Sickness Update

Everyone is still sick. I FORCED Courtney to stay home yesterday. She needed to rest and she just wouldn't do it. She was so run down, she just never stops. So I used my parental control and forced her to stay home and spend the day in bed. While she is stil stuffy today and coughing a little bit, the rest seems to have helped her.

Brandon on the other hand got really sick again yesterday. He made it home just in time before he threw up. This continued for a few hours, then out it came from the other end. From 4pm yesterday until present, he's been going and I'm concerned about dehydrayion. It seems like with every sip of water, Gatorade or coke, a short time later he's running to the bathroom. My kids have never had anything like this before. He was given Zythromax on Monday for his sinus's. He had never been on that medication before so I checked the side effects. Everything he had was listed as the first side effects. But then again, he had baked ziti in school yesterday and Courtney told me that kids have gotten sick before from lunch room food. Then there's always the chance it could be a virus. I have no idea. I will be calling the pediatrician this morning to see if there's anything I can give him. If it's from the medication, the warning label says to NOT give an anti-diarrhea medication because it could cause further problems. Of course last night I didn't sleep much. I kept Brandon down on the couch so I could keep on eye on him.

In the middle of all this, as I was getting Mike into bed last night, I noticed that one of his toes was RED and oozing. Great, he probably has an infection in his toe. He's had infections in his big toes, but never one of the others. I just don't get why he keeps getting toe infections. I asked the doctor at one point to check his sugar level for fear that he may have diabetes, but the doctor always assures me that all his levels are OK.

I'm concerned about Mike and concerned that while I'm running up and down and staying awake each night caring for everyone else, that I will get sick. I am loading up on Vitamin C, washing my hands and sanitizing everything. All that's left to do is pray.

Oh, and today I will be at my job for 20 years. I can't believe how time flies........

Being Sick

Both Courtney and Brandon are not feeling well. Brandon went to the doctor on Monday and he has a sinus and tonsil infection (strange considering his tonsils were removed when he was 5. I was told that they can grow back). Courtney started getting sick over the weekend and all she keeps doing is sneezing and coughing.

Now most people would be worried and concerned, as am I, but I am almost in panic mode because of Mike. I have been keeping both the kids away from Mike for fear that they may
"infect" him. They have strict orders to STAY AWAY. I have been spraying Lysol everywhere. Of course, without their help, I have been doing most things totally on my own - which is difficult. I pray that I my resistance remains strong so that I don't come down with anything. Illnesses tend to just be just a bother for most people, but for me, they are something I fear.

Weekend Update

It was a busy weekend, as usual. Mike is stil the same. He eats his 2 meals a day. I have just now started to mix Ensure in with his morning breakfast so this way I KNOW he will get the vitamins and nutrients he needs. Dinner lately has been giving him a hard time. I'm not sure if it's because he's tired or maybe his aid rushes a little too much, but he coughs more with dinner. I am always telling her to stop once he starts coughing. I DO NOT want him to aspirate.

On Saturday Courtney and I put together a "wardrobe" for my clothes. Since my brother moved in last May, not only do I not have a room of my own (to escape), but I have no place for my clothes. They were always scattered here and there, on top of a nightstand (that I moved from my old room upstairs to our dining room), on the stairs etc. Well I saw a canvas wardrobe in a catalogue and it was delivered on Friday. We put it together and put all my clothes into their own place. It felt so good. I felt less like a vagabond.

On Sunday, Courtney and I went to the library so I could work on my "speech" for an upcoming Alzheimer's Conference that I was asked to speak at. LIAF (Long Island ALzheimer's Foundation) asked me last summer if I would like to address the issue of an Emergency Room visit with a loved one with ALzheimer's. They knew that unfortunately I had experience with this issue. Well time flies and the Conference is next Thursday. I had most of my notes down, I just had to put them in order. I think I addressed some much needed issues.

We ended the weekend with our usual "rock mass" at 6pm. As long as my brother is around to sit with Mike, the kids and I get to go each week to this mass. They actually have a rock band that plays modern and Chrisitan music. It was Mike's favorite mass, from the moment he heard the band play Led Zeppelin's Stairway to Heaven.

Nice Surprise from an Angel

I got a surprise phone call yesterday morning from an old friend. Her daughter and Courtney were friends when they were younger and she taught dance at Courtney's grade school. She is one of those people that's just plain thoughful, and she's beautiful also, so I can see why some people may not like her (LOL). She's just genuinely nice. I have not spoken to her in YEARS. Sure we exchange Christmas cards, but that's it. She was a HUGE help for us when Mike was first diagnosed. She was an angel then and she's proven she still is now.

She opened a dance studio a few years back. She called me to tell me that each year they have a dance show and all proceeds go to the charity of choice. She decided this year, that she was going to donate to an Alzheimer's organization in honor of Mike. This brought tears to my eyes. Here is someone that I haven't spoke to in years, who tells me that she thinks about us often, that will be putting alot of effort and time into a fundraiser in honor of Mike. She called to find out what organization I felt would be best to donate to. I gave her two names, one local and one national.

I am continually surprised by the generosity of SO MANY many people. I said it before and I'll say it again, I am truly humbled by the kindness and thoughfulness of so many people. I have been a witness to many angels.

Hope

I have been negligent in posting this last week. It was CRAZY at work with my boss being away. I am happy to say thought that all remained "status quo" for the 8 days he was away. The pressure on me each morning when I left for work was huge. I knew if anything happened with Mike, no matter how minor, I would have had to call my boss in Aruba and let him know. He would have had to cut his trip short and head back home. So not only was I worried about Mike, but I was concerned about my responsibility at work. All the concern was for naught, beacuse everything went fine.
Mike is holding his own, albeit, it still looks like he's losing weight. He is still eating his 2 meals a day, so I'm not sure why this would happen. I did read somewhere that toward the end of the disease, people lose weight because their body doesn't process food normally.
I left CNN on when I left work today and told Mike that we were going to have a new President. I explained the historical significance and wanted him to "witness" history. I wonder if he understood anything. We re-played Obama's speech when we got home, so we could all listen together.
HOPE - it's what on everyone's mind.

5 out of 8

Today I BARELY made it through the 5th day of my boss being away. Last week wasn't so bad, but after the second day of the phones being quiet, I had a horrible feeling in my gut. "Maybe everyone took off an extra week and next week (this week) will be busy". My intuition was correct and the last 2 days have been horrible. I can spend an entire day trying so hard to accomodate a client and move mountains to schedule their closing because their rate expires, they have no place to live, or they just want to be plain difficult. I accomplish the impossible and inevitably, the client is still NOT happy. It's so difficult when they complain about the most benign issues, when I have the life I have at home. I know everything is relative, but sometimes, their attitudes push me to the limit.

When I left the office, I thought about coming home to "relax". As soon as I started feeling down that there is no such thing, I realized how thankful am to still have Mike at home with us and that the children and I are healthy and I have a home to go to. The one thing I DO miss is having a room in my home to escape to. Everyone here has a place all their own, where they can go and gather their thoughts or just be ALONE for a while. I don't have that. I have nowhere to go to be by myself. I needed that today, but there was no place to "escape".

Lost Pitcher

My parents divorced when I was about 16/17 years old. My dad worked during the day and left early for work. To make things easier for him when he got home, he would often partially cook the meat part of our dinner so when he got home, he would cook the rest and make the veggies and potatoes. There's one day that has stayed with me forever and I was especially reminded of it last night.

We lived in a 2 family home. My grandmother had an apartment upstairs, but mine and my sister's room was down the hall. One morning, I was awaken to the sound of the smoke alarm going off. My first thought was my grandmother. While she was not "old", she did once or twice leave the burner on with something on top of it. I ran into her apartment, but it was all clear. I looked downstairs and saw a cloud of smoke making it's way upstairs. Whatever was on fire, was downstairs. My dad had already gone to work and my brother was by himself downstairs. He was about 11/12 years old at the time. I ran into the kitchen screaming "FIRE". I was choking from the smoke I was inhaling and I panicked. I ran in to wake my younger brother and judging from his reaction, I knew he was destined to be the volunteer fireman he once was. He got down on all fours (below the smoke level) and grabbed the pillowcase off his pillow to cover his mouth. He followed me into the kitchen and we found the culprit. The oven was still on with chicken breasts still inside. We shut the oven off and took out the hockey puck size chicken. It was burnt to a crisp. My younger brother then went throughout the house to open all the windows to air out the house.

Last night, around midnight, I smelled plactic burning. The smell was so strong, it woke me up. I got up and checked out all the outlets, toaster oven, oven, microwave and basement. Nothing. I smelled the odor most in the kitchen, but I could not find the source. I went upstairs to check to make sure it wasn't coming from either Courtney or Brandon's room. They were both asleep and their rooms were all clear. I heard my brother's TV on, so I knocked on his door and asked him if he smelled anything. He did, but he thought it was coming from outside. He came downstairs with me, and together we began checking everything out. I had gone back into the kitchen again and leaned on the counter to see if I could get to the outlets behind our new washer/dryer and I realized my kitchen counter was HOT..... The dishwasher!!!! I opened the dishwasher and found the plastic lid to Mike's drink pitcher on the metal drying line. It was melted all over and under the metal line. It took me 20 minutes, but I finally found the culprit.

During the time I was searching, all I could think about was if there WAS a fire, what would I do with Mike. I couldn't get him out of the house myself while we waited for the fire department. I would have to stay with him. It was a reality I hope to NEVER have to deal with.

Today I had to go but another pitcher and I was glad that was all I lost.

Where is He Going?

Today is Friday and I've almost made it through three days of my boss's vacation. After today, five more to go. I continue to pray that everything at home remains "status quo".
Yesterday I was sitting next to Mike on the couch (he's in his Geri Chair). I weave my arm through his so that I can hold his hand. In the process, I felt something hard on his side and sadly, I realized it was his rib. I was taken back. I know he's lost weight, but I thought his back was the only place where that was evident. Iwas wrong. It's times like that when I just think, 'THIS IS NOT THE WAY IT SHOULD BE". It takes all the strength I have not to break down - sometimes it works, sometimes it doesn't. I try to stay strong for Mike and the kids, but I am only human. Where is the man I fell in love with and married, going?

Stress

Today my boss left for a 10 day vacation. He's gone on smaller vacations throughout the year, but this is always his big one and he goes to the same place, at the same time (Aruba) every year. I work for a real estate attorney. It's only he and I that work together. We share office space with other attorneys, but we are the only 2 that work together. When he is away, it's up to ME to run the office. No pressure, right?!! This time, I guess for obvious reasons (Mike's decline), I'm more concerned than in years past. When I need to rely on other people to care for Mike, I worry that if they don't come in, I will need to stay home. If something happens with Mike, I will need to be here. To have the pressure of NEEDING to be at work in my boss's absence is ALOT for me to handle right now. I pray that, for the next week and a half at least, things stay "status quo". If there's one thing I don't need right now, it's more stress.

Happy 44th Birthday Mike

Yes, today Mike is 44. Just about 8 years ago, our lives were drastically changed. When I think about all that Mike has been through and how many birthdays he never really got to enjoy, I am sad. I looked at him over the weekend and realized just how much weight he has lost. His back is all bones, his arms are so small and I am beginning to see his cheekbones. This frightens me. I am so aware of how little he is eating, especially compared to what he used to eat. I pray that he will somehow gain his appetite back, but I don't think that will happen. All these steps are just the "normal" progression of this disease. I need to constantly remind myself that if Mike loses weight, or does not eat alot, it's not for the lack of trying. We ALWAYS have food for him and we are ALWAYS giving it to him. If he can't finish it, or starts having trouble swallowing it, there is nothing I can do. I am helpless at those times and realize that this disease may finally be winning.

I also got a call today from my niece. She's going through some tough times right now, and I am so sad that I cannot be there for her more. She is the shining star of the family, she is the sweetest, most sincere, beautiful and thoughtful person I have ever met. It's no wonder that Mike loved her so much. I pray that she will find the peace that she is looking for. I pray that the right people will be able to show their love to her and help her realize her dreams and accept her for the special person that she is. I love you Kristin.

Quality of Life

I've been approached by a few people along this journey that have questioned Mike's quality of life. I've never wavered in my answer to that question. As long as Mike is breathing, he is alive. For as long as he is alive, I will give him the best care I possibly can.

Quality of life- as long as Mike is breathing on his own, with no help, I will know he still wants to be here with us. His spirit to live is strong enough to sustain him and my goal will be to continue to feed that spirit. I will know when Mike is tired and he can no longer do this. But even then, I will love him and care for him for as long as he breathes.

Quality of life - to me he's got it when he turns his head toward our voice, when he smiles at us, when he's got a complete look of contentment. One cannot ask for a better quality of life.

Tomorrow is Mike's 44th birthday. When I look back at the 8 years he's suffered from this disease, it breaks my heart. He HAS suffered, but his will to live has definitely remained.

He is our Energizer Bunny- with the will to live and a good quality of life.

Happy 2009 !!!!

Happy New Yeat to all. I pray that the New Year brings peace, good health and love to all.

As far as past years have gone for us, last year wasn't too bad. It didn't end well, but at the same time, it could have been worse. I am thankful for the love and support of my family and friends, my home, the good health of me and my children and all the new friends I made along the way on this Alzheimer's journey. I pray for all the Alzheimer patients that don't have family and friends to care for them and all the doctors, nurses, researchers and volunteers that do their best every day to make things better and give new hope to all Alzhiemer patients and their families. I pray that the new President will find it worthwhile to increase funding for research and support, for the millions of Americans and their families that struggle with this disease every day. I remain optimistic, that like polio, Alzheimer's will one day, be a disease of the past. So much research has been done and so many more advances have been made since Mike's mom was diagnosed back in 1985. I don't believe we're really close to a cure, but I KNOW we are steps ahead of where we were back then. When Mike's mom was diagnosed, there was no medicine at all to slow the progression and today there is. It is all the little steps that we can be thankful for, because I am convinced that one day, those little steps will lead to the GIANT STEP we need to find a cure.

The bracelet we received from the Alzheimer's Association on the Memory Walk states... A REASON TO HOPE. I wear it every day to remind me of that.