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