Brandon at College

This past week we took Brandon up to Connecticut to Quinnipiac University as he begins his
long road ahead to becomming a physical therapist.
The school managed the move-in with perfection and I was thrilled when I didn't need to do anything. We were welcomed to Brandon's dorm building by about 20-25 upperclassman who completely unloaded our van and carried all our boxes and supplies into Brandon's room. I savored every moment because I know this ritual is only for Freshman.
The weather was beautiful. Brandon's friend from high school has a room in the building right next to his. We all had lunch together and then Courtney and I left for our trip home. We decided to take the ferry from Bridgeport to Port Jefferson and it was absolutely beautiful.
I pray Brandon will be OK and not homesick...I'm sure he will be just fine.




The picture is of Brandon in front of the University's mascot... the Bobcat.

Fundraiser with Love

This past Saturday night, some of Mike's friends from High School and Grade School arranged for a fundraiser for us to help with our overdue medical bills and health insurance. Unbeknownst to me, our dear friend - our angel Tom - had been in touch with Courtney and Brandon to arrange the date and get people's names to invite. I was only told about it last month and I was extremely shocked. Of course I was emotional and quite humbled. The fact that these men, with jobs, houses, children and commitments, took the time and effort to make this happen was almost unbelieveable to me. I also didn't find out until that night that there was a "silent" partner in this who paid for all the supplies, food and beverages so that our family would get 100% of the proceeds. To me, this is the ultimate gift. The entire time he did not want to be known, he donated so much without the desire to be in the spotlight. It was only AFTER I took to the microphone and thanked all our friends that I was introduced to this kind, kind man.


The fundraiser came at a perfect time. Tom's original goal was to raise enough money for Courtney and I to have health insurance for a year. Then the week before the fundraiser, I got notification from the home health agency that if I didn't pay all or a portion of the $15,000.00 I owed them, they would have to stop sending Mike's aide. While I completely understood their point of view, I found myself unable to pay the $1,200/month Medicaid felt I could afford (when calculating our "overage", they take net salary, not gross and they do not take other expenses into account).
The best part of the night was seeing friends I haven't seen in years. My best friend from High School, our Best Man, Brandon's Godfather, a girl I used to work with at Friendly's while I was in high school and Mike's friends from GRADE SCHOOL. It also amazed me that people we never even met met were coming together to help us.
Mike's friend Steve, one of the men who arranged this night, told me a story that made me understand Mike just a little bit more. Steve and Mike were friends in grade school. Steve's mom was blind and he told me that Mike's mom would come over frequently to visit with her. Mostly, to just sit and talk, keep her company or help her in any way she could. The apple doesn't fall far from the tree. This is exactly what Mike was like when he was well. How sad that two people who gave so much of themselves developed such a hideous disease that made them both alienated by their own friends "who just couldn't handle seeing them this way".
The evening was an amazing, emotional and fun time for everyone. I was touched by all that was done for us, and everyone else felt good for being able to DO for us.
I will never be able to properly thank Tom, Steve, Ed and Rob for all their months of work. I pray one day I will be given the opportunity and means to help someone else.

5th Annual Lemonade Stand

Well, it was that time of year again...time for our annual Lemonade and "Yummy" sale with
all proceeds going to the Alzheimer's Association.
Unfortunately, this year we did NOT pass our goal. Each year we try to surpoass the amount we did the year before, and quite honestly, I'm assuming the recession hit us as much as anyone else. Courtney was disappointed, but as we told all our customers yesterday, every little bit helps!

With Courtney not returning to NY until the day before the sale, it was up to me to do the baking. On Thursday, I baked 8 dozen cupcakes
and 3 boxes of brownies. Courtney made the monkey bread when she got home on Friday.

Speaking of Courtney getting home, it couldn't have come too soon for me. She was lucky to have 5 great weeks in London, but wouldn't you know it, the last week there, riots broke out. I was quite concerned, even though she constantly reassured me they weren't near her. When people go crazy like that for no reason, you never know what can happen. I'm just SO GLAD that she's home safe and sound!

As one comes, it will soon be time for the other to go. Brandon will be leaving for college on August 24th....not too far away. In true male form, he has not done anything to get ready. He has not packed anything, nor looked through any of Courtney's stuff to see what he can use. Ah yes, Courtney will be transferring BACK to Hofstra. Yes. I feel so bad for her that the school she dreamed of going to (Fordham) disappointed her and she hated it there. She made a very smart choice and decided to head back to Hofstra, where she has more friends and can work hands on in her major. She will be living at home with us, not dorming as she had done the first 2 years of college. I know she was VERY concerned about leaving me once Brandon went away to school, and I tried my best to make sure that she was not staying close for that reason. She seems happy and content with her decision and for that I am happy for her. It doesn't take away my disappointment that Fordham did not live up to her expectations in any way.

Mike is STILL battling the same sores. He has good days and bad days. I won't say anything more because I truly believe I jinx things sometimes.

Me, I'm stretched to my limites. My fingers and wrists have been hurting me ALOT lately, and I know it's from transferring Mike onto the bed at night. I'm sure I will eventually suffer from arthritis somewhere down the line.

I am talking to the journalist who wrote the story about us in Newsady on collaborating on a book. She seems excited about the idea, so we'll see where it goes.

I hope to keep everyone updated, but I know the next few weeks will be C-R-A-Z-Y!!

Bed Sores....I HATE them!

This weekend, Mike had a sore on his buttocks that did not look good to me. So all weekend, I was trying to keep him off of it, to relieve the pressure. I was very careful (or so I thought) to shift him frequently so as not to compromise the sores on his thighs. Well, when he woke up today the sores on each side, as well as the one that was almost all healed on his shoulder were bleeding and looked worse. His aide, who had been out the weekend, started yelling at ME for not caring about Mike. How could I do this to him....Is this what happens when she's not there? Why does he even bother?! So, in addition to feeling bad enough on my own, I have someone making me feel even worse.
Common sense tells me that no matter what ANYONE does, Mike's health is very fragile. We give him THE best care humanly possible, yet the sores can still get worse. I know all this, but I can't help but feel guilty that because I tried to keep him off his bottom, the other sores got worse as a result.

It's Been a While

I just realized how long it's been since I posted. WOW.
Let's see, Courtney will be coming home from England next Friday. I can't believe how fast it went. She had classes three days a week, and the other time was for her to do with what she wanted. She did so much, but still didn't get to do all that she wanted to. I was living vicariously through her and had a great time!
Brandon will be going away to school in two weeks. He will be attending Quinnipiac University in Connecticut studying physical therapy. He's been very quiet lately and when I ask if he's nervous, he says "Of course". I think he's more concerned about being away from Mike.
Our Sunday aide was away for 5 weeks and that was hard. She will be back tomorrow and we're all thrilled.
Mike's friends from grade school and high school are throwing us a benefit on 8/20. They were apparenly planning this for months, but I just found out about it - they needed friends/co-workers info to send invitations. It is a humbling experience and it says ALOT about who Mike was as a person. I don't mean to speak about him in the past tense, it's just that Alzheimer's has destroyed the person he once was. These friends, some of which we haven't seen in like 20-30 years, think enough of Mike and care enough about our situation, to dedicate their time and energy to making the event a success. It couldn't come at a better time, since social services called me last week and told me they may have to discontinue services because I owe them too much money. No services - no aide. No aide - no work for me. No work for me - no income. No income - no house. After I got that call, I made sure they all knew how especially thankful I am that they are doing this.
My niece came in from PA for a few days. Courtney and she were supposed to go to the NKOTBSB (New Kids on The Block/Backstreet Boys) concert in June, but they moved the date to last weekend and Courtney was still in England. I went with my niece and we had a great time. My ears were ringing for days afterward.
Maria Shriver sent me a shout out on Twitter and Ellen DeGeneres sent her love (in response to my blog post on marishriver.com wherein I explained how laughter has helped us get through the toughest days). It was surreal - I actually took a picture of the screen.
Mike's sores are still there and the one on his bottom is beginning to look bad to me. I have been concerned about it for a week or so, but his aide kept telling me I was crazy. It's been bleeding a bit more and it's just SO CLOSE to his tail bone. He still has the other two on each of his sides, so no matter where we turn him, he's still resting on a sore. He's had them for SO long!
I had just told our aide to request more chucks (cloth pads we put under Mike) from hospice because the ones we have are shredding. Today the doorbell rang and it was Betsy's husband. He was dropping off chucks that he had from when Betsy was sick. Coincidence...I think not. Thank you Betsy!
That's my catch-up. Hope everyone is doing well.