Wednesday, March 31, 2010

The House of crazy!


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,


Saturday, March 20, 2010

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,


Monday, March 15, 2010

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 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,


Friday, March 5, 2010

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,


Wednesday, March 3, 2010

Wed. March 3rd


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,


Monday, March 1, 2010

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,