Humble Appreciation

First, I can happily say that I am beginning to feel better. It took 5 days on antibiotics for me to feel like I can function properly. I look forward to being 100% soon. A bit of irony - I took this Wednesday off so I could relax and spend time alone with the kids, knowing that Mike was in good hands with his aide. This morning I got a call from the HH Agency stating that his aide will be out Wednesday so she could fulfill her requirements for Medicaid. There goes my ONE DAY to relax. I just cannot win.....................

Secondly, I am writing this post with the hope that some of my "Santa's" read it.

I just cannot believe the generosity that people have shown over the last few months. The last 2 weeks have been especially filled with the "joy of giving", but many people that have given gifts have decided to remain anonymous. I am deeply humbled, and sad at the same time that I cannot give the appropriate thanks.

Some people HAVE signed their cards and for that I WILL send Thank you's. Like:
- the residents at the Sunrise Senior Living who held a holiday sale with proceeds going to us
- to the staff of Seaford School District Office who gave up their holiday gift giving and donated money to us instead
- to the staff at Zucker/Hillside (Low 6) for all the homemade goodies and gift cards
Some people have chosen to remain anonymous:
- to the anonymous student from Kellenberg who sent a home-made card with a gift
- to the person who left a card on my windshield this morning with a gift (appropriately tucked in a plastic baggie because it was raining)
and to all the other people who have sent cards and letters in the mail - THANK YOU, THANK YOU THANK YOU.
As I recently said to a friend: I am well aware that money cannot buy happiness, but to be able to pay my bills on time, takes a TREMENDOUS burden off my shoulders.

I wish you all a VERY HAPPY, HEALTHY AND BLESSED NEW YEAR.

Christmas Joy

Christmas started off VERY good. When we went in to wake Mike up, he not only smiled, but he laughed - ALOT!!! Even though I still feel horrible (4 days on antibiotics and still just as bad as the first day), I couldn't help but feel uplifted and blessed. Mike was just so happy, how could I feel bad?

The day proceeded to go well even if for a few arguments here and there from the two siblings. Brandon has been cooped up for 4 weeks and Courtney has been on her own at school for 3 months. They have each fallen into a routine, neither of which goes along with the other. Trouble was bound to ensue. Regardless of the snafu, the day went very well. After I gave Mike his breakfast and got him tucked in for his afternoon nap, Courtney, Brandon and I started watching Inglorious Basterds. About an hour into it, I went in for a nap myself. I've just been SO tired. This has to have been the worst weekend for us not to have help.

I was thrilled when I opened my present from the kids. I FINALLY got my own camera. No more waiting for Courtney or Brandon. The very first picture I took was of Mike smiling. The kids also got Mike a new Led Zeppelin T-Shirt (he's wearing it today as shown in the picture), and he looked really cool.

I'm hoping that I feel better soon - if I could only get some sleep at night. Even though I have been sleeping on the couch, my throat and glands hurt so much and my mouth gets so dry, I am so uncomfortable, I cannot sleep. I NEED to feel better for next week. My sister and her family will be in to celebrate Christmas/New Year's with us. We are VERY MUCH looking forward to this visit and I want to make sure we are all well.

Mike's Christmas smile.

Christmas Surprises

This week has been full of surprises.
Yesterday all the girls at work went out to lunch because I was not able to attend our office dinner. During lunch they presented me with a gift from the entire office. After they saw our article in Newsday, they collected from everyone and gave us a very nice Christmas gift. It brought tears to my eyes.
Today when I came home from work, my mom said that someone rang the doorbell and left a gift bag on the stoop. They ran away so they could not be seen. Inside the bag was a beautiful story about the meaning of Christmas, homemade cookies and an envelope with cash.
Tonight around 6:30 our doorbell rang. Standing on my front step were 2 woman with two large boxes wearing Santa hats. They smiled and said "Merry Christmas - you don't know who were are, do you?" They were two nurses from the hospital that Mike was in back in 2004 for his anger/agitation. They saw the article in Newsday and decided they were going to "adopt"our family for Christmas. They brought food, dessert and gift cards for Courtney and Brandon and the supermarket. I think I am STILL in shock. It's been 5 years and they've never forgotten us. They told me that we were a difficult family to forget because we are "not the norm". They said they very rarely get to see the love and devotion we showed to Mike while he was hospitalized those 2 months.
These surprises show me how much of an impact we have had on other people. The fact that these people went out of their way to prepare 3 meals and dessert, track down our address, MapQuest us and deliver it all to us 2 days before Christmas when I am sure they are busy themselves - is humbling. The fact that another person baked cookies, copied a beatiful story about Christmas and left a gift, going out of their way to remain anonymous, is also amazing.
We have been EXTREMELY blessed and I am thankful and forever grateful to these Christmas angels. It's special knowing that we have touched people's lives.
Merry Christmas!!

Sick & Tired.....literally

Here it is, 2 days before Christmas and I have NOT ONE present wrapped.
I am sick (going to the doctor today). I woke up 2 nights ago not being able to swallow. My throat doesn't hurt, but my tonsils are so swollen, there's barely any opening in the back of my throat. Just what I need. I will also be taking care of Mike myself for 3 days (Christmas, Sat & Sun.) which will not help at all since I will be getting no rest whatsoever. I am so tired I just want to cry.

My birthday was Monday and Mike and the kids got me tickets to see "A Chapin Celebration". I am a BIG fan of Harry Chapin and had seen him NUMEROUS times. His family is performing locally to celebrate his songs and his life. It was a GREAT present and I can't wait to go (April, 2010). Other than that it was just another normal day - as we get older, birthdays aren't as celebrated I guess.

Mike laughed today. I was shocked. He smiles but I haven't actually heard him "chuckle" in quite some time. Courtney is home from school and he's loving every minute. She went in when he woke up and he gave her a HUGE smile and a laugh. It was music to my ears.

My Snow Angels

Well the "blizzard" came and we awoke to about 18 inches of snow. With no aide, I knew my day would be crazy. For the first time in a L-O-N-G time, Mike and I and the kids were home alone----just the four of us.
With Brandon not able to walk, me caring for Mike, and my brother being called into work to plow, that left only Courtney left to shovel. As much as she likes it, we have a difficult house to shovel (we live on the corner so we have a lot of sidewalk). Just as I began hyperventilating thinking about how I was going to dig myself out, Mike's friend from his job (the same one that came by the other day) called to say that he and his son would be over to shovel for us. What made it even more special, is the fact that they live about 20 minutes away (on a good clear day).
This is a picture of Mike's (Mike's friend from work; they share the same name) son and his friend as they were finishing up. Before they got to us, they had shoveled their own houses and their grandmother's house. Just as they started making a dent in the snow, my other neighbor came by with his snow blower and cleared out our driveway (which had been plowed in).
Yes, there is such a thing as snow angels and these are mine.

Thank you!!!

Me & The Kids

On Monday Courtney and I went into NYC for a benefit concert. Various broadway stars got together and sang show tunes and Christmas songs. We had a good time, although by the end of the night I was tired. I'm getting too old..

Today, we waited and prepared for our blizzard. Long Island was supposed to get hit really hard. Kids being kids, love the snow and all Brandon could do was sit inside and watch it come down. He was so pathetic. He put on my boot (notice the pink) and Courtney covered his cast with a plastic bag. He sat outside for a little bit before it started to really come down. I went outside to keep him company.
It's still snowing as we speak, and they say we will be getting about 10-12 inches by tomorrow. Love the snow - hate to shovel.

Fear, Love and Devotion

I continue to be amazed and humbled by complete strangers.

With regard to people we DO know, a man that Mike worked with came by tonight. Mike worked with him 13 years. Mike has not worked there for 8 years yet every year at Thanksgiving, one of their employees comes by and give us a turkey and at Christmastime they have a collection at work, and give that to us.... every year since Mike was let go. Tonight when his ex co-worker came by, he apologized for not being able to do more, but what he didn't realize was just how much he DID do, and I told him this. This man cries each and every time he leaves our house, yet that will not stop him from coming. He knows he will leave upset, yet his fear does not keep him away. I wish this could be said for everyone. There's not a day that goes by, that I don't think about Mike's only surviving sibling and how he has not seen Mike in years (6 to be exact). I have no idea what keeps him away, but it is beyond anything I can even imagine - to completely ignore your own brother who has a terminal illness. How do people live with themselves? How do they explain that away?

On the flip side, there are complete strangers that have reached out to us with words of encouragement and support, love and prayers - always just when I need it the most. Tonight, Mike's friend from work said that he feels that it's because Mike was always a "giver". He would go anywhere for anyone, and do anything if asked. He helped this man understand Christianity so he could convert for his girlfriend so they could get married in church. He told me once again how Mike explained to him our religion and how important it was to him. He taught this person the meaning behind our holidays and helped him "study" for his conversion.

Mike is a kind, gentle and caring soul. It's no wonder, that even to this day, anyone who meets him, falls in love with him.

Proud Moment

The other day Courtney went back to the High School to help Brandon with his backpack after school. As she waited in the hall while Brandon took his make-up test, she was approached by another student. She had seen him when she went there, but it wasn't someone she was friends with. This young man came up to her and said he had seen our article in Newsday. He began talking about it and soon explained that his 48 year old mother was JUST diagnosed with Early Onset Alzheimer's Disease. He was reaching out to her, even if it was in a small way. I'm sure it took courage for him to approach her and I am very proud with the way she handled it. She proved that the apple does NOT fall far from the tree. She explained to him about a group the school has for students with extenuating circumstances. When Courtney began High School, she was the only student in the group with a parent with Alzheimer's (the rest were students of divorced parents, siblings with disabilities etc.) She directed this boy to that group - which sadly enough will now have 3 members. Three students in a school of 2,000 is scary. The percentages are rising in every community. This high school senior began telling Courtney that he had to hurry to get his driver's license since it was apparent that his mom would soon not be capable of driving. Courtney ended the conversation by reminding him that Brandon still attended the school and that if he needed anything, he should seek him out.

I was proud of Courtney for helping this young man. I was happy that this young man reached out to Courtney because he had seen our story in Newsday. It may have been the connection he needed to help him not feel so alone. We were once again pleased that our story was able to help someone else. Mission accomplished.

Oh the Holidays...

For those who read my blog and are not on Facebook, I will share a recent experience I had.
Since Medicaid changed it's rules, and aides can't work more than 60 hours a week (which IS good for all), my Sundays are no longer free. Whether the agency finds a sub or not, I am with Mike most of the day. This weekend, we decided to get our tree. I wanted a small one, simple and easy to decorate and maintain. Realistically, I knew that with taking care of Mike AND Brandon, my time would be even more limited. Courtney and I headed to Home Depot on Saturday. Saturday, the day it was cold and rained all day. I had no choice, we didn't have Sunday.
When we got "inside" Home Depot (the trees are in fact outside under a covering) I saw a tree that looked good. It stood about 4-5 feet high, and I figured once it was put in the stand it would be even taller.Courtney wanted no part of it. She voiced her opinion immediately. She pointed to another one and I cut the string holding it together. As I stood it up, the smile that came across Courtney's face was priceless. It WAS the perfect tree. We brought it home, along with some roping for the fence and a wreath for the front door.
Courtney lugged the tree off the car by herself and together we brought it inside. She tightened the stand while I held it in place. She mentioned something about the screws in the stand not lining up right. I told her that when my brother came home from work I would ask him to check it out. That night Courtney and Brandon decorated the tree as best they could (Brandon on crutches - Yes a true Tiny Tim) and they planned on finishing it this weekend.

Fast forward to Sunday afternoon - as I walked into the dining room I looked up just in enough time to see the tree fall over, ornaments scattered all over the floor.
Our bare tree is now tied to the wall, waiting for Round Two this weekend.

Oh how I love the holidays......

The Boy Who Cried Wolf

Well, after my last post I felt bad. My brother woke up the next morning sick, so his "excuse" of being tired was in fact truth. The problem stems from the fact that EVERY DAY, my brother complains about something - his back, shoulder, knees, head, teeth - so that when something is REALLY wrong, I tend to brush it off. I spent the next day feeling REALLY bad.

Brandon went for his follow-up today. The bandage came off and the stitches came out. We thought he had a cast on, but it wasn't. Instead it was about 5 inches of cotton. Now he will be in a cast for 4 weeks, then on to a boot, then PT. When the doctor maneuvered his ankle to test the ligaments, he was pleasantly surprised with Brandon's reaction. According to Brandon, his ankle now felt "smooth".

Mike is still sneezing and coughing. Hospice still doesn't feel like an antibiotic is needed. I'm not sure it is either, because sometimes the mucus is clear, other times it's yellow/green. The nurse seems to think it's because of the dust in our house, but strangely enough, I disagree. My house is NOT the cleanest house around, I admit, but a few weeks back (about the time Mike started sneezing and coughing) Mike's aide cleaned the LR top to bottom. Since then, Mike has been coughing and my asthma has been worse. This is the reason why I leave my dust alone. Once it's moved and has the opportunity to "dance around the house", that's when the problems arise. If you leave it alone and let it just sit there, we're all OK :)

The local Alzheimer's Association has nominated me as their Long Island Ambassador for a new program. I would be working closely with my Congresswoman with regard to all things Alzheimers. It's a new program, and I'm not sure how much time I would need to dedicate to this. This is such an important issue for so many people and I need to make sure I can give it my all. They are trying to find out exactly what's involved and then I will make a decision. I would LOVE to be able to raise awareness directly in Washington.

Are all Brothers Alike?

Let me preface this post with the fact that I love my brother, I just don't love the way he acts sometimes.
Mt brother moved in with us last year because his pay cut left him unable to afford his rent. I gave up Mike's and my bedroom for him. He didn't start contributing financially until this summer and even that is not significant. I don't care about the money, but what I DO care about, he finds it difficult to contribute.
Today I got home from work late. I needed to get Courtney to a local library to get a French movie she needed to watch for her French test. When I got home about 6:30 I needed to wash Brandon's hair (which had not been done since last Monday. I had been dry washing it). We normally get dinner delivered to us on Tues., but for some reason no one brought it tonight. I had to scamper around and put something together. I started cooking, but also had to get Mike's bed set up. That being done, I got Brandon his dinner (at 7:00 p.m.) and started getting Mike into bed. Brandon woke my brother up to help me. Yeah, that's what I said. The entire time I was scrambling with all the stuff I had to do, my brother was sleeping on the couch - he was "exhausted". He normally takes Gizmo out for a walk each night for me, but not tonight. He went straight up to bed. After I finished getting Mike into bed, I ate dinner (8:15), then I walked Gizmo. After that I made Brandon's bed (the hospital bed) and prepared Mike's meds for tomorrow.
As long as I can remember, I have ALWAYS put myself in other's shoes to imagine what it's like for them. I believe that is what has helped me along the way for Mike. I imagined his fear, sadness, loneliness and anxiety. I do what I can for him because I imagine what I would feel like. I CANNOT imagine sitting on the couch and watching as my sister cared for her hsband and her children. I would never have the selfishness/thoughtlessness to ignore her situation - yet my brother does just that on a daily basis. Yes, he does help me a lot, but if the time is not right for him (as it was tonight) then he retreats to his room and sleeps.
I could NEVER, ever, ever, EVER be like that. Are all brothers like this?