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.

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.

Words that Hurt

This past Sunday...
Superbowl
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).

I cry

Yesterday, Nathan had to leave early so he could go to a doctor's appt. I tried giving Mike lunch, and he almost choked on a piece of meat that I didn't puree enough. Getting past the fear of Mike choking, I got him into bed for his afternoon nap. Around 3pm, he had another grand mal seizure. This was the third one he's had, and it does NOT get easier. The only thing that made it bearable was the fact that my brother was with me. Someonw, not being alone, made a big difference, although I feel bad that my brother had to witness such a scarey event. I checked with Mike's neurologist and he didn't feel a need to adjust any medication, yet. We will wait and see.

So I now begin my fearful stage, when I walk on eggshells waiting for something to happen again, hoping that it doesn't. Time will eventually fade the look I saw on Mike's face, the sounds he made and the way his body moved. I cry when I think about it, about all that Mike has endured through the years. Now and always, I pray that Mike doesn't suffer.

Life Happens

Yes, along with looking at colleges, Courtney is learning to drive.

She passed her permit test about a month ago, and each weekend I try to take her out driving for practice. She will also need to take formal driving lessons before she can take her road test, but at least she is getting the "feel" of the car. Today she drove me to the supermarket. She did fairly well, she just needs practice.

It's so hard for me to fathom that this is all happening. It seems like yesterday that she would fall asleep on our shoulders, giving us a hard time when she had to sleep alone in her crib. Now she is practicing driving and looking at colleges she wants to attend (she would LOVE to go to school in NYC, but still has no idea what she wants to do).

I started P.T. for my shoulder. Somewhere along the line, in transferring Mike, I hurt my shoulder. Over the Christmas holidays when I was caring for Mike while Nathan was on vacation, it got MUCH worse. I have a high tolerance for pain, but that week I was in tears. I am told that I have an "impingement on my rotator cuff that's causing tendonitis". They believe they will be able to help with P.T. I hope......Otherwise, I'm not sure what I will do.

(The picture is Courtney and Brandon as they get ready for their "Junior/Senior Prom". They were paired with a senior citizen - through an event at their school - for the night at a local assisted living residence. Fun was had by all and they look forward to doing it again soon).

Courtney In Washington

This morning, Courtney left for Washington DC with her school. She was one of 45 students picked out of a class of 500 to go to Washington. The main reason for the trip is to do the March for Life walk to be held tomorrow. Today they did a 1 1/2 hour walking tour of the monuments, then at 3pm they will be going to the Holocaust museum. Tonight they have a nice dinner at their hotel (Marriott) and then a chance to go swimming at the hotel pool. Tomorrow morning they wake up for breakfast, then begin the 3 mile walk. They head "home" tomorrow night, but because they get in so late (11pm), they will go directly to Kellenberg to spend the night (at the retreat rooms). They go to classes on Wed. and will return home after a full day of school.

Courtney had some reservations about going, she was VERY concerned about being so far away from Mike. She was concerned if something happened, she would be too far away. I told her she had to go, this was a once in a lifetime chance. I know she will have a good time. She MUST live her life to the fullest and not worry about what's going on at home.

(Courtney (in blue hat) and her friends at the Washington monument).

My Nights

I lay in bed next to Mike and I am so thankul and blessed that he is here at home with us. I wonder what it's like for people in nursing homes.

I check on Mike often before I go to sleep. After I go to bed, it's very much the same. I am often up "monitoring" him. If Mike gets cold, I put on more blankets....If Mike is hot, I take the blankets off....If he's on his back, I turn him on his side and vice versa..... If he is dirty, I change him....if he is coughing, I rub his back...If he is shaking, I rub his arm to let him know it's OK.... If I find him staring into space, I rub his cheek...If his oxygen comes off, I put it back on.

When I am doing this, I often think about friends and family who are lying peacefully asleep and wish, oh how I wish that was me. Then something snaps, and I think about all those people who are in nursing homes that don't have the one on one care, and I am thankful that Mike has us. Missing a few hours of sleep a night is a small price to pay.