Sunday, August 16, 2009

Today is Sunday

Jeff and I went to see the Harry Potter and the Half blood Prince last night. I saw that movie when it first came out. I took Aimee and Alexis to see it. When I saw it last night it was like seeing it for the first time. It really scared me that I didn't remember anything from seeing it the first time! I really know I'm declining now. That was a huge reality check!

Woke up this am around 8ish. Did am adls. Checked on Mom and Dad but they were still sleeping. Good. Took my animals out and then fed them.

Made cafe au lait and went on line to do some Peer Volunteer work. Called Linda. She and Michael are Ok but working hard on getting ready to move down here in October.

Mom and Dad woke up. I went to visit with Mom so Dad could eat his breakfast in peace and read his Sunday morning paper. Later, we went to talk at the Mall. I think this keeps him healthy and also keeps him from going crazy!

Aimee called later. She and Eric were just hanging at home today. They were fine. Turtle too! Aimee is so cute and funny. She makes me laugh!!

Later, I showered/bathed. My friend Gari came to visit. She's a good old friend. We had a nice talk. She went upstairs with me to check out my new apartment. She liked it and said she could probably lay the tile behind the sink! Yea!!

I've been searching on line for a bicycle. Wow, there's so many choices. I think I've narrowed my decision down to 3 bikes: a Schwinn Ladies Delmar Cruiser, a Huffy Girls Cranbrook Cruiser, or a Schwinn Median Adult Tricycle. I'd like a blue bike. Blue is my favorite color! Always has been as far as I can remember. I am searching for a used bike especially if I decide on the tricycle as it is expensive!

Had breakfast for dinner (Eggs and Turkey Bacon). Took my pm meds early. This is going to be a big week. The garage sale is this Saturday. Keith is coming tomorrow to help me get organized!

Sleep Well.

LCC

Saturday pm/Sunday am

Woke up every early this morning around 6am to go to the bathroom. I was, also, having a bag dream (no, don't remember). Got up and did what I had to do then I couldn't go back to sleep. Finally, got out of bed about 6:25a. Let white dog and orange cat out. Then, fed them. Checked on Mom and Dad but they were still sleeping. Good!

Went back home and made some coffee. Yumm! Rolled some cigarettes and turned on the TV. Nothing was on, as usual, so I turned it off. Winston laid on the sofa next to me for me to pet him. So, I did. He LOVES to be petted!

I went on line to do some Peer Volunteer work. Things were kinda slow this am. Not too much happening. Also, decided to start looking for a bicycle and helmet. Gosh, I couldn't believe how many kinds of bikes there are and boy, do they get expensive! Wow, it was really wild!

I've been trying a start eating less. It is very difficult because I still don't get any real satisfaction from my food like I used to. I am constantly eating a little of this or that looking for just that right flavor. Most of the time, it never happens. My food is pretty blah!!!


Now, you have to understand that I'm from New Orleans. Good food is important here. Lots of good spicy dishes from all over the world are here made Louisiana style. There's no food like it anywhere in the world! One of the pleasures of living here is the food. Now, that's gone too! It really sucks!

Spoke with Linda and Aimee. Everything was fine in NJ and Atlanta. Good!

Later, Dad woke up. He didn't look good. I asked him what kind of night he and Mom had and he said terrible. Mom got up to use the BSC, fell (luckily, she wasn't hurt badly), urinated on the carpet, and of course couldn't get up. Dad struggled for a while and finally got her back in bed!!Ahhhhhhhhhhhhh! Did he call me or come get me to help? NO !!! Dad and I have had this discussion over a dozen times. He promises to call me for help and the doesn't!!! It drives me soooooo crazy!! I was so angry and upset, I called Linda to vent!

Later, I tried to read some of this book "Alzheimer's from the inside out" but didn't get very far. It's complicated reading. I just got too frustrated! Later, I took a nap!

Linda and I were talking on the phone today and she had some interesting observations and thoughts after having read some postings on the AD message boards. She goes there to read and hopefully better understand AD/EOAD.
She said that she read the some of us (people with AD/Dementia) give out mixed signals to our Caregivers, families and friends. She say we talked about wanting to be treated as normal (whatever normal is) but that when people spoke too quickly or did things too quickly we got aggravated and wanted them to slow down. So, in fact, we need to be treated differently!! But, we hate the fact that we need to be treated differently. It was a very interesting observation on her part!

I guess we do give mixed signals because OUR signals are mixed up or because we get mixed signals. Also, our world is mixed up and every changing which requires us to continue changing and adapting to just keep up! It's very exhausting!! Others too continue to hide/cover up their problems/disease which makes everything even tougher on everyone! We (people with EOAD/AD/Dementia) need to be more upfront and verbal to our Caregivers about what our needs really are. We can't expect them to be mind readers of readers of our feelings which constantly change!

I wonder if there is a compromise there? Any thoughts, anyone?

Sweet Dreams!

LCC

Thursday, August 13, 2009

I still can't get no satisfaction!

Woke up this am late. Mom's door bell was ringing! Oh my God, did I over sleep? I jumped out of bed and put on a night gown. Gosh, it's 8:00am and I haven't heard anything from Mom!!
I ran to the door and it was G L O R I A!! yes!.. Let her in. Checked on Mom who had been asleep. She was telling me she thought the front door bell was ringing! (it was the back door) but who cares, she was OK and Gloria was here!

Gloria and I got Mom up. Did am ADLS. I gave her AM meds and left her in the good hands of Gloria! Wow, thank goodness I didn't screw up. Mom was OK and Gloria was there! Hoorah!

Went back home. Washed my face and brushed my teeth trying to wake up. Let white dog and orange cat out, then, fed them.

Ahh, time for coffee! Made myself some cafe au lait and went back to check on Mom. She and Gloria were fine. Good, I'll go back home and wake up.

Drank some coffee. Rolled some cigarettes. Yes, I still smoke. Can't seem to give up the nasty habit. But, I bought some good tobacco, some tubes and a rolling machine! Saves me LOTS of money. Cigarettes were getting too damn expensive! Soooo, I roll my own now. Please, don't fuss and lecture. I know I should quit. Dad, Aimee, Eric and Linda have quit! Most of my friends are non smokers but I can't seem to give it up!! I've tried several times unsuccessfully!!!

Ok, back to this am. I think Aimee called. She's doing OK. Dieting and exercising and frustrated but doing OK. Then, I called Linda. I can't remember if I talked with her or Michael but they're OK too. Good! Less to worry about!

Later, I received a phone call from Juliette with Dr. Harch's office. Oh, I had called him about a week ago re: an article I read about treating EOAD with Hyperbaric Oxygen. We spoke. The treatment is $8,000.00 which is NOT covered by insurance. It's $200 per treatment x 40 treatments! I could take one or two tx's per day. She said I could have my life back like before EOAD. I asked how but she really couldn't explain it other than the hyper oxygen could heal my brain. First, I got excited, then I thought to myself, how does oxygen heal or get rid of plaques and tangles (the hallmark of AD)???? I told Juliette I didn't have that kind of money. She told me to get together with a church and do a fund raiser to get the money. I asked if Dr. Harch had published in the New England Journal of Medicine, she said she didn't think so but that the had published a book called "Oxygen Revolution." I told her I'd get the book from the library. She said that the waiting period for an appointment was about 3-4 weeks. I thanked her and told her I'd be in touch!

Then, I called my sister Linda who was VERY excited until I explained everything to her. Oh, yea, she said. I will get Dr. Harch's book. He may really have something new to offer me but I have to check it out and talk with other patients and doctors!

Later, I did AM ADLs and went to my EOAD support group meeting which I really enjoyed! It was small and cozy but informative and fun.

I came home to have a salad. I was planning to go our shopping for a bike and helmet but Dad called and he was running late at work. Gloria had to leave so I stayed with Mom.

Did some Peer Volunteer work on the AD message Boards. Visited with Mom. Then Dad came home.

I checked my e-mails. Fed my animals and took Winston for a walk. Keith called. He wanted to go get a cocktail. I ate dinner and met him for a drink. He was blitzed! We had one drink together and then I came home. Now, I am having some Baileys Irish Cream on the rocks which is very good.

I realized tonight how lonely my life is! As I write this blog, my white dog is laying next to me on the sofa with his butt pressed next to my hip on the sofa sleeping. That's about the most contact I have now! How sad!!

Well, as Tommy used to say, "That's life in the Big Windy City!"

Peace, Hope and Good Sleep to All,

LCC

Tuesday, August 11, 2009

Not a good Tuesday.

I don't know what happened but I woke up this am and was very angry and agitated. God, it's a terrible way to wake up! I slept OK last night. I tried some slow, deep breathing but that did nothing but irritate me. Poor Keith was here and I think he got the brunt of my anger. I was supposed to go do some volunteer work at the AD Assn but I just couldn't. I felt like a would just bite everybody's head off. Elena called and I guess I was OK but not a happy camper.

Spoke briefly with Linda and Aimee. They're OK. Thank goodness!

I did file an amendment to the original law suit I filed against my ex (thanks to Terry and Keith). And I did receive a phone call from Gair (an attorney friend from the past) who said he'd help me if I needed him! That was good news.

I've decided to have a garage/yard sale on Sat. Aug.22nd. Keith and I got my permit today. Keith and I will just haul things down and out and I'll see what I can get!! The upstairs apartment just has too much stuff out to go through the last closet and then the kitchen. Soooooo, I need to get rid of some stuff. There will be some good bargains for a lot of garage sailers!!

Gloria just left for the day and Dad's not home yet. I think he had to go to the pharmacy to pick up some prescription for he and Mom. Mom only ate a banana for lunch. I asked her if she wanted something else. She said no because she's not hungry. Gloria said she and Mom have been walking in the great room and down the hall the last 2 days! Wow, I was really excited! Mom and I had discussed this over the weekend. She was complaining about getting weaker and not being able to walk and that her life sucked. I reiterated that "if you don't use it you loose it." She kinda got mad but then agreed. She said she would walk with Gloria (not me). I said, "Great." Apparently, she is doing what she said!

White dog is here with me sleeping on the loveseat! Simon is outside. I do miss my little yorkie named Rudy (he's with my ex).

That's all the news for now.

Peace and Hope,

LCC

Sunday, August 9, 2009

Days of disappointments

Hi to All.
Yesterday, Saturday, I was very excited and waited to see Alexis. I hadn't seen her in a few weeks and I was lonesome for her. After almost a full day of waiting, she called and canceled. She said she had a bad stye on her eye lid that was painful. I have to say I don't think she was telling me the truth. I think she was either tired or got a better offer from her family or friends. Ah, well, such is the life of a 13 year old girl!! It just makes me sad. I do miss her very much. I talk to her a lot but I feel she's slipping away from me. (maybe it's for the best but it makes my heart so full and heavy and sad). My eyes fill with tears and my heart sinks at the thought of loosing her. She's like the 2nd daughter I had always wished for. My husband, Tommy, died after Aimee was born but before we could have another child. Deep in my heart I had always wished for 2 girls. Like my sister and me. It was great having a sister growing up! I had hoped Aimee wouldn't grow up alone. Well, Marty (my step son) was around but he was so much older than Aimee. What's that old saying? "You can't cry over spilled milk!" I just can't help my tears.

I,also, think it is because I am missing Aimee so much! She lives so far away and I don't get to see her that often. Perhaps Alexis has been a kind of substitute for Aimee??

Ok, I can only cry so much. Then today, Keith called this AM and said he had to work but that he would come this evening to help me work on the apartment. Well, when he got off this afternoon, he canceled too!! He chose alcohol over me, his friend! Golly, is it me?? I wonder. These days I wonder a lot!

My SIL Terry met me at the library today. We looked up "the Exceptions" that my ex filed to counter the lawsuit I filed against him. Seems like Terry found a way for me to show "Cause of Action" (I think that's what she told me). So, tomorrow, I will go to the courthouse to file an amendment to my law suit. Wish me luck!

Mom and Dad are doing OK. I cooked some pork ribs last night for dinner. I had cooked them for Alexis (she loves ribs) but there was plenty for Mom and Dad. They seemed to enjoy them. Also, did some mac & cheese and a salad. And brownies, I made brownies because Alexis LOVES brownies! Guess I'll just have to eat them myself! lol. (Guess I'll just get fatter and fatter!) YUK!


Mom seems to be getting weaker. She is having less urinary accidents lately but is weaker and I'm not sure why. I've studied her meds and they seem OK. I think it has to do with the fact that Mom doesn't do anything!! We get her up in the morning. She does am ADLS with assistance. We wheel her to her recliner and there she stays until she goes to bed!! Rarely does she walk anywhere in the house. She really doesn't do anything! Oh, she watches tv or reads a magazine but physically she does NOTHING!!! She does go to get her hair done once a week ( I mean Dad or I take her, mostly Dad). And, if she has a doctor's appointment or tests, we take her there too. But, that's it! She won't go anywhere else! She sits/reclines in that chair day after day, hour by hour! It's very sad to watch! I gave up trying to get her to walk or exercise of anything like that. It made her mad at me and she called me Hitler and stuff like that.

Well, that what's happening. Some pretty depressing stuff? huh? Yeah, sometimes my life is pretty depressing.

I did speak with Linda and Aimee today so that was good.

Well, hell, I'm tired as usual. I did take my PM meds so did Winston! So, me, white dog and orange cat will say goodnight.

Oh, I ordered a book from the library called "Alzheimer's from the Inside Out" by Richard Taylor and I picked it up today. Richard has EOAD like me. I don't know if I'll be able to read it or not. I really have lots of problems reading books. Lately, I've been unsuccessful. But, this book didn't come on tape or CD and I heard it was really good. So, I will attempt to start reading this book tomorrow when I am fresh. Keep your fingers crossed! I really want to read this book! I hope I don't crash and burn!

Peace, Hope and good sleep,

LCC

Friday, August 7, 2009

A fairly good Friday

Hi. Woke up around 7:45am. Mom was still sleeping. Dad had eaten and was in the bathroom. Good. Time to take care of white dog and orange cat and make some coffee!

Dad came to let me know he was going to the post office then to walk in the mall. He said Mom had a bad night. She was up several times. The last time Dad found her on the floor!! Luckily, she didn't seem to be hurt. She kinda slid off the bed onto the carpet (thank God). But, did Dad call me or come and get me????? NO !!!!! Ahhhhhhh!!!
I can't seem to get him to understand to call me! It is so frustrating!!! He struggled for quite some time to get Mom up off the floor!! I just don't know what to do anymore. I feel like I'm talking to the wall!! Sometimes I feel like a want to slap him and say "Hey, you're an intelligent man, use your head!!!"

Well, of course I was upset when Dad told me what had happened. That slow burn of anger that I live with was starting to surface. I rushed Dad off to walk so that I didn't blast him out!! I almost bit my tongue off but at least I had a few moments of anger control. (It's getting harder and harder. Sometimes I don't have any control).

Mom continued sleeping like a baby so I grabbed another cup of cafe au lait! Even watched a little news on TV. Just as Gloria arrived, Mom rang her bell. Great timing! We got Mom up. Am Adls done. Meds given! It's a good start. I had some things to do at home so I kissed Mom and left!

Checked my e-mails. Did some Peer Volunteer work. Then, went to bathe/shower and get dressed and ready. I had plans to have lunch with an old friend. She & I had never been close but had always gotten along in a group.

Grace and I met at Houston's for lunch. I couldn't remember how many years it had been since I had seen her. (We attended the same high school). I had seen her a few times since high school. Lunch was fun. We had a salmon appetizer (delicious), iced tea (the house wine of the south), I had a burger and she had a steak salad. It was all very good. I can't say great because my taste buds are so off the very few things taste GREAT!

By the time I got home, Mom and Dad were home. Dad had taken Mom to get her hair done and then he had gone to the grocery. They were both doing fine.
Went back on line to do some more Peer Volunteer Work. Tried watching a little TV but it just aggravated me so I turned it off. Played my Nintendo (Brain Age games).

Dad had bought fried catfish for dinner. Great. Nice and easy!

Fed my animals then walked Winston. Man, was it hot! Heat index 104 and this was at 7pm!! Wow, I felt like I was melting like the wicked witch of the west!! Winston walked a bit but was glad to come back into the a/c!!

Watched "Gilda" on TCM. It's a great movie! Did more Peer Volunteer work. Now here I am again. I'm tired. I'm going to bed. sleep tight all.

Oh, Alexis is coming tomorrow afternoon! I'm so excited. I haven't seen her in a few weeks and I miss her. She's planning to spend the night! A girl's night together, how wonderful!

Peace and Hope,

LCC

Thursday, August 6, 2009

An even better day!

Hi to All. I did sleep better last night with the increased dose of Seroquel. I have decided to stay at this dose for the next few days to see what happens. Wish me luck!

Today has been a better day! Woke up, did am adls, Mom was still sleeping. Good.
This gives me a chance to get my head on straight to start the day. Had a headache with some flashes. (Oh no. hope it's not a migraine). Made coffee and took ibuprofen. Took Winston and Simon out then fed them breakfast. Some throbbing with the headache but no nausea. Good!

Checked on Mom again. She was still sleeping. I guess the trip to get her nails done yesterday wore her out! (but I think she really enjoyed it!)

Drank my cafe au lait and looked at my schedule for today. Pretty busy. Lots happening today. Just as Mom was waking up Gloria came in! Hooray! Gloria and I got Mom up, did am adls, and wheeled her to her recliner. I gave Mom her morning meds, kissed her good-bye and went to start my day, after all Gloria was there and she was safe!

Had a Peer Volunteer phone meeting @ 10am. Enjoyed that. We had lots to talk about. The AD Message Boards are growing and we are getting ready to recruit some more Peer Volunteers. Lots going on. We had a good meeting.

Went to bath/shower. Then went to Patty @ Pachuco to get a haircut. Wow, did I need one! It was fun and feels great. Then, went to the grocery. Man, was it hot!! I was schlepping groceries to and from the car and then into the house. Wow, I was sweating like a pig!! Oink Oink! lol.

When I was finished I had to get some cold water and get sit on the sofa in the a/c for a few minutes to cool down. Of course, white dog was running around like a maniac trying to get my attention!! I told him it was too hot to play right now.

Put the groceries away and it was time to leave again. I had a manicure/pedicure appointment! Wow, what a treat! Cindy did a good job and I felt more like me!

Came home. Went to check on Mom to make sure Dad made it home on time. They were both fine. Dad was on the phone talking with my sister Linda. Apparently, Linda told Dad about all the problems I have been having lately. (I didn't share them with Mom & Dad because it just upsets them & makes the worry). Linda even took exerpts from my blog and sent them to my Dad! At first, I was angry with Linda. Dad seemed pretty upset. But then slowly he started talking about hiring Gloria to come more hours to give he & I more help!! Yea!!!!! That's just what we both need!! yes! Ok, Linda, I forgive you and thanks!

Sooooooooo, that was my day today. Better, don't you agree??? My low burn anger is still there but it is not so significant (I think). I will continue my meds, try to get some good sleep and hope that each day will bet better!!

Good night all. Hope y'all sleep well.

Peace and Hope.

LCC