Friday, February 29, 2008

My Brother

Tonight, the kids went to the school to see the play "Our Town." As much as Courtney doesn't like the play, Brandon will get extra credit if he she bit the bullet and went with him. They would not have been able to do this, were it not for my brother. He stayed with Mike while I took them to the school and he will be here with Mike when I have to leave at 11pm to pick them up.

Last night was the Parent/Student guidance meeting at school regarding colleges. I was able to go to that because Nathan stayed later to get Mike into bed, then my brother stayed with Mike and Brandon until we got home.

On Sundays, my brother stays with Mike while the kids and I go to rock mass at church (from 6-7). Normally Mike's aide leaves around then, so my brother stays so we can get there. He knows how much it means to us.

Tomorrow night Courtney has a party to go to. He will stay again with Mike so I can pick Courtney up when it's over. Granted, most of the time, he just sits in the LR while Mike is sleeping, but anything can happen with Mike. It's a big responsibility and he takes it upon himself when I need him to.

Today he fell at work and bruised himself pretty bad, but he still came over to helped us out. Whenever we have something later at night, if it weren't for my brother, we would never be able to do it. I can't thank my brother enough for all the help he gives us.

Tuesday, February 26, 2008

Updated Blog

For anyone who has visited our blog, I just wanted to let you know that I updated it with some pictures. Just scroll down to old entries: Words that Hurt, Life Happens, Courtney in Washington- and you will catch some new pix. I hope they will be enjoyed by all who see them.

Thank you all for staying connected.

God Bless.

Monday, February 25, 2008


For the most part, I have no problem sleeping - when I can. I am so exhausted each day (both physically and mentally) that when my head hits the pillow, I am out.

My sleep is over when the trembling begins. I lay next to Mike and try to relax him, as if anything I say and/or do can reach the mechanisms of his brain. For about 30 mins. to an hour, his shaking continues. Sometimes, it's so hard, his head jerks forward or back, his shoulder cracks, his legs flail. Then his body relaxes and sometimes he goes back to sleep. I guess he's exhausted from all the movement. If I am lucky, he stays sleeping, if not, the process begins all over again. Every day it's the same thing, always around 5am. At 7am I get up and begin my day - I leave the door to our "bedroom" shut to keep out the noise of the morning. The kids get ready for school, the dog wakes ups and starts barking, and I begin getting Mike's food, medicine and drink ready for the day. After all of Mike's needs are taken care of and the children leave for school, I go take my shower. It would appear that this should be my relaxing time, but quite the contrary. The entire time, I wonder if Mike is OK, if the shakes are continuing. I close my eyes and pray. I come downstairs and open the "bedroom" door about 15 minutes before Mike gets up. If he has fallen back to sleep, it's ALWAYS best for him to wake up on his own. Sudden sounds can bring on more shaking. I pray that he wakes up on his own because I don't want to wake him up. Nathan cleans him up and gets him dressed. I help Nathan get Mike out of bed and bring him into the living room. If I am lucky, Mike will give me one of his BIG smiles, sometimes even a laugh, before I go off to work. That ALWAYS gives me the strength I need to get through another day. And so goes another morning at our home..................

(This picture is of Courtney and Mike a few nights ago getting ready for bed. He leaned over her and I placed his arm around her. It was so cute).

Tuesday, February 19, 2008

Stepping Away

Let me first begin by saying that when I write here, I do not intend for people to feel sorry for me. I blog our life and my feelings and emotions regarding our struggle with Early Onset Alzheimer's Disease to bring the reality of this disease home. So many people know so little about this disease and I wanted to change that. Believe it or not, there are STILL people out there that view Alzheimer's as a loss of memory, confusion and agitation. While those are all components, they are not the sole symptoms. When I began this blog, I also hoped that it would be read by many, in order to raise awareness so that one day we may find a cure.

I have been having a big problem with my nervousness regarding Mike's jerks, ticks, shakes...whatever you may want to call them. For some reason, I cannot shake the fear inside that these may once again lead to a seizure. I have never felt like this before. I haven't slept well in weeks. When Mike sleeps very soundly, I know his morning will be filled with sometimes violent body thrusts. My heart races and my stomach drops, for fear of what's to come next. On the occassion when he doesn't sleep well, that means he's having these movements most of the night - in which case I am still on edge waiting.

What I began to do is step away. Since I know Mike will be OK, when he starts to have these tremors, I leave the room. This morning I got up at 5:30 a.m. and went to sleep on the couch. This way, I do not have to be right there, feeling his tremors, waiting in fear. At night, there are times when I will not go to bed until I see that he's calm. Is this bad? I don't know, but I do know that it's what I need to do to keep my sanity. All common sense tells me he will be OK, even if he does have another "S". Why can't my mind accept that?

In stepping away from Mike, it also leaves me feeling guilty. I have been there with him through EVERYTHING, often times with no sleep and quite frightened. I always tell him that I will never leave him and that I will ALWAYS be there for him. I feel like I'm letting him down because I cannot get my mind to let go of this fear. I am with Mike whenever I can be, but until this fear subsides, I will need to step away until his tremors stop.

Tuesday, February 12, 2008

Lack of Sleep

Two weeks ago, Mike had his 3rd grand mal seizure in 3 years. While I am grateful that it has only been 3, they have left an indelible mark in my memory and they are something I fear the most. As predicted, I have been constantly walking on eggshells.

For 2 weeks now, Mike has not been sleeping well. His jerking and shaking have been so severe at times, I sometimes hear his shoulder cracking. It seems to me like someone is giving him electric shocks every minute or two. Because of his almost constant shaking, I can't sleep. I lay next to him and wait....wait for something to happen, never knowing if it will. My stomach drops and I will often literally shake at the fear I have of having to possibly witness another "S" (I don't allow that word to be spoken in my home). What makes matters worse is that the less sleep I get, the weaker I become. The last few nights, I have dreaded going into bed, for fear of what may lie ahead. While it may sound irrational, it is quite real to me, because one of THE WORST things I've ever seen happen to Mike is the "S".

I pray that Mike's jerking stops soon and I can get some sleep. Sleeping revives me and makes me stronger and capable of handling all I need to.

Tuesday, February 5, 2008

Words that Hurt

This past Sunday...
Brandon had a friend over most of the day. He's been friends with Jonathan since they were young. He is VERY funny. I can't even begin to explain how funny, but he quite often cracks me up with his comments.

Brandon and Jonathan were heading up to his bedroom to watch the game when Jonathan did something expecially funny. Brandon paused mid-step and said "My dad really would have loved you."

Even though I was in the kitchen, the words seemed to scream at me. I lost it. I went into the bathroom and let out a few tears. It is small comments like this that make my heart break. Brandon knows how funny his dad was and if Mike was well, he knows that his dad and Jonathan would have gotten along very well. I often go about my everyday business like a robot, just doing, but when comments like those are thrown into the mix, I am brought right back down to our reality and how much we really miss out on everyday. Those few words hurt.

(Brandon and Jonathan on SuperBowl Sunday).