Monday, December 31, 2012
It is New Year's Eve and I am sitting in my bed. I am downstairs. I am away from my parents. I can not be near them right now. I need time alone. What I really want is to be able to walk next door and talk to my best friend K. Or to get in my van and drive to my sister M's or my aunt's. To be able to be me without having to watch every word that comes out of my mouth.
I hate New Years Eve. I have since August 24, 2007. Because since then, it is not the way it used to be. It will never be the fun it used to be. It isn't the celebration it used to be. Tony would have been 40 at 12:01 am. But he never made it. He died at age 34. Of cancer. He died. And all the fun of New Years went with him.
Sure I've tried in the past few years to have fun. But I can't. I always feel this cloud hovering over me. This sadness that just creeps in. I try to fight it. I tried to hide it in Vegas in 2010. I was there, but it wasn't fun for me. My heart hurt the entire night. I faked it as best I could. But I'm sure my friends A, T and B knew something wasn't right. I should never have gone. Because I didn't belong there. I don't know where I belonged, but it wasn't there. And I still don't know where I belong on this hated holiday….
I miss my house in Wisconsin. I miss my friends, my family. I miss being able to do what I want when I want. I miss having my own life. It's hard not having what I had grown very used to over the past five years. My little two bedroom house- with all it's imperfections. But it was mine. I didn't have to worry if I put another hole in the wall because I hung a picture. If I didn't feel like doing dishes, I didn't. I lived alone and I was okay with that.
Now, I live with two other people. People who are set in their own ways. People who have their own language with one another. I am on the outside. I am trying to do what I think is best, but I get it wrong… a lot. I do not know how to make her happy. I try my best every day. And she asks, "When is Dad coming home?" no matter if it's noon or 4:55 pm. She always wants Dad. I am not the one who can make her world right.
I can sit in the same room with her and watch mindless TV all day and have her get annoyed with me. I can fix lunch in the morning and then retreat downstairs to give her space and she'll get sad and lonely. I can spend half the day up and half the day down. I can take her shopping in the morning for three hours and in the afternoon she snarkily comments that she is "locked up in this house all day." I can ask her to go for a walk with me and be told, "I don't want to", so I go. But then I "left her alone" and she gets scared.
I know that no matter if it was me or my dad or the blue man on the moon, no one could get it right even half the time. And that's what kills me. I don't like not being able to get this right. I was an "A" student through high school. In college I graduated with a 3.1 GPA and held down a job for 3/4 of my time there. I was smart. I knew what I was capable of. Now, I feel as uneducated as a block of stone. I do not know how to do this.
When I sit down to write, I know how to do it. I can make my feelings understood by a reader. I can help someone see what it's like to walk this line or become vested in whatever topic I want them to be. But I can't make my own mind understand why I am getting so frustrated. Why I want to scream and cry and yell at her. I know it'll do no good. So why do I still feel like it's the only way through to her?
I feel guilty for feeling this way. Here I sit in tears and all I can think is I shouldn't share this with you. I should just suck it up and deal with it. But I promised I'd be honest. It sucks. Being honest with you, means I have to be honest with myself. And I don't like feeling like this. I don't like feeling lost and incompetent.
I miss my brother. I miss having him to talk to. There is no one else on this planet that gets me like he did. He and I shared the same parents. We knew the same life. And now, to try to explain to someone on the "outside", it's not the same. Because you don't know the back story. You don't know my mom. You don't know my dad. You don't know me. It takes forever to give you the back story. When all I want is my brother to say, "Hey I understand. Mom's fucked up. The whole thing is fucked up. But I got your back." And know that he did.
You can tell me you have my back. But in reality, you don't. I don't expect you to. You have kids, a husband, a life that you need to be involved in. You're not here. I am. I can't ask you to come sit with her for an hour so I can go meet another friend for lunch. Hell, I don't know anyone here besides my parents. They don't have friends outside of each other (long story for another blog) here in Colorado. If you call, I can't talk to you about what's going on. But if Tony was here, I could. I could talk to him in our code and he'd understand. He'd know what to ask and he'd know what was what.
The bond between siblings can be strong or it can be weak. I was lucky. My bond with Tony was unbreakable. Even when he died, that bond is not gone. I know that if I turn on my radio, he'll send me my song. He'll let me know he's still listening. I just wish like hell that I could talk with him. That I could laugh with him. That I could wish him "Happy 40th Birthday Ugly Boy!"
I wish like hell it was 1990 again and he and I were playing Monopoly, eating all kinds of junk food, watching Segal or Stallone blow some shit up and laughing like two idiots. And at 12:01 I'd wish him Happy Birthday and sing as loud as I could. Then we'd go back to our game and our dumb movie. Before everything changed. Way before the world as I knew it ended….
Friday, December 28, 2012
If you've seen Disney's Finding Nemo, think of the scene with the seagulls and you'll hear what I hear in my head right now.
"Isn't that afghan mine?"
"No mom, this is my woobie." I will not give up my woobie to my mom. I don't care how upset it makes her to hear the word "no". She will not take over my woobie.
Mom has started saying, "That's mine", to a lot of items. Most of the time, I could give a flip. If she wants the chair pad to be hers, have it. The book I'm reading, hers. The bench in the entry way that I bough in 2000 for my house in Texas, its hers now. My jeans that will never fit her, sure… have them. I know that when she tries to put them on she'll end up telling me they don't fit her and I can have them. The pots and pans, hers. Not even gonna fight her on that one. Not that she cooks, but its important that I know they are hers and I better not damage them. Not worth arguing over. I've learnt it's easier to agree with her and let her claim it. It's not hurting anything or anyone.
There are a few things mom will never claim. First off, my dog- she reminds me daily that "Omar is yours, you take care of her." (FYI- her name is Maybelle but mom insists on calling her Omar. LOL Luckily the dog has figured out that's her name too.) Second, the laundry; that's one job I'm sure she was very glad to hand over. Third, my minivan. She hates my mini van. Why, I have no idea but I know she'll never tell anyone its hers. Fourth and Fifth, the lawnmower and snow blower. Two more things she's glad to be free of.
But when she tells me my beloved woobie is hers. OH HELL NO! LOL I tell her firmly that it is mine and she gives up. I think she can hear in my voice that this is one item I will not give in on. She has taken over two of my snuggies, a fleece blanket and a few other blankets. (I am a blanket-aholic for those wondering. I love blankets, even in the summer!) Not a big deal. I know that at some point down the road they will all come back to me. But my woobie, NOPE! Anyone who has ever been in my house knows, unless you're under the age of 5, the woobie is mine. If you're a kid, you can cuddle with me under it. The only other being allowed to use my woobie, without me, was my dog Petey. He'd pull it off the back of the couch and wrap up in it. Or he even crawled into the dryer once with it. He loved it as much as I do. Even Maybelle knows that unless I'm using my woobie, she's not to be in it, on it or near it.
My mom knit this afghan for me in 1995 as a gift when I started college at the University of North Texas. It is made from white and blue variegated yarn that I chose and is in the fan pattern. It is extra large because when I snuggle up in it I want to be wrapped from head to toe. I told her when it was over my dad's head (he is 5'11) by at least two inches, then it was long enough. I am a whopping 5'3…. I like a big blanket. When it was done and she gave it to me it officially became my woobie. No other blanket I own or will own will ever be called "woobie". It went to college with me, it went through my marriage with me, it has lived in Texas, Wisconsin and now Colorado. I have traveled with it. It is the first thing I unpacked each time I have moved. It is a part of me. This will be the only afghan I ever have made specifically for me by mom. She has now forgotten how to knit. I dreamed of a yellow and blue one and she got the yarn for it, but it will never come to be. That royally sucks.
She's made other afghans. One is the size of a bedspread for a king size bed. I kid you not- it is HUGE. It is packed up right now as I hate folding it but love snuggling in it. It was made out of all the leftover yarn she had. There are stripes of orange, brown, a variegated puke color, blue, white, yellow, green, and red. It is not a pretty afghan, but it is huge and it was rarely used until three years ago when I found it in a box. She made it in the mid 70's and only used it for a few months on their king size bed. She put it up just after I was born in 1976 because with three small children she didn't want it to get wrecked. It is still soft and smells of the lavender she packed it up with. I have laid claim to this one and since it's still packed up, I think I'm safe. ;)
One of my very best friends has one that even her new husband likes to cuddle in (though at first he didn't see how a blanket with "holes" could keep anyone warm). My niece in Germany has a gorgeous one. My nephew has one. My ex-husband has one- he even offered to give it back to me when we divorced in 2003. I felt that it was only right for him to keep it, she made it specifically for him. I think my brother's ex-fiance has one. My dog uses the one that was made for me as a baby. We have one that is Packer colors- that's dad's favorite one. I have found a few other ones in her boxes and I will discuss with her who they should go to. Her sister had one, but back in 2001 it fell apart in the washing machine after 30+ years of weekly washing and kids and grand-kids (My aunt was a bit OCD). Hell, I even had two for my cabbage patch kids. I don't know where they are now though. There may be other's out there that I don't know about.
And there's one in a box in her office closet. It's for my dad- it is tan and is a beautiful popcorn pattern. She just finished it this summer with the help of my Aunt B. It was been 95% done since 2010 but Mom couldn't remember how to take it off the needles so Aunt B. helped her. Dad knows it's for him. But she still won't give it to him yet. She's told me once she's gone to give it to him. I am hoping I can convince her to do it sooner.
But the most important one is one she made for my dad back when they first got married in 1968. It's made with leftovers also. And it has strings, I guess you could call them tassels of sort. It is UGLY. Anyone who has seen it will say it's not very pretty. But when you lay under it, it's warm and that's the purpose of it. When we were growing up, you could find any one of us three kids under it with dad. Sometimes, just me and Tony. When we were sick, mom would cover us with it. Even as teens Tony and I used to fight over who got to use it. However in April of 1995 when mom, dad and I moved to Texas it went missing. It tore mom up not to have it. She found it in July of 1995. In my brother Tony's apartment in Wisconsin. One of his buddies was covered up with it. Tony said one word, "SHIT!" and then looked sheepishly at my mom. She burst out laughing because she should have known who took it. He admitted that he normally hide it if we were coming to visit, but due to hangovers that day it didn't get stashed away as planned. Mom declared it his from then on. When he moved to Texas in 1996 it came with him. When he moved back to Wisconsin in 1997, it went with him. Many girlfriends thought it was ugly and he just told them that they couldn't use it then. When he was in a coma in 2003 I didn't have to ask which ICU room he was in, his woobie stood out like a sore thumb. When we shared an apartment in 2004 because he was still doing chemo, it was the only thing that stopped his shakes. Anytime he napped, it was wrapped around him. It moved from place to place with him. In his last months, it was what he demanded to be covered with. I had to promise to wash it and dry it and bring it back with in 2 hours. When he took his last breath, it was covering him. When I crawled into the hospital bed next to him after he passed, I used the edge of it to soak up my tears. It was his. Now… now it's Mom's. And I will never say its not. It’s a way to have him with her every time she is under it.
That is why I won't let her claim mine. This is something that for the rest of my life will remind me of her. Every time I snuggle up in it, I'm getting a hug from her. Whenever we lived far apart and I was sick, it was my woobie I wanted because mom wasn't there to hold me. (I'm a HUGE baby when I'm sick- I admit it!) Right now as I type this, my woobie is wrapped tightly around me- it covers my head and my feet. It gives me comfort, it soaks up tears, it stops the shakes, it is love. It is a tangible connection to her that will never be broken even when she is in heaven. It is mine.
This is Tony's woobie.... That's Tony, my nephew and my bull terrier Petey. Two of the three in this photo now reside in heaven and watch over my nephew.
This is Tony's woobie.... That's Tony, my nephew and my bull terrier Petey. Two of the three in this photo now reside in heaven and watch over my nephew.
Wednesday, December 26, 2012
After I finished the previous blog, I got to thinking… momma wasn't the only one who made me into the strong, independent, loyal, loving woman I am. My Daddy played an even bigger part in making me the woman I am today. Here are the lessons I've learnt from him.
- Loyalty- I give my dad extra credit because he has stayed with my mom through some very hellish years. They will be married 45 years on Jan.6, 2013. He isn't turning his back on her now that she's sick. He's staying by her side. And I am inspired and in awe of that.
- Education is important- My dad got his B.S. in 1990, and his Master's in 2004. He was determined to make a better life for himself and his family. He went to night classes over many years to get his degrees. He made sure I could go to college and I got my BA in 2000. He has always encouraged me to learn and never stop learning. Even now he's very supportive of me going to classes for sewing, cooking, whatever… as long as I'm learning.
- Family matters- Both my parents have taught me the importance of family. If it weren't for daddy, mom couldn't have come to take care of me or Tony. He's always made sure that no matter the cost that us kids had at least one of our parents when we needed them. And when his sister got sick, he made sure that he got back to visit her multiple times because family matters. He calls his brother weekly and their bond is what I miss about Tony. If his sisters needed him right now, he'd get in the car and drive there, no questions asked.
- Respect- This is a lesson every dad needs to teach his daughter. By respecting your wife, you daughter will come to see that she deserves to be respected. When a man dared to lay a hand on me it broke my heart to tell my dad. I knew it hurt him as much, if not more, that I'd been abused. He never hit my mother, no matter if she hit him. He is the man that I measure all others by. He never let us kids speak disrespectfully to mom or another adult. He respected us and we respected him. Still do!
- Home Repair- When my kitchen sink in WI started leaking, it was via the phone dad had me fixing it. When the toilet downstairs wouldn't stop running, via the phone he instructed me on how to stop it. Even though I was crying -due to burns on me legs- the entire conversation, he walked me through it step by step. When my sump pump quit, Daddy was with me- via the phone- as I prowled Fleet Farm in search of the right pump. When I couldn't get the lawn mower to start, he walked me through how to check it. And every time he and mom came home to visit me in WI, he never complained that his "Daddy-do List" was full. Never once has he made me feel stupid for my questions or told me he didn't have time to teach me. I still won't play with electricity, but I know where the breaker box is and how to turn off the power to the entire house. I'm proud when he calls me "Princess Plumber".
- Patience- See above! He may get frustrated, but he still teaches me what I want to learn. Even if as a girl I question every darn thing.
- Nap time is good- When I was a child I didn't get why Dad liked to nap. Now as an adult- it's one of my favorite activities. Never underestimate the value of a refreshing nap. I take them whenever I can.
- The value of myself- I have been through hell and back. And my loudest supporter is my dad. He reminds me that I am stronger than I think. That I can do whatever I set my mind to. He doesn't allow me to settle for less than what I deserve. He cheers me on and up when I feel lost and worthless.
- Love- this is the biggest lesson my dad has taught me. Unconditional love isn't just words to him. When I lost a job, lost my house, lost my self… Daddy has loved me through it all. When I started to believe what mom told me, he reminded me that I was loved by him. When I felt like my world had come undone after Tony died and spiraled into depression, it was Daddy who saved me. He was there every time I called or needed him. And now on the bad days with mom, he's the one who's reminding me that I can do this and that I am loved. He reminds me that mom does love me even if she gets mean, that it's the disease. I know this, but he knows I still need to hear it.
My dad is my best friend. He's my confidant, my teacher, my boss and my partner on this journey. But most of all he is my HERO. And I don't tell him that enough.
I LOVE YOU DADDY!
- Yuckaflutz: This word could be heard often when I was young and mom was driving. It wasn't until I was in my teens that I figured out what it meant. "Fucking Yutz" . Yep, I use it and always will.
- Temper tantrums: My mom could throw some great ones, making the door slam like no one else I've ever heard or seen since. Yes, I've slammed some doors in my life. And yes, I have thrown a temper tantrum. But I have learnt that in the moment it may feel good, but the aftermath isn't pretty. I have learnt that temper tantrums are meant to be used by children, and that is all.
- Dork: As I became a college student and a wife, I learnt that "dork" is a term of endearment for me and my mom. When we're out shopping, you'll likely hear one of us call the other "dork" and/or "Loser girl". We can be silly with each other. I wish it had been that way when I was a teenager.
- Family: When you are a mom, it is forever. My mom has come home to take care of me for 95% of my surgeries. She didn't hesitate to come home to WI to be with my brother in the last weeks of his life. She is a mother and will be forever. That means her children are always her priority. I am the same way though I don't have children. I am repaying her kindness and service, by being here when she needs me.
- Strength: My mother has lost a baby due to miscarriage, a son to cancer and a son to circumstances. She has minimal contact with her own siblings for numerous reasons. But she carries those losses with strength. She misses her sons, baby and siblings, but she keeps living. No parent should have to bury a child and my mom has lost two. She is strong in her opinions, her convictions and her love for me and my father. I see that I have her strength, to handle whatever comes my way.
- Forgiveness: My mom has not been a perfect mother. She has been cruel and abusive. I have learnt to forgive her for myself and for her sake. She hasn't asked for forgiveness as she is unable to see what she's done wrong. But that's okay. I know she did the best she could with her own history and that's all I need to know. She does love me, even if it's not a perfect relationship. Forgiveness wasn't easy, but it has made me a better woman and human.
- Spunk: I have my mother's spunk. I can give as could I can take. I am sarcastic and sassy, much like she used to be. I can diffuse a tense situation with laughter. I know laughter is really the best medicine.
- Fight for what you believe in: I am not afraid to say what I think or feel. This I learnt from my mom- she never held her tongue when it mattered. She fought for me in high school when a dumbass teacher tried to fail me for no reason, she fought to get my brother Tony diagnosed with dyslexia, and she fought for the students she taught. I fight for what is right; for her, for me, for those who need me to fight for them.
- Beauty is on the inside: My mom taught me at an early age to look for the beauty in every person. I don't see the scars on a face, I see the heart within. True beauty lasts, looks will fade over time.
- Fortitude: Things don't always go the way we want them. My mother has dementia and hates it. But she tries to not let it rule her. As time goes on that will be harder and harder. She didn't give up on Tony when the doctors told us to take him off the life support- she knew it wasn't his time. I do not give up even though there are many times I thought it would be best to. I know that if its hard, I can handle it. I will survive!
I saw another blogger's post and it made me really think about what I've learnt from my mom.
These are just some of the things my mother taught me. I have strength, grace and a heart full of love. Go ahead and blame my mom…. I don't. She helped make me the woman I am. I am not perfect- I don't want to be. I do my best every day and that's all I can ask of myself.
Kudos to all the mom's out there doing their best for their children. Don't let others tell you you're doing it wrong, they aren't you and they don't walk in your shoes. Only you can know what's best for you and your children.
Dedicated to: DeBie Hive, hugs and love to you
Wednesday, December 19, 2012
I can’t call you. You see if I call you to vent about what my day is, she is listening. And if she hears me speak of the problems I am having with her or even with just my own body, she gets very upset. She will throw back those things at me in a very mean way. If I speak of the temper tantrum or the crying spell, I am “making her lose her mind.” See, I can’t call you to vent. Instead I have to type it out and hope to hell you understand why I can’t speak with you when it’s happening.
Today I have been in tears three, no, four times, because this is the fourth episode of crying. (BTW, it’s hard as hell to read what I am typing through tears. So if shit is misspelled or I have fragmented sentences, please forgive me.) Let me tell you what just transpired….
Mom is sitting watching GH and I am sitting at the kitchen table eating a late lunch (1:15 pm MST). Out of nowhere she says, “I need one of those Glade spray things. This house always smells bad.”
“Mom, you have one. I can set it up for you but then I can’t be in the room it is in. It sets my asthma off.”
“You always tell me no. Why do you live here?”
I didn't respond. Just let her mumble to herself and kept eating.
A minute later, “I have perfume in my room; I better go throw those away too. God forbid your asthma is affected.”
“Mom, perfume doesn't bother me. You can wear as much perfume as you like. It’s the propellant in the canister that affects me.”
I go back to eating; she goes back to watching GH. “You know this is why I don’t like watching this show anymore. I like Sam and the baby, but I don’t like Connie or Todd.”
“Really mom? I thought you liked the show. Sam is good but there’s always got to be the bad guys for people to hate. TV shows just can’t leave the bad out.” (I didn't say this sarcastically or anything. I thought she wanted to have a conversation about the show- which I don’t watch. I’m usually not even in the room when it is on.)
“Well thank you Miss Know it All. I’m so glad you told me what I didn't already know.” She glares at me which I barely caught. “You know you annoy me so much. I’m going to my room and shut the door. Just stay the hell away from me.” And she picked up her bag and soda and walked out of the room.
I shook my head and went back to eating. Not two minutes later she’s back in the room (the kitchen and family room are joined) and looking for something. “Mom, what are you looking for? Can I help?”
“I can’t find my bag. I just had it and now I can’t find it.” She starts to cry.
“You took it with you when you went down the hall. I’ll help you find it.” And I follow her down the hall to her bedroom. Once there I find her bag on dad’s side of the bed on his night stand. “Here it is mom. Can I open the bedroom curtains for you?”
“Yeah, because I’ll be living in this room since you keep me locked up in my room all day.” She is red in the face and then says, “You know, if you tell that doctor that I’m losing my mind or crazy, I’m telling him NO. It’s you who’s crazy. You’re the one losing your mind. All you do is tell me what I can’t do all day.” She is crying and looks like she wants to hit me.
“Mom, no one thinks you’re crazy. And you can do whatever you like. If you want to read, or knit, or watch TV or take a nap, do it. You have your office, the living room, the porch, the family room. I'll take you wherever you want to go. You know you can do whatever you like.” I am on the verge of tears at this point.
“No, you tell me no. All you say to me is NO. I hate you. All you want is to keep me locked up. You don’t let me do anything. I own nothing in this house but my husband and you’re trying to take him from me.” She is bawling and now I am crying.
“Momma, you can go anywhere in the house you want. All the furniture upstairs in yours and you own it. Your office is yours, the living room has all your antiques in it, and your bed that you’re sitting on is yours. My stuff is downstairs and that’s it.” I wipe away my tears before she realizes I’m crying.
“I’m so frustrated. All you keep saying to me is that I’m losing my mind. I am not. You’re making me go crazy.”
“I’m sorry you’re frustrated momma. How can I help? If you don’t tell me what I can do to help you, I don’t know what you need. Do you want to cook dinner tonight?”
“No I don’t want to cook. I don’t like to cook.”
“Do you want to help with the laundry or the cleaning?”
“No. That’s what you’re for. You do it.”
“Okay, then what do you want to do?”
“I want my own space.”
“I can understand that momma. Normally I’m not upstairs with you as much as I have been today. But I needed to clean the pantry and the fridge out. I’ll go downstairs right now and leave you alone.”
“I don’t want to be alone. I have a headache. I hate this headache. ” I can hear the frustration in her voice and it hurts me that she’s hurting. So now she’s crying and I am too. And she sees it and it confuses her. That I see in her eyes.
“Okay, do you want your medicine? I know how bad a sinus headache can be. I can give you two pills and if you want to nap you can. I don’t like that you’re not feeling well momma. I just want to make sure you’re okay. That’s why I come up to check on you so much. I don’t want you to fall or get hurt.” I hug her and she leans into me.
“No I don’t want that stuff. I don’t want to be dependent on pills.”
“But if they help you feel better and get rid of your headache….”
“Why can’t I just do what I want? I can’t remember how to knit!” And I feel her start to sob. She makes no sound but her body shakes as I hold her tight.
“I’m sorry momma. I can’t help you with that. If I knew how to knit I’d help, but I’m sorry I just don’t know how.” I feel as helpless as a two year old at this point.
I sit down next to her and we both cry a bit more. She looks at me and frowns. I don’t know what she’s thinking, but I am trying to change the subject. “Do you want to take a nap? Or would you like me to find Criminal Minds on TV and watch that?”
“I am too panicky to nap. I want to be out of this room.” She’s rubbing her head and face. I know her head hurts but I can’t force her to take the pills to make it better.
“Okay, then let’s go into the family room and you can sit in the recliner and relax. I need to go downstairs and do laundry because I’m almost out of underwear.” I am not, but I know this way I can “disappear” and she will be okay with me giving her space.
So now she’s settled in her chair watching TV. She’ll probably forget about this episode by the time I’m done typing it up. That’s the only up side to this damn disease, she forgets about this type of stuff very quickly while it eats at me.
I am downstairs now with the laundry going and tears flowing. I called my dad at work right after I got her settled and let him know it’s a very bad day. He understands and lets me vent a bit. I can’t talk for long for fear that she will somehow overhear what I say. She does still have that SUPER MOM hearing.
I wish with all that I am that I could call you right now. To hear you tell me it’s okay. That I’m doing the best I can. But I can’t. Instead I have to reach out to you via this blog. Because texting this thing, I don’t think any phone could handle that!
I know what’s bringing on mom’s mood and there’s nothing I will or can do to make it go away. She has her MRI and ultrasound on Friday. She is worried about what it will show. She doesn't want to know. My mom has always hated the doctor. She is a former nurse, and makes the worst patient. Her fear is making her lash out at the nearest person… me. I know over time that I will grow thicker skin to this and I’ll learn how to turn her from this type of frustration.
Until then, I’ll vent via here. And know you’ll be praying for me.
PS: I was right! The doorbell rang and she called for me. Up I ran to receive the box that arrived. She’s laughing with the mailman and playing with Belle. I give her one of the books because it’s not her Christmas present and her eyes light up- The Chew cookbook, and the earlier episode is forgotten. One hour later and she is back to being silly. I only wish I could get over it that quickly….
Monday, December 17, 2012
This weekend I made two big mistakes. One, I argued with mom when I know better. Two, I went errand running all day Saturday with mom and dad. Let’s delve a little deeper shall we? (Like ya have a choice… LOL)
One: never argue with a dementia patient. You won’t win because they don’t argue logically and two it’s not worth the frustration. I forgot that key item on Friday. I stepped right in to it. I corrected her recollection of an event. I know better, it’s not hurting me or anyone else for her to come up with things that aren't in order or never happened. But no, I was only half listening to her and corrected her. BIG MISTAKE! When Dad got home she told him, “all she does is tell me NO! Well she can just be told NO. I’m not listening to her anymore.” So of course Dad doesn't delve into why I used the word “no” he just assumes that I told her she couldn't do something. What I should have done was got his attention when she wasn't in the room and explained where the “no” came from. Or better yet, I shouldn't have used the word “no” in the first place. With a dementia patient, the word “no” means so much more than “no”.
For example, “No, mom your shoe is on the wrong foot.” What she hears is “NO, you can’t do anything right.” Instead I have learnt to say, “Mom, let me help you with your shoes because I don’t want you to trip.” That she can handle.
Or another example, “No mom Tony was born before me. And I wasn't alive when Grandpa F. was.” She heard, “No, you are wrong. You are always wrong.” What I’m learning to do is nod and laugh at the appropriate places instead. It’s only me she’s telling the story to. I know I was born in ’76 and grandpa died in ’75. Her revision of the events isn't hurting anyone. And it’s not worth the fight.
On the other hand, today when I said, “NO! Don’t touch that. ”, I didn't care that she got upset. She was touching the top of the toaster oven with her bare hand. She got really upset with me when I yelled (I was across the room). I didn't care. She burnt her palms really bad as a child and has no concept of heat in her palms. When she started to yell at me I took it. Then I looked at her and said, “Momma, I don’t want you to burn yourself. You know you can’t feel the heat, I can. And that top is much hotter than you think.” That’s when I need to use “NO”!
It’s these lessons that can make my days easier. Or if I forget this one, the day can go to hell in a hand basket faster than a two year old can empty out an entire container of powder. (Y’all know how fast those little buggers can get in to things! J)
Now for mistake TWO! I know better than to spend 6 days in a row with mom. I have to remember that as much as I like spending time with the two of them, I also need my time alone. I spent the prior five years living alone. It’s only been three months here and I’m not “over” my alone time yet. Plus I need the time away to decompress. When you’re the primary caregiver, you need breaks. Your mind needs the rest, and so does your heart. I have always been an emotional gal. I take things to heart and can get hurt by mom easily. Without taking the breaks I need, those hurts become too much to handle. I have to remember to take time for myself. An hour in the evening doesn't cut it. I need to make sure I get hours of time for myself and my pursuits or I will lose my shit.
Every caregiver needs to be able to take a break. And that includes moms and dads, nurses, social workers- anyone that cares for someone else as their job. This is my job. I spend 10 hours a day with mom, making sure she has everything she needs and that she’s not alone. Whether I take her shopping or am doing laundry, I’m working. I have found that my much needed afternoon naps aren't happening because I continue to keep an ear peeled. Instead, I’m going to start going to bed earlier and push through the day. And on the weekends, I need to make sure I get my time to be alone. To recharge and relax whether I choose to organize my office, or to decorate, or to color, or to go to the movies or however I choose to spend my time. Without my alone time, I will break. And breaking isn't an option….
Wednesday, December 12, 2012
On Friday, I took mom to the doctor because she hasn't been feeling well. She has a cold, the one everyone else has been getting. The doctor asked some questions about how her body in general was feeling. I was proud of her because she admitted her carotid has been hurting her every once in a while. I also told the doc that I noticed her walk is off; she’s doing more shuffling and dragging of her feet than stepping. So he put in a referral to get an MRI of her brain and an ultra sound of her carotid artery. (In July of 1999, Mom had a very minor stroke in her carotid artery. She had no lasting side effects.)
Now it’s Wednesday and we haven’t heard a thing about scheduling these tests. Yesterday Mom asked me if we had them scheduled yet. I told her no and she said “Okay, then forget them. I don’t want to have them anymore.”
Then this morning she told me to “forget about them” again. I asked her why she doesn’t want them done. She tearfully told me, “cuz’ I don’t want to know what’s wrong anymore.”
She’s 68 years old and she doesn’t want to know. I can understand her fear and her desire to not have the answers. But I want to know. Is it mini-strokes? Or is her brain atrophied to the point she now has Alzheimer’s? That’s a whole new ballgame. I need to know so I can take care of her to the best of my ability. I want to help her.
Later on in the day mom mentioned the tests again. I told her I hadn’t heard anything yet (I did call the doctor’s office and ask for an update, but no call back as of tonight). With tears running down her cheeks she said, “I don’t want to know what’s wrong. I just have to make it through Dad’s birthday and Christmas. Then I want to go home and I can be done.”
I didn't know what to say. There was a huge lump in my throat, just like there is now as I type. Today is Dad’s birthday. She made it through today.
I long for my fighter mom. The one who fought for the rights of the handicapped students she worked with, the one who held me and helped me heal after being abused by a boyfriend, the one who told me I’m stronger than I think when I was getting divorced, the one who wouldn't let go of Tony when he was in a coma in 2003 when the doctors all said he’d never pull through. She was stronger then. She was a fighter. Now…. Now she’s scared. She doesn't know why she can’t finish a sentence. She can’t figure out what she was looking for or why. She can’t follow a simple television show. She can’t remember how to knit anymore. She wants to be done with it all. And no matter what I do or say, I can’t take the fear from her. She knows what is going to happen to her, she saw it with her own eyes when she nursed her mom through the final years of Alzheimer's. Her fear is real and known. I know what’s coming because we talked about her journey with her grandma. Also, I remember my grandmother lying in the hospital bed in the living room of her home; she was so frail and tiny. I remember her not speaking, not making any sound. That’s mom’s future. I know mom knows what’s coming next and there’s nothing I can do to make it not be that way.
I’m having a difficult time with the conversations about “being done” and “going home.” I don’t know how to answer her, or comfort her without crying myself. I try not to cry in front of her because it confuses her when I do. It’s like she can’t handle the emotions of anyone but herself, they overwhelm her. It breaks my heart to hear her say she wants to be done with it and that she’s tired of being “this” way. She still can’t say dementia most of the time. I do my very best to support her and have talked with her about her final wishes. I know what she does and doesn't want at her memorial and how and where she wants to be buried. I don’t want to be the one planning another funeral. I did it for Tony in June 2007, he died in August 2007 and that was more than I ever wanted or needed to know about making funeral arrangements. I don’t want to do it again. Yet the logical side of me knows that I can’t have what I want. I will be the one taking care of her funeral and my dad’s. That’s a lot of weight on one gal’s shoulders.
I know I will handle all of it with grace and strength when the time does come because my parents raised me well. But I also know on the inside I will be a lost little girl just wanting my momma and daddy to take the pain away. I will find comfort in knowing that Tony will escort her home to Heaven when she does leave this earth. I just don’t want it to happen yet….
Wednesday, December 5, 2012
Ahhhhh… silence. Well sort of silence as I have my ITunes playing as I type. Dad has a dentist appointment and took mom with him. Time for me to put my thoughts to "paper".
Today mom and I ran quite a few errands. We started with the bank, then off to get my van inspected so I can register it in this state, then lunch, then WalMart, next was hair cuts, and finally the grocery store for the last of the Christmas gifts.
I often wonder if our busy days are more harm than help for her. Right off this morning I noticed she was confused. Which is the easiest for me to handle to be honest. I prefer to get all our errands ran on these days because she follows me well. God, that sounds bad. But its true. When she's confused, she sticks close to me and that's good. On her good days, she can wander off and find a perfect stranger to make friends with. And that in itself can lead to confusion for the stranger. Some seem to just accept she's elderly and go with it. Others, like the mom with the new baby, they don't take kindly to her over-attentiveness to the child. So on a day like today I know I won't have to make excuses for her or distract her away and that makes the day better for me. Does that make sense? Her confused days are my good days???? And I guess tomorrow I'll get my answer if we did too much today.
Last night after dad got home, I headed to bed with an upset tummy. I took my laptop and two of my favorite movies and curled up with my pup- Maybelle. The first movie was just enough of a distraction to get my mind off my tummy and my worries… "Seven Brides for Seven Brothers". I'm a sucker for an old school musical. It always makes me forget for awhile.
The second movie still has me drawing parallels to my own life … "Hanging Up". If you haven't seen it, I highly recommend it. It's about a daughter dealing with her elderly, cranky, ill father who is a lot of work, her own upstart business, her child, her husband and oh… her two sisters who count on her to just take care of it (it being anything and everything). I cry every time I watch it. When I first saw it in 2000 I thought, "This is what I feel like. I am the go between for Tony and mom. Mom's a handful and losing her mind and Tony doesn't want to deal with it." Add to that, back then I was a newlywed with two dogs, finishing my college degree, helping my husband with his business, had an older brother (we'll call him PITA) who had nothing to do with the family, and I was doing my best to help my dad with my mom. She was already showing signs back then.
Fast forward to now. My Tony (yeah that's what I call him- he wasn't just my big brother, he was my best friend) has been dead 5 years now, PITA still wants nothing to do with us (another story for another day), my dad is working to keep the bills paid, and I'm dealing with a stubborn mom who's dementia is getting worse by the day. This movie speaks to me. I feel like Eve, the main character, who feels that it wasn't a choice to take on the role of the caregiver/peace keeper. It was a role given to her many years ago.
Now don't get me wrong, I am happy to be doing what I am. I just feel like it wasn't my choice to be the peace keeper or the caregiver. It's always just been that way, as far back as I can remember. My brothers always referred to me as the "Little Mother Hen" when we were growing up and I'm the baby. I mothered the hell out of the two of them. I have always been the one to keep the peace in the family. Whenever Mom would try to make Tony tow her line, I'd be the one to have to calm them down after they fought. Now I didn't fix the fight, I just let them vent to me and then said key words back to them. When Tony and PITA fought, I was the one in the middle- all the way up to the day Tony died. When Mom gets mad at dad, I calm her down. When Dad gets mad at mom, I calm him down. I don't like to fight, never have (not saying I don't, I just feel awful after it so I try to avoid it at all costs!). I've even , looking back- stupidly, stepped between two male idiots who were fighting outside my house back in 1997. I've stepped in front of a man about to hit a woman. I just am who I am. I am the peacekeeper. I am the caregiver. I care…. Sometimes too much.
In the movie, Eve has flashbacks of good times and bad times with her father. I do the same thing. I watch mom with her confused expression and remember when I was little and she was the caregiver to her mom who also had dementia. I vividly can recall her feeding her mom and the feeling of admiration I had for her. She was strong enough to do what her sisters weren't. When it's a silly day, I recall the good. Like the days of grocery shopping and Tony and I throwing stuff over the top of the aisle to each to put in the car. Or the time Tony decided to ride a child's bike in Sam's Club. When it's an angry day, I flash back to times when she told me she hated me. It's hard not to. I am doing my best to file all the good away and just let the bad fade to black. It's a work in progress.
If Tony was still here, maybe things would be a little different. I'd have him to bitch to more. But then again, he's a great listener from Heaven. Maybe he'd come out to visit and I'd get to not worry for more than a few hours a day. Maybe things wouldn't be different. I don't know. All I can do is make sure that I take time for myself when I need to.
So I'm "Hanging Up" for the rest of the night.
Saturday, December 1, 2012
I have started, stopped, re-started, deleted, re-written and completely killed this blog four times or more. I started writing about the new change in mom and then I started thinking about the ways I've been changing. Adapting, I guess, is the best word. I don't want to paint anyone in a bad light. But I promised honesty and I will be honest, even if it makes me cry.
The week started off good but ended a bit rough. Each day is a bit different and that's okay. I can roll with the punches with the best of them. I've worked in the mortgage field, childcare, retail, banking, customer service in a call center .... I know that no two days are ever alike. I've been fired and laid off, had my heart broken by the man I thought would be my forever, lost friends due to differences of opinion or lack of contact, am having my house foreclosed on and lost my best friend/big brother 5 years ago. I've lost myself along the way and I have found the real me in the process. I can handle whatever comes my way, I am a survivor.
On Friday we were putting the Christmas ornaments on the tree. I was handing them over to her and letting her put them where she wanted. We were singing along to Bing Crosby's Christmas CD and reminiscing about the stories behind each ornament. We took a break for lunch and all was well. She was silly and gentle. She was cracking me up. After lunch we finished the tree and I went down to take a nap. When I got up, she asked when we were going to the Post Office, I said "No, not till later." And then it happened... BOOM!
Mom's mood swings can happen like a freak lightening storm on a beautiful summer day. BOOM from silly to bitchy. BOOM from sassy to tears. BOOM from gentle to MEAN. And I don't mean sarcastic mean, I'm talking the kind of mean that slices my defenses. The kind that makes me turn or walk away so she doesn't see me cry. And yes, I know it's the disease ruling her. But let me give you a history lesson....
When I was 16 my mom found a note in my jeans pocket while doing the laundry. This note was one I'd been passing back and forth during my social studies class. For a 16 year old note, it was tame... my friend and I had been rating the attributes of the males in our class. And we rated on a scale of 1 to 10 if we'd sleep with said male. No biggie. Not that uncommon for a girl of 16 to talk about. But holy hell my mom BLEW! She screamed at me for over an hour. In that hour I found out what she thought of me. I will never forget being told that I was a slut (I was a virgin till 18), that I was no better than a common working girl, that I was useless as a woman and that she hated me because she didn't raise me to "rate" men or to be a piece of trash. This wasn't the first time I'd heard that my mom hated me. And it wasn't the last. She has always known what words would draw the most blood and get me to tow her line.
So while the disease can bring her to tears and make her a bitch at the drop of a hat- the mean has always resided in my mom. I have come to understand her childhood better as I've grown up. The rose colored glasses of my childhood have been removed and the grandfather I thought was gentle and loving was not always that way. I have learnt from others what her life really was. She was raised by an alcoholic father and a mom who followed the rules set by her husband. Her anger came from her father. And I used to have no handle on mine, but that’s another blog. I forgave her years ago. Otherwise I wouldn't be able to be on this journey with her. God gave me the fortitude to forgive and I am grateful he did.
That being said, I hate the mean in her. And when she's frustrated or not getting her way, the mean rears its head. Sometimes it's aimed at Dad, but mostly at me. On Friday, that mean came whipping out. She commented on my being overweight, that I can't keep a man and that I'm a rotten daughter because I only want to keep her locked up in the house. She was lashing out at me because I answered her question wrong. And I know her mean streak will get worse as time goes by. I will need to stiffen my heart to it. But right now, it doesn't make it sting any less. Those are the days when I reach out to you- my readers, my supporters- for strength. Because I am not a teenager anymore, and telling her to go fuck herself isn’t the answer. Stomping away in anger or letting my mean streak fly isn’t going to help either.
My relationship with my mom has never been what some mother-daughter relationships are and should be. I never counted my mom as my best friend. I typically didn't confide in her. That may be why at times I get frustrated now, because what I would say to my dad (who I do consider one of my best friends) I can not say to my mom. From my teen years on, I confided in my dad. My mom and I don't have that built in language. Dad and her do... after 44 years (45 on Jan 6, 2013), she can look at him and say one random word and he knows what she's talking about. I know it's why she gets frustrated with me. I don't know her inside and out like he does. I lived three states away for the last 5 years. I talked to her daily, but not about things that mattered. Now, I talk to her daily about things that matter to her. And I'm learning her language.
I moved to Colorado on 9/7. It’s been almost three months. I'm adapting every day. I have learnt that if mom misses General Hospital her day is "off". I have seen that routine is very important. I am changing how I speak to her and with her, about her to dad when she's present- she gets insulted very easily. I am realizing that some days she cannot stand to see me on my phone checking FB or texting. I have learnt how to "hide" it from her on those days so that I can still be there for my loved ones. Other days, she wants to know what my family and friends are saying. She loves hearing about Logan over at the "Crumb Diaries". She laughs at the things "The Apocalyptic Ginger Chronicles" posts.
She's changing every day. And so am I. I'm becoming gentler with her. I am learning to not use the word "NO" in any sentence if I can say "we'll do that later" or "how about we do this" instead. The word "NO" even if it's an innocent "no that doesn't go there" is one of the words that can cause the BOOM to happen. I am developing patience, (it's about time!) with her and myself. Most importantly, I'm adapting to this disease and the journey it's put us on.