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.