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.