California Here we Come...

This past Monday Courtney, Brandon and I came home from our trip to California. 11 days out of the house, away from the daily stresses and routines that were really beginning to create more stress in our lives. This trip was not without it's rough spots. I've seen an anger in Brandon that concerns me - especially since he voiced his opinion to me a few times how angry he was that I did not call him IMMEDIATELY upon Mike's death. I wonder whether this anger will dissipate or whether it will present itself in other ways. But despite those rough spots, I believe we all enjoyed our time away.
Even though we were in California, and our days were filled entirely each and very day - there were more moments than I anticipated of feeling Mike's absence and missing him SO much.

 While I was parasailing on Catalina Island I started to cry because I was so high up in the sky I felt myself closer to Mike. I had a conversation with him that immediately turned to tears.  The peace and quiet up there was deafening and I felt myself feeling truly alone. The realization that this was my future was emotional. Walking around Disneyland I thought of Mike's first time at Disney World for our honeymoon.
 I had been there a few times before, but he had never been, and I enjoyed each and every moment watching him revert back to his childhood and enjoy all that was around him. My mind immediately went to the three times we had taken Courtney and Brandon there and how excited he was at seeing the kid's reaction to the spectacle around them. We saw Cirque Du Soleil - which Mike and I had taken the kids to together. Although the shows were different, I remembered how much he loved the acrobats and clowns. Alcatraz would have been right up his ally and listening to Brandon complain about going to see "the stupid Redwoods" I heard Mike's voice saying the same thing. I was very upset with Brandon that day because he gave me such a hard time about going to Muir Woods to witness the beauty of nature, but I guess it was because I knew I would have had an equally difficult time with Mike. The trees were beautiful, but not a place he would have thoroughly enjoyed being.

Seeing all the families walking along Pier 39 just brought a deeper sadness over me, but I did my best to enjoy the moment with the kids, not knowing when the next time would be that we would be together like this.
We arrived home at 2:40 a.m. on Saturday to find that my BIL had spent a week at our house while we were away, painting and organizing. Four days later and I'm still in somewhat of a shock that he would take the time to come in from PA and work so hard for us. What did we do to deserve anything like that? He wasn't the only one who worked - my brother helped as well as my mom. My sister and older niece conspired from PA - the entire family was involved in this conspiracy spearheaded by my BIL. The kids and I are still trying to find things. He organized so well, we feel like we just moved in.
This Saturday we'll be moving Brandon back into school. His classes start on Monday. Where did the summer go??

I was looking forward to the summer with the kids to talk about and try to heal from the pain of Mike's passing. Instead, Brandon spent most of the summer with his friends and Courtney worked alot. I didn't get to talk to them as much as I would have liked, but I also didn't want to push them any more than necessary. We visited the cemetery again yesterday before Brandon went back to school and we look forward to the day when the headstone will be completed.

This past weekend, the kids and I held our Annual Lemonade Sale for Alzheimer's - it was also 5 months since Mike passed. The "anniversary" date made it that much more important to us, which is why we had a very rough start to the day. Tensions were very high as we considered canceling the sale. We had always been blessed with beautiful weather, but this year we woke up to the sound of thunder. The forecast was not good and I even called upon my very own personal meteorologist (nephew Steve) to see if he could give me anything optimistic. He couldn't. It called for a 30% chance of scattered thunderstorms all day. Added to the fact that it was 5 months since Mike passed, my sister and her crew came in from PA to help us. They never had the opportunity to experience one of our sales and we thought it would be fun for all of us. This combination was an even bigger reason why we wanted this day to be a success. We listed the start time as 11:00 a.m. Finally at 10:40 I made the call to "go for it". Courtney had baked all day on Friday and I knew if it wasn't that day, we wouldn't be able to have it this year. Despite reports that there were torrential rainstorms (with flooding) only one town over from us, we held our sale the entire day with only 15 mins of a slight mist. I am so pleased to report that we made $1,048.29 and counting.......... For the first 1/2 hour, no one bought anything, they just stopped and gave money. My sister was on the opposite corner from me and I looked at her and realized that neither one of us could hold back tears. It leaves me speechless that there are SO MANY poeple out there wanting to help. The entire day people would stop to donate and tell stories about their loved ones who had the disease or passed from it. Many people thanked US for doing what we did. I am absolutely positive that we had help from above that day - to keep the rain away from us so we could have a successful sale.
Each year after sale, I have a BBQ for Courtney and Brandon's friends who spend the day helping us raise the money we do. I had just finished cooking the burgers and dogs, their friends just got their food and just sat down to eat when the heavens finally opened up on us. After a mad dash into the house to finish eating and play some board games, all were fed and satisfied. The rain had stopped about an hour later and they all went back outside to enjoy the rest of the night. My children have a great bunch of friends.
The concern for having the lemonade sale last weekend stemmed from the fact that this weekend will be crazy as the kids and I will be packing for our 11 day trip to California! (The Saturday after we get home, I will be bringing Brandon back to school in CT). We are looking forward to this trip very much, but it is understandably bittersweet. I doubt we will ever be able to take a trip like this ever again, so we will be savoring every moment. Five days in Los Angeles (Disney, Cirque de Soleil, parasailing/zip lining, Walk of Fame etc) and then 5 days in San Fransisco (Alcatraz, Muir Woods, Hauted mansion, Ghiardelli Square etc). I haven't been saying "I can't wait" because I know in the blink of an eye it will all be over as well as the summer. I look forward to making happy memories with Courtney and Brandon. With Courtney graduating from college next year, I have no idea when I will have this time with them again.

Trying to Find My Way

Since my husband Mike passed away I have been in a strange place of limbo. For 11 years I devoted my life to caring for him. Alzheimer’s was an every day conversation and the disease controlled our lives, whether it be a problem with an aide, an illness or insurance issue - Alzheimer’s was always at the forefront of everything.
Now that my husband is not here, the direction of my life has changed and Alzheimer’s no longer rules our lives. It is still a constant in our lives and I still advocate, and I will continue to do so until a cure is found. This disease will NEVER be far from my heart and soul, but the ravages of the disease and the havoc it caused, is now gone.

So now I am trying to find my place, my purpose if you will. I have so much time on my hands, I don’t know what to do. I never truly understood how much time I put into Mike’s care, until I didn’t have to do it. The kids and I often discuss how weird it is to not have to be home at a certain hour to help get Mike into bed, or to make sure someone is always home for him. It seems unnatural to us. Believe it or not, four months later and I STILL find myself making plans around Mike’s schedule.

I’m sure this is a natural process and one in which thousands of people go through on a daily basis. We will just need to continue to try and find our new normal. I hope to find a facility in my area where I can volunteer with Alzheimer patients. When Mike was hospitalized, I would feel so bad for patients where it was obvious they had some sort of dementia, yet no one ever showed up for them. I’m sure that scenario plays out in nursing homes each and every day. I would love to be able to donate some time to sit with these people and keep them company - help them feel like their life has meaning, that somebody cares.

Even my writing has slowed down. Caring for Mike created so many obstacles and issues that I could write about and share with others. This allowed me the opportunity to share with other caregivers and possibly give strangers hope and guidance when they needed it. I’m sure there will be a day when I will write about issues that I had dealt with in the past and how they were conquered, but for now, looking back in depth is still painful.

The kids and I have used the extra time to do things we were never able to do. We try to keep busy by doing things sometimes as simple as going to the movies at night. Although money is still a worry, I have made it my mission to plan a vacation for us in August. The kids and I will be visiting California, a trip we had always wanted to do, but never had the opportunity. We are all very excited about it as this will be our first trip in 7 years!

I mentioned money issues above, and as an aside I can honestly say I was absolutely shocked when I found out that I did not qualify for Social Security Death Benefits because I am too young! I have to wait until I am 65 before I can file a claim to receive benefits from my husband, even though he was on Social Security Disability before his death. Things were rough when I had my salary and Mike’s small Disability Income, but now I have only my salary. Alzheimer’s has a way of financially destroying young families like ours. My husband never had the chance to save for retirement or plan ahead. He was 36 when he lost his job - most people are just beginning then. The “average Joe” just doesn’t understand the true depths of destruction that Alzheimer’s causes.

On that note, I am honored to report that I was approved as an Alzheimer’s Association Ambassador to my local Congresswoman Carolyn McCarthy. The Alzheimer’s Association appoints Ambassadors throughout the 50 states who can personally meet with Congressmen/women and Senators on issues important to them. I am pleased that my advocacy work will continue in this way, and look forward to being a part of a team that can make a positive move toward a possible cure.

Surprise Visit

Last night the kids and I were watching TV when the doorbell rang at about 9pm. We don't get many unannounced visitors, and if we do, it's usually our friend Tom. Last night we got a visit from my friend Betsy's husband - also named Tom.
If you remember, she passed away last July from ALS. Courtney and I had just visited her at the the hospice facility and a few hours after we left, we got the call that she was gone. She left behind a husband and two sons.
Her husband and son came to Mike's wake, very sympathetic as to what we were going through.
Last night he came to the house and we all had a nice visit. He had the kids laughing - which is always a plus. We caught up as to what was happening on their end, which seemed like all good things. Betsy would be happy. He also shared news that he met a "woman friend" and was happy to get out and talk with someone who didn't need "zit cream". Betsy passed away on July 4th. The woman he met has a birthday on July 4th and the relationship she was in had ended on July 4th - around the same time of day that Betsy had passed. I told Tom that I truly believe in a higher power and that him meeting this woman, who had so many connections to July 4th, was Betsy's way of giving her approval.
It was nice to see him and catch up and see that it is possible to be happy after the loss of a spouse.

Summer Begins

It's been a while.
Since I last wrote, Brandon celebrated his 19th Birthday (May 14th). For 8 of the 11 years Mike was sick, he wasn't able to go out and celebrate with us, so we always ordered dinner and brought it home. This was the first birthday that we were actually able to go to dinner and eat out. It was bittersweet. We had a wonderful time, despite eating out with two older people (one with celiac disease who can't have gluten) and a brother with bad teeth who finds many dishes hard the chew - and tells the waiters the same. Always an adventure!

My nephew came in from PA to visit with us. Since he had graduated from Penn State and began working at Accuweather (yes, we have our own personal meteorologist!), he has had very little vacation time. We were honored that he chose to spend a few days with us. He, Courtney and I went into NYC to see The Best Man - a play on Broadway starring: John Loroquette, James Earl Jones, Eric McCormick, Candice Bergen, Michael McKeon and Angela Lansbury. The show was great, but the best part was "stage dooring" it and getting autographs and pictures of all the stars! We also went to dinner and hit up some miniature golf (yeah Courtney and I both got holes in one) before it was time for my nephew to head off to his next destination before his vacation ended.

After all that fun stuff it was time to get serious. Courney, Brandon and I picked out Mike's headstone. What a process it was. There were certain things we each wanted on it, but coming to an agreement between us was proving difficult. Then the patient woman helping us suggested that we go outside the showroom to view some headstones that were recently ordered. We all fell in love with one, then went back to the books and mixed and matched certain items to come up with our own unique and beautiful headstone.  It will take approx 6 months for it to be completed. I had not known that the Diocese has to first approve the drawing before it can even go to the stone cutter.
Afterward, the kids and I headed over to the cemetary (right across the street) and visited Mike's grave. We had done some planting a few weeks earlier, but when we got there, we saw what we planted had been mowed down. On Memorial Day weekend we went back and re-did Mike's grave with beautiful flowers and an angel statue. Hopefully all will be there whe we head back on Father's Day.
Father's Day, that will be a day that I do not look forward to. A friend had suggested that we do things Mike liked to do, things that he enjoyed. I thought about that for a moment and realized...Mike didn't have  many opportunities to do fun stuff before he was diagnosed with Alzheimer's Disease. Most of his "healthy" life was before we were married and had children, and that included going out with friends and drinking. Once the kids came along, they were our focus. Courtney and Brandon were Mike's livelihood.  I decided that all of us would sit and watch one of Mike's favorite movies of all time..."The Quiet Man" and have sauerbraten (his favorite meal) for dinner. It would have been a perfect night for Mike.
The other day it was three months since Mike passed and both Courtney and Brandon brought it up. There are days when we feel as though it happened yesterday and other days when we feel like it happened so long ago. There are also days when we still think he will be coming home from a long hospital stay. I've been getting emotional driving home from work also. I keep going back to THAT day when my brother called me and said, "you may want to come home. Mike's not breathing". I stayed on the phone with my brother the entire ride home, asking him to tell me what was happening, begging him to hold Mike's hand to let him know that he was not alone. There are just some days when that drive home brings everything right back up to the surface. Some days are harder than others.
On a different note, the kids and I are beginning to finalize our plans for our much needed vacation. It's been MANY years since we had a real vacation, and seeing the excitement in their faces while they plan this trip has been worth everything. It's been so long since they were genuinely excited about anything. We will be going to California in August - although there is a negative. MUCH to Courtney's dismay, "ellen" will not be filming then, as she is on hiatus over the summer. Yes, this was a BIG disappointment to her, but one day, maybe we'll get there!! I'm sure, despite not seeing ellen, we will have a wonderful time.

Day by Day

It's been a little over two months since Mike passed and it still feels surreal. Yesterday I found a bottle of one of his medicines that I missed, and the waterworks started almost immediately. The date on the bottle was two weeks before Mike passed. I find myself looking at life "before Mike passed" and "after Mike passed". I held the bottle in my hand and thought that the last time I held it, Mike was with us.

Things were so different.

Our dog Gizmo has also taken Mike's death hard. We've found that when we leave, he becomes "depressed" and misses us much more than he had in the past (For the first day we were in Washington, he slept almost all day). In my mind, I try to imagine what he's thinking.....Mike left the house and never came back. He assumes that when we leave, we won't be coming back. He was Mike's constant companion. We got Gizmo to keep Mike company when he got sick, Mike held him on his first car ride home and Gizmo was Mike's constant companion - sitting on his lap frequently. He had seen Mike leave by ambulance many times, but Mike always returned. In February, Mike didn't return and we think he's afraid that we'll do the same.

The end of the school year is approaching. Brandon's last day of classes was today and next week he has finals. Courtney and I will be driving up to CT on Friday to pack him up and bring him home. Courtney's last day of classes is next Friday and she has finals the following week. During the week of her finals, my nephew Steve (our meteorologist) will be visiting us in NY for a few days and we couldn't be happier. Since he graduated and began working full time, he wasn't able to come up to NY for the holidays. Now we'll be able to spend some special time with him and we can't wait!
We've finished painting the living room and our next project will be getting rid of "stuff" at a garage sale in  the beginning of June. There seems to be one project after another and that's OK - it keeps me busy.

A friend our ours is running in the Long Island Marathon on Sunday and asked if he could run "In Memory" of Mike. Of course we were honored and are just finishing up the T-Shirt for him to wear. We are so blessed to have the friends that we do.

One thing is for sure, we all miss Mike terribly. He was such a huge presence and he inspired us each and every day.

All we can do is take things one day at a time.

Alzheimer's Public Policy Forum in DC

This is the same post I wrote for mariashriver.com. I apologize to those who read both.

This past week Courtney and I attended the Alzheimer’s Association Public Policy Forum in Washington DC. Brandon wanted to go with us, but with Mike’s passing, the stomach virus, and the flu, he had missed too many classes. The trip was emotional from the beginning. The last time we attended was two years ago and Mike was still with us. Our goal is always to advocate and raise awareness - not only for funding and research - but also for Young Onset Alzheimer’s. Younger people with this disease are consistently forgotten, but I have vowed to change that.

As much as we were excited about attending, we were equally anxious. Mike’s passing was still fresh and I knew it would be an emotional journey. Before Mike passed, we weren’t sure we would be able to go, as his health was fragile and I didn’t want to leave him. A week or so after he passed, we decided we would go, in Mike’s memory, and fight even harder.

Attending the forum is also physically exhausting. Since we decided to go at the last minute, we couldn’t get a room in the hotel where the forum was being held, so we had to get up at the crack of dawn each day to allow us time to travel so we could get to the scheduled programs on time. Our days began at 6a.m. and ended at 11:30 p.m.

Monday evening's candle lighting ceremony, which usually takes place on the steps of the Lincoln Memorial, was moved inside due to inclement weather. Looking out at the sea of lights, listening to the performer sing “Imagine” was almost too much for me to bear. Getting upset didn’t embarrass me because I knew that each and every person in that room could feel my pain. Almost all who become advocates have done so because they have been personally touched by this disease, or because they have the disease themselves. Once you have experienced Alzheimer’s, there is an unmistakable bond that forms with others who have traveled the same road. If someone had seen my tears, they would have understood. “Imagining” what our life would have been like had Alzheimer’s not invited itself in is always emotional for me. Mike deserved more, my children deserved more, I deserved more.

The second day of the conference consisted mostly of “break out” sessions where we were instructed on what to ask of our Representatives and how to best reach out to them. Our group from New York didn’t have to work too hard because our Senators and Congressmen/women are all on board with our requests. Listening to other advocates talk as they explain how they are constantly dismissed by their Representatives and told they cannot support these bills made us angry.

At one of these sessions, we listened to former Senator Dennis Moore from Kansas. He had been one of those Senators who our advocates went to for help. He spoke about his recent diagnosis and what it meant to him and his family. No one is safe. Alzheimer’s does not discriminate and we see proof of that over and over again. It was also at one of these sessions that I met my new friends Matt and Elizabeth from California. Putting faces to people I’ve only known through e-mail is always a pleasure.

The second night was capped off by a dinner and this year we were told over 950 people attended. Meredith Vieira, Jane Seymour, Pat Summitt and Maria Shriver were all in attendance. What an honor it was to see these people take time out of their lives to participate in this conference.

Legendary Tennessee women’s basketball coach Pat Summitt and her son Tyler inspired all in attendance when she received the Sargent and Eunice Shriver Profiles in Dignity Award, presented to her by Maria Shriver. Another emotional moment for me was when I saw Jane Seymour. Mike was in love with her and she was his crush. When most young men had crushes on Farrah Fawcett, Mike loved Jane Seymour. There was always friendly teasing throughout our married life about this. When I saw her, I felt that Mike was with me, smiling down from above. I was also able to stop by Maria Shriver’s table and talk to her personally and thank her for all that she has done to help our cause, for her genuine concern for all who are dealing with, or have this disease, and for reaching out to me after my husband’s passing. She was correct that night when she told me that it’s often the small things that make a difference.

The last day was by far the hardest. We started out at the Capitol buildings at 8:00 a.m. and our meetings ended at 3:00 p.m. with six scheduled appointments throughout the day. I told our story over and over again. I kept it together until the part where I had to tell them that Mike passed away in February. Reliving our journey is emotionally exhausting, but it is a necessary evil in getting the point across as to the horrors of this disease. As previously mentioned, we have the full support from our Senators and Congressmen/women here in New York, and for that we are deeply grateful.

After visiting our Representatives, Courtney and I decided to walk even more (what were we thinking!) and head over to see The White House. It must have been 30 years ago since I was there last, yet standing there and realizing the history in that one building was still amazing. With extremely achy feet, we headed back to our hotel to change, then took a cab ride back to Union Station where we waited for our train home. We walked in our door that night at midnight. It was a long and emotional three days.

It is empowering to do what we did, but I pray for the day that I will never have to do it again. As the caregivers, patients, and all those who have lost loved ones yelled on Tuesday night, "THE END OF ALZHEIMER'S STARTS WITH ME".