Mixed Emotions

Hi,

I'm sorry I haven't written in a while but things have been very hectic. Aimee, Eric and Turtle came in the Friday before Thanksgiving. Her baby shower was that Sunday. It was lovely!

The family got to visit and it was great. Mom was unable to attend the baby shower so the next day we unloaded the van so Aimee could show Mom all her stuff. They had a great time together.

On Tuesday, Aimee, Eric, Linda and I went to see the new Harry Potter movie Deathly Hallows which was really good.

Unfortunately on Thanksgiving Morning, Mom had a stoke. We called the Home Health nurse and she came out and verified it. Poor Mom, her right side was very weak and her speech was slurred and she could barely swallow. I called in Hospice.

The hospice doctor and nurse were
wonderful and helpful. Luckily, I had the hospice meds I needed to keep Mom comfortable. My Mom died peacefully late Saturday night (although the official day is Sunday) with all of us at her bedside. She was in her own home with her cat Jonsey sleeping with her.

I am very sad. I miss my Mom but I'm not sorry she's gone because I knew she didn't want to live that way. She had a Living Will that stated her wishes. We all knew her wishes and she didn't want any part of that kind of life.

Seems like things are a big blur! I think I must be in some kind of shock because I haven't shed a tear yet. We've been so busy making funeral arrangements, phone calls to family and friends. It's been difficult.

My poor Dad is having such a hard time. He and Mom had been married 61 years! He's feeling pretty lost.

Well, I'm VERY tired and I must sleep now.

Please pray for Mom, me and my family.

Thanks.

Peace and Hope,

LCC

November 1st

Hi,

I'm back from Aimee & Eric's. Had a wonderful time. Tired but doing ok.

I am helping Aimee's friend Courtney with Aimee's Baby coming this month. My sister is helping me too. It's fun to plan a shower.

I'm sitting here on Mom's sofa. White dog and orange cat are with me. Mom's sleeping in her recliner. Dad's at the grocery and Linda is out shopping. This is life.

Wow, how has it come to this?? I was an RN with a good job and lots of things happening in my life. Now, it's take one day at a time. I never know what is going to happen next. I have an appointment to go back to the research doctor later this week or next.

The one good thing that is happening is that I'm going to be a grandmother sometime in late January!! Hip hip hooray!

I'm very proud of Aimee. She is doing well. She's going to be a great Mom!

Peace and Hope,

LCC

Not crazy yet

Hi to All,

Sorry it's been so long since I've posted. I'm still declining and I'm trying to figure out what if anything I can do about it. Or, do I just need to accept it?

I am forgetting more and more things. I am placing things in strange places, having more trouble handling money, my visual/spatial thing is worsening and I still need a lot of sleep including naps!

I participated in our Memory Walk this past Saturday along with my Dad and my BIL. It was OK but was more confusing and I didn't recognize as many people there.

White dog and orange cat are doing well.

I am going to visit my daughter and SIL in Atlanta this weekend and I can't wait! I'm so excited! I will spend a week with them. Aimee is due the end of January! yes, I can't wait!

My wonderful sister drove me all over today running errands and taking me to therapy. Thanks, Lin!

Peace and Hope to All,

LCC

Hanging in there

Hi to Everyone,

These last few weeks have been difficult. I'm a bit more confused and very tired. Need a nap almost every day. Still having problems with balance and walking. I think I might call my doctor about getting some PT for my balance problems. If that works, then I can start exercising again.

Mom was doing better for about a month then she had back to back syncopal episodes last weekend falling and hitting her head both times. It's a miracle but she didn't break anything!!

I think I need another nap now.

Peace and Hope,

LCC

Drug Study appointment today

Hi to All,

Linda drove me to my drug study appointment this am. First, I forget to bring in the medication I had been taking. Then, I saw the drug study nurse Kellie. She unblinded the study and told me I have been on the real drug from the beginning and NOT a placebo. I kinda figured that out earlier because I had some side effects from the drug. My hair had lightened. My eyebrows, eyelashes had become so blond it was like they were invisible.

I am starting to see new growth in my eyebrows and it is now brown and not blond. So I guess the study meds are coming out of my system. I am extremely tired, my balance is off, I can't seem to focus as well as before, and my fine motor tremors are continuing to get worse.

Lilly decided to take the drug off the market because of safety problems. Some patients were getting skin cancer, while others were declining at a very fast rate.

I hope this decline is temporary. I have a grand child coming in January!!

Peace and Hope to All,

LCC

Am I changing? declining?

Hi to all,

I told you I was told to stop my Lilly study medication because it was making people worse. That was on August 19th. It's now Aug.30th (I think) and I believe I am now declining. The last few days have been hellish. Extremely tired, increased problems with focus, increased problems with balance, increased problems with Short Term Memory, feel like I'm in a fog, not fully awake. My eyes are more blurred and my balance is way off. I feel like I could go to sleep at the drop of a hat.

I need to call my drug study doctor to see what is going on. I'm suddenly a little afraid.

Peace and Hope,

LCC

No, I'm not dead yet!

Hi to everyone,

I am so sorry it has taken me this long to write again. Everything has been kinda crazy!

I have WONDERFUL news! I'm going to be a grandmother! Yes, Aimee is pregnant and finally feeling alive again. I spent 2 glorious weeks with her, Eric and Turtle. I did some cooking for her. (Some good some not so good). We were able to go shopping. I bought her several cute maternity outfits and some undergarments! It made me soooooo happy! We bought a few little baby things and books. We were, also, able to look and check out all the new baby furniture, car seats, strollers, high chairs, swings wow!! I didn't realize how much new stuff was out there. Aimee due date is mid to late January.

Mom and Dad are still hanging in there. Not much has changed. Linda and Michael are getting ready to celebrate their 10th wedding anniversary tomorrow!

I've been home now for about a week. Trying to catch up on my Peer Volunteer work, attend online meetings and keep up my apartment.

White dog is fine. He survived the long stay at the vets. He is very itchy again. He's had a medicated bath and his advantix. I think I may need to take him back for another allergy shot! Ahhhh, It's always something. Yellow cat is doing well and happy to have his Mom home.

I went to see my therapist today. She and I were talking about how I am doing and all I've been through so far. Today I realized how much she has really helped me turn this disease around and not to be such a victim!!

She's helped me along with my family and friends how to accept this new me without disgust and anger, feeling a little better about myself. This is a great blessing because for a time I felt dark, depressed and angry!!! And, I was starting to feel sorry for myself which is the worst thing I could have done. A lot of that is behind me. Although, I still have good days and bad days.

Bad news. I was on that Lilly drug study that was recalled because it caused many people in the study to worsen!! So, now I'm off that drug study and looking to find another. I was kind of upset at first but I just have to move on.

Other good news: The Nat'l Alzheimer's Assn was here on Monday on Behalf of Maria Shriver who is writing a book on Woman fighting Alzheimer's. Mom and I participated. They took pictures and we told our stories which is supposed to be part of Maria's book. I'm always happy to get the word out about EOAD/YOAD/AD!!!!

I'm sorry I'm getting so tired. I need to stop now. My brain is really slowing down.

Thank you all for caring and reading my blog. I intend to give this much more attention.


Comments are always welcomed.

Peace and Hope,

LCC

Today is Linda's Birthday!

Hi to All,

Things have been rather quiet around here lately. I just wanted everyone to know that today is my sister Linda's 60th birthday!! Yea Yea, Happy Birthday, Linda!

I am excited about Linda's Birthday but also that I am going to see Aimee & Eric on Aug. 3rd!! I will spend two weeks with them. I just can't wait! To be able to spent time with them is priceless. My granddog Turtle too!

I am trying to take a day at a time. Some are good others are not. But, I think overall that I am still hanging in there.

Linda was so wonderful yesterday. I wanted to go to Walmart to see Drew Brees and get the books I purchased autographed. Linda brought me there early enough that I got my books signed and I was extremely happy to meet Drew. He was quite nice and very sweet!!! Go Saints!!

White dog and orange cat are doing fine. white dog got an allergy shot from the vet and was clipped. He's doing much better now.

I'm very lucky to have a wonderful sister! Happy Birthday Big Sis!

Peace and Hope,

Sunday sweet Sunday!

Hi to all,

This week went by like a blur. I can't remember much to tell y'all what happened.

Mom is still hanging in there. Linda and Michael are doing well. Dad is kinda distant these days. Aimee, Eric and Turtle are fine.

My poor Winston is fighting itching and allergies. I brought him back to the vet for an allergy shot and to be groomed because he was so miserable. He's still pretty itchy but I am hoping it will settle down now.

Simon is ok still catting around. I had to make him come inside last night at about 11:30pm!

I still have a secret. I'll tell you when I can.

Hope everyone is well.

Peace and Hope,

LCC

July is so hot and humid

Hi to all,

Sorry it's been a while since I've posted. Things have been pretty hectic here. We've had lots of company in the last few weeks. And, it's been very HOT! ugh!

Mom seems to be hanging in there. Linda and Michael are doing fine. A little stressed but fine. Our wonderful sitter Gloria is still an angel.

As for me, I am still participating in my drug study ( thanks to Linda being my driver). Loud noises, loud tv's and such still drive me crazy! I usually have to leave. My emotions are up and down and all around. I have a secret but I can't share it with y'all now. I will when I can.

I'm still dieting but I am not as active because it's soooooo hot and humid. I've lost a few pounds so that makes me feel a little better.

I do have some good news. I did receive a money order in the mail from my EX for $100. That's the first payment on the money he owes me. Funny thing is that it wasn't his handwriting, it was his wife's!! I don't care where the money comes from as long as he pays me back what he owes me!!!!!

Take care.

A new day

Hi to all,

Sorry I haven't posted in a while. Sometimes, I think that I can't really think anymore. Then other days are better.

I went to my clinical drug trial the other day with my sister and they seem to think I am holding my own. I think that is true but sometimes I really think I'm living in the twilight zone.

Sorry, I've got to stop. Mom's hospice nurse is here.

Peace and Hope,

LCC

Sunday sweet Sunday!

Hi to All,

Dad, Linda, Michael and I went to a play today called Avenue Q. Wonderful Gloria came to stay with Mom.

I have to wear earplugs at the play because it it too loud for me. This play was strange and except for a few bright moments I didn't understand the purpose of this play. The voices were great for singing but besides that...I didn't get it.

We came home after the play. Later Michael went to pick-up some take out food. We ate dinner. After that I went to their house to watch "True Blood" and "Treme" because I don't get HBO. I'll tell you I was pretty lost watching both of them. I'm not sure what the problem is. Perhaps my input is damaged?? Or too slow to keep up?? Or my concentration is gone? I don't know but I sure had a difficult day!!

It makes me wonder what else is going on inside this brain of mine?? What else am I missing? I know I forget a lot of stuff but I'm not prepared to give up going to the theatre or watching some TV!! Sometimes I feel like I'm outside my body looking in or just simply loosing my mind!!!!

Thanks for listening.

Peace and Hope,

Getting to the Nitty Gritty

Hi to All,

Lately I have been noticing things about myself that tell me that I am declining. I am forgetting more and more things. My visual/spatial thing is getting worse. And I am definitely getting more confused especially when I go out. Noises bother me a lot!

I guess I am lucky to be aware enough to know I'm declining but it's also very frightening. I had an appointment this week with my neurologist and she agreed I was declining and suggested I decrease the antidepressant I take at bedtime. I am hesitant to do so because when I don't sleep enough I starting declining rapidly. I am thinking about what to do.

Thank goodness for my wonderful Sister who helps me get around and stay on top of things. I don't know what I would do without her.

I know, sometimes, I'm a pain in the butt, because I ask the same question many times and often forget the answer.

I am really getting scared about this decline. It makes me feel insecure about my future. I've always prided myself on being able to take care of myself.

I wish I could take you all inside my brain and body so I could explain what is going on and how I feel. It all foreign!! Some Long term memories are even gone!

I sometimes feel like an alien has entered my brain and body and has altered all my senses. Sometimes I feel my hands and they don't feel like mine or even look like mine. I feel somehow this alien is detaching me from my mind and body and sucking all the life out of me.

Alzheimer's is such a strange disease.

Peace and Hope,

LCC

June 2nd The opening day of Hurricane season

Hi to all,

Just wanted to officially welcome all of you to our New Hurricane Season. We hope and pray that the oil in the Gulf of Mexico will stop spewing and that Hurricane season will be light without a lot a major storms. Things are NOT going well here. We need all the help we can get!!

I've been very tired again recently. I hope this too will pass.

Take Care.

Peace and Hope,

LCC

Memorial Day 2010

Hi to all,

Thank you for all you wonderful thoughts, prayers and comments. I'm sorry it's been so long since I've written.

I had a wonderful visit with Aimee and Eric & Turtle! They are all doing fine. Eric had to go on a business trip while I was there so Aimee & I got three days alone to do exactly what WE wanted to do. It was great. We watched all the Harry Potter dvd's, we went shopping and went to dinner a couple of nights eating sushi and then Mexican.

We had some time alone to just talk and visit and it was wonderful. Please, don't misunderstand, I love Eric, but it was nice to have some alone time with my daughter!

Apparently, while I was gone things went well with Mom until the day we returned. She began having syncopal (fainting) episodes again. She had several in a row. Became very weak and disoriented. It's very sad. My Mom has become an invalid. Linda finally found a podiatrist to come to the house and cut Mom's toe nails. She has 2 ingrown. At least now she has relief!

My friends Lisa and Rich's daughter Samantha graduated from High School on Friday. They had a party for her yesterday (Sunday). It was great to get out of the house and see all of them. Of course, Dad stayed with Mom so they were unable to come.

Orange cat and White dog are doing fine as are Linda & Michael's 4 cats. Mom's Jonsey (cat) is still hanging in there too.

I'm so blessed to have Linda & Michael here. I couldn't do it without them. And all of you!

Thank you All for reading, sharing and caring.

Peace and Hope,

LCC

What's happening?

Hi,

It's really strange when my doctor's office calls me this morning to remind me of an appointment I have with my pcp tomorrow when I have no memory at all about this. Nothing written down. I asked Donna about this appointment and she told me they had called me last month to set this up. Huh??? I don't remember a thing. And, why didn't I write anything down??????????? I usually do.

It manages to make me feel a little paranoid. I used to wonder if my EX would set me up because I didn't remember many conversations and stuff. Sometimes, I try to laugh it off saying I'm just goofy or forgetful. Other times it scares me to death!! I wonder how many other things I have forgotten????

I can see new movies several times because I don't remember them and don't remember the endings. Good or Very Sad?????

Someone can call me on the phone. I talk with him/her then I forget who I talked with and what was said. At times, it's very frustrating!!!!!

I can't write down everything!!!!! It will drive me mad!

I'm so tired again. I must sleep often again.

Now, I have a sore throat and a cough! What a drag! And I am going to visit Aimee, Eric & Turtle next week. I hope I don't get sick. Pray for me, please.
It's getting harder and harder to deal with all this.

Peace and Hope,

LCC

Thoughts from the roller coaster

Hi to All,

Sorry it's been a while since I have written. I'm finding it a little more difficult to put my words together to make sentences and make sense.

Updates: Mom seems to be doing better. No syncopal episodes since I last wrote. She's actually taking a few steps with assistance and doing fairly well. (of course, we are all waiting for the bottom to fall out again because it always does.)

Aimee & Eric & Turtle are doing well. I plan to visit them this month! I can't wait! I'm so excited!!!!

Dad is hanging in there. He's been kinda depressed lately. I'm trying to get him to increase his medication which should help. He hates taking meds but I will still try to encourage him to do so.

Linda & Michael & the 4 cats are doing well. Looks like they may have sold their house in New Jersey. A few more details to iron out but so far so good. Michael is excited but Linda has mixed feelings. She loves their house in NJ! I feel badly for her but it needs to be done. Sorry, Lin.

As for me, well, I celebrated my 56th birthday with my family and friends. My friend Julie took me to dinner and we ate boiled crayfish and crabs (yum). Then, my friend Lisa took me to lunch on the lakefront. I ate a shrimp salad. Then, Linda and Michael took me for a Mexican dinner at Casa Garcia!! It was all wonderful!!!

To add to that the New Orleans Jazz & Heritage Festival was, also, going on. My friends Kendal and Dennis and their adult children took me to Jazz Fest several times. It was great! We saw Simon & Garfunkle, Earth, Wind and Fire and unfortunately I can't remember all the other bands we saw. We had a great time. Met up with a lot of other old friends and had some great fun!!

Now, I'm a bit tired. Have gone back on my diet. And, kinda settling in back here in my little apartment.

Hope everyone out there is doing well.

Thanks for sharing and caring!

Peace and Hope,

LCC

Monday's child has far to go?

Hi,

Sorry it's been a while since I've posted.

Poor Mom had 2 syncopal episodes on the same day (I think it was Saturday). It was kinda scary but we all got through including Mom. Ya never know what life has to offer here.

My friend Keith was here last week to help me to some stuff around here and to help Dad prime and paint.

I've been fighting a sinus infection for about 4-5 days now. I think I'm winning!

Aimee & Eric & Turtle are fine.. I plan to fly to be with Aimee on May 13th! I can't wait!! We'll visit (Eric has to travel for business). we'll watch all the Harry Potter movies with all the extras, we'll do a little shopping (Aimee's birthday is in June), we'll eat out a little and we'll laugh and talk to all hours!! I can't wait!!!

Jazz Fest starts this Friday. Kendal called and we will be going 2 days this weekend (if weather permits). It's been lovely weather here with very little rain but Jazz Fest usually brings the rain back! I love Jazz Fest. It's a great place to go and listen to all kinds of wonderful music! (It's not just jazz, it's multi-cultural). It's a great time!!

I've been a little down in the dumps lately and not leaving home much. I hope Jazz Fest and the trip to Aimee's changes all that. My friend Keith is coming to stay with my animals so Linda and the family don't have to deal with them the whole time I am gone.

My friend Brad called me the other day. It was good to hear from him. It's been a while.

Raehella called and they have been sick but are feeling better now.

Jamey and her family are all well. Linda and Michael seem to be doing a little better with this difficult situation (being caregivers).

White dog and orange cat are both well as are L & M's 4 cats and Mom's cat Jonsey.

Hope all of you are well!

Peace and Hope,

LCC

Today is Saturday

Hi,

Today is Saturday. I seem to be in a blue funk. I'm not sure why but I am. I don't want to go out or get dressed or anything. I just want to sleep. I do go through cycles of this and I'm not sure why.

Mom seems to be rather stable. She still can't do anything for herself but is not passing out the way she was. Dad is hanging in there. A little more confused and forgetful but still handling most things.

Linda and Michael seem rather tired and anxious. I'm not sure what that is about.

White dog and orange cat are doing fine. They still haven't accepted Linda's 4 cats. Linda's cats although sweet to people are not too nice to other animals. They chase and gang up on my cat and dog.

I'm still doing my Peer Volunteer work. I just signed up for another cycle. The AD Assn down here is in quite a mess. So far, since Elena resigned, there is only a part time person who answers the phone but is new and knows nothing. No services so far. No more EOAD support groups. What a mess! I've been trying to get in touch with Bob S. who is the head of the Louisiana AD Chapter. So far, no luck!

Seems like no one down here really cares. That makes me very sad!

I'm tying to figure out how to start another EOAD support group.

Peace and Hope,

LCC

Easter Sunday

Hi to All,

Happy Easter! Today has been a pretty good day so far. Mom seems stable today (at least for now). Everyone seems OK.

Spoke with Aimee to say Happy Easter and to see what she & Eric were up to today. They are doing fine. Turtle too.

Michael made us pancakes for breakfast. Delicious!!!!!!!!!!

Alexis came over and I gave her Easter candy and minutes on her cell phone. She brought me some pretty colored daisies! I enjoyed our visit soooooooo much! I miss her a lot!

Earlier this week, Dad had bought all of us some Easter flowers which were lovely.

Went on the AD Message Boards to do some Peer Volunteer work.

Now, waiting for Jamey to come and stay for a couple of days! Aunt Julie & JoMary are bringing us some take out Greek food for dinner.

Oh, Linda's cat Lizzie was missing but we found her last night and she's home safe and sound. Thank goodness.

I miss the old days when our family would get together with all my cousins and celebrate.

Oh well, life goes on!

Peace and Hope,

LCC

The House of crazy!

Hi,

Sorry I haven't written in a while but everything has been pretty crazy here. I don't know how to explain it. It's never calm in this triplex! There's always several things going on at the same time. It's either phones ringing, doorbells ringing, nursing visits, cna visits, packages being delivered, the sitter (Gloria) comes and goes at different times now because her husband has been sick and needing wound care, Dad comes and goes in and out as well as Michael.

It's never one thing at a times but several things going on simultaneously!! Ahhhhhhhhh!!

Linda has needed some down time because of her dental work, Dad can't stand to stay in the house too long. He constantly has errands to run to get away!

I feel sorry for my Dad because he just can't handle being a caregiver. He'll do almost anything to escape from this house. Poor thing, I know he is having a rough time.

Mom had another syncopal (fainting spell) last night in the bathroom. She was totally unresponsive and at times stopped breathing. Dad & I were in there with Mom but neither one of us could handle her being limp. So, I had to call Linda & Michael to help. She was out for about 10 minutes or more. Finally we got her back in bed. She was wiped out but did wake up. We put her oxygen on and let her rest. Later, we changed her and got her ready for bed. Whew, it was a long night. It's always kinda scary because we all know one day she's not going to come back from one of these spells.

Linda and Michael are doing OK but I think they are both really tired. Being a caregiver is HARD work!!

Aimee & Eric visited a week or so ago. It was great to see them. Especially my Aims, I get soooooo lonesome for her sometimes.

Saw Keith a couple of days ago. He's ok.

And, had lunch with Kendal today. She picked me up and we had a wonderful time together.

Bad news, my friend Elena, has resigned her position at the Alzheimer's Assn. I am Very sad about this. It is a great loss to the Louisiana AD Assn as well as to me! I've cried a lot about this. The AD Assn is no longer going to have and EOAD/YOAD support group! OMG, this is terrible. We had 2 meetings per month. We all looked forward to the meetings. We all will miss that!!

I am kinda stable these days. I thank God for that. I truly don't want to become a burden to my family. I have a feeling I must be on the real study drug and not the placebo because I am doing OK and because my eyelashes are turning white as are my eyebrows. Yes, it looks strange but what can I do? Even make-up doesn't always help. The doctor is not sure what is going on but he is checking into it.

Well, It's late and I'm very tired.

Thank you all for listening and caring and sharing!

Peace and Hope,

LCC

Another Saturday

Hi to All,

Well, things have been pretty hectic. We finally got Mom's hospital bed and Dad's single bed up and ready. Seems to be working ok. Michael is putting up more bars for safety for Mom.

Aimee & Eric are coming in today (yes, Turtle too). They are coming for a visit but mostly to remember Eric's Mom who died one year ago. Eric and Aimee will spend sometime with Eric's family and go to his Mom's grave.

White dog and orange cat are doing fine.

Me? Well, I just can't seem to get enough sleep. I've been napping almost everyday! I wonder if it's the Lilly study drug that makes me soooo tired? Still doing my Peer Volunteer work on the AD Message Boards. Been helping Linda with Mom. Linda is pretty pooped too! Poor thing.


Peace and Hope,

LCC

It's Been Rather Crazy.

Hi to all,

Sorry I haven't written in a while but things have been kinda wild lately. I went to Washington, DC to attend the Alz Action Forum. The conference was great. We went on Capital Hill to make our Voices heard. I spoke with Senators and Congressman and asked/demanded that they co-sponsor the new bills on Alzheimer's disease/related dementia's and all the other legislation that's been presented in the Senate and in the house. If any of you are interested in these bills please go to alz.org. Then, e-mail your Senators and Congressman/woman to so-sponsor them! Please, speak and e-mail everyone you know!! These bills have to pass! It's not only about the people with AD/other dementia's, it's about people with our condition bankrupting Medicare and Medicaid!

I came home thoroughly exhausted because we were up from 5 am until 11 pm most nights. It was great but tiring. It was wonderful to see some old faces and meet new ones. We were fired up and ready to go!

Upon arriving home, I found Mom had declined. Poor Linda had done a great job taking care of not only Mom but Dad and Michael as well. She, also, took care of my animals white dog and orange cat. She really had her hands full but she did a great job!!! Thanks, Lin.

Over this past weekend, we had quite a scare with Mom. While putting her to bed Linda and Dad noticed a sharp decline and trouble breathing. They called me and I went downstairs to see what was going on. I could hear Mom breathing from the door. Almost sounded like the "death rattle." We re-positioned her on her side, put on her oxygen on and I gave her some atropine drops from the hospice emergency kit. We waited a while then we decided to call the on-call RN for some help/advice. Greg called back (I used to work with Greg). Said he'd call Dr. D for an order for some IM Lasix. (Mom's lungs were full). Greg came later and gave Mom the lasix. It seemed to take a while to help. Linda & I stayed up to see if Mom got better and, also, to see if we needed to change her from the lasix. Later, things seem to calm down and Mom was resting more comfortable so we went to bed.

Mom is still extremely weak. I can barely understand a word she says. I called Dr. D with Hospice and he is coming to see Mom tomorrow AM. I just want to make sure I haven't missed anything or that something else should be done to make Mom more comfortable.

We're all a little stressed these days. Aimee and Eric are coming to visit this Saturday. Mom seems happy about their visit. Gives her and all of us something to look forward to!

As for me, well, I am tired but so is the rest of my family. I'll just do the best I can to keep up and help.

Peace and Hope,

LCC

Another TGIF

Hi to All,

Well, I am going to Washington, DC. I leave tomorrow. I'm excited but nervous because I am traveling alone.

Mom seems to be doing OK. Had a very dizzy spell last night but did not loose complete consciousness. Hospice is helping Mom so that's good. Dad's still believing things will get better.

Linda & Michael are OK as are Aimee & Eric. White dog and orange cat are fine too!

Wish me luck on this trip. I plan to visit some Senators and Congressman/woman while I'm there to discuss our cause and get more help and more funding. This AD monster is getting out of control and so far there's no stopping it! We have to make them listen and understand about AD, Young Onset AD and other dementia's before it's too late.

I guess y'all heard that the phase III Clinical trials on Dimebon failed. Another bummer! But we have to keep fighting and researching and fundraising and providing people with AD and their families some help and care.

Well, I gotta go pack now.

Peace and Hope,

LCC

Wed. March 3rd

Hi,

We admitted Mom to Home Hospice today. Things went well. We called it Palliative Care which Hospice is. Mom seems happy that she won't have to go back to the hospital or see multiple doctors anymore. no more 911 and that makes her happy. The hospice medical director (MD) who I know well and worked with, will take care of Mom now. (Thank God)! Comfort Care! yes.

Mom is still very weak and eating small amounts of food but seems to be in fairly good spirits. She absolutely can't even take a step anymore but she hasn't passed out either. Her Blood Pressure continues to fluctuate dramatically but no syncopal episodes yet. She requires 24/7 care now.

As for me, well, I'm hanging in there. My throat is finally healing and I had a full day of drug clinical trials yesterday. Thank goodness for my wonderful sister. She drove me there and spent the day with me. Thanks, Lin!

I saw my shrink today and he increased my night time meds as I haven't been sleeping well as night. My sister had an extremely high blood sugar today that rather scared me. I thought she might need to go to the ER. Michael came home and found a small kink in her tubing leading to her insulin pump which she had changed the night before. She took a shot of insulin as well as changed the tubing again and took more insulin via her pump. Poor thing she felt pretty bad today. She's better this evening. Hopefully, tomorrow will be better.

Aimee and Eric and Turtle are doing fine although the weather in Georgia has been pretty darn cold!

Jamey and her family are doing fine too. Julie is fine and the boys too.

There is a chance I may be going to Washington, DC this Sunday, Monday, Tuesday for the Alzheimer's Forum there. Keep your fingers crossed for me. If I am able to go, I will be able to call on Senators and Congressman/woman about the need for more funding and research for the Alzheimer's Assn. Aimee & I went last year but had to leave when Eric's Mom died suddenly. I really don't like traveling alone anymore but there wasn't anyone available to go with me. So, I will go alone and hope for the best! I will stand in front of the Lincoln Memorial during the Candlelight ceremony and pray for all the people I love, all of you and your families, and for all the other victims of this horrible, terminal brain robbing disease called Alzheimer's!

I have A Peer Volunteer Meeting tomorrow. Have been back on the AD Message Boards since I'm better. Love those boards!

Please, take care.

Peace and Hope,

LCC

It's March 2010

Hi to All,

I'm so sorry that it has taken me so long to post. Lots have been going on. Mom is home now. She came home last Monday night. She's doing OK. No more syncopal episodes (yet) but her blood pressure continues to fluctuate dramatically. We have to monitor it several times a day.

BIL Michael's son came in town last week for a visit. We were so glad to see him! He's in the army and seems so be doing OK.

Last Thursday morning I woke up feeling ok. I took my meds and it felt like one of them got stuck in my throat. Wow, did it hurt and burn! It lasted all day. I couldn't hardly drink much less eat. It felt like a hot knife was jabbing into my throat every time I swallowed. I slept a lot that day. The next day I called Lenny (my pcp). He said sometimes a pill and stick and burn your throat. So, he told me to get some liquid Maalox and liquid benadryl, use 1 tablespoon of Maalox and 1 teaspoon of benadryl, mix together and gargle and swallow.

Linda and Michael went out and bought me this stuff (thank goodness for them). The first evening I couldn't really gargle (the pain was horrible) so I just let the liquid meds sit in my throat. Friday and Saturday are a blur. I took my meds and slept day and night. Yesterday, I finally started seeing some relief. WOW, I couldn't believe how sick I became and how all I could do was sleep.

Poor Linda had Mom all through my illness. Dad and Michael helped but I think the heaviest burden was on Linda. She was trying to visit with Mickie and continue to cook dinner and help Dad take care of Mom. I know she's exhausted! And believe it or not, I'm still exhausted! What a pair we make! lol

Dad's cold is getting a little better. Hospice finally received the doctor's order to admit Mom to in home hospice. This is scheduled for Wed. @ noon.

I have an all day drug study day tomorrow. Linda will take me there so we put off the admit until Wednesday.

Aimee & Eric are doing Ok except they are both suffering with sinus problems.

Julie and her family are fine.

Jamey and her family are doing OK.

Oh, by the way, I spent time with Alexis a couple of Saturdays ago. We celebrated her 14th birthday. We went shopping and had lunch together at her favorite restaurant! Later, we just visited at my apartment. Talked, laughed and were a little sad. Her stupid father (my EX) has pretty much abandoned her for this new woman that he's going to marry. (She doesn't like children). Men can be such fools! Rusty used to adore Alexis now he's thrown her away and her heart is broken!! I tell her that it's NOT her fault and that it's her Dad making poor decisions. She cried and we cried then we hugged. Then, I tried to lighten things up a bit. When I dropped her off at home, she seemed OK.

Well, that's all the news for right now. I'm still tired so I'm going to rest.

Please, take care.

Peace and Hope,

LCC

It's Friday and Mom's still in the hospital.

Hello to All,

Well, just a short update on Mom and the fam. Yes, Mom's still in the hospital. All of her doctors have seen her (thank God). They have taken her off all her Alz meds and BP meds. They started a new BP med yesterday. She had a UTI so they have given her Iv antibiotics, and fluids and volume a expander (albumin). She's had blood tests, holtor monitor and an echocardiogram.

Mom is eating and drinking very little and continues to loose weight. Her BP's are still dropping significantly when she sits and stands (although she has NOT fainted in the hospital). She did get out of bed with PT yesterday and walked a few steps but today her BP was too low and unsafe for her to do any walking. She is still on a cardiac monitor.

I'm not sure if they will ever figure out exactly what the problem is and how to fix it. Mom's getting very exhausted being in the hospital. She wants to come home. I just wanted a thorough evaluation for Mom to see if we could get her a better quality of life. She's very unhappy with her quality of life as it is now and I don't blame her! She deserves better!

We are all fairly exhausted here taking turns at the hospital taking care of Mom.

Thanks for listening and caring.

Peace and Hope,

LCC

It's Mardi Gras and Mom's in the hospital.

Hi to All,

Just a brief update. As I have said, we had a bad weekend with Mom with so many syncopal spells. She was having to stay in bed.

Yesterday, I called the Home Health nurse to come visit Mom and see what she thought.
After we had called Mom's pcp (office closed) then the cardiologist she convinced Mom to go to the ER. Soooooo, we called for the ambulance around 3ish in the afternoon. We arrived at the ER around 3:30p, waited in the hallway again, then finally put in a room in the ER. Saw ER doctor, ordered tests. Mom did have very orthostatic blood pressures there but did not faint. The found she had a UTI. They have her iv fluids and an iv antibiotic. We finally got a room in the hospital around 3am. Poor Mom. It was such an ordeal. I was exhausted!

Dad's up there with her today. Her regular doctors are off (because of Mardi Gras) and so other doctors are seeing her.

Linda is supposed to relieve Dad for a while then I guess I'll go back again this evening.

Thanks for listening. I'll update you when I can.

Peace and Hope,

LCC

It's Valentine's Day!

Hi to All,

I guess I should start by wishing everyone a Happy Valentine's Day!

Our home hasn't been very happy in several days now. Mom has taken a turn for the worse and it's taken all of us to care for her. She's been having multiple fainting spells, blood pressure problems and more incontinence. She has and is refusing to allow us to dial 911 and have her brought to the er. She understands that she may die with one of these "spells" but still refuses the ER. I love and respect my Mother so I will not go against her wishes. She has a Living Will, Advanced Directives and a signed DNR. As hard as it is, I must respect her wishes.

I've spoken with my Dad, Sister & BIL and we've decided to get Hospice Care for Mom. She needs more care at home. Hospice is great with comfort, Palliative care. We all want Mom as comfortable and happy as she can be.

It's been a rather sad weekend, especially for my Dad. He's really having a hard time. My Mom & Dad have been married for 61 years come this May 21st. They truly don't know how to be apart.

I hope and pray that whatever time Mom has left will be of good quality and that when her time comes, she will go peacefully.

Thanks for listening.

Peace and Hope,

LCC

Wednesday

Hi to All,

Yes, the New Orleans Saints Won Superbowl 44!! Yeaaaaaaaaa!!!!!!

The family was together. We hooped and hollered and celebrated! We finished strong! Victory at last!

Oh yeah, update. Well, Aimee & Eric went home on Tuesday. Julie & Bob went home Monday. Now, all is back to normal, well, not exactly normal. Mom's not doing well. She's had several syncopal (fainting) spells since Friday, fell and hit her head on, well, I can't remember which day that happened, she's been dizzy and nauseated (giving her meds for that), in general, weak like a kitten!!! Refused to go to the ER. Ahhhhhhhhhhh! It's so sad!!

She's has a doctor's appointment with her Pcp tomorrow. Let's hope he can help figure out what's going on. (I doubt it because he is a jerk, but we'll see). Linda and Dad are supposed to take Mom tomorrow.

I have and EOAD support group meeting tomorrow at noon. Then a Peer Volunteer meeting (phone meeting from 2-3pm).

I had an appointment with the Nurse Practitioner Lynn (neurology) on Monday. She seems to think I've stabilized now and don't need to see my neurologist for 3 months! Yes, that sounds good to me. The only decline I feel is in the visual/spatial area so I have been driving a lot less.

Linda & Michael seem fine. They are a tremendous help!!! They really help keep the stress off of me!! They do more with Mom than I do now.

Winston had an allergy flair this week. I took him to the vet. He gave him a shot and some new meds. Simon is having a hard time with Linda's 4 cats. She leaves the door open between she & Mom's house to let the cats roam (she calls it letting them go to Disneyland) on both sides. It's ok except it's hard on Winston and Simon because we have to close the doggy door and every door so the 4 cats can't escape'!!
It doesn't allow Simon & Winston to go in and out which is what they were used to doing.

The Saints' parade was last night. We didn't go but watched it on TV! Is was great.

Mardi Gras is this Tuesday so we'll we dealing with parades from now through Fat Tuesday!

Hope Everyone is well.

Peace and Hope,

LCC

Feb.5th, 2010 It's Dad's Birthday!

Hi to All,

Well, my Dad turned 88 today! Wow, I can't believe it. Neither can he. He told me, "I didn't plan to live this long." Well Dad, I'm so glad you did!

Today he & I went to the grocery. He drove (because I was having a bad day). Gosh, I got sooooo confused in the grocery. Had a hard time finding the things I wanted to buy. It was kinda crowded and just too much! Ahhhhhhhhhhhh! I hate days like this! They scare me because I'm afraid I'll stay that way. Confused and frightened!

While we were leaving the grocery, Linda called and said Mom had another syncopal episode (fainting spell) when Julie brought her back from the hair dresser. They finally called Michael and they revived her with a popper (smelling salts). Linda said she was out for only about 5 minutes this time. It's been much longer in the past. Believe me, it's always scary!

When Dad & I got home, we checked on Mom then we brought in our groceries. I'm glad Michael was there because he helped me carry my stuff upstairs. He's so great!

I think Linda went next door to calm down. Julie helped Dad put groceries away. Later, she left. I think she was pretty shaken up about Mom. Poor Julie, I hope she's ok. Bob is coming to join her tonight.

Aimee & Eric are on the road now to see us. They're coming for the Superbowl! GO SAINTS!!! We'll watch the game with Dad. He'll love having the fam together for Superbowl!

We plan to celebrate Dad's birthday tomorrow. Everyone will be here, He'll really enjoy that!

We have Mardi Gras parades tonight here. It's gonna get crazy between Superbowl and Mardi Gras!!

Peace and Hope,

LCC

A new Month/ February 2010

Hi to All,

Mom has been feeling dizzy for the last couple of days. Not sure what the cause is. Her Bp's have been fairly stable. Historically, she's had bouts of meneurres disease (sorry about the spelling). I think this is what this is but I'm not sure.
Mom asked Linda to call her PCP to see if he would give her medication for it. She used to take antivert. I don't know what the doctor will do if anything! I can't stand him!! Linda speaks with him now (although I did have to speak with him when Mom was in the hospital).

Hope he sends her some antivert!!

Well, let's see. Linda & Michael are OK. They are trying to find new doctors down here.

Aimee & Eric are doing well and are planning to come in this weekend for the Superbowl. Wow, I can't wait! The Saints in the Superbowl! YeeHa! I can't wait to see Aimee & Eric!!

Julie is coming in tomorrow for a few days. We have tickets to see Momma Mia Wednesday night. Hope Gloria can still stay with Mom that night.

Jamey and her family are doing OK. I think Adam & Shanna are going to the Superbowl in Miami! Lucky dogs!

Dad's 88th birthday is Friday! Wow, I can't believe it. We'll wait and celebrate when the kids come in on Saturday.

My friend Lisa's daughter Samantha is going to be 18 on Wednesday. Gosh, I was there when she was born. She's a lovely girl now. How time does fly by sometimes.

Alexis will be 14 on Feb. 23rd! OMG, I remember when she was a little girl of 4!! She's growing up soooooooo fast that it scares me!! I love her so much!!

Me, I guess I'm doing OK. Saw my therapist today. She's working with me to accept this Alzheimer's disease a little better. I was talking with her today and I said I was stupid for forgetting something again. She said that was a negative thing to say about myself and that it was the Alzheimer's making me forget. She said "Don't blame it on yourself, blame it on the AD." And, of course, she's right but sometimes I still do FEEL stupid!

I've had many challenges in my life that I have had to overcome. And done so pretty successfully. I can't seem to accept the fact that I can't fight this disease the way I've fought other things in my life. The therapist is trying to help me not fight so much because it doesn't really help. It just makes me furious!!!!

She's trying to help me accept this disease a little better and have more peace.

Orange cat & white dog are here with me now. Both are doing well and are very comforting. I was looking at some pictures today and I came across a picture of Aimee and Rudy. Rudy was the little Yorkie that Rusty and I rescued a few years ago. I miss Rudy a lot sometimes. Rusty took Rudy when he left because I couldn't afford to keep the three animals. Rusty was supposed to take white dog but his new girlfriend didn't like Winston but would take Rudy. So, Rusty is such an A hole that I can't see Rudy!!
I hate him for that! And, for a lot of other reasons. I don't like using the hate word because it's so terrible. But, that is how I feel about him now. I do pray God will eventually take this hate away. Perhaps in time??

I go to my drug study tomorrow so wish me luck. I sure hope I'm getting the real drug and not the placebo!!

Peace and Hope,

LCC

A busy Thursday

Hi, I hope everyone is well.

Today was a busy day. I went to my EOAD support group meeting today @12n (I was late). We had a good time talking but I find many of the other declining more quickly then myself. Both a young woman and a fairly young man have been rapidly declining. This lovely young woman had a seizure after Christmas and since then she makes no sense. She uses garbled words now that most of us can't understand yet she still smiles at times and seems to enjoy the group. The guy is getting thinner and makes very little sense now. It's very sad. We have a new woman in our group who has Lewy Body Dementia. She's from up north and is very nice. We seemed to be short a few people today. I don't know what happened to them.

I love my group but sometimes it's so sad to see people you care about decline so rapidly. I know I am declining but not that dramatically and quickly. It makes me wonder, why them and not me??? Is it the meds I take or the study drug I'm on?? I don't know what it is. No One seems to know why some decline faster than others.
I feel badly for them yet grateful for me. Is that bad???

Aimee & Eric called to say they are coming here to watch the Superbowl with us! YEA!! Eric is a huge Saints fan! Of course Turtle is coming too! We've waited 43 years for the Saints to get to the Superbowl. We can't stop our excitement!!

Julie is coming in on Tuesday to stay with us for a few days. Bob will join her on Friday. Barbara isn't coming.

Linda & Michael are doing well except that I think caregiving is taking a toll on Linda. She seems a little tired and down. Michael is still adjusting to being here. Don't get me wrong, I'm thrilled they're here but just a little concerned about them.

White dog (Winston) was sick this week. Vomiting so much that I had to take him to the vet. He seems fine now. Orange cat (Simon) is sleeping on his blanket in his chair. He's doing great! I love my boys. They give me great comfort!

Well, I'm very tired. Had a busy day with my EOAD meeting, going to the grocery and getting my hair cut. Years ago, I would have laughed at that being a busy day. But, Oh how times have changed!!

Peace and Hope,

LCC

Monday Update

Hi to All,

Good news. Mom seems to be doing better. She's not walking much but she's not as weak as before. A little improvement in her appetite too.

Dad seems to be hanging in there.

Linda & Michael are fine as are Aimee & Eric & Turtle.

As for me, well, I'm not sure what's going on. I'm tired all the time! I sleep well at night yet wake-up tired, can take a long nap then go right back to sleep at night. The doctors say it's just part of the disease (Alzheimer's).

My visual/spatial problems seem to be worsening. (I only drive around my neighborhood now and sometimes that's even difficult). I think I'm overdo for my eye exam. My vision seems to be a bit worse so I think I'll set up and exam.

The SAINTS won yesterday!! Yea! Go Saints Go!!! We're heading for the Superbowl! This city is exploding with joy! We've waited 43 years for this!!! I was at a Saints party and we all went wild! It was great!!

Hope all of you are well. Thanks so much for reading and caring!

Peace and Hope,

LCC

Wow, It's been hard!

Hi to All,

Quick update. Mom started having syncopal(fainting} episodes again. I tried getting her PCP involved but he's such an "A hole" that we finally had to call 911 and send her to the ER. I rode in the ambulance. Mom did OK but she HATES ambulances and the ER!

Of course, we were stuck in the hall of the ER for quite a while which made Mom angry!

I tried to make her feel but but was pretty unsuccessful. The ER Doc was running a lot of tests. I told Mom this was necessary to rule out a lot of things. Later, Linda came and relieved me and later they got Mom a room.

Mom stayed the night then I went up the next day to find out what was going on. Mom had become very weak again. The cardiologist was very concerned although he said her heart studies had not really worsened,

Mom is back home again, Thank God! She was weak and could not get out of bed yesterday but with help got up in her recliner today. The home health nurse came by as well as the PT.

I had a full day at the research place today. Linda was an angel.

This episode has taken a tole on the entire family especially Dad. Michael and Linda have been great!

I'm sorry I'm tired now so I'll have to stop.

Will update again soon.

Peace and Hope,

LCC

It's Thursday already!

Hi to All,

How is everyone? I hope you all were able to watch the CBS segment on Alzheimer's. I'm always glad to get this dreadful disease in front of the public!

Well, OK, time for an update. Mom is doing a little better. She walking a bit more and this is great! Go, Mom! Her appetite is so-so. We're giving her boost again.

Dad seems kinda angry these days. I think Mom's illness is really wearing him down.

Aimee & Eric are doing fine. It's been pretty cold in Georgia. Turtle is wearing his sweater. He's so cute. lol.

Linda & Michael seem to be doing OK. (Their 4 cats are adjusting to indoor life!) They are both a great help to Mom & me.

As for me, I'm hanging in there. Ups and downs. Starting to get tired again and needing naps. My emotions are labile but more on the down side. Still doing the drug study. Next week's visit will take the entire day! Ahhhhhhhhhhhhh! But, I'll do what I have to do. Thank God for my sister, Linda. She drives me there and keeps me company! She's great!

Jamey came by for a brief visit on Monday. She and her family are fine.

Julie and Barbara came in last week with their sons. It was a little hectic but fun.

The Saints are in the playoffs this weekend. Wish us luck!

Please, take care. I'd love to hear some comments from you about the CBS Evening News Special.

Thanks.

Peace and Hope,

LCC

Tuesday Jan. 12th, 2010

Hi to All,

This is just a reminder to all of you to please watch The CBS Evening News with Katie Couric tonight. Dr. Jon LaPook is doing a story and update about Alzheimer's disease. My family and I participated in this special.

Hopefully, it will be informative and helpful.

Thanks.

Peace and Hope,

LCC

It's the first Wednesday of 2010

Hi to All,

I don't know where the time is going. Seems like yesterday was New Years!

I am sitting on my sofa with white dog and I have a few thoughts I'd like to share.

Wait, updates first. Mom's actually doing a little better. We changed a few of her meds and she seems less weak and more with it. Linda & Michael are doing fine. It's so wonderful having them here! Aimee & Eric are doing OK but have company (Eric's Dad & nephew). It's been a little stressful for them. Jamey and her family are fine. Julie and Barbara are here visiting now (they came yesterday).

I went to the shrink on Monday still complaining of depression (bouts of crying) and anger ( cursing and rageful). He decided to up my generic prozac. He told me that this rage/anger/cursing was part of my illness and that there was not much I could do about it. (that made me sad). One more thing I can't control. And, it comes out of nowhere! Once I start I can't stop! I'm so angry at times that I don't seem to care what comes out but later when my family and friends tell me what I've said I am embarrassed! I just hope and pray that I don't hurt someone's feelings. I would never want to do that.

I am still doing the drug study. It is a Lilly drug, a gamma secretase inhibitor. Supposedly, it slows down the progression of AD. I sure hope it helps.

I haven't noticed any improvement yet. Although, I may be receiving the placebo. I hope I am getting the real drug! Keep your fingers crossed!

Oh, I wanted to tell all of you that the CBS evening news with Katie Couric did an Alzheimer's story on me and my family. Dr. Jon LaPook did the interviewing. It will air on Tues. Jan. 12th @ 6:30pm est, 5:30pm cst. I'm not sure what time the evening news in shown in the west. It is usually 2 hours earlier than my time which is central time. Please, check you listings. Also, please call or e-mail you families and friends to watch. We need all the support we can get.

Unfortunately, I look old and fat but I did the story anyway so that it could be told. They said they wouldn't do the story without me and my family. It's called "Where America stands on Alzheimer's." It should be informative and bring the attention of all Americans to the plight of this terrible disease! I, also, hope it will bring in more dollars for research and give help to patients and families with this disease.

Thanks for reading, sharing and caring,

Peace and Hope,

LCC

It's 2010 !

Wow, the holidays have flown by. I can't believe it's 2010!!

Ok, here's the latest. Mom's not doing well. She's very weak and tired and has had another fainting spell (luckily, she didn't stop breathing this time).

Dad seems rather sad and kinda helpless but Michael and Linda have been wonderful! It's much easier to deal with this with them here! They have been angels and Mom needs angels. This angel is kinda pooped so it's great to have help now. It takes several of us to get Mom to the bathroom these last few days. But, what a team!! lol.

Linda cooked a great New Years Day dinner. Baked ham, cabbage, potato salad, black eyed peas. It was very good. I can't say great because I can't taste great anymore. Either my smell or my taste is going quickly. Most things taste ok but that's all. I find this very sad because being a New Orleanian I love to eat! We have some great food here. Just another loss. They keep coming and coming.

Aimee & Eric are OK but Aimee's had some health problems since they returned home and now Eric's Dad and nephew are going there tomorrow for a week! (Uninvited, I may add). He just announced that he had bought the train tickets and they were coming! Aimee was pretty upset! My poor Aims!!

I went to the Fairgounds yesterday with some old friends and that was nice. A bit confusing but nice. Last night I stayed home and watched TCM with white dog and orange cat. Nick and Nora Charles (the Thin Man movies). I love them!!

To start my year off right, Orange cat decided to Pee on my bed this morning!! AAhhhhhhh! I could have killed him. He hasn't done that in over a year. Luckily, I had my mattress cover on. But I still had all that washing to do. The 3 of us sleep in a king sized bed!

Is this a sign of what 2010 will be like????????? God, I hope not!

I hope all of you had a wonderful, safe New Years Eve and Day!

I hope and pray that 2010 is the year of The CURE!!

And, thanks to All of You for hanging in here with me. I hope it helps some of you. I know y'all help me!


Peace and Hope,

LCC