Financial Disaster

Well, it happened. I got called into my boss's office this morning. Because of the slow real estate business and the state of the ecomony, he will have to cut back on my salary $200/wk. WHile I am thankful that I still have a job, I am EXTREMELY SCARED. I was barely making ends meet on my current salary, I have no idea what I am going to do. I sit here at work not knowing how I am not breaking down. I don't want to embarrass myself, but this is disastrous. I am so afraid we will lose the house. Please pray for us. God help us.

POP

There it goes, my brain just burst....

I've worked for my very patient, kind boss for 19 years. He is a real estate attorney - need I say anything else. Considering the housing market and the status of the economy, business has been VERY SLOW. Other companies we have worked with over the years, have had to lay off employees. I asked my boss recently if I should be looking for another job and his answer to me was "No, we'll get through this". I cannot help but be nervous about my job right now. My job security, once a constant for me, is now shaky. Add this on to my list of things to think about.

I think my mind will burst....

I go through phases along the way, where believe it or not my mind is "clear" and all seems to be "in order". This is NOT one of those phases. For the past week or so, I feel as though my brain is going to BURST........................

Beside my "normal" everyday worry of Mike's health, added to that I have:

-Brandon's health. He's had a sinus infection for 4 months. He went for a catscan which showed sinusitis. Yesterday I took him back to his ENT and after cleaning out his nasal passage, found a polyp. We'll have to see what happens with that. I just feel SO BAD because he has had a headache and stuffiness since November. He's been on antibiotics for just as long and I hate that.

-Finances. I am having a really difficult time lately. All I hear on TV is about a recession and the housing market. I make sure my mortgage, health insurance, gas and electric are paid each month, but the rest of my bills have to wait. It seems to be getting more and more difficult and this worry is always on my mind.

-College. As you've read, Courtney is a Junior in High School and therefore, has seriously started looking at colleges. The cost of them OVERWHELMS me, and it takes all I have in me not to hyperventilate. She's also learning to drive which is more for me to think about.

Yes, my head feels like it's going to explode.................

People Just Don't "Get It"

I do what I do, to try to get people to understand EXACTLY what it's like to live with a loved one with AD. I've learned along this path, that most people just don't "get it".

Mike needs 24/7 care. He cannot do ANYTHING on his own. He wears adult diapers, his food is pureed and he cannot stand. His liquid has to be thickened to prevent him from choking. He cannot be left alone at all. Would you leave an infant by themselves for even a short time?

I'm finding, especially with Courtney and Brandon's friends, they don't get it. I'm surpirsed that their parents don't get it either. Neither one of them can just "get up and go" somewhere. Everything they do has to be carefully planned, making sure that Mike has someone with him. If Courtney goes out at night, my brother has to come and stay while I pick her up. They cannot go out on the weekends when it's my time to help the aide transfer Mike (she cannot do this alone). They can only be taken somewhere either before, during or after Mike's nap. They can only do things at night when I have somone to stay with Mike. It's plain and simple, but NO ONE seems to get it. Something so simple as a ride home for my children would be SO APPRECIATED, but for the most part, it doesn't happen. It would be a simple gesture to make things easier for us.

We are currently working with our newspaper on a story about AD and caregiving. I TRULY hope that this piece will shed some light on the reality of the disease. Nothing can be spur of the moment, it all takes careful coordination. This is our life - our reality.

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 goes...so 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.

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.

Mornings

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).