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.

Daily Inspiration

Mike inspires me every day.

His positive attitude had always amazed me. Shortly after we started dating, his mom was diagnosed with Early Onset Alzheimer's Disease. Soon after that, his grandfather passed away. We were married in Oct. 1988 and the following Feb ('89) his dad was diagnosed with stomach cancer. He passed away in November of 1989. Not long after that, his beloved Aunt died, as well as his other grandfather. In 1992 his mom passed away and not long after that his grandmother passed away. It seemed that the first few years of our marriage were spent in funeral homes. It was not a good way to start off our marriage, yet throughout all the loss, Mike remained upbeat. He never lost his faith and remained positive. Thankfully, I had not suffered much loss back then, and I could not understand how someone who had lost so many family members could be so "positive". His faith in God carried him through and he passed that faith onto me.

It seems like such a cruel twist of fate that once we got married, purchased a home, had children and just began starting our new life together, that Mike was stricken with Early Onset Alzheimer's Disease. When we had Courtney and Brandon, Mike was so hurt that his parents were not around to see their grandchildren. He ached for their approval and support as he began his journey into parenthood. True to Mike's personality, his immediate reaction upon being diagnosed was his concern for me and the kids. He could have been so angry and bitter, yet he kept his faith. It was only after this horrific disease turned ugly, did he ask "why me?". Mike was robbed of watching his children mature into the wonderful human beings they are. He missed practically their entire childhood and for a man who wanted SO MUCH to be the best dad, it hurt him terribly.

Since he has been sick, and unable to communicate, my dad, his brother and his grandmother have also passed away. Mike has suffered SO MUCH loss that it makes my heart ache. When I look at him, I just want to cry. Sometimes I do, but other times I feel his strength and inspiration and I remain strong in the faith that he has brought back to me. He is my true inspiration......

Another Sleepless Night

The good news is that the agency found someone to work yesterday. It was good to finally get some things done, however small they may have been. I was up all night though because Mike had the "gurgle" that wouldn't go away - again. He was fine all day yesterday, smiling, laughing and eating well. Then, as nighttime came, he started with this gurgling sound. Most times we can pound his chest or put his neck massager on which helps stimulate him to cough. Neither one of those things worked last night, so I was up most the night listening to this sound. The hospice nurse had told me once that it shouldn't bother Mike, that it's more unnerving for us to listen to, but it bothers me SO MUCH. I spent half the night turning him back and forth, hoping it moved things around enough to get him to cough. No luck. At 6:00 a.m. I finally gave him the nebulizer, but that didn't help either. As Elaine (his aide) and I got him up into the Geri Chair, he FINALLY started coughing. Hopefulyl he will cough it all out and it will not come back so that maybe tonight I can get some sleep.

Many Hearts for Haiti

My dad served in WWII and I vividly remember a story he told us shortly after 9/11 when the Red Cross was all over NYC. When his ship pulled into dock after serving in the War, the Red Cross was there serving coffee and donuts to the sailors. Amazingly though, the Red Cross made them pay for them! Now I know that was many years ago and things have changed, but I can't forget the hurt my dad expressed when he told that story. He vowed he would never give to the Red Cross and he stuck to his conviction. As a proud daughter, I have followed in his footsteps.

When the disaster in Haiti occured, I wanted to help, but I did not want to pick up the phone and call in a donation. It was really nice that so many big stars got together and gave thier time to answer phones and perform for such a good cause, but seriously, do we know where all that money is going to? We hear so much about the select few that hold high positions in these organizations who take advantage of their position and cushion their salaries & make additions to their homes etc., all with the hard earned money that kind hearted people have given to help others.

I wanted to help the people in Haiti but I wasn't sure how. Then I got a flier in the mail from our church, St. Brigid's Church here in Westbury. They happen to have a BIG Haitian community and in fact one of our priests was in Haiti when the earthquake happened. The Pastor sent e-mails out to all when he received word that Fr. Cini was safe. Both Courtney and Brandon have had several Haitian friends throughout their years at the school and because of that, the disaster struck a familiar chord. The flier I received was titled "Many Hearts for Haiti". Our church, together with another Haitian community in NYC, will be delivering supplies directly to the people in Haiti. Right then, I KNEW this is what I was going to do.

For years, so many people have helped my family and I felt it was only right to give back. I may not have alot of money, but I put some aside this past weekend and went shopping. I took the list I was given and had a great time in Target - Pedialyte, baby wash, band-aids, vitamins, Ensure, adult diapers, wipes, beans, gauze, alcohol etc etc. I had more in our cart for the people of Haiti than I did for us and I felt GOOD! When the kids and I dropped off the supplies, we were met by one of Brandon's old classmates who still has family down there. Thankfully, they were OK, but his sister explained the hardships they are going through. I felt SO GOOD knowing that my 1 box and 2 bags of supplies will be going DIRECTLY to the Haitian people.

Snow Day

I wrote this entry last week, but because of Brandon's "broken u" on his computer and me being busy at work, I couldn't edit it until today.

I woke up today and we had no aide because of the heavy snow. I prepared Mike's breakfast and medicine, then got him washed up and dressed. Brandon and I got him into the Geri Chair and then I gave Mike breakfast. This took from 9:30-11:30 a.m. When I was finished with that I made the beds while Brandon shaved Mike. I got Mike into bed at 12-12:15 then I went outside to shovel a little and clean off my car. I came in, ate lunch then I walked Gizmo. I sat for 10 minutes and then I started to get Mike up out of bed about 3:00 p.m. Brandon and I got Mike back into the Geri Chair and I gave him dinner while Brandon went to his friend's house. I finished helping Mike with dinner about 5pm and I was too tired to cook. Brandon came home from his friends house and stayed with Mike while I went to get dinner. We got Mike into bed at 7pm. I cleaned him up and tucked him in. I cleaned up the kitchen and then wrote this entry. I will then walk the dog and when I get back in, I will put on my PJ's and sit down and watch SURVIVOR.

My snow days ain't what they used to be :(

Under Stress and Getting Old

I have been having a REALLY difficult time lately with every aspect of my life. Mike and his illness takes up the big part of that pressure. For whatever reason, I feel like I am doing more and more for him. We still do not have an aide for Sundays, so basically, I am working 6 days a week. I love Mike so much, but without an aide to take care of him, I can get nothing else done. This past weekend, Mike's aide left a 1/2 day on Saturday, so my weekend was basically shot.
I am also having a harder time, physically, and that's when I realize..... I'm getting old. When I started this journey, I was 9 years younger and I had my two children to help me. Now I have only one (who for 2 months was out of commission himself) and my body is much more tired. The lack of sleep each night is beginning to drag me down, as is the constant stress of everyday life.
The uncertainty of Courtney's college education and eventually Brandon's weighs heavy on my mind. This is not at all what I thought my life would be like. I hate talking about problems in front of Mike, because I truly believe that he understands so much. I saw a bracelet recently that had "I HATE ALZHEIMER'S" on it and I thought, how appropriate.
There is no hope with this disease, there is no cure. A diagnosis sets in play an avalanche that never stops. Or in the words of the Newsday reporter, a "tsunami" - that destoys everything in it's path.
I truly hope that when we go to Washington, we can open up some eyes and make a strong impact. I have very little faith in politicians, but it's worth a try. I NEED to try. Something has to give.

Our Voices

I have just a few more things to confirm and then the kids and I will be all set to go to Washington in March. I really do hope we can make an impact on some Senators. The kids and I have not been on vacation in 4 years. My friend at work just recently booked a cruise for her and her husband. That cruise to the Bahamas is cheaper per person that this 2 night stay will be for us in Washington. We could have gone on a cruise for 7 nights to sunny Bahamas for less than this trip to DC - imagine that!!!!

We are going to Washington because we NEED to put a new face on this disease. So much is focused on the elderly, but so many people STILL do not realize that young people can be affected. When Mike was diagnosed, I vowed that I would do everything I could to raise as much awareness as possible. I've been on TV, radio, internet, newspapers - any place that will have me. I will never get tired of telling our story, because it's a story that NEEDS to be told. Alzheimer's Disease does not discriminate, nor should the research or the services that patients are entitled to.

Two days after we get back from Washington, I will be a Keynote speaker at the Association's Education Conference. When I was first told I had 30 minutes to speak, I was nervous about how to fill up that time. Then all I needed to do was to sit and think about a portion of the events we have survived, and I am confident that I will be able to fill up that time (and more), and do so in an interesting and informative way.

It looks like the kids and I WILL be going to Washington, but no thanks to the hospice's respite. I made alternative arrangements involving Mike's aide. I hope my trip to DC is successful.

Mike is having "bathroom" issues right now and I hope it's just a matter of getting some laxatives into him. He seems to be uncomfortable and he hasn't been laughing as much. I hope all he needs is some assistance and that it's not his body getting tired. Yes, I worry about EVERYTHING.

Brandon and I made plans for him to visit StonyBrook University in 2 weeks. I can't believe it's almost time to start that college process with Brandon already. That's where he has his heart is set on going, and hopefully that will work out. Having more than 1 disappointed child would NOT be fun.