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.

Walking Away

Elaine came today and Courtney and I went to the "Oscar Movie Marathon". For one price the movie theatre plays all the movies nominated for Oscars (This year there were double the nominations and they had to split it over two weekends). It lasts from early morning to late evening. We went last year and had such a good time. Today I got to stay for 2 movies (then I had to come home to cook dinner and be here to get Mike into bed), Courtney is staying for 3.
When I got home, I realized that no matter how much people say they love Mike and do what's best for him, no matter how much they want to help - at the end of the day - it's just Mike and I. That goes for my children, my family and the aides. They help as best as their schedule and time allows, but at the end of the day, they can walk away. I can never walk away. I'm not complaining, just stating a fact.
If and when I DO get the opportunity to "step away" for a little bit, I pay the price. It takes tremendous effort to prepare for that time away and I am always innundated when I get back. This situation is not unique just to me. This is true for ALL CAREGIVERS.
No matter how much we may need a break, we never get the opportunity to truly walk away.

More Snow Problems

Today we had another snow storm, but this time it DID create some issues. Courtney was at school and Brandon happened to spend the night at his school for a retreat. My brother left the house at 2am for work. Elaine called in and said she wouldn't be able to make it in. I woke up to about 12 inches of snow and no one to help me with Mike.
My mom said "Karen, the snow WAS predicted" Yes I knew that, but twice before they had predicted alot of snow, yet nothing ever happened. Had I taken the threat of snow seriously, last night, I would have put Mike in the hospital bed so I would have been able to get him out of bed on my own. Instead, we put him in or regular bed and therefor, I needed two people to get Mike up.
I called Elaine back and practically begged her to try to get over, so this way, I could at least dig out the car to get Courtney and eventually Brandon (when the retreat is over). All I got was her voice mail. I contemplated calling my neighbor who had offered countless times to help if I needed it. Instead, after about an hour, my mom called to tell me that they were on their way over. As much as I was frustrated that she and her husband, neither one of which can walk well, came out in this storm, I was SO THANKFUL that I had help.
In the middle of giving Mike his breakfast, Elaine walked in. I was shocked. She came to help with Mike and give me the time I needed to dig my car out and get Courtney. I got Courtney, then Brandon, then Elaine went home and then my mom went home. Unfortnatey, Elaine fell on her way to the bus stop and I am waiting to hear how she is doing.
What a snow day! I am SO READY for the spring.