Courtney's Graduation

This past Sunday, May 19, 2013 Courtney graduated from Hofstra University. She graduated Magna Cum Laude, with Honors and was selected for Phi Beta Kappa. I could not be more proud of her accomplishments and only wish that she felt just as proud of herself.
The weekend was filled with different ceremonies for each of her awards and while I knew Mike was with us in spirit celebrating the moment, I could not help but become emotional knowing he was not physically with us.  Courtney had mentioned that he had not been with us at other milestones, but I felt it very differently. Even though he had been unable to speak and could not attend functions, at the end of the day I was still able to go home to him and share the details. It kept him "involved" and allowed me to share the accomplishments of our children with my husband. On this very important day, I missed him terribly. I kept replaying the day of Courtney's birth in my mind and how SO very proud he was to be a father and how much he looked forward to seeing them both  grown up. Like other parents, we often wondered what our children would want to do when they "grew up", what profession they would choose and how they chose to live their lives. Mike had lost his parents at a reasonably young age (23 and 25) and he wanted to be THE BEST parent ever to his children. He wanted so desperately to be there for them. All this was running through my mind as I watched Courtney walk across the stage to graduate.
I could not have been more proud of her. Despite all the nights she spent at the hospital with Mike, all the time she helped care for him, all the time her mind was elsewhere as she watched Mike's health decline, she still excelled in college. She could have very easily gone down the "poor me" road and given up trying, but she didn't. I guess it was much like our attitude in caring for Mike at home. It could have been much easier had we made another decision, but that was a road we chose not to take. There were days when it was beyond anything we could have ever imagined, when we fought to hold it all together, but we continued to push forward and fight.
I am so proud of both my childen and can't wait to see what the future holds for them. 

Mike's Legacy

While it's easy for me to say that my children are one of Mike's most important legacies, I was touched today in the oddest of places to learn of another.
I went to my doctor for my yearly check-up (yeah 52 pounds lighter!). As I was checking out, the receptionist asked me how my husband was doing. She quickly reminded me that she had remembered our story when it appeared in Newsday. I do remember her talking to me about it right after it came out. It was the usual conversation about how shocked she was about Mike's age when diagnosed and how touched she was by the care the kids and I gave him. I made it through the sentence when I told her that Mike had passed away last February. She offered her condolences and proceeded to tell me about a friend of theirs who was just diagnosed at the age of 46! (It still amazes me to this day that not enough attention is being paid to the increase in number of people being diagnosed with Young Onset Alzheimer's Disease. I won't go into that here, but I will save my frustration for our annual visit to Washington DC in 2 weeks. This is when I vent to our Senators and Congresspeople).
The receptionist started to tell me about a wonderful day program this woman's husband takes her to. She said they play basketball and dance. It's geared toward younger people with Alzheimer's. Here is where I choked up.
I explained to her that this program was inspired by Mike. When Mike originally went to the regular day program at the JCC in East Hills, he did not fit in. Most patients were older, so they watched Lawrence Welk and played word games. Needless to say, Mike resisted going, and after only a short time, the program director knew something had to be done to help all the "Mikes". Fast forward a few years and Let's Do Lunch came into being. Mike's illness progressed very quickly and he was never able to take full advantage of the new program, but he was the inspiration. It comforts me to know that Mike's suffering was not in vain. Now other families can rest easy knowing their loved ones are in a day program specifically developed for them.
I am so humbled knowing that another family's life has been made a little because of Mike. He will ALWAYS be our hero.

Genuine Happiness for Others

For the 11 years Mike was sick, we very often heard about friends and family taking trips, or even doing what seemed like mundane things to them, but would have been treats for us, that we were never able to do. We were always very happy for them. Just because we weren't able to do things, didn't mean that we begrudged others from doing fun things. In fact, we often lived vicariously through them. I can honestly say that I was always happy when people close to me, true friends and family, were able to have fun and enjoy themselves.

Unfortunately, we are finding that not everyone feels the same way for us. Since Mike passed,  the kids and I have been able to do things we were unable to do for 11 years. I would like to know that those around us can be genuinely happy for us, but this is not always the case. For years Courtney would hear all about her friend's trips, cruises all over the world and she would be a true friend and be happy for them. Now every time we have the opprtunity to go somewhere or do something, they make comments or even just ignore her excitement.

I try to tell her not to worry about what others think or say, but sometimes I can't follow my own advise.
A few weeks ago, Courtney put her name in to win/get tickets to the Live! with Kelly and Michael After Oscar Show in LA. Last Thursday she found out she was chosen. At first we thought it would be  impossible to go. She needed to take 2 days off from school and work, I needed to take two days off from work -  and then there was the cost. Courtney even tried to reach out to her friends to see whether any of them wanted to go with her. They all declined. Even after being asked, and had the opportunity to go with Courtney, they cannot stand the fact that Courtney will be in CA the day of the Oscars and attending a TV show that showcases Oscar winners. Instead of being good friends and being happy for her, they are jealous. Yes I understand this is a normal emotion, but when they KNOW that Courtney was always happy for them, despite years of her not being able to do so much  - SHAME ON THEM.

I also often get the hesitated reactions when I share exciting news. Truthfully.... it hurts. I'm not sure they  realize it when they react this way, but just once I would love for people to say , "Good for you. Enjoy yourselves" and have them really mean it. Normally what comes next is, "we haven't been away in years", "I wish I could do that" "maybe next year I'LL be able to go away".

Shame on anyone for begrudging my children the opportunity to do anything. More than most people, they deserve to be happy. Their future is unknown due to the genetics of Alzhiemer's Disease. They deserve happiness and those around us who love us and care about us should know that. We were always happy for you, please now be happy for us.

.

Daily Struggles

The kids and I got through the holidays as well as I expected. Christmas was quiet as it was just us. It's times like this when I wish I would have been born into a larger family - or that our extended family stayed in touch. I miss the days when I was younger when we would visit each side of the family - one side on Christmas Eve, the other on Christmas Day. This year, our Christmas Eve was like any other night. We did get to go Midnight Mass for the first time, which was really nice. New Year's was a different story. My sister and her family came in, as they usually do, for our annual New Year's bash. I use that term loosely, but we have so much fun nonetheless. Even though it's just us, we plan our menu and activities very carefully and come midnight you wouldn't want to live near us. We are loud and usually covered in silly string. The craziness did not take away the emotional aspect of the clock striking midnight. Every year, for 11 years, the kids and I would quietly go into Mike's room, give him a kiss and gently wish him a Happy New Year. Our night felt incomplete without this routine.


As it nears the one year anniversary of Mike’s passing, I have become understandably more melancholy. Mike was ill for so long, but I now find myself missing the “well” Mike more than I ever have. I think so much about his strength, his smile, his laugh and the way he always seemed to calm my fears. Honestly, I’m getting tired of doing everything on my own. I have been so stressed lately with “life” stuff and wish so much that I had someone to help me. I need to continue to make important decisions on my own: handle all the finances, managing all the paperwork for the kids education, the house repairs/problems and upkeep, and the car to name a few. Right now I am juggling so many major issues that I have been losing sleep each night.

Financially, we were in bad shape when Mike was alive, and that was WITH his social security disability. Without it, I am forced with live off his Life Insurance Policy. When we opened our policies, the amount seemed like so much to us. After all we had just gotten married, we had no children and had no idea what our future would hold. Now, as I take money out each month to pays my bills and see the balance going down I am beginning to panic. Just this weekend, I purchased a new “used” car. I was driving a 2001 Chevy Venture with 108,000 miles on it. It had treated us very well through the years, but I have been having a problem with the “check engine” light and it would not have passed inspection. Added to that the bearings needed to be replaced and my transmission was going. I could not see putting a few thousand dollars into this car when I could put it toward a newer car (My pleas to Ellen DeGeneres fell on deaf ears (LOL) All logic told me that buying this car was the right decision and my beautiful children constantly reassured me that I was doing the right thing. After two months of researching on line and pulling my BIL in for his expertise, I gave in and visited car dealerships last week. After test driving three cars and comparing all the important info (Mileage being the #1), I decided on a car. I know I should be enjoying the excitement that a new car brings, but I have been nothing but stressed. This car took a big chunk out of our savings and that’s all I can think about. I know in the long run it will (hopefully) save me so much in repairs, but as with any car, new or used, NOTHING IS GUARANTEED. Beside the financial impact, the kids and I are strangely dealing with an emotional loss. Whereas most people tend to lease cars and keep them 3-4 years before trading in for something new, our van was with us for 12 years!! It was an extension of us. Mike and I bought it together immediately after he was diagnosed. There were so many fun memories as well as sad memories in that Venture: A 10 hour trip to PA (that should have been 3) that left 6 of us giddy, to bringing Mike into the car when he got agitated while we were out. So many trips back and forth to the hospital and the car ride to pick up our new puppy at the time - Gizmo. The kids each learned how to drive in it. It sounds silly we know, but we will miss that Venture. I decided to donate it to a Veterans Group.

Along with dealing with the car issues, I’m still dealing with my homeowners insurance company about my claim for roof damage from Hurricane Sandy. Between going back and forth with the adjuster as well as the roofer, I feel totally out of my element. The insurance company wants to give me only enough money to cover the BACK of the house (since that was where all the damage happened), while the roofer said the house would look ridiculous being ½ and ½ - since they don’t even make the shingles that are currently on my roof now. Adding insult to injury, the original claim check that the insurance company sent out was made payable to Mike and I (even though my local insurance agent was notified when he passed away) - so I had to fax his Death Certificate to them in order for them to reissue a new check. Another reminder of all that I lost! Bottom line, I am still waiting on the insurance company to decide whether they will cover the replacement of my entire roof.

It’s also that time of year when Financial Aid forms need to be filled out for college. This reminds me of my credit report that I needed to work on that I never did. If I had a spouse to share some of the responsibilities, I would not feel so overwhelmed. There just seems to be so many major issues that I am trying to work on right now. My sadness comes from the fact this is my reality now.

Still, I remain steadfast in my FAITH. When I think about all that we have been through and how God has been with us every step of the way, I remain hopeful. Surely there were times when I didn’t think I could make it through one more day, but the fact of the matter is that I did.

Holidays

“Through the years we’ll always be together..if the fates allow,
Hang a shining star upon the highest bough, and have your self a merry little Christmas now”

For three days in a row, those were the words I woke up to as my clock radio went off. I have been struggling for the last few weeks regarding the upcoming holidays. I took this song playing repetitively as a sign from Mike that he would be with us and that I should go ahead and enjoy Christmas.

With the passing of Thanksgiving and the beginning of the “Holiday Season” I had been finding myself in a constant state of struggle. Sometimes I feel that because the kids and I, to the outsider looking in, seemed to handle Mike’s illness so well for so many years, everyone feels that we are handling his passing the same way. I sometimes think that because outsiders saw us living our lives, going to work and school and laughing, instead of walking around in a constant state of despair, they maybe thought that we were more than “OK”. The fact of the matter is, we’re struggling. My children do not have their dad and I do not have my husband.

Even though Mike was sick for 11 years - 8 of those years he was unable to walk and talk - we still had him home with us. We could touch him, talk to him and on the lucky days, see him smile. Emotionally, we don’t have that now.

I struggle on all levels with the holidays. I always found it difficult to “celebrate” Christmas while Mike was sick, but I found myself doing everything I could to make it special for the kids and Mike (it was his favorite holiday). As in years past, Courtney again is especially very much looking forward to Christmas. When I talk about my dismay at decorating, shopping etc, she gets upset. I know she wants to carry on in her dad’s footsteps, and enjoy every minute of the holiday, but I’m struggling. I want to enjoy everything, but the reality is I’m having a hard time.

I’ve never been one to feel sorry for myself. So many people have it so MUCH worse, but the truth of the matter is, I am a widow. I no longer have my husband in my life. The man I thought I would spend forever with is gone. I think back to last Christmas when I had a gut feeling that it would be Mike’s last. He looked worse than usual, yet when we took pictures and opened gifts, he seemed so “awake” and alert. I wonder whether he knew it was his last and whether he was trying to take in every single minute.

Since Mike’s wake and funeral, only a handful of friends have stayed in touch, which was the constant while he was sick. The funeral was crowded with old co-workers and friends, all sharing stories of the Mike they all knew and loved. The kids and I very much appreciated everyone attending and sharing their stories, but in the months since, only a few have remained in touch. The others have all continued on with their lives..

The holidays are already bringing some difficult emotions to the surface, emotions that some seem to forget that we continue to struggle with. The realization, that unbeknownst to us, last year was Mike’s last Christmas and then the reality that this will be our first Christmas without him. No doubt, the kids and I will survive. Our faith has carried us this far and I know it will continue to carry us through whatever God’s plan is for us. Mike’s love will remain with us and his spirit will never leave us. And whether that song from my radio was a sign from Mike or not, we will do our best to honor his love of Christmas and everything it means.

Long Island Alzheimer's Foundation Honor

Every year during the month of November - Alzheimer's Awareness Month - the Long Island Alzheimer's Foundation (LIAF) holds a candle lighting ceremony to honor those suffering with the disease and the caregivers who care for them, as well as remembering all those we have lost to this disease.

I was invited the day before, and I honestly didn't think I would be able to go because I had been sick the entire week with a very bad sore throat (which a visit to the doctor yesterday revealed tonsillitis and swollen glands). My heart tugged at me though because I wanted to go for Mike. Courtney decided to miss her last class and we decided to go.

As always, the ceremony was beautiful as well as emotional. I had taken Mike to LIAF when he was first diagnosed, but at the time they thought he would fit better in another day program at our local JCC. LIAF's facility is beautiful and they have a wide range of programs for people at different stages of the disease. Their staff has always been kind and welcoming to all.

In the middle of the ceremony, one of the program directors, Alana, went up to the microphone and began talking about our family. Unbeknownst to Courtney and I, they planned a small and touching tribute to Mike, the kids and I for the the advocacy work we do. I have received a number of awards over the years, and they all mean something very special to me, but honestly, this one held a special place in my heart.

I had just been explaining to my co-workers how disappointing it is that the different Alzheimer's organizations we have worked with always seem to be at odds with each other. Although their goal of caring for patients and supporting caregivers are the same, there is always a competition there that sometimes becomes unsettling, to say the least. At this tribute though, Alana had absolutely NO PROBLEM, talking about all the work we have done to raise awareness for ALL organizations - then she began to mention: LIAF, Alzheimer's Foundation of America and the Alzheimer's Association. I couldn't believe what I was hearing. If I had ever heard one organization talking about another, it was always in a derogatory way, but not Alana. She completely understood that we will help any organization, in any capacity we can, if we know it could help someone else struggling with Alzheimer's. Personally, that's what I feel all these organizations should do, but sadly, that's not the case.

Needless to say, I was so surprised, shocked and overwhelmed with emotion, that I couldn't even properly thank the staff at LIAF when we were handed the award - and I felt terrible about that. I thanked those I could afterward and pray that when Alana reads this (I know she will) she will once again express our sincerest appreciation to the staff.

(Courtney and I are pictured with Alana Rosenstein and Fred Jenny)

Hurricane Sandy

A week before most news stations picked up on the story, my nephew, Steve Travis (my personal meteorologist) contacted us to let us know Long Island was expected to be hit big by a significant  hurricane the day after Mike's and mine wedding anniversary (10/28. We were married 24 years) He was right....

This is a house two doors down from us and scenes like this took place all across Long Island, Queens, and New Jersey. I didn't sleep very well Monday night (10/19) as winds picked up to close to 90 mph. I admit it, I was scared. My brother went outside to smoke and we saw roof shingles fly off my house and heard our neighbors tree crack before a huge branch split and fell. I was so concerned about a big tree next door coming down on our house. We lost power at 3:15 p.m. that Monday. The next morning I was relieved to see that no trees on our property had come down, but after we walked the neighborhood, we were shocked to see what our town looked like. It was a true war zone. Roads were impassable with downed trees and wires. I'm not talking trees that were cracked (although that did happen in places), but entire trees, ripped from their roots, pulled up by winds with the grass around them looking like carpet. It was also dangerous as there were so many power lines lying all over. An estimated 950,000 people on Long Island were without power.
My brother left for work the next day and did not come back until yesterday. It was Courtney, Gizmo and myself - the 3 Musketeers - staying at home without power for 7 days.

This is was what it looked like for us when we walked the dog each night. We needed to take our flashlights with us because we couldn't see too far in front of us. Houses were being robbed as people left to stay with relatives, generators were being stolen and there were reports of gas being syphoned while people slept. Because the ports of New York were closed, gas delivery was impossible. The average wait for gas was 3-4 hours. Thankfully, Courtney and I heeded the warning and filled our tanks before the storm. Unfortunately for others, as well as those with generators, gas was hard to come by. Courtney and I would bundle up each night in layers (sweatpants, 2 pairs of socks, T-shirt, hooded sweatshirt pulled tight around our face and gloves) and slept under many blankets. Sleeping wasn't really an issue, it was the time before that was hard. I was so blessed that the only issue we had was our roof - which will now have to be replaced. Our initial estimate is $5,300.00 and we're waiting on the insurance adjuster. There are so many families without anything, so for us to complain seemed selfish.

One of Courtney's professors didn't seem to care that there were so many without everything and even more without power - she had a deadline for her paper and I took this picture as she was writing it by flashlight, freezing cold hands and all.
The lowest it got in our house was 49 degrees and by Monday I was at my breaking point. Monday was 7 days without heat and while I was walking Gizmo by myself, I lost it. I began to cry and prayed to God that our power would be restored soon and our heat would come on. As I walked into the house, my prayers were answered and I cried like a baby. Our power came back on at 5:55 p.m. I know I am a strong person, but after one week of no heat, my body and mind were exhausted. From the very beginning of the storm, my thoughts went immediately to Mike. What would I have done if he were still at home with us? He needed power for his oxygen, nebulizer and processed food. There was a story just today in the newspaper of a man in a similar situation as Mike (he was a stroke victim). Even though he was on a priority list with the electric co., as of today, he and his family still had no power. What would we have done???
By Tuesday of this week, a good part of Long Island's power was finally restored. I believe 150,000 were still in the dark, but that was much better than 950,000. In my Town it was down to 700, then this happened on Wed....

 Nor'easter Athena hit and what was supposed to be a "dusting" of 1-3 inches turned into 6-8 in my area. The snow was very heavy and wet and more trees and lines came down. Those without power in my Town shot back up to 2300. Every house on my block was back in the dark, with the exception of us.
There is a certain measure of guilt that stays with you when you know your friends are back in the dark and neighbors are back in their cold houses. The "experts" are saying there is a rise in acute traumatic stress syndrome (more temporary than Post Traumatic) and I believe I am suffering from it. My stomach has been uneasy for he last few days because we're being told that if you have power, you may lose it so they can restore power to those without. I turned the heat up to 78 in my house "just in case". When the lights flicker, my heart starts palpitating. I have yet to restock my fridge for fear of having to throw away more food if my power goes out again.
NY finally decided to ration gas with the odd/even program and the gas lines seem to have gotten much shorter. I only waited 50 mins for gas on Wed. and Courtney only waited 12 mins yesterday.
I hear about the concerts and fundraisers being held and wonder if the people that truly need the help will get it. I will NOT donate to the Red Cross because that money does NOT go to the families affected. It goes towards future emergencies. It did very little for Katrina victims as many houses down there were never rebuilt. I will donate on a local level to help insure that Long Islanders, and the towns that meant so much to us will be rebuilt.
God Bless all those who were affected by Sandy.