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.

Simple Truth

I posted this on Facebook, but I felt the need to post this simple truth here also:

In my entire life, I don't think I have shed as many tears as those that have been caused by Alzhiemer's Disease.