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.

The Process of Grieving

I am finally beginning to understand why, after the death of a loved one, they call it a “grieving process”. I just wonder how long this process will last, or if it will go on indefinitely.


I believe the steps of grieving often depends on who it was that you lost. When I lost my dad, I was devastated. He and Mike had been so close and it broke my heart when I decided to NOT tell Mike my dad had passed. At the stage of the illness Mike was in at the time, I just felt it wouldn’t benefit anyone. To this day though, I feel like I never fully grieved my dad’s passing. I tried not to cry in front of the kids or Mike, so where did that leave me. I needed to be strong for everyone else, when in fact I just wanted to scream! I think about my dad every day and I miss his strength and guidance. The life I shared with my dad and those experiences were completely different from those I shared with my husband. I’m absolutely sure the grief one experiences when they lose a child is even more difficult and deep.

My grieving process seems to be similar to that of the roller coaster I often experienced when I cared for Mike. There are days when I feel strong and happy and days when I feel so depressed and lonely. The day Mike passed I was beside myself, more emotional than I thought I would be. I had 11 years to prepare for that day but I found out that no amount of time is enough to “prepare”. As weeks passed, I began to come to terms with the fact that Mike was no longer suffering and there were more days when I felt comforted by the fact that Mike was with his mom, dad, brother and my dad - laughing and free of pain. His soul was free and he deserved it.

Now months have passed. Shortly after Mike passed, the kids and I handled his absence by saying it somehow felt like he was in the hospital during one of his lengthy stays. I imagine that that train of thought is why I am finding myself more upset lately. Reality has set into my subconscious that Mike is not in the hospital and he is not coming back. I find myself crying more easily these days and I try to stay busy to keep my mind occupied. It’s the “alone” moments, the part of the evening right before bed or the morning right before I awake that I find myself most teary eyed. Anything can and will set me off. For example:

I use hand lotion before I go to bed each night. The other night, I just couldn’t stop crying as I remembered how each night, before Mike went to bed, the kids and I would message his hands with lotion. Many nights have passed since the day Mike passed away yet I have no idea why that particular night affected me so much, but it did. The smell of the lotion, me lying in the bed where he used to lay, looking at the picture of Mike and I dancing on my night stand - all contributed to my nighttime breakdown and the reality that this grieving process is ongoing.

Breaking down at home is one thing, having something happen while I’m out in public is trickier. When Mike passed away, many wonderful people had Masses offered in his name at our church, most of them being at our favorite Rock Mass on Sunday nights. Going to Mass is always emotional for me, but knowing that I will hear Mike’s name being mention during the intentions makes it even emotional. I remember it was at the 6pm Mass years before when I noticed that Mike forgot how to bless himself. I knew it was a turning point for him in many ways and my heart broke because it was something that was so natural for him until that point. This past Sunday was another of the Masses offered for Mike, and my emotions were already all over the place. During the Sign of the Peace, the young altar servers came down to their families who were sitting right in front of us. I looked at Courtney because it was so cute, but then it came. The floodgates opened. Shortly after Mike was diagnosed, Brandon became an altar server and Mike was so proud. When Brandon first started serving Mass, I would often prod him along from our seats in case he forgot something. I was thrilled that Mike was able to see his son up there doing what he had done when he was Brandon’s age. Now, seeing those young boys come down to their parents, brought all those memories to the surface and my already emotional state was weakened. I thought I did a good job keeping my tears under control, but Courtney noticed and I was embarrassed to think of how many others had also seen this.

Beside these unexpected bouts of sadness, understandably, there will always be the situations and events where it will be natural for me to become emotional.

Sunday October 28th will be mine and Mike’s 24th wedding anniversary. It will also mark 8 months since Mike passed. I predict that it will not be a good day.

I am happy that the kids and I will be at my sisters for Thanksgiving. When Mike was with us, we always timed eating our dinner around Mike’s schedule. We would eat while he was napping, so we could all sit down together. This year will be our first without him and I will be thankful that I will not be at home.

Obviously, I am dreading Christmas this year. While the kids like keeping up traditions because it was Mike’s favorite holiday, I know we will all have trouble this year. My mind immediately goes to last Christmas and how “alert” Mike seemed to us - how we all took pictures with him, not knowing it would be his last with us. None of us knew that two short months after those pictures were taken, Mike would be taken from us. It will be hard for me to decorate and “celebrate” Christmas this year.

The holidays are expected to be emotional but it’s the unexpected moments that continue to catch me off guard. I am learning to accept this process no matter how long it takes. Please be patient with those you know who have lost someone they love. Everyone handles it differently - be kind. Even though funeral services may have been over some time ago, it’s never a bad idea to reach out to someone to see how they are doing. Their loss will always be felt.

Walk to End Alzheimer's 2012

Yesterday we participated in the Annual Walk to End Alzheimer's. Our team, henley's heroes, raised approx. $3,500.00 (and still counting!) and we could not be happier. Despite a tornado touching down approx. 15 miles from us, the rain and storms held out for the Walk and the day was a complete success. We even had bursts of sunshine, which I know was from all the angels above looking down over us. Courtney, Brandon and I were asked to speak once again during the Opening Ceremonies. As difficult as it was, we were honored and we will continue to do all we can to raise awareness and money to help find a cure for this disease.
Walks are held all across the US and I ask anyone who reads this to donate to their local chapter and help us by supporting their efforts in care and a cure.

 

henley's heroes

                                                                   Memory Garden

Happy 21st Courtney!

Today Courtney turns 21 - where does time go?! Amidst all the sadness these last few months, I am reminded of how blessed I am to have two wonderful children.
Like all moms I can remember the day like it was yesterday. My due date was August 28th and I was almost 2 weeks late. I was scheduled for a non-stress test the day she was born. Mike had left for work and almost immediately after he left, I started having contractions. I called his office and he had to turn around and come back home. It was raining that morning and I was concerned about Mike driving home - he was so excited and ready to meet our newborn. I got to the doctor about 10 a.m., was told I was only 3 centimeters, that I should go home, drink plenty of water and walk ALOT and come back at 12:30. When I got back to the office I was 5 cm and was told to go across the street to the hospital to be admitted and get ready. Mike made calls to everyone who had been as anxious as we were. Because I was two weeks late, I actually changed the recording on my voice mail each day to tell callers that nothing had happened yet. Now we were finally able to let everyone know "it" was happening.
After a few hours, I was given an epidural and the labor pains subsided. I remember my labor nurse telling me that I was the "strong stoic" type. I had not said a word or yelled in pain - compared to the woman in the room down the hall who sounded as though she was giving birth to an elephant. I remember Mike and the doctor watching TV while I was having contractions and being really angry about that. Seriously. Mike made fun of me when I had to push and I was so scared when I couldn't feel my legs for quite some time after the birth. I was petrified that the feeling wouldn't come back and I kept looking for reassurance from the doctors and nurses.
My family all came up to the hospital to see Courtney. The staff wheeled her past them in the bassinet as they took her up to the nursery. I remember Mike being very emotional that his parents were not there to share this most joyous moment with him. I remember being even more hurt for Mike that despite living only two blocks away from the hospital, neither his Uncle, Brother and sister-in-law or Grandmother did not come up to the hospital that night to be with him. Little did I realize then that this was just the beginning of Mike not hearing from his family (During the course of his 11 years being sick, both his brothers only came to visit him once and his Uncle and Grandmother also only once). I realized that no matter how happy Mike was with seeing his newborn daughter, it could not take away the sadness he felt knowing his parents were not there to meet their granddaughter.

Courtney was born on 9/5/91 at 7:14 pm. We were, and continue to be, so very blessed!

HAPPY BIRTHDAY COURTNEY!

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".

Moving Forward

Our life is beginning to fall into place, slowly but surely.
Courtney, my brother and myself have been painting our living room. It had been years since it was last painted, and once the hospital bed, Mike's Geri Chair and the oxygen were removed, I realized the walls were in really bad shape. It's really weird for us to have so much time on our hands. Caring for Mike was just something we did, we never thought about it. Now that we're not doing it, the realization as to how much time we put into his care is amazing even us.
Painting has filled up our the last few weekends, and once we started painting, we realized just how much else needs to get done. I FINALLY got a shade that works for the LR and new curtains. Our old TV had been acting up, so we're getting a new TV. This alone will save us about two feet on one wall. Our big TV is old, it must be about 2 feet wide. With a flat screen replacing it, we will now be able to walk from the front hallway to the LR without turning sideways (maybe an exaggeration, but it WILL gives us more room). I remember the day Mike and I, as well as the kids, moved the TV into the house. We must have gotten it shortly after he was diagnosed and I was trying to guide him in helping me. I remember being very frustrated that he wasn't understanding me. The TV was HUGE and we had to maneuver it through the back door, into the LR and it got scratched in the process. I was so upset that our new TV was scratched. It started showing signs of going a few months before Mike passed. How ironic is it that it's lifespan was so close to Mike's.
The kids are getting back on track at school. Courtney had a little easier time than Brandon because her work is more hands on (film) and easier. Brandon's classes are mostly science and math. He had missed a few days the week before Mike passed when he had a stomach virus. Then he missed 3 days when Mike passed and yet another 4 days the week after with the flu. He was having a very difficult time - dealing with losing Mike and trying to keep up with the schoolwork. He felt defeated even more when he found out that he would have to take one math class over. I tried so hard to explain to him that he should be proud of what he has accomplished, despite all that he has gone through. There are kids that have dropped out a semester of college for even less, yet he stuck it out and is now beginning to get his grades back up. I am SO PROUD of both Brandon and Courtney. Life doesn't allow us any time to grieve. We lose someone, but life goes on and you have get to right back into work and school without allowing yourself the proper time to grieve.
Next week Courtney and I will be going to Washington DC for the Alzheimer's Association Advocacy Forum and this year it will take on a whole new meaning. We had gone 2 years ago, but missed last year (bad timing). We made sure we got there this year (even though Courtney had to work around her class schedule. Brandon of course couldn't make it with all the time he has already missed) so we can once again tell our story to our Representatives so they in turn can relate our story to the people who make the important decisions. It was an empowering experience the first time and we hope our story will strike a chord once again and push the changes that are needed.
My brother-in-law and nieces had also come in for a few days to visit and help my mom clean up her apartment. She's getting older and the simplest of things have become overwhelming. They did most of the work, but Courtney and I were able to get there one day to help them.
The kids and I went to Easter sunrise Mass on the beach and it was the most beautiful it had been in years. The last few years it was rainy and foggy. This was the first time in quite a few that the sunrise was absolutely beautiful. Afterward we had breakfast, then headed to the cemeteries to visit my dad, Mike, Mike's parents and my grandmother. Visiting Mike at the cemetery (actually it was the second visit since he passed) still seems surreal. Our next challenge will be picking out a headstone, but I won't be doing that until Brandon is home for the summer and we can all do it together.
I am also going to be taking the kids on a vacation this summer. It's been 8 years since we have been on one together. I'm talking a REAL vacation, not weekends here and there where we have to run around and not enjoy ourselves. We have our heart set on California, so California it will be. Who knows when we will get to go away again. I learned that lesson years ago when Mike and I went to Hawaii. Mike's dad had passed and he left us some money. We put most of it toward our house, but left out some to go to Hawaii. We got some flack from our families for doing that, since they felt we should save it all. Looking back, they may have been correct, but I will NEVER regret that trip to Hawaii with Mike. It was something he absolutely loved and he talked about it for many years afterward. It held such special meaning to us and I am so glad I got to share paradise with him. If we waited until the kids were grown or when we retired, it never would have happened. Who knows what tomorrow will bring, but this summer we will at least have California!

Forgotten Words

I was going through old files on my computer when I came across this. I remember writing it one day about 2 years ago, thinking that when "the time" came, I would not have my thoughts together in a way that I wanted, to express my love for Mike and my gratitude for all those in our lives who made our journey easier. I decided to post it here, since I just found it and never had a chance to read it at Mike's wake. Thank you.
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I would first like to thank everyone for coming.
These last 11 years have been difficult, heart wrenching, exhausting, to name and few, but they have also been filled with the most joy and unconditional love we have ever experienced. I can say that on behalf of all who have had the pleasure of knowing Mike and loving him all these years, he was our hero. He took care of his mom while she suffered through this disease and when he was diagnosed, his sadness was not for himself, but for his children and what they would have to witness while he deteriorated from this disease. But to all who knew Mike, that was him. He NEVER cared about himself, he was ALWAYS thinking of others.
This journey has definitely brought us all so much closer. No matter what kind of day we were having, Mike’s smile always brought a jolt of energy into the room. On your darkest day, his smile had a way of empowering us with love.
Today we would like to honor Mike’s true personality. He was funny, kind, generous and giving. When he forged a friendship, he took it quite seriously. He would do anything for anyone, no questions asked. He loved to read and do crosswords, often at times, to a fault. His children were his life and he looked forward to sharing a lifetime with them. Unfortunately, that lifeline was cut short, but what he taught Courtney and Brandon during his short time on earth could never be replaced.
As Mike progressed, he required more and more assistance. Courtney and Brandon were always there to help with EVERY aspect of his care, even some that most adults may find "uncomfortable". At night, when we would get him into bed, Mike often became more animated. Courtney and Brandon would often reminisce with him about things he did with them. One of the most memorable funny stories was Mike’s uncanny ability to shoot pencils out of his belly button and the kids found much humor in this. Although this was something Mike had done with them when they were really young, the memory is clear and it always brought such laughter at the thought. One night, I heard Brandon say to Mike, "remember dad how you used to sit with us while we fell asleep, now we’re doing that for you." At such a young age....they got it. They QUITE OFTEN passed on opportunities to go out with friends, and instead chose to be home with their dad, just as he would have done for someone he cared about. By keeping Mike at home with us created a bond like no other, and the love we all experienced will be something that they will ALWAYS have and it will be a decision that I will NEVER regret.
On this journey, we have encountered countless acts of kindness, often times from strangers. As a family, we had first hand experience of God’s true love. Even though we were going through such a difficult time, we were so blessed by all the people that stood by us and supported us. I was constantly reminding Courtney and Brandon how blessed we were to have such "angels" in our lives. I also couldn't’t express to them enough, that these people did what they did out of respect and love for Mike. Their kindness was a true testament to Mike and who he was and what he believed in. I found myself in tears quite easily because I was so humbled by what people had done for us.
I could not go without thanking certain people for their unconditional love and support. Without all of you, this journey that is Alzheimer’s Disease, would have been unbearable. First and foremost, I want to thank my family. I know it has taken a HUGE toll on all of you and I could never thank you enough for all that you have done. My mom and Walter were with us through everything. They lived through the worst of the worst and never said no to anything; My dad - even though he is no longer with us, while he was, he was my strength and my confidante. I KNOW that he welcomed Mike with open arms as Mike began his journey home. My dad was like a father to Mike, since he had lost his own at such a young age; My sister and her family - even though they lived in PA, they were always with us in spirit. They were available at any given moment; My brother - even though he had an extremely difficult time with coming to terms with Mike’s illness, like the rest of my family, he put his own emotions on the back burner to do what he could to help us out; Mike’s grandmother (who was also up in heaven waiting for Mike with open arms) - she had lost a daughter and nephew to this disease. Through all the years of his illness, she always called Mike, When he was able to speak, they had great conversations and when he could no longer talk, she would talk so he could just hear her voice. Mike’s friend Tom - He was a true guardian angel. He made himself available to help with ANYTHING we needed. Mike always considered Tom a true friend, and Tom constantly proved that Mike was correct. Tom has a wife and young children, he works long hours, yet he always found the time to help me with "house" things, things that Mike would have taken care of. I wish everyone here has a "Tom" in their life; Strober, the company Mike worked at for 13 years, Jeanne, Harry, Mike, Richie - they were our collective guardian angels. Contractors who knew Mike also donated time, material and manpower to help us make our home accessible for Mike ( Paul D changed our front room into our "bedroom"). Once again, Mike’s personality made it easy for these people to WANT to help. Mike C did not live close, but he came to our home and shoveled snow in the winter. When we lost heat in 11/06, Strober pulled off a miracle and had a new burner installed, at no charge. While we were waiting for this miracle to happen, they delivered heaters and blankets to insure that we would not go cold. Financially, they helped more than they could ever imagine and their support when we needed it the most, humbled us and made us grateful beyond words; My boss, my friend, Howard E - imagine running a business not knowing whether your only employee would be in on any given day. Not only did he allow me the time I needed for all the doctors, appt., tests etc, he did it without flinching; LIAF, Dr. W K and the Alzheimer’s Association - On some of my darkest days, these organizations and this doctor, made it their mission to make sure that Mike was taken care of. They always pointed us in the right direction.
Early Onset Alzheimer Disease is something no one should have to suffer with. As a family, we will continue to do all we can to raise awareness. Mike suffered with dignity, grace and humor. We will not let his suffering be in vain. We ask everyone here today to help our fight and honor Mike’s memory. We know it would be something he would do for others, and we ask that you continue this fight on his behalf.
Mike was our hero. He was a loving husband, devoted father and a wonderful friend. He will be missed by many, but none more than us. His "being" was our reason to fight and his love is what guided us. There is no doubt in our mind that he is in a better place with his mom, dad, brother, grandparents and Aunt. He is at peace and he is happy. He is free from the disease that kept him silent for so long. Please do not be sad for him. We will all miss him and that’s OK.
　
We thank all of you for the outpouring of love and support. We will ask only one thing of you as you leave here. If any of you know of anyone who is suffering from an illness, please do not be strangers to them. Call them, help with yard work, run errands, anything that will make their life easier. Visit with the ill person, and remember they are still the person you knew before their illness. Do not feel uncomfortable or sad. Now is when they need you the most. Mike would have done this for all of you and we ask that if you are ever faced with this situation, you step up and help in whatever way you can. We ask that you do this in memory of Mike. That would be the greatest gift you could ever give.

A New Normal

This is what I have been telling people we are trying to accomplish. For 11 years, we devoted almost every minute to caring for Mike, now that he is gone, there is such a huge void in our lives. Even though Mike didn't speak for 7 years, his "voice" was loud and he not having him in the house has created a silence we were not expecting. He made us smile, he inspired us, he helped us get through the day. His strength kept US strong.
My day feels empty. I am now beginning to fully understand all that I did for Mike. Without having these things to do, I feel like I'm not doing anything. I feel like I should be doing SOMETHING. For starters, I'm trying to get the house back in order. It will take time, since it wasn't overnight that it got to the condition it is now. In the room where Mike and I slept, I've already started changing things around to make it more comfortable for me. It's been a difficult thing to do emotionally, since I don't ever want to "get rid of Mike" (as Courtney has suggested). I just want to enter a few phase and make it more mine. With all the equipment (hospital bed, hoyer, Geri Chair, oxygen) out of the house, I realize the walls could use painting, which I hope to begin doing next week. It will fill in some of the empty hours and also make things look better.
I guess the reality is this - I thought 11 years would help us better prepare for Mike's passing. It did not.
I've also been dealing with the after effects with regard to finances. Mike had been on social security disability for 10 years. While I knew that I wouldn't get the full amount he had gotten, I thought I would get something. I was wrong. I'm not entitled to widow's benefits until I'm 60 years old. At that time I can then I can call back and request Mike's benefits. I did receive a "lump sum settlement of $255.00" to put towards Mike's funeral expenses. I also received notification today from social security. They want me to RETURN Mike's February payment (even though he got it when he was very much alive) because he's NOT ENTITLED to payment for the month he died (even though he passed away on the last day of the month). I can appeal this decision if I can show that I needed this money to "survive", but how sad that I have to do that. There's something terribly wrong with the system.
On a different note, we continue to be surrounded by family and friends as we navigate our way to a new normal. We are trying to get out all the Thank-You's (over 200 to do) from so many people who have reached out to us during that time. It was also no surprise how many people's lives Mike touched and that alone will always comfort the children and I.
Last night Courtney and I decided to go to the movies at 7:30 p.m. (Brandon was out with his friends) which is something we were never able to do. It felt really odd to be out at the time when the kids and I had to help get Mike in bed.
And so begins our "new normal".

February 28, 2012 ........

This is the day that Mike succumbed to Young Onset Alzheimer's Disease. He was the bravest man I have ever known and battled this disease with dignity, compassion and love for 11 years.

On that day I decided to stay around and wait for the hospice nurse to come. Her regular day for visits was Tuesday, and I was concerned about the fluid Mike was retaining and the fact the he had gone a full day without urinating. I wanted to speak to her about my concerns that his kidneys were failing. She came over around 12:00 and we spoke for quite some time. She explained to me that even though Mike may not be urinating as much as he had, this may be his new routine. She explained that as long as he was urinating his kidneys were not failing. His blood pressure was normal for him (90/50), no congestion and everything else was fine. She told me what to look out for in case he had gone too long without going and when I should call her. I left the house around 1:05 to head back to work. I'm still trying to remember if I gave Mike a kiss good-bye.

At about 4pm, I get a frantic call from my brother. "Karen I don't want to scare you, but you need to come home NOW. I don't think Mike is breathing". Needless to say, the 15 minute ride home from work was the longest of my life. I asked my brother to stay on the phone with me and let me know what happened and what was happening. I told him to hold Mike's hand so he would know he was not alone. My brother had forgotten that Mike was a DNR and he called 911. I panicked and may have come across as angry when I asked him how he could have forgotten. He tried to tell the EMT's to leave, but since the call was made they had to follow-through. In my panic, I could not even think straight about where I had kept the DNR form. Mike's aide had called the hospice nurse and she was heading back to our home with the DNR form, but the ambulance wouldn't wait (Mike's aide said that when he got Mike up from his nap, he was a little gurgly. She was rubbing his head and neck as was usual to calm him down and try to get him to cough. As she was doing so, she said his head went back, his eyes rolled back and he stopped breathing).

When I got home, I dropped everything and ran into the living room. Mike was sitting in his Geri Chair looking peaceful, just like he was sleeping. I knew right away he was gone. I hugged him and kissed him and let him know how much I loved him. He started getting cold. The EMT's started putting him on a stretcher and I began screaming and crying. I did NOT want them to take him to the hospital or to try to revive him (something I felt guilt about later on). I wanted him to stay at home, where we had worked so hard to keep him and where he belonged. They took him out to the ambulance, and I followed them screaming and crying when my dear friend and neighbor happened to be driving by. She asked if they could wait for the hospice nurse and they said no (It turned out as the ambulance was turning the corner, the hospice nurse pulled up the block. She did not chase them, but had the office fax the DNR form to the ER so they wouldn't do anything to revive him). My friend drove me to the ER and that's when the reality of everything hit me.

When I got there, they put Mike in the trauma room, but didn't do anything...he was gone long before he got there. The doctor came out and I asked him what I knew already, "Is he gone?". The doctor simply nodded.

Now I had to tell Courtney and Brandon. I was most concerned with Courtney. As many may have noticed, I had become increasingly concerned with Mike's health. I had a sinking feeling that he would be leaving us sooner than expected - although I hadn't expected it this soon. In the process, I thought it would be wise to try to get Courtney to see what what happening, and away from her denial. That didn't go well and the weekend before Mike passed, we had quite a few arguments over his condition. She had already been upset with me and now I was faced with having to tell her that her dad had passed away. At the hospital, I had myself so stressed and anxious, that I was now being looked after by the nurses. My heartbeat was through the roof and I almost passed out. I was asked to lie on a stretcher and calm down. The anticipation of seeing my children's faces and their reactions was more than I could handle. As much as I hated that Mike was brought to the hospital, I look back and realize that it was better for me being surrounded by professionals who were able to help me.

I was concerned that Courtney wouldn't express her sadness, and I was relieved when she let it all out. She is strong and stoic like me, and I knew if she held in all her sadness, it wouldn't be healthy for her. The next hurdle was trying to figure out how to tell Brandon who was up at school in CT 2 hours away. A friend offered to contact the school to see if a chaplain would go to talk to him, but Courtney quickly interrupted. She explained that had the situation been reversed, she would want to hear this news from family. She offered to call and tell Brandon. She stepped outside so I didn't hear, and I had no idea what was said or how it was said. All I know is that the next day Brandon thanked Courtney. I felt good. Our other friend took my brother on the road trip and they went to get Brandon to bring him home. Brandon waited for them at his friend's dorm surrounded by some wonderful people.

Brandon walked in the door around 10:30 that night, dropped all his stuff and hugged me so tight. My sister soon followed (she was driven to NY by my BIL who then drove back to PA the same night getting home around 2 a.m.). She remained with us until she and her family went back home the following Monday. I could never have made it through without the love and support of both my sister and brother.

The next few days were a blur. Mike and I had long ago agreed to donate his brain to Alzheimer research, so that had to be take care of before we had the wake. It was done very quickly and didn't even interrupt the timing of the services. Next was finding a cemetery. The entire next day was running around between funeral home, cemetery, florist and clothing stores. Why does it always seem that we are never prepared for the outfits needed for funerals?

We were overwhelmed by the amount of people who showed up for the wake, and the outpouring of love and support (physical as well as emotional) we received. If the kids and I ever had any doubt as to the number of lives Mike had touched, we will never have that doubt again. A woman who had a crush on him in kindergarten, two people we never met who followed our story in the newspaper showed up to offer condolences, friends we haven't seen since the day we were married and old neighbors. The list goes on and on and by the time all was said and done, I could not have been more proud to have married Mike.

I am at peace knowing that Mike is back home with his mom, dad and brother. I also hope that my dad was there to welcome him. Ironically enough, a few days before Mike passed, there were two cars parked outside our house we did not recognize who's license plates began with FXE (my dad's initials). When I first saw this, I was unnerved because I thought maybe it was my dad waiting to help Mike cross. Afterward I was convinced this to be the case. Just like the night before. Courtney had been bringing our dog Gizmo to her room at night to sleep (he was being a pain in the neck downstairs with us). The night before, at 2 a.m. Gizmo got antsy and Courtney brought him downstairs thinking he had to be let outside. Instead, he went right into Mike's and my room where she put him on our bed. Gizmo climbed on Mike's leg and layed there the entire night. It was if he knew.

I decided very quickly to get rid of all the hospital equipment (bed, oxygen, hoyer, nebulizer), but it's absence created an emptiness I had not anticipated. We had 11 years to prepare for this and it didn't matter. When people asked if his passing was sudden, I said yes. Even though he was sick for so long, I never ever expected him to go that day.

Not surprisingly, the day after the funeral mass, we all got sick. I developed a sinus infection, Courtney an upper respiratory infection and Brandon got the flu. Courtney and I drove back to CT this past Tuesday night to get him since once he was diagnosed, the school wouldn't allow him in his dorm or the classrooms. I was glad he was home with us where he belonged. We were all sick together, caring for one another. As soon as we call recuperate, we will then try to begin our "new normal". Each night at 7 pm we kind of look lost, as we no longer need to start getting Mike into bed. My mornings are also shorter since i don't need to measure out medication and cook and puree Mike's meals. So much of our life was about taking care of Mike - actually half the kid's lives, this is all they've known.

We'll be fine....eventually. It will take time we know. But one thing is for certain, Mike is free from that broken body that held him down for so long. His spirit is soaring in heaven and he is peaceful at last. He also knows for sure how much he was loved by SO MANY.

Rest in peace Mike, our angel, our Energizer Bunny.

Forever and ever, I love you.

Karen

Our Hero

http://www.newsday.com/news/health/mike-henley-47-loses-battle-with-alzheimer-s-1.3571830

Please click to see the wonderful story our Newspaper did on Mike's passing.

Mike is at Peace

Today, heaven gained a new angel. Mike passed away this afternoon. He was the strongest, bravest man I ever knew ( beside my dad). Even though we will miss him terribly, we are at peace knowing he is rid of his torn and broken body. His spirit is soaring and he's finally back with his mom, dad and brother.
We love you forever and ever....our Energizer Bunny!
Karen, Courtney and Brandon

The Unsung Heroes

As some of you may know, I have decided to take that step into attempting to write a book. While there are quite a few books about Alzheimer's out there, I don't know of any that are about someone being diagnosed as young as 36, nor a family who had decided to care for their loved one at home until the end. The combination of those two unique issues helped me decide that our story should be told.
For the last few months, I have been collecting my thoughts on a tape recorder. I sometimes find my self rambling about one issue or another and it's only then do I realize all that we have been through as a family. Some painful memories have taken up residence in the recesses of my mind, which I can only assume is my mind's way of coping. Thinking about diagnosis, hospitalizations, set-backs and fears made me realize very clearly there are unsung heroes that don't get the full attention they deserve.
They are.....COURTNEY and BRANDON.
Do you remember what you were doing when you were 7 & 9 years old? Our children were being told that their dad "had a disease in his brain that may cause him to do funny things. He may forget things, or act confused, but he will always be their dad". They were being asked to understand a disease so many adults don't understand. They were asked to help out when most adults ran away. Mike functioned pretty well until 2003/2004 - when Courtney and Brandon were 9 and 11. What were you doing at that age? Going to friends houses, parties, being a kid? Our children were asked to help put their dad's shirt on, lead him to the bathroom, cut up his food, tie his shoes - all the things that a dad is supposed to do for his children. I will not say that Courtney and Brandon missed out on everything, but I WILL say they missed out on alot.
At this time Mike was beginning his anger/agitation stage. I remember the four of us in the supermarket. Mike began to get agitated and confused with all the bright lights, music, people talking etc. With a cart full of groceries, Mike started yelling and becoming combative. We got alot of stares from strangers. Instead of our children retreating, they helped me control the situation. Courtney took Mike outside to the car to keep him calm, while Brandon helped me pay and bag our groceries. It was after that outing that I decided Mike was no longer able to go with us anymore, It wasn't worth him getting overwhelmed, or the kids being embarrassed. Strangely enough, neither one of them was embarrassed, but Mike's days of going with us food shopping were over.
This leads me to to next obstacle. Because Mike couldn't go many places, and someone had to be with him most of the time, Courtney and Brandon couldn't go many places...unless of course a kind friend offered to drive them somewhere. They never wanted to ask their friends for rides, they didn't want to feel like a burden, so instead, they missed out on alot. Something as simple as meeting with friends at another friend's house, was impossible unless they got a ride. Going to the movies, parties, it was all the same.
As the kids got older, and Mike's disease progressed, their responsibilities with their dad changed. Now they were feeding him, bathing him, shaving him and help with changing his diapers. Is that something you did when you were 12 and 14? Did you spend countless hours after school in a hospital room wondering if your dad would survive another medical issue? Were you more often than not, dismissed by professionals who thought you didn't know what was going on, just because you were too young? Would you be able to keep up good grades (mostly A's and some B's) while your life was turning upside down? Courtney and Brandon did. They excelled in High School despite all that was going on at home. When I think about the nonsense that most teenagers complain about in their life, my heart breaks. My children have gone to hell and back and very rarely do they ever complain. They are NOT PERFECT, they fight with each other and that does cause some added stress on me, but I am glad they can still act "normal" in the face of all the "craziness".
When you were a teenager, were you aware of mortality? I remember back to my youth and specifically being asked to write a paper in English senior year, "If you had six months to live, would you want to be told"? It was a lesson to make us think about life and the pros and cons of knowing (or not knowing) when we may die. That was probably the first and last time I thought about death. Courtney and Brandon have been dealing with their dad's terminal illness for almost 11 years! They lived through the horror of Mike being given Last Rites and going home from the hospital that night thinking they were never going to see their dad again. Most kids that age are lucky enough to not have to think about these things. My children do.
Courtney and Brandon are my unsung heroes! Their childhood was destroyed by Alzheimer's Disease. The only clear memories they have of Mike are from early in his diagnosis. He never made it to their Confirmations, Graduations. He never got to teach them how to drive and he surely will not be at their weddings.
Courtney and Brandon definitely inherited the best part of Mike. They are caring and loving individuals who look for nothing in return.
THEY ARE MY UNSUNG HEROES!!!

To My Valentine

It is 1984 and I am working two part time jobs as I try to find a full time job after graduating college. I was working at both Friendly's Ice Cream and Channel Home Center. While at Channel, I became close with a group of people and we became like family. We would work hard and go our frequently on the weekends. It was the 80's so it was night clubs, dancing and drinking. It was an amazing time to be in my 20's. In this group of people was one in particular that stuck out to me. He seemed very mature for his age and he was cute. There was a core group of four - 2 guys and 2 girls that would spend the most time together. We were two of that group. In the larger group of friends, we had no idea that some thought we were a couple long before we were. Our connection was obvious to others, but it took some time for us to realize that we had something special. We were hearing rumors that we were dating even though we weren't and we kind of laughed it off...until one night when we were out and heard Bonnie Rait's song "Let's Give Them Something To Talk About". We looked at each other and laughed, as that song just fit our situation so perfectly. He looked at me and said, "so, do you want to make those rumors true?".
And so began Mike's and my relationship. We've been together 27 years, married for almost 24. Never in my wildest dreams did I ever think our future would wind up like this.
Back on that night, which I can remember perfectly, I was just interested to see where the relationship would go. I had no idea that Mike was four years younger than me - and I took ALOT of grief for that. Of course, Mike's friends all thought it was great - dating an older woman. Of course I got the "cradle robber" comments. There was even a brief moment when I thought, maybe this isn't such a good idea. Of course, I decided to stay with Mike.
And stay I did and I wouldn't change a minute.
I know the name of the monster that will eventually take Mike away from me, but I know in my heart of hearts I will have done everything I could for him. That's all one can ask from the love of their life and there's no doubt in my mind that Mike would have done the same for me.
Happy Valentine's Day Mike - I love you. TOGETHER FOREVER.