Goosebumps

Not much has been going on and for that I am thankful. We are still planning our trip to PA even though I don't have the respite situation for Mike rectified. My sister and I laughed ALOT yesterday as we talked about the road trip with 10 family members, 2 of who are senior citizens. I keep streessing that a sense of humor and Zanax will be key.
I finally made it to mass this weekend. Because we have not had an aide on Sundays, I have been unable to go for months. I miss Mass and the strength it gives me each week. On Sunday, before Mass began, they made an announcement that they needed more Eucharistic Ministers. Even though Courtney is an "EM", she was never "trained" in our Parish. After the second request, they added, "you don't have to be from this Parish to help". Courtney jumped up and pitched right in. I have never seen her give Communion before and even though she was not near me, I kept turning around to look. I got the goosebumps watching her, while the sadness crept in that Mike would never get to see his daughter administer the sacrament of Communion. He would be SO PROUD.

Next Stop..Pennsylvania

For over a year, my sister has been planning my nephew's graduation fron Penn State University. Yes, we will be gaining a meteorologist in our family. Because of the size of the school, plans needed to be made far in advance, so our hotel has been booked for almost a year. Now that our Washington trip is over, I can concentrate on our trip in PA. This trip will require much more planning.
MIKE will definitely need to be placed in a respite facility, and I know that will be an issue since they don't allow patients or their families to "plan ahead". I will be talking to the social worker next week about what we can do.
GIZMO will need to be boarded somewhere. Even if I can get someone to come by and walk him, I cannot leave him alone all day and night by himself. I would be concerned if something happened to him and no one would be there.
COURTNEY has finals the week of my nephew's graduation, so they need to be re-scheduled. She's also supposed to move out of her dorm by May 15th.
BRANDON will be turning 17 on the day of my nephew's graduation so we will need to find a way to celebrate that somehow, without taking away my nephew's thunder for such a HUGE accomplishment.

Nothing is ever easy, but I'm PRAYING that everything works out and my ENTIRE family will be able to get away. My goal is to go to PA and not have to plan one thing. I want to be told where to go and when we have to go - I want 4 days of no responsibility. I'll need it for sure by the time we get on the road!!!!

Waiting and waiting

Yesterday I took Brandon for another follow-up for his ankle surgery. His appointment was 3:30 and the waiting room was crowded. I knew we were in for a wait. I don't mind waiting, that's not much of an issue for me. What bothers me is when other people come in AFTER us and are taken BEFORE us. Now I know you may think, "well maybe they are seeing another doctor". No, in this practice, the nurse will yell, "Brandon for Dr. Z". So all those waiting know who the patient is seeing - it's like the staff wants to create turmoil. After TWO HOURS we are taken into the room. Fifteen minutes after that the doctor comes in. He's very apologetic and I'm feeling better. There's nothing worse than waiting and waiting and then not getting an apology or acknowledgment. After we spent our 5 minutes in the room with the doctor, we then had to go to the "check-out station". More waiting. Two people are before us, then a woman comes, then a mother and son (Tyler), then a mother and daughter (Ashley). The only girl working at check-out calls, in order, the two people that were before us. Great, I thought, just the way it should be. Then lo and behold, she calls "Tyler". W-H-A-T??? The other woman who was there right after me gives me a look. We let it go. Tyler is finished, then the girl calls "Ashley". Wait a minute - their files were CLEARLY put right in front of ours and taken first. The other woman waiting with us finally said something after Ashley leaves. The girl at the desk, surprisingly, seems dumbfounded at our frustration. Our two files were put in the back of the rack, and everyone else's was put in front of ours and they were taken first and on their way home already, while we were still waiting to check-out. The girl at the desk calls "Susan" and we look at each other... seriously. Brandon and I were there before her and she graciously allowed us to be taken before her. Now the girl at the desk is mad at US for being upset and "rude". If there's one thing I always try NOT to be, is rude. I work in an office and I know what it's like to be yelled at. I simply tried to explain to the girl that we had waiting for 2 1/2 hours in the waiting room and saw people be called before us, and now I was frustrated because is was happening again. She told me that she didn't like my "tone". If I told her once, I told her 3x that I was not upset with her, I was upset with the system. Now the nurse comes in who put the other people's files ahead of ours and asks what was happening. I told her that "someone" had placed the files out of order (I felt like yelling at her "YOU IDIOT") and we were frustarted with waiting when we were there first. She said she knew nothing about it. O-M-G !!!!!!! I understand that they were busy, and must have been stressed out also, and I explained that, but they just could not understand why I was frustrated.

Needless to say I left there feeling exhausted. What made matters worse is that my 16 year old son, who had been fine the entire time, spent the whole ride home being upset with me for "embarrassing" him. I felt beaten. I know these are issues that happen every day, and I know his reaction was normal for a 16 year old, but who do I vent to?????? In a normal situation I could come home to my spouse and talk to another relatively intelligent adult. I could get it out of my system and move forward. Instead, I got even more emotional at the reality that I am in this on my own.

The Quiet Man

Happy St. Patrick's Day!!

This was one of Mike's favorite holidays. One of the most ironic things that came to my mind is the fact that EVERY St. Patrick's Day, Mike would bring The Quiet Man (starring John Wayne)into work and play it on a loop all day. For some reason he just loved this movie.

How ironic is it, that for the past 6 years, Mike has been THE quiet man. His voice has been taken away by this disease and he has been unable to speak. Strange how life works....

Grease Those Wheels

The feedback (from Washington and the Conference) continues to pour in, and all of it good. I really feel like we've turned an important corner. A few friends/family have also written to their Congressman and woman and their Senators. This is exactly what we need- the squeaky wheel gets the grease. Years ago, when AIDS was an epidemic, people were outraged and they let their voices be heard. Money for research came pouring in and today, AIDS is no longer a death sentence. The same can be said for certain cancers, heart disease and diabetes. Unfortanely the funding for Alzheimer's Disease research has actally gone DOWN, and in turn, the deaths are increasing. What can we do to make a change?

For all those blog followers, please contact your Reps/Senators and request that they support AD research. To make it easier, you can go to the Alzheimer's Association web site and sign up to be a "virtual advocate". They also have sample letters already written that you can send out to your Congressman.

Let's stand up and be counted - let's gets those wheels greased!!!

Speechless

Thursday I had the priviledge of being asked to be a Keynote speaker at the Alzheimer's Association's Education Conference. I was given 30 minutes to speak, and I wasn't sure if and what I would say. I worked on my speech for weeks and felt I had gotten it just right, AND it was only 20 minutes in length. I didn't want to go on and on because I know how boring it could be to listen to someone for so long.
The morning Keynote speakers were John and Denise (photographer/reporter) who did the amazing story in Newsday. John presented videos and pictures of the six families they reported on and I was SO thankful that I didn't have to speak right after that. The presentation was emotional, not only for me, but for many of the approx. 1200 people in the room. You could hear a pin drop, then came the sniffles. There was not a dry eye in the house. A few people got up afterwards and asked if John & Denise ever thought of presenting the piece on a national level. They felt that even though it touched Long Islanders, it would serve a greater good if people across the US could experience the story. I didn't disagree.
Soon it was lunchtime and time for me to speak. I was announced, took a deep breath and walked to the podium. What I saw took all the strength from me and made it difficult to continue. Before I even opened my mouth, I got a standing ovation. It seemed to last forever. Every bit of resolve that I had dissipated. I thanked everyone, but at the same time asked how they expected me to speak after that. I broke down a few times, but I got through it and when I was done, I received another standing ovation. As I started to walk off the stage, the Chairperson of the Long Island Chapter, asked me to stay where I was. She explained to the crowd that after she spent 3 days in Washington DC with me and my children, she felt like she needed to do something for us, but wasn't quite sure what. She hoped that we would like what she did. She then proceeded to tell the crowd that LI Chapter developed The Mike Henley Advocate of the Year Award, and it would only be fitting that the Henley Family be it's first recipient. OMG - I lost it, I was SPEECHLESS. What they did, was worth more than anything in the world to me. Mike's legacy will live on, and in his honor every year, they will present this award to the one person they feel went above and beyond in raising awareness for Alzheimer's Disease. I'm not sure anything could ever top that in my eyes. Mike deserves SO MUCH, and this award, in his name, will insure that he will be remembered forever.
Yesterday was emotionally draining for me. Beside the award, I can't tell you how many people came up to me and approached me to thank me for all that I am doing. Some people just wanted to hug me. I had an actual line of people waiting to speak to me. Quite a few people came to me and just cried on my shoulders. Not a few tears, but sobbing for their LO's that were suffering from this disease. I couldn't walk 2 feet without someone stopping me to tell me their story. Numerous people told me that they learned so much from my speech - and for that I was grateful. That has ALWAYS been, and will always BE my #1 goal. The conference was geared toward professionals (doctors, nurses, aides etc) to help teach them how to deal with Alzheimer's patients. It also focused on caregivers, and how to handle their LO at certain stages. I couldn't have been happier and I left the Conference feeling strong and empowered. In fact, when people were speaking to me about how strong I was and how amazing the children are, I told myself that I needed to remember all that love and support when I have those days that I feel REALLY low. It's that support that will carry me through.

Alzheimer's Action Summit

Last night we attended the candlelight vigil at the Lincoln Memorial. This was the kick-off of the Alzheimer's Action Summit in Washington DC which my children and I are attending for the first time. David Hyde Pierce got the crowd of 600 strong to chant, "Tonight we remember, tomorrow we fight". I got extremely emotional as a guitarist played and sang, "We Shall Overcome". Standing there with 600 candles lit, in front of the Lincoln Memorial was overwhelming for me and I broke down. I thought, "We shouldn't be here without Mike". We just didn't feel complete, and the reason for that is Alzheimer's Disease.
Tomorrow we will spend the day at The Capital, telling our stories and trying to get our Senators and Represenatatives to help us fight this battle and join us in passing bills that can make a diference, in research and care. It's an empowering experience, one I hope to be able to do for as long as this disease exists.

Keeping Our Fingers Crossed

Tomorrow morning, the kids and I will be waking up at 5am to make our way into NYC and then head onto Amtrak for our trip to Washington DC. Mike has been OK, no fever since the other night. The nurse will be in touch with Elaine on Monday to follow-up.
I will be worried constantly, but despite that I hope to enjoy a few days away.

Wouldn't you Know it

Just as I was getting nervous about our trip to DC, the inevitable happened. Mike came down with a fever last night. To make my day even more complete, I found ot that they canceled my car insurance and I got disconnect notices for gas & electric - all for non-payment. I didn't realize how behind I was.
Forever the optimist (I STILL don't know how) I believe that things WILL work themselves out. Believe it or not, my biggest concern is Mike's fever. Now I have to figure out where the source is and hope he is feeling better before I leave on Sunday.
Thankfully, he woke up without a fever today and his aide will be calling the hospice nurse around noon to update her. The problem with giving Mike antibiotics is that his system is so fragile and he doesn't eat much, so he often gets an upset stomach from medicine. It's a juggling act to see what will be worse for him. I THINK it's his sinus's so I'm going to see if they can prescribe a nasal spray. This way it may clear him up without the use of antibiotics that effect his stomach.
Yeah, and we're supposed to go to Washingotn in 2 days.................

Just another day in the life of Alzheimer's.

Anxiety

With only three days left before the kids and I go to Washington, I am getting nervous. In my head, it seemed like a good idea and one I was comfortable with - leaving Mike with our aide ffor the 3 days we will be away. My mom and her husband, along with my brother will be in and out those 3 days, so they will not be alone. I also spoke to Mike's hospice nurse so she was aware and I will be giving Elaine (aide) her direct number in case of an emergency. It's been 5 years since the kids and I went ANYWHERE for more than a night, and at that time, Mike was much healthier.
I'm sure things will work out, but I can't seem to shake the nervousness that I am beginning to feel, as natural as it may be. We will be back home before I know it, and all this worry will be for naught. I just hope that my time with the Senators/Represenatives will be worth it.

On Saturday Courtney and I attended the Oscar Movie Marathon. This year though, because there are 10 movies nominated, they had to present it over the course of 2 Saturdays. I will not be able to go next Saturday, as I am sure that will be when I pack for our trip to Washington DC. I also only got to see 2 movies, then I had to get home before our aide left. I got to see Avatar (UNBELIEVABLE) and Up In The Air. After seeing Avatar in 3-D, every other movie I see will feel bland and boring. I vote that ALL movies should be 3-D. Courtney stayed for a third movie (Precious) which she absolutely loved, as difficult as it was to watch. One dat I hope to be able to sit and watch each movie. They started at 10:30 a.m. and went all the way through 11:30 p.m. - with breaks in between as well as trivia games. It's like a one day vacation...............
This week is crammed with appointments so I will be missing out on 2 lunch hours (I forgo lunch so I can leave early for the appointments). This is when I have been trying to finish up my speech for the Alzheimer's Association Education Conference on March 11th - the Thursday after we get back from DC. I am beginning to panic because I'm not happy with it right now. I just hope I have enough time to finish it and make it interesting. I have 30 minutes to speak, but I don't plan on using all the time. I don't think I would enjoy listening to one person speak for 30 minutes, and I wouldn't want to do that to other people.
Wish me luck.