College Decision

Last night, with one day left, Courtney made her decision to go to: Hofstra University.

Yesterday afternoon, Fordham came up with more money for Courtney. This put her into a tizzy. She had convinced herself that she would have to go to Hofstra, and she began to "get excited" about it, then I came home and told her that Fordham offered more aid. After MUCH discussion and consideration, she decided to attend Hofstra and dorm there for at least the first year. If she can't get Fordham out of her head, or really dislikes Hofstra, she will look to transfer to Fordham next year.

This decision was TORTURE for all of us. Courtney will constantly be second guessing herself. It's really unfair that Fordham took so long in making a decision. I faxed my "Request for Reconsideration" last week, but my very FIRST letter to them was in January. I truly believe that if Courtney never thought Hofstra may have to be an option, her thoughts would have ALWAYS been on Fordham. I pray that everything works out just as Courtney hopes. She has WORKED SO HARD these last four years, despite our home situation - she deserves the VERY best.

At least for now, Courtney is in Disney with her senior class and hopefully having the time of her life. I had to take her to her school at 3:30 this morning (their plane left at 7am). She was REALLY nervous about flying for the first time without me, but she did fine. I will be picking her up at the airport on Sunday. I'm so glad that she had this opportunity.

Nursing Homes??

My mom goes once a month to a geriatric psychologist. I can only imagine that once you hit your 70's, you may need someone to talk to, because you know your future is shorter than most people. I would be happy for my mom if she discussed her thoughts and her feelings, but everytime she goes, she discusses Mike, the kids and I. Yes, she is concerned for us, but when she comes back from her appointment, she relates what Dr. B said. "Karen, Dr. B, said you should do this, why don't you try this, Mike should really be in a hospital/in patient hospice, he's not getting the care he needs at home, it's too much for your daughter and her children................" HOW DARE HE???? He's never seen Mike nor us. Every specialist that knows Mike, that has treated Mike all these years has CLEARLY said to us that if Mike had been in a nursing home, he would not be here today. The level of personalized, loving care he gets at home - is unprecedented.

Why are some people, even medical professionals so quick to THROW people away to nursing homes??? Is that what YOU would want for yourself??? For some people, a nursing home is the only option and I can sympathize with that agonizing decision - but for others, it's not necessary. They just want the easy way out. Yes, it's the easy way out. I have the right to say this because I LIVE IT.

Caring for Mike is EXTREMELY time consuming, strenuous, emotional etc etc etc.... but when he goes to sleep at night, comfortable in his own bed and I can lay next to him, NOTHING can take that moment away from us. It's a shame that others don't want to make sacrifices for the sake of those they love. The look of contentment, peace and love on Mike's face when he closes his eyes to go to sleep, is all that I need to get me through another day.

A Week in Review

We're still in a holding position with college. Fordham said I needed to fax a "Request for Reconsideration", which I need last week. When I called yesterday to follow-up, they said we should have an answer by Mon-Tues. (deposits for ALL colleges are due on Friday May 1st) If they don't give us more money, then Courtney will be heading off to Hofstra in the fall :( :( :(.

Mike has developed a "bed sore" on his ear lobe. He's had it for a few weeks, but last week, when the hospice nurse came, she put a special covering on it. She instructed me to change it every 3-5 days, which I did today. I don't like the way it looks. The hard part, is trying to keep Mike off that side. Even when he's awake, his head is ALWAYS turned to the right. His ear is ALWAYS on a pillow. His neck muscles are so tight, we can't get his head to turn to the left, no matter how hard we try. Sometimes, he will keep his head straight, but those times are far and few between. We will be keeping an eye on that.

Courtney will be going to Disney on Thursday with her senior class. Six flights with approx 485 students will be trekking to Florida on Thursday and will be coming home on Sunday. It's been at least 3 years since we've been on any kind of vacation, so I'm happy that Courtney will get to go away. Brandon will go also when he's a senior, this is Kellenberg's tradition.

Last night my brother took Courtney, Brandon, & Courtney's friend to the Met game. I had gotten tickets through my job, so they got a chance to go and see the new stadium. They LOVED it - even Brandon and he's a Yankee fan. The fact that the Mets won made to night a success. Fun was had by all. Meanwhile, I stayed home trying to figure out how to get Mike into bed without my helpers. Between me, my mom and her husband Walter, we did it. I told them, for senior citizens, they did pretty damn good.

Tonight Courtney went with friends to the local fair and Brandon went o his friends house to work on a school project, and then he will be sleeping over. Being by myself last night and tonight, I am forced to figure out - what will I do when Mike is gone and the kids are on their own?? It's a frightening thought, but my reality nonetheless.

A Hard Pill to Swallow

Today is a rainy Monday and also the kid's first day back to school after almost 2 weeks off. There were ALOT of cranky people in our house this morning (actually, it really wasn't THAT bad). Huh - I wonder why.
My mind has been overloaded with thoughts on how Courtney would be able to attend Fordham. I will try to reach out to the financial aid office one last time to see if there's ANYTHING else they can do for us. The ironic thing is that we thought the hardest part would be Courtney getting accepted. Now that she is, it will be an even MORE difficult pill to swallow if she can't go there. She has worked so hard these last four years. In fact, this last Honor Roll, she was 12th in her class of 506. YES, 12th - now I know it was only for this trimester, but it was a HUGE accomplishment nonethless (she places 32 overall for the last 4 years. THAT'S also a big deal, considering how many other students are below her). I always wondered how much better she would have done had she not had to deal with Mike's illness and all that goes along with it. See, that's the thing, not everyone "gets it". To this day, so many people think of Alzheimer's as a "memory disease" and yes, while the loss of memory plays a HUGE role, there are so many more offshoots that families have to deal with. A few weeks ago, I got tickets to the Yankee game yesterday. It was only 2 tickets, so I had my brother take Brandon (the big Yankee fan). It so happens that Fordham had a Presidential Open House yesterday also, but because we would have all been out late and past the time that Mike's aid leaves, Courtney and I couldn't go. In any other household, it would NOT have been an issue. This is just the way it has been for us for 8 years (Take Easter weekend for example and how much it was messed up because Mike's aid never showed).
I guess it's because of all the past examples of loss, disappointment, fear, sadness etc, that I truly feel Courtney deserves this more than most other kids. It seems like my children have NEVER had it easy and rarely get what they deserve. I pray that I can make this happen for her. :(

Unhealthy Time

I have finally come to the conclusion that whenever I spend alot of time with Mike, my resolve weakens. In the past, when I have spent 12 hour days with Mike in the hospital and when I recently cared for him myself for 5 days last week, I become paranoid and fearful. I notice every single breath, gulp and movement. With nothing else to do, but focus all my attention on Mike, I dwell on his condition constantly. Is he breathing too fast? Is he breathing too slow? Is he coughing more than usual? Does he have a fever? Is his chest congested? Is he wheezing? Spending the entire day and night with Mike is unhealthy for me. Does that sound bad?
Normally, I am with Mike at night and in the morning. Then I leave for work (and/or errands on the weekends). While I see him on the weekends, I am in and out all day. On days that I work, I see him again when I get home and I help get him into bed at night. As sad as it is for me to admit, it's healthier for me this way. Maybe that's another reason why I get so concerned about Mike's aid leaving. I have finaly realized that it's difficult- physically and emotionally - for me to be with Mike 12 hours a day.
It's usually after these periods when I begin to question his health. It's at these times when I get concerned about his decline. I dwell on this so much that it's unhealthy. I tell myself that we've been down this road before and everything has always turned out OK. I guess my fear is for the day when it's NOT OK anymore. It's going to happen one day. Will I be prepared?

A New Day

Today Mike's aid came back. She WAS sick, but also took a day to visit a friend in Boston. I had a long talk with the agency and we've come to the conclusion that Mary is burnt out. She has worked with us since May - 10 hours a day, seven days a week without a vacation. They will try to talk to her about cutting it down to 5 days a week, and try to find someone else to cover her for the other 2. I don't think she will like it because she WANTS to work to make the money. I just get concerned because I feel on edge - like on any given day, I will get a call saying that she quit. After caring for Mike myself for 5 days, I've seen how fragile Mike is. He is definitely slowing down. Now that Mary is back, we will have to wait and see whether it was because of a change in his routine, or if it's just the disease taking it's toll.
Brandon spent the night with his friend's family out on the Island and just came home. Tomorrow morning I have to get up at 5am to get Courtney to school. She is going on a band trip to Washington DC and Bush Gardens. The weather is supposed to be beautiful for her and I'm glad.
I have been more than overwhelmed this past week. Between the situation with Mike's aid, worrying about his health, dealing with Courtney's disappointment about the possibility of not going to Fordham, my everyday issues with finances - it's all beginning to take it's toll. I'm tired and I don't see an end in sight very soon.

Fear of the Unknown

Mike's aid has not shown up for the 4th day in a row. The agency she works for called us on Saturday and said she called in "sick" for Sat. and Sun. This morning, the agency called me and told me that Mary called in "sick" again today. I stressed to them that I need to know what is happening with her. Is she really sick? Did she quit? Will she be coming back? I didn't go into work Friday or today and who knows what will happen if an aid can't be found. The stress of the unknown is horrible. I am VERY concerned that if the agency finds someone, they will not be able to get Mike to eat or drink. Will this hasten Mike's decline?

Blessed Easter

This morning, after 3 1/2 hours sleep, Courtney and I woke up to go to the sunrise Mass at the beach. We woke up at 4:30, got dressed (without saying a word and walking around like zombies) and left the house at 4:45 a.m. We got the the beach around 5:05 a.m. in the PITCH BLACK. There are no lights or anything. You can barely see 5 feet in front of you. At about 5:45 a.m. Father Ralph (our beloved Pastor) yelled for this "flock to follow him". Hundreds of people followed him down to the beach where they had a bonfire. We were given sticks that represented our sins and each threw them into the fire. The priest blessed the ocean and we all went down to the waters edge to bless ourselves. We then walked to the next area and celebrated the rest of the mass. By this time the sun was rising, and while it was bitter cold (35 degrees) the morning was beautiful. Courtney swore that her toes were going to fall off because she wasn't smart enough to double up on socks or wear boots. Thankfully, she left the mass with all her toes still attached. We got home and the next chapter of my day started by caring for Mike. My mom and brother did the cooking and setting up, and for that I am grateful. I was EXHAUSTED and by 5:30 p.m. after I had given Mike his dinner, I feel asleep on the couch for about an hour.

While the weekend was difficult, because I didn't get a chance to do anything else, I was blessed to have spent the extra time with Mike.

The pictures were taken this morning. We HAD to take the one of Courtney and I when we first got there, and the next was a picture of our beautiful Easter sunrise.

Rock Stations of the Cross

Courtney and I just got back from our church's stations of the cross for Good Friday. We went last year and I vowed to not miss it again. It was SO moving and beautiful. Some parishoners act out the Stations while the band from our rock mass sings both church and pop songs. The way they weave the bible into modern day examples is truly amazing. Jesus carries the cross, is whipped (not literally though) and is hung and crucified. In between each Station, the band plays. It is so moving. The night culminates with the Spanish community carrying in the statue of Jesus and everyone sings Hosanna.
I NEEDED this tonight. Mary called this morning and said that she had to come in late (3pm) because she had to move out of her current place (the one next door to us). It doesn't surprise me, especially if she pulls the stuff there that she does here. All the errands I had to run, had to be put off. At 2:45 I called her to make sure she was still coming (a feeling I had) and she said that she couldn't - she just STARTED moving. Needless to say I got NOTHING done at all today - but thankfully, I had off. If I didn't, my boss would not have been happy. Now I have to wonder whether she will be in tomorrow or not. If not, I have NO IDEA how I will get all my stuff done for Easter, since no one else can care for Mike but me. I was so upset, frustrated and beaten, that I NEEDED to go to the service tonight. It DID help.
Happy Easter to all.

53 Face Cloths

Things around the house have been pretty intense - actually I would say "on edge". Mike is doing OK, but the aid is giving us alot of problems. For whatever reason, she says we have all "changed" towards her, even Gizmo. She is paranoid and just this week, she really didn't answer any of my questions about Mike. Everytime I would ask her something, she would just shrug her shoulders, or say "I don't know". I'm sure you ask yourself, "why do you keep her?" It's because she's familiar with Mike and gets him to eat and drink. There are not many aids around that can take care of a patient like Mike. Most just want to come and "keep a patient company". In the course of these past 8 years - oh the stories I could tell. I have no idea what will happen, but I can tell you things have been terribly stressful - something I don't need anymore of. I pray everyday that this God loving woman (she walks around all day quoting verses from the bible) sees the undo stress she is causing and tones down her actions.

The kids are finished with their trimesters and are officially on vacation. They both did really well, once again. Courtney's overall average was 95.7 and Brandon's was 94.1. Brandon was REALLY upset with himself because his average went down .1% (last trimester it was 94.2). I can't believe how frustrated he was. I am so proud and happy for both of them. They amaze me.

I did Mike's wash last night and for my own entertainment, I play this game. Last night, among all his other clothes and wash, I folded and counted 53 face cloths. Imagine that!! This is what it all comes down to. Counting wash cloths - and so, another day ends.

Oh Well.....

Well, all of Courtney's financial aid packages came in and unless there's a miracle hovering over us, she will be attending Hofstra University in September. While the Fordham package was "decent", we would still have to come up with alot more money each year. It does hurt me, I will not lie. Courtney loved Fordham from the moment she saw it. Everything about the school was perfect: the courses she wanted and connections the school had for jobs/internships, the proximinity to home and NYC, the campus, their church - it all fit. Unfortunately, it looks like there is another plan for Courtney and we will just have to accept that. Hofstra is a good college (my alma mater) and it's close to home. Their scholarship and financial aid offer was substantial enough that we hardly need to put anything towards tuition. We feel blessed in that sense and we will be forever grateful that Courtney will have a good education when others aren't so lucky.

Courtney and Brandon have their last big test today and then they're off for 1 1/2 weeks. This weekend is busy for us. Friday night we go to the "Rock Stations of the Cross". A truly amazing experience. Saturday our pastor asked Courtney to do a reading at the Easter Vigil, so she will be there from approx. 8pm-12am. Then Courtney and I will be going to the sunrise Easter Mass on the beach at 5:30 am. I haven't been able to go the last few years, but this year, Brandon will stay with Mike and I will be going with Courtney. Hopefully the weather will hold out for us. I don't think Mike's aid will be in on Easter, so I will be taking care of Mike on my own. I already warned by brother and mother that they will be doing the cooking. I hope I make it through the day on such little sleep.... but then again, that's nothing new.

Waiting, waiting, waiting

Well, Brandon got his cast off yesterday and believe it or not, he wanted to go play basketball right afterwards - the same sport that got him into the cast in the first place. It's not like he can never play basketball again, but seriously. I was pleased when the PA told him that he couldn't play sports for another 2 weeks. His ankle still needs time to heal. Right now, he's just trying to get used to bending his foot again - but he's VERY happy and he said he feels "free".

We're still waiting for Courtney's financial aid package to come in. She really wants to go to Fordham and I pray that it works out. It just hurts me SO MUCH when I see other kids getting so much money/aid because of the color of their skin or their nationality. Courtney has worked SO HARD for her grades, despite going through all she has these last 8 years. If anyone deserves a large scholarship, it would be Courtney, unfortunately, schools don't take all that into consideration. She seems "OK" if she has to attend Hofstra, but I HATE the fact that my children always have to settle. They deserve the same chance as anyone else.

On a lighter note, Mike actually laughed at me today. I kept repeating how much I loved him and I asked if I was boring him. He looked and me and chuckled. THAT'S the way to start a day.