The big vacation is right around the corner! We have been getting ready for days now. The last time I have been on a tropical beach was back in 2000. This was my Junior year in college and I went down to see my sister in Guadalajara, Mexico. This was before Mom fell and before Nancy got really sick.Nancy loves to sing. So, do I. She listens to her headphones and constantly belts out her favorite tunes at the top of her lungs. 
So, for the vacation I am mixing songs on CDs about the major towns we will be visiting. On the way to Memphis, I have Elvis, blues and country tunes. Then on the way to New Orleans I have Cajun and Dixieland Jazz. For the beach I have Island and Beachy songs. Then for the Smokies, I have a compellation of Blue Grass. We will have a sound track for our trip. It will be musical journey.
We also plan on tasting foods famous in the regions we are visiting. Nancy loves to eat. Everything is her favorite! Me, too. 
When it’s lunch time for me, but Mom and Nancy have already eaten; it’s lunchtime again for Nancy. If anyone eats anything Nancy has to eat, also. So, this is right up Nancy's Alley! Barbeque in Memphis, Beignet’s and Gumbo in New Orleans, Shrimp in Florida, and down home southern cooking in Gatlinburg.
Today,we are having a toenail painting party. We've invited our friends and family (girls, only! sorry boys!) over to get our tootsies beach ready for the vacation. Chick flicks, pizza, and toenail polish will make a great combination for fun. This was all Karen's idea! It was probably a ploy to see that adorable little girl before we leave. That's our great-niece, Valerie. It will be a fun night. Right now, Nancy is packing. Her room is a jumbled mess of flip flops, sunscreen, and beach ware.
This weekend, it was cool enough outside to take the dog out and play Frisbee. We went to an enormous park and took a gigantic Frisbee. It was bigger than Molly and she looked so funny running with it in her mouth. That’s her favorite game, fetch. My niece, Sarah, came over in her brand new Jeep and picked up Nancy and me. She took us to Sonic and bought everyone huge route 44 drinks. We brought one home for Mom and she spilled it all over the end table, couch, carpet and herself. We got it all cleaned up, but the rest of the day Nancy would say to mom, “Don’t spill.” It didn’t matter what she had in her hands Nancy would tell her not to spill again. She also said, “Gee, Mom, how’d you manage that!”
We are going on vacation at the end of this week. The excitement at our house is palatable. We are getting all the last minute things ready. Although, Nancy was ready to pack a month ago! She can’t wait to see Graceland. She saw it back when she was 16 years old. The other thing Nancy keeps talking about is buying cards.
Nancy loves to give cards. Her favorite thing to do is buying greeting cards and sending them out to everyone. I mean everyone, too. When she meets you for the 1st time she will ask for your address so she can send you a Christmas, Halloween, or Valentine card. Just insert the closest holiday. We have a close family friend who every week sends Nancy a greeting card. Nancy looks forward to getting these every week. It’s truly amazing how she faithfully sends a card to Nancy. It is such a blessing.
Nancy is on oxygen. The lupus attacked her lungs. She only wears it at night and whenever needed, which is usually when we are doing any kind of chore, whether easy or strenuous. She is scared of storms. Somehow, she got it in her head that the concentrator will blow up during a thunderstorm. It has been stormy off and on today. That all said, it’s been a peaceful evening. The computer and Internet haven’t been working properly, though. While I’m at work, this connects mom to other people. She used to get out and about more, but since she fell she doesn’t get around as well.
Teaching her to blog has helped her so much. One of Mom’s favorite activities is to talk. She loves to chat, tell stories, and be connected with others. When she was more mobile she would stop and chat with everyone. Not having this privilege has been very difficult and Blogging has opened up a whole new world for her. Talking on the telephone can be challenging at our house.
When I was a kid, Nancy and I shared a room together. If we had already been put to bed and the phone rang, we would sit up, look at one another and run into the kitchen to find out who was on the phone. It was a race to see who could find out first.
I was about ten years old when my mom and my sister, Karen, left me and Nancy at home for about an hour. It usually went well. This time, though, I was left instructions to keep Nancy from calling people on the phone. I accepted this responsibility with all the annoying gusto of a ten year old. Sure enough, a few minutes went by and Nancy had made up her mind to use the phone. I, of course, wouldn’t let her. She got frustrated and whacked me upside the head with the telephone.
Nancy loves the telephone! She still has a childlike faith that every call is for her. She still runs to the phone when it rings. I’ve long since outgrown that. She will sit in the room with you and tell you things to tell the person on the other end of the line. No matter how much you tell her to stop or threaten to revoke privileges she will keep going. She has the persistence of a gnat.When you hand her the phone and say, "Here you tell them," she suddenly gets shy. If you lose your temper and yell she will get her feelings hurt, sulk, and make life miserable for everyone. Eventually, you feel like a heel, even though you know it wasn’t your fault.
Today is mom’s birthday. I’ve already got the lawn mowed and I have a bunch of errands to run. I must remember to buy eggs or mom won’t have much of a birthday cake. The first thing Nancy said when she woke up this morning was, “What are we having.” She really does love her food. So, far the bad night has been forgotten. We have friends and family coming over for mom’s birthday. I will have to, also, remember something to clean the carpet with. I don’t want everyone thinking they’ve come to an old folks home.
What’s hard is that every time I go to the store Nancy gives us a list of things she wants. She doesn’t have much going on and a grocery trip is very big in her world. She will continue to verbally add things to the list and remind you countless times so you’ll not forget. So, it gets pretty silly around here. Mom and I whispering that I need to go to the store and sneaking me money and a grocery list.
We are always getting her the stuff she needs, like her meds. We are always buying her treats, too. But, when we bring her favorites home like cans of chicken noodle soup; she’ll say, Where’s my tea?” We hand her, her Kleenex, soup, chewing gum and point out that she has her own 12 pack of diet soda. “But where’s my tea?” “Dang it! I forgot her stupid tea,” I say to myself. Her day is ruined. I didn’t remember. So, we will hear about her tea for the entire day and possibly the entire week. So today, hopefully, we don’t go through this scenario.
Everything went well until the company went home. Then, she discovered she lost her bag of pens. In her mind, someone has come in and stole them. The reality is that she has misplaced them somewhere. This is one of her biggest fears. There are imaginary evil villains, but very real to her, who sneak into our house and mess with her stuff. Never mind the nice things in the house like the computer or television. These people are only after her pens, pictures, or stuffed animals. Only the things precious to her.
Mom found her pens. They were in her purse. Nancy carries this purse everywhere. It is jammed packed full of her most important possessions. It would probably look like junk to most people. She loses everything in this disorganized mish-mash of stuff.
This evening Nancy wet herself. I got home from work, fixed dinner, worked-out, and chatted with mom for a bit. I was going to use the computer, but mom wanted to finish blogging. So, I told her I was going to go get ready for bed. As soon as I stripped down and soaped up my face Nancy needed the bathroom. I should have just given it to her. The thing is, this is a common occurrence at my house.
Nancy is my mentally handicapped sister. She is mentally retarded, paranoid schizophrenic, and has systemic lupus eremotsis. I’m a caregiver. My mother has all her wits about her, but a few years ago she fell, crushed her knee, and hurt her back. She is nearly 70 and has diabetes and high blood pressure. Because of this, she doesn’t heal as well. So, I help her with the things she is unable to do anymore.
Back to this evening, I was washing my face when she whipped the door open and smacked my elbow with the door. This irritated me to no end and I told her to go on. “But I have to pee,” she said. “Every time, I come into the bathroom you want in here, too! Now, go on. When I’m finished, you can have it,” I said so sweetly! Yeah, right. Honestly, she does wait until she hears me go into the bathroom and then, never fails, wails, “I need the bathroom!” So, I never really know if she is crying wolf or if she needs it. Tonight, she needed it.
I'm not a perfect person. I'm going to share with you how I feel and how I react to many situations. Sometimes, I'll fall out of grace and other times I'll handle things gracefully. I'm not holding anything back. This is my online journal. Perhaps, it will help me understand myself better or maybe it just might help other caregivers out there in blogdom.
Have you ever said something you wish you could take back? But you can’t. It’s been said and has tarnished the ears of the listener. I have. I still remember standing in the kitchen. I can almost taste the rage on my lips, but I cannot remember the cause of it. Now, I remember the who, but not the cause. I turned my head towards Nancy and said, “I hate you.”
The thing is, I don’t. I do not hate Nancy. I love her. She is my big sister. She was sixteen years old when I was born. We have so much history together. I shared a room with her until I was eleven years old. Because of her I love Elvis, purple, and the holidays. We are friends. It’s really cool when she has her lucid moments.
When I told her I hated her things changed. She’s not together enough to understand. That’s it right there! She doesn’t understand. Everything is all muddled up in her brain. She cannot convey things with the ease I take for granted. She also gets stuck on one thing and will repeatedly ask you the same thing as if she hasn’t heard the answer. We also live way ahead of time. She keeps track by holidays, for example as soon as the last firework goes off on the 4th of July, we talk about Halloween. Nancy never forgets.
So, back to that awful hate word. Even though it’s been a few years since I said that to her, have apologized, and told her I loved her many times over; she will still bring up that time I told her I hate her.
This is a blog about my life. I'm a caregiver. I'm 28 years old and I started helping when my mom fell and my sister, Nancy, was diagnosed with systemic lupus erythematosus . That was about five years ago. This blog is honest and shows what my life is like as a caregiver.
My Mother, does help as much as she can. She helps do the dishes. She drags a chair over to the sink and washes dishes until her back and knee ache so bad she must sit down. She rests and then goes right back at those dishes! She is a sweetheart and a blessing. I love her so much.
My oldest sister is a missionary in Mexico. She and her husband and three sons have a church in Guadalajara, Mexico. They do prison ministries, women and men ministries and so much more that I can't remember. I am very proud of them.
My Brother is a Baptist pastor. He and his wife lead and minister at the church. Both of their children are in college and I am very proud of them as well.
Nancy is mentally retarded, suffers from lupus enhanced paranoia schizophrenia, and has systemic lupus erythematosus .
My sister Karen lives nearby and helps financially. She is a senior multimedia designer and a restaurant owner. She is strong and tender-hearted and lends a hand frequently.
My oldest siblings help out, too. But they live far away from us. I love my family. We are very closeknit and it is a joy and a blessing to have such a large family. I am the youngest of five children. All of us try to help out as much as possible .
