. As dad got home from work last night, I walked out the front door in tears. I went for a walk (barefoot) around the block by myself while W cooked. After dinner W and I sat on the front porch swing and talked about what I’m feeling. He said he’ll watch the snide comments and that he’s only trying to help me out. I understand that, but what I don’t think he understands is that I feel like a failure for not being able to take care of it myself. It is hard to know that you can’t do it all and have to have someone else take over the tasks that you enjoy. (I have no issue with him taking over the laundry though because I hate that task.J)

I’ve been talking about having a rummage sale for over a year. Still hasn’t happened as I haven’t been able to get through all the boxes. It’s a daunting task to know our two car garage is full of boxes and our basement storage area is too. And before anyone says it, yes one box at a time. I am failing at keeping at it and up with all the crap we have. I’ve set deadlines and haven’t even remotely hit them. Check off one more failure.

Our boy has been with us since June 22^nd. No he’s not my biological son, but he is W’s son and I willingly took him on as my own the day I fell in love with W. One day we seem to take a step in the right direction and the next he’s back to sassing me. When I call him on sassing, his response is “it was a joke.” And no matter how many times I tell him it didn’t sound like a joke he makes me out to be the “mean” one as I can’t take his jokes. Everything I tell him, or W tells him, is met with an argument. He has to have a comeback every single time. We can’t get him to understand that we know he doesn’t want to empty the dishwasher or help clean up after dinner, we don’t either, but it’s his job. He doesn’t have many chores with us (keep his room picked up, take his dirty laundry downstairs every Sunday, change his sheets on Sunday, pick up after himself, eating is done only at the kitchen table, and help clean up the kitchen after dinner every night) and yet he acts like we’re expecting him to be Cinderella. He has his chore list posted in his room and yet he can’t seem to get it done every day. Asking him to pick up his belongings (phone, Xbox games, toys, etc.) is met with “I know!” and yet doesn’t get done. His games will be all scratched up and we won't replace them. He's bought a few of them and still doesn't value them. We hear a lot of “ugh”, “I KNOW!” and “uh-huh” from him. Even my dad, who is the most patient man I know, has told him to cut the crap and stop arguing with me every time I tell him to do something. When we ask the boy what he wants to do in the future he gets all pissy at us and tells us we’re trying to get him to grow up too fast. We can’t get him to see that having an idea of what you want to do isn’t a bad thing. He can’t see that we’re trying to have discussions with him, to help him develop his interpersonal skills. I’ve taken to not responding to him when he snips at me. I don’t know how else to get him to see that I’m not going to put up with his disrespect. We took his electronics away the other day, I mean everything, all day. It was a pretty great day- not once did he snip at me or his dad. He found things to do outside- whittling, riding his bike, taking the dog for a walk, and skateboarding. When he came in, he actually picked up a book and read for an hour. School starts here on the 22^nd and he’s already got an attitude about it and it’s not a positive one. I’m prepping myself for the wars over homework and such. I am working on a routine for him- one that will be on a board that he can look at every day. I don’t know how else to make it was easy as possible for us all. We had a family game night two nights ago and we had a great time. But when he sees me just “sitting here, playing on my laptop” in mom’s room he doesn’t get that I’d rather be doing something else, but this is my job and I have to be here for her. I’d love to be able to spend the day outside with him. I can’t. No matter what I say to him about anything, if I contradict him or tell him to stop doing something, I am “mean” and “don’t accept him for who he is.”, all because I will not let him lie to me nor will I allow him to devalue himself or be disrespectful to his father, my father or me. I haven’t been able to reach him yet. I am failing him.

I met a woman last fall through FB. We were in a group together. While I haven’t met most of the women in this group in person, I consider them my friends and sisters. We support each other through hell and high water or cheer for the each other when the good stuff happens. This particular woman messaged me in May asking for help due to a financial hardship. She played on my emotions and used the “my kids don’t have food” line. I was able to help her out thanks to a refund I’d received and she promised she’d pay me back. I had no reason to think otherwise. She happened to run an online store and I purchased a Father’s Day gift for W from her. In the beginning of June she messaged me and told me it had been shipped along with repayment for the loan. Father’s Day came and went and I messaged her because the box never showed up. I was concerned that if the check she’d said was in the box was taken that she could be hurt financially. I also had plans for that gift for W. At the beginning of July it came to my attention that she’d done similar things with other people in the group and she wasn't responding to any of us. Not only did it hurt but it pissed me off. I thought she was my friend and that I was helping her out. I never thought she was scamming me. I called her out for it in the group and was instantly blocked by her. Her store was suddenly gone from the website. I had no way to get in contact with her, still don’t. If she couldn't pay me back, fine, just tell me- be honest. That’s what real friends do. But to not send me something I purchased as a gift for someone else and then not respond to me when I asked where it was is beyond disrespectful. I was able to obtain a refund for the gift from the site she had her store on even though she wouldn't respond to them either. I know I won’t get the loan back. I could have put that money towards Christmas. But I will do without it and I will get over it. However, to be honest, I won’t be helping anyone else out for a long time. I don’t hold anyone else accountable for her actions- they were hers and hers alone. I hate that she hurt mutual friends. I would much rather it just is me that got burned, not others. I will always want to prevent others from getting burned. 

As I said earlier, yesterday I redid our pantry. I took everything out, wiped down the shelves, vacuumed and mopped the floors. Then I put everything back in. I was up and down from the floor to the ladder to the table to the counters. I bent, I twisted, I crouched and I lifted. I scrubbed, wiped, and organized. I spent the day before running errands with the boy- the bank, the beautician, the grocery store and Wal-Mart. Today my legs are on fire, my head is pounding and my body is telling me I overdid it. Two days of that much activity is too much for me. I know this, but I don’t like not being able to do what I want. I want to be able to get things done and have boundless energy. I want to not have to swallow pain relievers just to get through the day. I know that for me I'll never get back to what I want. I have a new normal. I have to work within my own body’s constraints. I know there are people out there who will never understand the pain I am in daily because they see the smile on my face. I smile through the pain because trying to explain how I feel is harder than simply smiling. I cry at night when it gets too far out of control. I pray for relief and the strength to get through another day. As soon as dinner is done tonight, I will go lie in bed and watch my shows. I will get up tomorrow and go tackle some of the boxes in the garage. Sunday I will be in pain. This is my world.

Right now mom is asking when dad will be home. This is the 8th time (she's asked two more times while I've been proofreading) since lunch that she’s asked. And tonight when we sit down for dinner she will ask him repeatedly if he has to go back to work after lunch. Repeat, rinse and repeat. I’m counting down the minutes till I can go downstairs and try to forget how badly I feel I’m failing at being a mom, a housekeeper, a caregiver, a daughter and a partner to W.  

Will you be my mom?

I find myself near tears today. I don't feel good; I am having high pain and feel emotionally unstable. One minute I want to weep, the next scream and then I get sullen. It's just a bad day. I want to be able to go curl up in bed and just stay away from everyone. I can't. I am sitting here in the recliner in mom's room. Thunder is cracking and rain is falling. Mom is snoozing off and on.

It's been a mellow day for mom. We both fell asleep this morning after dad left for work and woke up in time for lunch. I made mom her normal lunch- tuna and mini Oreo's. She drank her Dr. Pepper and did okay. I ate at the same time and we watched Frasier together. I only had to help mom with one spoon full of tuna today, which is better than yesterday. When I brought her back to her room to lay back down, she was chattering away about one of my cousins and how cute his girls are. I made the appropriate noises and was careful not to correct her about how old he and his girls are. I realize she is back in the early 80's and just use my own memories of the time to fill in the blanks. As I helped her move from her wheelchair to the bed she smiled at me and said "I love you." I told her the same. As I covered her up she asked me, "Will you be my mom?"

How do I answer that? I didn't see it coming. It took me a few seconds to come up with the answer. "I'm your daughter, I can't be your mom. You're my mom."

"Oh…." She looked confused and then quickly said, "Yeah I know that."

I recognized that statement and the look on her face. I know that this is her way of covering up for what she doesn't know. She can say "Yeah I know that" and make herself feel better. I don't fall for it but I also don't call her out on it. I know it would cause more harm than good.

Should I have said I'd be her mom? Did I do the right thing? I don't know. I never truly know if my answers are the right ones. All I know is that I have to do what I think is best. I have to answer her without crying and without upsetting her. I have to choose my words carefully and thoughtfully but quickly because too long of a pause and she gets upset and feels as if she's being ignored. I can't let my frustration come through. I can't be too sassy or sarcastic (though I get it from her!) but must keep humor in my responses.

She is lying on her back and I'm to her left. She can see me if she turns her head far enough. She knows I am here. But she has conversations with people I don't see. She talks to my grandfather, my brother, her one sister and her favorite aunt. If I ask her what she's talking about, she tells me it's none of my business and turns her head to the right as if she can't see me, I can't see her. I act as though I'm not paying her any attention and she resumes her conversation. She will doze off occasionally and wake with a start to resume her conversation. I hear some of the words but not all of them. I will probably never be privy to those conversations. But I will be expected to know what she's been talking about as if I was. It's a fine line. It's a line that I tiptoe along a lot. I've gotten good at nodding and laughing and saying "hmmm" at the appropriate spots. That comforts her and that's what matters.

We are helping mom more and more. I wash her hair and give her a shower, she just sits or stands there. She can't figure out how to use the shampoo anymore. When she eats, her hand shakes. Half the food falls off the spoon, some hits the bowl while the rest hits the placemat. She is eating simpler and simpler every day- tuna, chicken nuggets, mini Oreos, fruit cocktail, candy, apple slices. I got her adult sippy cups so that she can drink without help and not get soaked in the process. She has special silverware with big handles, but she doesn't like them very much. Her sweatshirt has food stains and her fingernails always have Oreo crumbs under them. I do my best to keep up with it, but she hates having her nails cleaned. I trim them as often as I can but stopped painting them because I noticed she was chewing on her nails and I don't want her eating the nail polish. She hasn't had her wedding rings on this week because she forgot she's not wearing them. I think that's good because I noticed she was playing with them and putting them on the wrong fingers. She also was holding them in her lips- I'm worried she'll choke on them. I have to remember to tell dad not to put them on her again. I keep baby wipes around to clean her face. I have disposable washcloths to help keep her clean everywhere else. I don't know how much longer we'll be able to get her in the shower. It's getting more and more difficult as she can't follow simple directions any more. All these changes are happening. I can't stop or slow them down. And I'm back on the verge of tears….

I feel like I talk to you all about the same thing every time I write. And maybe I am. I don't know anymore. I think about the changes so much that when I finally sit down to write a blog, I wonder if I've already hashed this all out. Please forgive me if I ramble, forgive me if I'm repeating myself. I am grateful to you all for listening, for the support and the love. I truly appreciate you more than I can express.

Music is Memories

Music has always played a role in my life. Growing up we always had the radio or stereo on. I would fall asleep to the radio every night as a young girl. I would sit in my grandfather's lap as a toddler and be bounced along with the beat of the polkas he had on. A lot of my memories are tied to one song or another. I was going through my cd's and noticed quite a few of them weren't in my iTunes catalog. Today I started the daunting task of putting them all on my laptop. Once as they're all on here, all of them will be transferred to my iPod. I have one of the classics that can hold 160GB. I'm interested to see what the final count will be.

As I've been going through them, each one brings back some memory and I'd like to share some of them with you.

Soundtrack to WILD ORCHID- It's an erotic tale and the movie has always been a favorite of mine. I remember watching the movie for the first time in college with a group of 6 or 7 girls in my suitemate's room. We were gathered round her small TV and I was mesmerized by the film. I remember one or two of the girls were not comfortable with the movie and got up to leave. Not me. I have never been one to shy away from the topic of sex and intimacy, so for me the movie opened up more dialogue. When I found the soundtrack about five years ago I bought it for $3. I can't say as I've ever listened to it all the way through. Maybe it's time to.

System of a Down "Mezmerize"- most people can't picture me listening or even liking this band or cd. But I do. It's my favorite cleaning album. I like to crank it up and sing along to every shocking lyric. "Cigaro" has to be my fave! I was turned on to this group by an ex-boyfriend who happened to despise country. I could only listen to my country when he wasn't home or in the car with me. He came home one day and found me packing my stuff up to this album. Maybe that's why I like to clean to it….

20 Fingers featuring Gillette "Short Short Man"- I can't even type that without laughing. Back in college this one was very popular and it always had me and a friend in stitches. We'd be out on the dance floor and it would come on and we'd be in stiches in seconds flat because we both knew a "short, short man". It makes me think fondly of her and wonder how she is and what she's up to. I hope she's doing well!

Veggie Tunes- I have a few albums of their songs. I love them. They're catchy and silly and remind me of three children I was a nanny too. Cowgirl is their mom. I can see them singing along and bopping to the beat. Cowgirl's favorite is "Where is my Hairbrush?" while I my fave is "Love my Lips". I will always picture "my kiddos" when I hear any Veggie tune.

Tracy Lawrence "Alibis"- my first album by Tracy. I've had to replace it twice. I was in a very abusive relationship when this album came out and the title song helped me through some rough times.

Songs of the Polka King, Frank Yankovich and friends- "Beer Barrel Polka", "Too fat for me" and "In Heaven there is no Beer" are bring back sitting in Grandpa's lap and giggling. He would bounce me up and down and sing (sometimes he changed the words!) to me. Then the "Blue Skirt Waltz" would come on and he'd rock me to sleep. I have that song in my "sweet dreams" playlist. I miss you Grandpa!

The Essential Johnny Horton "Honky Tonk Man"- I know all the words to his songs thanks to my dad. "The Battle of New Orleans", "Johnny Reb" and "Sink the Bismark" were songs that interested me in history. Plus the "Battle of New Orleans" has the best verse ever (IMO): "We fired our cannons 'til the barrel melted down, so we grabbed an alligator and we fought another round. We filled his head with cannon balls, and powered his behind. And when we touched the powder off, the gator lost his mind!" What a visual! LOL I will always think of my daddy when I listen to anything by Johnny Horton.

Montgomery Gentry "My Town"- I have two copies of this cd. One was Tony's and is one of my greatest treasures. Tony was one of their biggest fans and I can still hear his voice singing along with "My Town". I was lucky enough to score Tony an autograph from Troy Gentry back in November of 2003. I ran in to Troy at the local Target and he signed a photo envelope for Tony. I smile fondly every time I listen to anything by MG and have seen them in concert numerous times. The last time was just before I moved out here to Denver. I took my cousin Scar (from the blog: I survived cancer and all I got was this stupid Scar) to see them at the fair and we had a blast. It was a great night full of lasting memories!

The Jungle Book soundtrack- I can't help but grin when I hear this album or watch the movie. Forever this movie will be linked to the love of my life, W. We were 19 when we dated the first time and one day we sat in his apartment and watched it. I sat on the floor in front of the TV and was mesmerized. I did this little shimmy bounce dance right in front of him without once worrying he'd make fun of me. I looked at him once during the movie and he was watching me. He gives me that same loving look now when I get lost in a movie and dance or sing along. This will always be one of our movies.

Garth Brooks "Fresh Horses"- So this one was in the stack but I already had it on my laptop, but it has the most beautiful memories attached to it. W and I used to listen to this cd a lot when we were dating back in the day. "She's Every Woman" was the song he said was all about me. We listened to the entire album while driving home last weekend and I cried when he told me he hadn't listened to it much since we'd broken up. All his other Garth CD's have tons of scratches from all the play time they got. W is a HUGE Garth fan so for him to leave this album out told me just how much he loved me back then and that his love for me is never ending. I love W deeply and unconditionally. I will forever see the boy of 19 singing to me and falling in love with him. Tonight I will ask him to sing it to me again…

Mom enjoys music as much as I do. She used to blast the stereo at our house in Texas so loud she wouldn't hear me walk in. I'd hear the bass as soon as I got out of my truck. Now I use it to fill the day and to calm her. I play a lot of Garth and Reba and classic country for her. She smiles and she sings along. Sometimes a song will bring back a memory of her youth and she'll tell me one of the stories I grew up listening to. As time goes by I know that music will reach her when our words don't.

Music is memories in my world….

 

 

All aboard the Emotional Roller Coaster

It’s been a rough couple of days here in Composer Land. I’ve been on an emotional roller coaster and because I am who I am… I’m venting it all here.

Joyful- On Saturday W and I headed home to CO with our son (biologically W’s son) in tow. D is a good kid. He’s a teenager so I’m entering the mom game a little behind but I know he’s the one meant for me. He’s goofy like his dad and I. He did order a green apple slushy with Nerds in it, but other than that he seems pretty normal. J He said it tasted good, but I gagged just smelling it. We got home on Sunday and D is fitting in well. We’ll get in to our routines and we’ll all find our way. I have the family I've always wanted. I am grinning now as I type about him and the blessing he’s brought to my life.

Fortunate- To have W by my side while going on this new adventure of being a mom and to know we're on the same page, blessed beyond measure. I have every confidence in us as parents and as a team. I fall more in love with W every single day. I catch myself just staring at him. I am finally with the man I belong with. I am in love, I am happy and there’s peace in that.

Incensed- Mom is in her storytelling stage. She fabricates things. For example, she told me about a friend of hers that she has always disliked. When in reality this woman was one of mom’s closest friends, but now she’s angry. She says untrue things about people that I love and respect and it takes all I have to not yell at her or correct her. I know it’s not worth it. But it still makes me angry to hear those words come out of her mouth.

Pissed off- I've been told over and over again “it’s not her, it’s the disease.” No shit Sherlock!!! I know this. All you're doing is pissing me off. Every time I hear those words I want to scream “I’m not a fuckin’ moron!” This isn't my first go around with dementia. Just because it’s the disease making her say things doesn't mean it takes the sting out of the words.

Crushed- Yesterday in the car on the way home from dropping D and friends off at the pool, mom was telling me about a conversation she had with a friend just a day ago. (She hasn't talked to any of her friends, especially this one, in months, maybe even years.) She and L were talking about how nice it was to be married without children. I asked her “You don’t have any children?” “Nope. My only child is in heaven.” I drove the rest of the way home with a boulder in my throat.  It cut so deep to be told I don’t exist in her mind as her child. I wondered what she considered me at that moment, but I knew I couldn't have handled her answer so I didn’t ask.

Loved- As I helped her to bed this morning after breakfast she told me “Thank you for taking care of me. I love you.” She held my hand and looked me in the eye. It was a good moment. D tells me he loves me. W holds me close and kisses me to make sure I know I'm loved. Dad tells me I'm appreciated for all I do. My friends reach out on the rough days to make sure I know they're there and willing to listen.

Hated- Yesterday afternoon because I forgot to turn on her next audiobook I was hated. She actually told me she hated me for always forgetting her. I apologized but I knew it was falling on deaf ears. She goes from loving me to hating me in the wink of an eye. I'm used to that, more than I should be.

Heartbroken- I have been told in the last two days that she “just got off the phone” with Tony. She gives me the play by play of the entire conversation they've had. Ironically the things she says he said are things that came out of his mouth at one time or another. I don’t know if she’s seeing him or hearing him in her memories or if she’s fabricating the story just so she has something to tell me. Either way it’s a knife to my heart because there is nothing I’d like more than to be able to talk with Tony. I miss him. I miss him more after mom “talks” to him. It’s like losing him all over again.

Jealous- I have friends that have wonderful relationships with their mothers. I don’t. I never did. I take care of my mom because it’s who I am- I am a caregiver, a peacekeeper. She beat me, sent me on numerous guilt trips and waged war on my self-esteem often when I was younger. But she’s my mom.  She is the woman that gave me life. She took care of all of us kids whenever we needed her. She put her life on hold for us. I do what I do because she is my mom. I can't help but feel jealous of my friends that have great relationships with their moms. I can't help but envy that they can have normal conversations with their moms. I’m not immune from an attack of the green-eyed monster.

Grateful- I am beyond lucky for having the Dad that I do. He’s one of the most caring men I know. He has bent over backwards for me and my brothers to make sure we're taken care of and that our asses are covered. He's patient, kind, funny and allows me to be who I am. I am grateful to him for every time he’s extended a helping hand to me. I’m grateful that he let W and D move in. I’m grateful he’s accepted them both in to his life and heart. I’ve got the world’s best Daddy. And I'm grateful I'll always be his Princess.

Fearful and Anxious- Mom’s having more rough days. She’s harder and harder to get in and out of the house and car. She fights both Dad and I on doing what we need her to do, whether it’s simply walking to her wheelchair or lying down in bed or taking a bite of food. The changes are coming faster and faster. I fear the day she doesn't know who I am. I fear that I will lose it in front of her. I have panic attacks just thinking about the day she forgets who dad is. I don't know how I'll handle that hurt.

Sad and teary- Some days, I look at mom and tears well up in my eyes. There have been many changes in her over the past few months. I knew they would come. I am saddened by the progression of the disease. I have shed a lot of tears lately knowing that these changes are permanent and each day she loses more and more of her memory. I've cried for no reason at all too.

I do not enjoy being a passenger on this emotional roller coaster. However, I know I must process and deal with each and every emotion. I can't bottle them up, I can't cover them up with medication- I need to feel all of them. I need to laugh or cry or scream (even if it's just into a pillow). I must face the fact that this journey is getting harder and harder. I have to remember to take time for myself to recharge and refill my soul. I will not fall into the black hole again. I can’t act like all is peachy because it’s not. But I can write about it. I can talk about it. I can get through this with the love of my family and friends.  

Infinite Loop of Grief

Dementia sucks.

I have no better, no simpler, words than those today. I am frustrated on mom’s behalf, on dad’s and on my own. To be asked the same question over and over and over is difficult. To have the exact same conversation ten times a day is exhausting. To hear the stories you know by heart suddenly changed and you’re no longer in them- heart breaking.

I am not the poster child for patience. I know this, accept this and am trying to get better. I have days when just hearing her voice grates on my nerves. I know this and take deep breaths and realize it’s not her fault. It’s the disease, it’s her brain, and it’s the shitty end of a situation.

Mom is stuck. I’d like to say it’s about ten years back but it’s not an exact time. She is distraught and overcome with sadness over the death of her oldest sister. She can’t remember her sister dying. She keeps asking why no one told her and why they didn’t ask her to be at the service. Mom was there, as were dad, Tony and I. I stood next to her while she accepted condolences. I asked for the rings my aunt wore. I remember the service vaguely as one does after ten years. Mom doesn’t remember any of it. She has cried more tears over her sister in the past week then she did when my aunt passed. My aunt also had dementia and blessedly went quickly in her sleep after being in a nursing home just a few short weeks. Mom knew back then that this was a blessing, but right now she is just distraught that she couldn’t take care of her sister. She is stuck in an infinite loop of grief with no end in sight.

Dad and I are trying our best to be patient and answer her questions. I stick to saying the same thing over and over. I have found this works well. Yes I sound like a recording but it seems to sooth her the fastest.  My tone can be considered curt, but it works. I have taken on the role of mother to her. She tells me she doesn’t like me in one breath and in the next is thanking me for taking care of her. I reassure her that it’s my job and I’m here for the long haul. I just wish I knew how to get her out of this grief loop. And the good Lord better hand me extra patience and fortitude for the day she forgets Tony is gone. That’s going to take the wind right out of me.

Since mom is stuck back in a time when the world changed for her, I too can’t help but recollect where I was back then. Ten years ago I was walking in a cancer walk with Tony to celebrate his beating the odds and coming back from the brink of death. I was walking next to a true miracle. And he was lighting up a cigarette as proud as a peacock. I tried to shove him into oncoming traffic but even after being so beat down he was still stronger than me. I told him mom would understand the circumstances and I remember how he laughed and agreed she would but he wouldn’t put the damn smoke out. However one of the nurses that treated him was walking right behind us and boy she let him have it. I can’t recall her exact words but it was the smack to the head that I will never forget. I saw her wind up and he had no idea what was coming. The smack and the look on his face had me just about peeing in my pants. I had a hard time walking for a bit I was shaking from laughter. She got him to put it out thankfully, but in the car on the way home he light up again. He was a stubborn one!

Ten years ago I was dating a man that I knew wouldn’t be the “one” but he was Mr. Right Now. I met a woman that I am blessed to call one of my best friends (AW) thanks to him. I kept her and let him go. Ten years ago I was younger and so sure of the road I was on. I had it all mapped out in my head and I was sure life would be what dreams are made of. Back then I had no idea of the lows I was going to encounter just a few short years later. While mom is stuck in the grief of losing her sister back then, I am glad to say I survived the last ten years and came out stronger and wiser. I could have let the trials and errors make me bitter and maybe for a year or two I did. However I saw the light and I can honestly say I am grateful and blessed to be where I am today. It truly is all about perspective.

Now I need to go give mom a bag of mini Oreo’s (her newest addiction) and answer her questions about her sister’s passing. I will say the same thing over and over and one of these days she’ll move on to some other topic. I pray it’s a funny one!

Count your blessings and hug the ones you love-

Composer  

Guilt, Worry and Impatience

There are a hundred things I should be doing today- vacuuming, laundry, sorting, give mom a shower, paint her nails, paying bills, filing, organizing my office, moving plants in the flower beds; the list goes on for miles. But instead I am sitting in her room in the comfy recliner listening to her book with her. I am working on my laptop and will accomplish a few things while I'm in here today. However, other than letting mom rest today I will let my to-do list wait. Mom is very worried, to the point of making herself cry and nauseous, over the idea that we may (or may not) get thunderstorms today. The news channel was talking about possible tornadoes and hail and that’s all mom heard. She didn't hear it will mostly go east of us. She has now focused on the “horrible storms” that are coming. I cannot convince her otherwise. Hence my portable office now is in her room.

I often wonder if I'm doing all I can for mom. There are days when all I can handle is having her in the kitchen for lunch and then it’s back to her bed. That sounds awful doesn't it? I leave her alone in her room more often than I should. I know this. I do have the baby monitor and I do check on her. But I wonder if it’s the best for her or is it my way of disengaging from her?

I ran errands yesterday morning and took mom with me. I hit the post office, Kohl’s and Staples. I left her in the van each time; I didn't even have her wheelchair with me. I chose to make it a fast trip and was done in an hour and a half including stopping for lunch. I haven't had a chance to go shopping by myself in a while. Until yesterday I didn't realize how I'd been missing it. While driving mom chatted with me about the newest people on her “I don't like them” list and talked about the 80’s as if they were yesterday. I nodded and said the appropriate things, but in my head I was running over the dates. See I have a very hard time not correcting her so I've resorted to making the corrections in my head. If she could see my expression while I'm driving she'd see my eyes roll, my lips purse and my face flush in anger about the things she says. Lucky for me, she can't because she has a hard enough time keeping up with the traffic and where exactly where we are. I keep these expressions to myself when anyone else is around- I don't want them to see my impatience and anger. I feel guilty for feeling these things and then my logical side says it’s normal and I feel guilty for feeling guilty. Vicious circle right?

Now those of you who follow me regularly know that I have W in my life. And he is wonderful. I am lucky to have him to keep me sane and laughing. I love the time I spend with him- anything from grocery shopping to rummaging- it’s our time even if we take mom along. We laugh and act like morons and it’s wonderful. I know I can tell him at any point that I need time alone. I know this and yet I haven't said it. Well I have but it’s more an “I’m gonna nap” thing. I haven’t said to him, “I'm going out and I'll be back when I don't feel like screaming like my hair is on fire.” I don't want to burden him with mom. I know he's not comfortable with her yet and she's not comfortable with him completely yet. Though she does call him her boyfriend and giggles. But I'm not where I feel like leaving them alone for more than an hour is a good thing.  I can leave her with Dad but that's different. And no it's not because I don't trust him. It's more a worry about mom having a panic attack and W not being able to calm her because she won't be calmed.

 

I also know that even if I had a slew of helpers (family, friends or nurses) I’d still have the worries I have now. I would worry that she’s being difficult or that she’s going to have a panic attack or that she'd be mean. I wouldn't relax knowing she was home with someone that isn't dad or me.  It’s a feeling I'm not accustomed to. I never worried when it was my dogs I was leaving somewhere, but then again it may have simply been because they're crate trained and can’t talk so they were easy to care for in my mind. I know I need a break before I go postal. I just don't know how to get the break I need.

For today I am chewing on guilt with a side of worry and impatience. Someone pass me the Tums….

Mother's Day Weekend 2014

Last year for Mother's day I wrote a letter to the child I never got to hold. He or She would have been 19 this year. This time of year is always bittersweet to me because of what I don't have and what I'm slowly losing.

As you know, if you follow my FB page or this blog, I take care of my mom because of her dementia. I am marking another Mother's Day with her, but it's not like it used to be. I have a card that W and I will give her and I will go pick up some tulips for next to her bed on Saturday or Sunday. But we won't take her out for brunch or dinner. We may try to take a short car ride.... it can't be too long or too far as that confuses her now. But most likely the day will be spent as if it was any other Sunday.

It saddens me, yes. Am I trying to put a positive spin on it... you bet. How's that working for me... not so great. I have spent the majority of my day on the couch wrapped in my woobie playing online games. W is in the recliner doing the same. He is a little more antsy than me so I don't know how much longer he'll keep at it. I am sad over these changes in mom. There's no way around it. I will cry about them at some point today and let the hurt out. Between writing about it and letting some tears fall, that's how I deal with it.

In regards to the child I don't have.... that one is sitting a lot heavier on me this year. I think it's because I look at W and wish I had been the mother of his children. I want, in a way I haven't since before my hysterectomy, to have his child. To bring to life a child that is as the perfect mix of us... to be our legacy. I can picture in my mind the blond curls of a daughter who would wrap W around her finger with every smile and tear shed. I can see a rough and ready son that plays hard, is stubborn and yet gentle like his father. I can see how W and I would warp their little sense of humors- fart jokes, love of Benny Hill, silly names, etc. I am working through all of this. I know there is no chance of giving W a child made up of our joint DNA. He's okay with it because he has two children from previous relationships. He's a great dad. And maybe that's why I am having such a time with it. Maybe it's simply regretting the stupidity of running from him when I was 19. Maybe it's simply wishing we had made that miracle together. I don't know for sure, all I know is my heart hurts over what might have been.

So this weekend whether you're a mom or celebrating your mom remember that there are numerous women out there wishing they had the title of Mom. Be grateful for what you have. Be in the moment and make the memories to last. Put down your phones, computers, etc and just enjoy what you have. One day you'll need those memories to make the holiday easier....



****  You can find last year's Mother's Day blog here

Grieving the little things

I look to my right and I see her soundly sleeping. Her face is lax, her breathing even. It is time for lunch but I know her sleep is important so I let her be. I am sitting in the recliner in their room working on my laptop. I have a feeling I will be spending more and more days like this. I see that my routine is changing again and she will need me to be nearer than I’ve been in the past months. Mom looks for me or dad more often when she is awake. She wants to be part of what is going on and if having me in the same room with her comforts her, then I’ll be in here. She feels safest in their bedroom and really it is a nice room to be in.  There is a large window that overlooks the backyard and it’s a rather nice view. The sun doesn't shine directly into the room but there is plenty of natural light. With the window open I can hear the birds and neighborhood sounds. And if the dog is outside I can easily keep an eye on her. I will make these necessary changes in my daily routine to ensure she is calm and comforted.

Last night I read the obituary of a high school classmate. She lost her fight with breast cancer on Monday and Tuesday would have been her 38^th birthday. My classmate and I weren’t close anymore but her death touches me. I cry for her, her husband, her children, her family and her friends. She was a good woman and cancer took her much too soon. I pray for comfort for all those grieving her.

Her death is causing me to see something I hadn't wanted to acknowledge yet. The person I would normally reach out to immediately at the news of a classmate’s death (any death for that matter) would be mom. She was an aid at my middle school and she knew many of my classmates and those above me in school as well as many below. She knew this woman that passed- at one time this classmate and I had been best friends. If mom didn't have dementia I would have called her and we'd have reminisced and cried together. We would have cursed cancer and she would have consoled me. But I can't do that anymore. I can't tell her that someone I knew died. I also won't tell her I recently found out that one of the teachers she worked with passed away a month ago. I don’t tell her these things because not only do they confuse her but they cause her to cry and wonder why she can't “just go to Heaven.” Those conversations get both her and I upset. I do not know how to best deal with her questions of why she’s still here when she'd rather not be a burden to me and dad. I try to change the subject but sometimes she just can't be derailed. So instead of telling her things that will upset her, I keep my tears hidden from her- I do not let her see that I'm upset. I plaster a smile on my face and cry later where she can’t see or hear me.

Instead of losing my mom suddenly and then coming to terms with all the little things I'll no longer get to do, I'm grieving now for the little things. A few months ago it was her cell phone being turned off that hit me in the heart; today it’s not being able to talk to her about someone dying. Tomorrow it will be something different dawning on me that I no longer can do with mom.

I am experiencing deaths slow march in a different way than with Tony. I don't know which is way is worse: watching him decline and knowing he fully understood what was happening to him or watching my mom decline and lose her knowledge of what is happening. Both of these ways drain the caregiver and cause emotions I'd rather never have first hand experience with.  

I usually try to end a blog with “I know I'll be okay” or “I will survive this”. But today I'm not going to try to put a positive spin on this. I’m going to admit my classmate’s death has made me melancholy and I will shed more tears for her and for the loss of one more part of my mom. I am allowed to feel this way and shouldn't keep it in. I am grieving.

Chores- to do or to watch a movie instead?

Have you ever found yourself looking at the pile of laundry and wondering how it got so big? That’s usually me. I admit I am not a neat freak nor am I a fan of cleaning. I've been this way forever- I take after my dad that way. I am trying to change how I view these tasks and how I do them.  We'll take them one by one….

         Laundry- GAH! I swear that once a shirt hits the laundry room it finds a pair of pants and they reproduce like the proverbially rabbits. I have been known to let the laundry get so bad that the piles end up taking over the hallway after they overpower the actual laundry room.  At the beginning of March Scar came and she caught up all my laundry. I still am in awe of her ability to do it all. I mean, damn it made me feel like a real slob and she comes in like an awesome fairy and gets me caught back up. Add my fabulous W to the story and he’s much better at keeping up with the laundry than me. But I’m making changes to make it easier for him and I. We sort clothes now by ours versus theirs. Theirs being mom and dads. That way there is no “is this mom’s or Composer’s?” for W.  I have also started folding my clothes differently. I never really thought about it until Scar and W showed me there are different ways to fold things. I guess I was so used to doing it mom’s way to keep her happy back when I was younger that I never changed. Now- I have more space in my drawers because things are folded better.  Today I've vowed that the few loads we are behind will be done… by ME! I've got one in the dryer and one in the washer. I will fold them as soon as the dryer is done and put it right away. It does make life easier- and nobody better narc to my MOM that I finally get it! To my utter disbelief the world doesn't stop the moment I put my bras and shirts away as soon as they are folded. Who knew!?!

       Dishes- Okay so for me there is rarely a reason to do dishes by hand. I do have two pans that can’t go in and to wash them individually takes seconds. Not an issue. Now the loading and unloading of the dishwasher… that’s different. It’s like a game of Tetris for me when I do load it. Yeah I can drag my feet with the best of ‘em on this one. I swear I could rival your teenager for hating this job. And I do whine about it sometimes too. This morning it is running and it will get emptied today too. W pointed out to me that he’s picking up my bad habit of letting the dishes sit instead of getting them done right away. I was taken aback when he said that and it hit me that this isn’t the best habit. I would much rather pick up his good habits then him pick up my bad ones. Time to step up and do it the way it’s meant to be! I know W will gently but firmly help me get this habit out of the bad and into the good.

      Organizing all my craft stuff- This one I can’t look to anyone but myself to do. I bought a beautiful dresser last weekend to replace the one I don’t really like. That leaves the old one to become a craft station. Have I even emptied my clothes out of the old one to put in the new one? Are the drawers even in the new one or are they still sitting in the craft space? Yeah… three guesses and the first two don’t count.  I have a label maker and I have all the stuff to make my craft area rock. And yet not done. Procrastination is my middle name. How W does not slap the crap out of me I do not know. He’s a saint ‘cause I’m sure this is driving him nuts. He’s the organized one- even his school work is organized by what needs to get done each day. I need to follow his lead. I need to step up before my laziness causes a fight. Or worse the clutter takes over and we get featured on the hoarding show!                

These are the big things for me. Getting my chores done should be a priority, I know this in my heart. I am trying to make them easier and quicker but it is so much more fun to park my ass in my kick ass orange retro chair and play Candy Crush or Need for Speed on the WII or catch up on my Netflix list of 300+ movies and shows. If you have any tips, I’ll gladly take ‘em. I am determined to make our home comfortable and welcoming instead of the messy and cluttered world it’s slowly becoming.  

Now to get offline and do what I need to. I am more than the items littering the floor and hallways of this house. I am more than the items littering the floor and hallways of this house. I will become organized. I will become organized.

Who left kisses next to my chair? Oh my coffee is cold better go warm it up with a fresh cup. Is the dog whining to go out? Oh look... squirrel!

Twin Flame

My life has changed for the better in the past 6 weeks. I reconnected with an old love, but he’s not just a boyfriend… he’s THE one. W is the man of my dreams, he’s the male version of me (this was pointed out by numerous people over the last few weeks). Let me tell you our story….

I was 19 in 1996 and working at the local superstore. I was a petite blonde and had a sarcastic mouth to cover up hurts deep inside me. I caught the eye of W and when he smarted off to me I knew I would date him. I never planned on it being what it’s turned out to be. I guess that’s the how it was meant to be though; I would get a taste of him and him, me. But we needed to grow as individuals before we could be together again. Okay, that was a bit of digression. Back to 19 and falling for this boy that was sarcastic and kind and romantic and so ready for what he felt for me. I on the other hand got scared out of my mind by the power of our connection. We dated for a few months and then I bolted. He even bought me a ring for Valentine’s Day. I broke up with him one night as he dropped me off at home. I told him we couldn't see each other anymore and got out of his car. That’s how I did it; left him wondering what he'd done wrong. And it truly wasn't him- it was me. The power of our feelings was too much for me, I didn't understand how it could be so easy with him. I was used to fighting and yelling and dramatics to express myself and what I felt in a relationship. I was used to being hit and treated like dog crap. W was the polar opposite of my exes. It was too easy and it scared the hell out of me.

We tried again for a very short time a year or so later. One or two dates and the connection was there and just as strong. I bolted again. I got married, he had a child. We reconnected one more time while I was deciding if I was leaving my husband for good or not. We saw each other a few days, no true dates, and no sex- just talking.  Once again the connection was overwhelming. And it scared me. I was a married woman feeling the pressure to not fail at the union I had committed to, and yet my heart longed for what I had with W. I could talk with him, laugh with him, be ME, the real me. I saw his mom at this same time and she told me “don't hurt him again” and that’s what I knew would happen. I wasn't in a good place and I would drag him down with me and he deserved so much better than that. So once again I walked away without a goodbye.

I last saw W in 2001. I lost his phone number and never looked for him on the web. I got divorced in 2003. My marriage wasn't one of true love. It wasn't a bad marriage, just not the one I belonged in. My ex-husband is a good man, he’s hardworking and I believe he loved me. He treated me well and gave me all I wanted. Except it wasn't what my heart wanted. He wasn't able to connect with me on the emotional level I so needed. Our marriage ended and I left Texas to go home to Wisconsin. I reconnected with J.K. and that didn't work. I blamed it on being the right guy, wrong time for him and me. Next I got involved with a barfly- an alcoholic. He wasn't a mean drunk, he just liked to drink too much for me. I called it quits with him when the bar life lost its gleam. He was a good boyfriend, he treated me decent, but he didn't give me the romance I longed for.

Next up was a first class, five star asshole. I was with him for two years. Our relationship was full of drama. One minute I was being accused of flirting too much with his friends, the next I was being asked to show them my boobs. I was a show piece to him. But we had our sarcasm and we could laugh. He did a few romantic things, but the intimacy wasn't there. He didn't respect me. I was never the whole package for him. I needed emotional support from him when Tony died and yet that’s when he left me broken hearted and miserable. That relationship was bad from the start and I refused to see it, to acknowledge that it wasn't what I needed. I took the few good parts and held tight to them while trying my best to ignore all the horrible shit. When he kicked me out, I bought my own little house and started down the road of self discovery with a long bout of depression.

Once again I connected with J.K. He would drive up to see me and call when he could. I thought we were going to be able to finally pull it together. I was wrong- he lied to me and left me reeling. After one more failed short term relationship (S), I was single for three years- I lost myself and found the woman I am today. I gave up on love. I honestly felt that finding “The One” wasn’t going to happen and that if I found a man that was half of my dream guy, I'd be okay with settling. I'd just fill the missing parts in with the woman I’d become. I could handle it. I would be okay with settling. I was ready to start dating again, I even signed up for Match.com in Dec of 2013 to see if I could find a good man that way. Let me tell you, not one single guy stood out and now I know why.

One day early in January of this year I sat down and searched for W on Facebook. I found him and my heart did a little skip. Then I noticed his status was “in a relationship” and it floundered, but I sent him a message anyway. I apologized for hurting him, for being a first class bitch to him. I wished I could have told him myself but I figured sending him a message was better than nothing. The response I got in return was so unlike W it cut me deeply and then proceeded to piss me off. He was curt and told me “nothing good could come from looking up an old love on Facebook and it offended him”. I was certainly taken aback and replied that I never met to disrespect him or the life he was in now. I wished him well and let it go. But my heart smarted from such harsh words from him. It wasn’t the W that I knew and had loved.

On Feb 16^th while out to coffee with a dear friend, I got a FB message from W. In it he apologized for being so curt and explained that his now ex-girlfriend had been standing there when my message came through. He said if I wanted to talk, he was there. My grin about split my face in two y'all. I drove home on cloud 9. When I got home I messaged him back and we ended up messaging, texting and then finally talking for 12 hours. It was pure delight. The minute I heard his voice I felt a peace I'd been missing. We swore to each other we'd go slow as our circumstances needed to dictate how we'd proceed. Fast forward two weeks of constant calling, texting and grinning. Enter two angels who knew what we needed and forced us to step up. We are living together now and I couldn't be happier.

As I sit here typing I see something that I wouldn't have if W and I hadn't found each other again. I wasn’t meant for anyone but W. Each relationship I had there was a part that fit me, but the whole wasn't what I needed. I look back and pick out the good of each of my exes: sarcasm and fart jokes from the asshole, looks and strength from J, romance from S, spoiling from ex-husband, lust from the alcoholic and a few others if I'm completely honest.  But not a single one of them was the full package. W is! He’s romantic, affectionate, silly, sarcastic, honest, turns me on with his voice, his smile or his touch and he completes me. We talk about anything and everything. We laugh over the same stupid stuff, he holds me when I need it, gives me space when I need it. We can watch stupid movies together and be content. We can shop with each other and not argue. We can be in public together and he will kiss me without hesitation. We hold hands while driving, touch when in the kitchen together just because. He dances with me while cooking, he snuggles me close at night. I am safe in his arms. I am treasured. I am the most beautiful woman in the world to him. I don't feel inadequate with him. I feel more like myself than I ever have. My smile is genuine and my heart is happy. I am living my fairytale.

We talk about our connection, the power of it- the lasting strength of it, a lot. We discuss our pasts openly and honestly. If I’m sad, all I need to do is be near him and his energy cheers me. When I cry, I don't have to hide my tears- he is there to wipe them away. I pick up on his moods just being in the same house- I feel drawn to him at the oddest times and will go to him. I kiss him and touch him and it’s like our souls recharge each other.  I saw a post Tyrese Gibson made on FB about a twin flame. I did some research on this phenomenon and have talked with W about it. I believe that W and I twin flames. I ran back at age 19 due to the power of our bond and how it scared me. I was the Twin Runner. I am no longer scared by our bond. Instead I am inspired and intrigued by it. I am in awe of how strong my feelings are for W and honestly cannot imagine living one day without him. I've been reunited with my other half and I will treasure him for the rest of my life. I am whole!

W- I thank you for being all that you are, all that you were and all that we will be together. I have faith in our love, our bond. I will always have your back, I will be your shelter in a storm, and I will always be your biggest fan and cheerleader. I am grateful for you. You are my missing puzzle piece. I love you so much more than I can express. To eternity and beyond- Me

**** For more info on twin flames start here: http://en.wikipedia.org/wiki/Twin_flame

Heartache is here.....

My heart is pained today. I know this feeling. The first time I experienced it was back in April of 2007 when my dear brother Tony told me he had a few months to live. The shock and the agony of his words took my breath away and left my heart marred and aching. It is an ache unlike any other- it’s not a broken heart from a love affair that ends, it’s not a crushing blow from cruel words- it’s the heaviness, the swift kick to your gut that comes with knowing someone you love is dying. There is nothing else like it. It makes your soul weep for their pain and your own that will come, it causes tears to run down your face uncontrollably and it ties your stomach in knots. It is an ache I knew would eventually come again. I just had prayed and hoped it would be a sudden loss, not the one I fear is coming- a long walk for her to the light and a long sobering journey to acceptance for me.

Yesterday I took mom and dad to see a new doctor- one that specializes in geriatric care. Mom was nervous, fearful and on edge. But this new doctor meshed well with her. He is gentle and kind and spoke to her and to me and dad and he listened. He saw things I didn’t have to explain- he knew the signs of dementia and didn’t use that word. He said “I see you have some memory issues.” He held her hand and called her sweetheart when she got anxious and the tears were falling. He calmed her and in turn I felt some relief. This doctor is going to be a good fit for my parents.

Mom did not do well on her memory test. I knew there were marked differences in the last year, but to see and hear her fail at things she used to be good at…. It was an eye opener for me. She can still spell but can't write very well anymore. She can't follow directions unless they are given one at a time. She turned to me and dad for help with answers and I read the pain and confusion in her eyes when I wouldn't help her. Her walk is more of a shuffle and she’s lost over 20 pounds in the last 3 months. Her appetite is non-existent. The doctor is confident that this is due to the dementia but is running tests to make sure. When he looked at me and said “this is severe memory loss” it took all I could to nod and not run out of the room in tears.

I signed up to be mom’s caregiver knowing we’d get to this point. I have seen what dementia and Alzheimer’s did to my grandmothers, an aunt and others. I knew this day would come for mom. What I didn’t think about was how terrified she would be. This morning I spent an hour with her consoling her and reassuring her that I am here for the long haul. She has asked me to just “let her go”, to “let Tony come for me”, and to “take her life”. It’s the last that one that has me most upset. I told her that I can’t do that and I know she knows I wouldn’t. But to be asked to, that’s a blow unlike any other. Tony never asked that of me. I can only assume she’s said these same things to my dad last night and this morning. I can only imagine Dad felt the punch in the gut like I did, but 100 x's worse since their love is over 46 years old. 

My mom is terrified, her words. How do I tell her not to be? She’s watched her own mother succumb to Alzheimer’s- she was her caregiver- she knows what’s coming. But to see that panic in her eyes, that’s something I wasn’t prepared for. I held her hand, crawled in to bed with her and finally got her to laugh. I made silly jokes and songs when in reality all I want to do is curl up with the woobie she made me and bawl till the ache is gone. I sit here typing with tears flowing uncontrollably and my stomach wanting to stage a full on revolt. I hear the black hole calling me, begging me to go to it for comfort and solace. And if it wasn’t for the two amazing men in my life, I’d give in. I’d willingly bury my head in the pillows and not come up for air or light for weeks…. months… whatever it took to numb the ache and not face this reality. But I won’t. I can’t. I am strong and capable of handling this ache. I will not let the hole seduce me ever again. I'll turn to my dad and my other half, W (more on him later), when I can’t hold the tears back and when I feel the pull of the hole. I will grasp tightly to the love these two men have for me and I will survive this journey no matter how long it is. I will hug my dad tight every day and tell him with actions and words that I am here for him and mom. And when my tears fall I will hide them from mom, but let W wipe them away. I know he will hold me and let me cry or scream or simply go numb- and he will not let me retreat into the hole. I embrace this journey and learn from the pain, and I'll have cherished memories of my mom when the end does come. Never will I regret my choice to be here for her and dad. 

Momma, this I promise you:

You are my mom, you are the woman who brought me into this world (and often threatened to take me out if I didn’t fly straight J ), you are the reason I can nag so well. I promise to hold your hand and listen to your fears, to wipe away your tears and remind you how loved you are. I will help you find a reason to smile and laugh every day- multiple times. I will stick my tongue out at you when you're being sassy; laugh with you when you give me the Polish finger. I will help you remember the words you can’t find anymore. I will play “Austin” by Blake and every Garth song there is so you can sing along even if you lose your voice. I will make up silly songs and watch you cringe at my awful voice just as long as you smile for me. I will make sure you are not in pain. I'll be strong for Dad and help him the best I can now and forever. I will honor your wishes and do all I can to make this last part of the journey as easy as possible. You don’t have an expiration date on your foot, or ass for that matter, but no matter how long you’re here on this earth, I will take care of you. And when Tony comes for you, I will smile through the tears and be glad to know you’re with him again. I will always love you Momma.

Your Dirty Gertie forever and ever…. 

Changes are coming...

Over the past few months there has been a slow but steady decline in mom. It started with the Urgent care visit leading to ER visits which lead to an OB-GYN visit for testing which lead to everything being okay in that regard. Then Dad brought home a cold and mom caught it and that lead to two rounds of thrush. From January to February she lost 13 pounds and I can see she’s lost more in the past month- I’d guess at least another 7 or so. Getting her to stand on a scale is damn near impossible so I don’t have an accurate number…. YET- next Tuesday she meets her new doctor and I’ll be very interested to see what she weighs now.

Mom’s not eating much anymore. If we can get her to eat the equivalent to one decent meal a day it’s a shock. And drinking, goodness you’d think we were asking for gold from her. I am trying to tempt her with anything and everything. I don’t care if it’s too sugary or too processed, I just want her to eat and drink. I don’t want to have to put her in the hospital. But I am facing the very real thought that she may have to be put in a home. That’s what I didn’t want to do; I wanted to take care of her. But now I am seeing that may not be the best option for her or for me and dad. It’s sobering to have to face the reality that I cannot do as I had planned. I feel a certain amount of guilt for not being up to this part of the task but I also feel some relief. And that makes me feel guilty. Ah good ‘ole Catholic guilt rears its ugly head. I know I will come to terms with it all, just right now the train is running a loop that can’t be derailed.

I watched my brother die. I’ve written about it and it was the hardest journey I’ve ever been on. I look at my mom now and see the frailness coming over her. I can’t help but see Tony again and that just tears me up. I see her body using up all the fat she’s ever had and know firsthand that I can’t fix it. She’s as stubborn as they come and I can’t force her to eat. I cry for the loss now and the one in the future.

Her mind has good days and bad days. Today she’s scared the house is going to fly away thanks to where her room is and the fact that we have some wind gusts of 30-40 mph hitting that side of the house. She’s asked me three times already if I have to go anywhere today and I’ve said “Nope, not today. I don’t want to blow away.” I smiled at her and kissed her forehead knowing very well that she’ll ask me a few more times today.

I see how mom’s decline is affecting my dad too. He’s got more worry on his face and he’s snacking more. I get my bad snacking habits from him- it’s a bad way to cope but it’s ours. I want to take the worry from him but know I can’t. He has to face that his wife of 46 years is failing and we may not be able to keep her here at home much longer. My heart hurts for him. I can’t fix it but I can remind him that he’s done all he can and that I love him. We will get through it together- we are a team.

I have to face the fact that I am not superwoman and can’t do as I had hoped. I have to face that keeping her here at home may not be the best option anymore. Talking with her new doctor on Tuesday is going to be hard but I must be honest with him and her. It is going to freak her out to hear the words “nursing home” and/or “home health care”. But I know I have to do something more for her- I need help from others that aren’t family and won’t give in to her “I don’t want to” attitude.

In the meantime, I will look into our options. I will do my research and I will figure out what’s best for her, for all of us. And I will cry for the closing of another chapter….

Conversations.....

“But I want it,” pouting and putting her chin out.

“You don’t like it,” I tell her.

“But I want it.”

“Ok, here you can have it.” I said as I put the burrito containing rice and chicken and beans in front of her.

“YUCKY!” as she spits out the rice.

Or there’s this one:

“I don’t want to. You can’t make me!” she stomps her foot.

“Put your shoes on. We have to go to the doctor.”

“NO! You hate me!”

“I don’t hate you. I want you to stay warm.”

“I am NOT going!” as she attempts to get back in the bed and under the covers.

How about this one:

“What are we doing today?”

“Running errands,” as I help her get her jacket on.

“Are we going to the doctor?” she asks with fear in her voice.

“Nope, just the post office and grocery store today,” as I zip her up.

“Oh. I am not going to see that one doctor ever, EVER, again.” She sticks her chin out stubbornly.

“No doctor today. No worries. Now let’s get out the door.” As I try to usher her out the door.

“Promise?”

“Yes I promise, no doctor today!” I try not to lose my patience.

And of course there’s this one at least once a week now:

“Can I eat now?”

“You just finished eating. Are you still hungry?” I offer another orange or a cookie.

“I want soda. But the one I like.”

“It’s right here; and it’s the one you like.”

“Are you sure? I will know you know.”

“Yeah I’m sure it’s the one you like.”

She takes a drink and smiles. “Yep that’s the one I like.”

I smile too.

But today there was this one at the breakfast table:

“Who is that?”

“Who is who?” I ask.

“Who’s that?” pointing to me across the table.

“It’s me, Amy.”

“Who is that?” she asks Dad.

“Put your glasses on mom. Then you’ll be able to see me. It’s just me.” She recognizes my voice and puts her glasses on, but the look of confusion is still there. She can’t recognize my face. It’s the first time this is happening. It makes me take a closer look at her face to see if it’s a vision issue or a recognition issue. It’s a recognition issue and it causes my breath to catch but I can’t let her see that.

My mom has dementia. She will turn 70 years old tomorrow and most of our conversations these days remind me of my time as a nanny. I am mom’s primary care giver. I moved in with my parents in September of 2012. I knew what I was getting into when I moved out here. I knew that there would come days like today. I just wasn’t ready for it to be NOW. I wanted more time with the mom I knew. Not this new mom that I have to think of in terms of a toddler and yet is still my mom. I watch her like I would a 3 year old. She likes to slip the dog the food she doesn’t want to eat (the dog is enjoying this new side of Grandma). She needs to be told to sit fully on the chair, not half on, half off. She holds my hand when ever she walks or takes dad's arm. When she gets an idea set in her mind, there is no derailing it. You can’t simply put the plate of food in front of her and assume she knows what to do. I often find myself watching her to make sure she doesn’t take too big of a bite or that she puts the top back on the soda bottle so it doesn’t spill. In the car, she sits up front with me so I can have her within arm’s reach.  I watch her drink at red lights or in parking lots so I can make sure she doesn’t tip the bottle the wrong way and I take the bottle from her and put it the cup holder. I am to the point that I don’t trust her in the car alone anymore because she unlocks the doors and opens the windows without looking to see who is around. I worry someone could hurt her. But I can’t take her in the stores anymore either because too many people freak her out; she gets scared by the carts, and by all the noise. My only option is to do my errands after 6 when dad gets home from work or on the weekends when Dad is home with her.

My past experience as a child care provider helps me think in terms of how to make it easier for her and dad and me. I bought a baby monitor for her so that I can be elsewhere in the house and hear her. It’s really come in handy and puts me at ease so that I don’t have to hover over her. I bought a wipe warmer because she complained that the wipes were making her cold when she cleans up. I cut her food into smaller bites and am learning to only give her half at a time. I keep our days simple and uncluttered. I stick to a schedule because she does best on one. Every day at 11 we eat lunch and watch Maury. Yes you read that right, Maury. She loves it. She and I make fun of all the commercials for the various colleges. We mimic the women that scream at the men, we laugh at the guys who get proved wrong, we giggle over some of the downright stupid things the people say, we enjoy watching the reactions of the audience members and at least once per day she tells the guest to “Shut the hell up you FOOL!”.  It’s not Barney or Sesame Street or Dora, but it is harmless for her to watch. The news confuses her as it moves too fast and by the time she’s comprehended something, the newscasters are on to the next topic. We used to watch Criminal Minds but that started scaring her. She can’t separate the real from the fake. Maury she can handle. And it makes her smile and that’s all I care about.

We keep it simple in terms of clothing too. Mom lives in t-shirts, sweat pants, zip up hoodies and good slippers. She doesn’t look like she’s walking out of a fashion magazine, but she’s comfortable and warm. When we got out people look at her which makes her nervous. I smile at her and ignore them. My temper wants to go off on them and educate them. Instead I smile and go about my day. I can’t let mom see me get upset. It would be too much for her.

Each day is new to her and for me. I never know if today is going to be a day of tears or laughter or sarcasm or anger- or a mix of it all. When she cries I hug her and comfort her as best as I can. When she is laughing, I laugh with her. If she is sarcastic, I go with it. Some days she can even handle me sassing her back. But when she’s angry, I stay out of her way. She can get downright mean on her angry days. I have learnt to walk away instead of standing there taking her cruel barbs. I am learning to let them bounce off of me instead of letting them go straight to my heart. When she calms down, I go back to her. I am never far away from her as my office is across the hall from her bedroom which is where she is most comfortable.

I do get frustrated with her and want to scream some days, but I know it’s not going to make it any better. I take a deep breath, play a few rounds of Candy Crush and move on. I watched my dad this weekend deal with his own frustration over the changes. He had his first experience with a soda spilling all over her and the floor mat in my van. He learned the hard way you can’t just give her the bottle and trust that she won’t spill it. I wanted to say just the right thing to him about it, but found myself stumbling over the words. I know it’s hard and it’s different. What I cannot imagine is how it must feel to watch your wife of 46 years change in front of your eyes to a woman that is no longer the one you married but yet still love. My heart hurts for him and I have no way to make it better. All I can do is let him know that I love him and that we will get through this together.

Dementia is a cruel, vicious disease. It robs the affected person of their filter, their memories, and their dreams. It changes families forever, it reverses the family roles, it changes the dynamic of the family. I am blessed to be able to be here to help my dad and care for my mom. I am blessed to be still making memories with her. I will forever hear her voice in my head every time I watch Maury. I will be able to reminisce with my dad in the years to come over the many things we are going through now, to remember the silly stuff and let go of the frustrations. I may not lead the life you would choose, but there is NOWHERE else I would choose to be at this time in my life. I will forever be changed because of this journey we are on as a family. And that’s okay; it’s making me a better daughter, sister, friend, woman and human being.