Tuesday, March 31, 2009

Just Another Day

I went to the doctor last night and he believes I have the same sinus infection that I had back in December and it has never completely gone away. On to a new round of antibiotics.
Brandon is counting down the days until his cast comes off (2). Hopefully this Thursday he will become "cast free".
Courtney is counting down the days to Disney (senior trip) and waiting anxiously to find out financial aid information from Fordham. All college deposits need to submitted to the schools by May 1st.
Mike is still our "energizer bunny". He's not smiling as much as he used to and he's becomming a bit more rigid. It's harder to straighten his arms and fingers - all just another part of the disease.

Saturday, March 28, 2009


Yesterday, my good friend held a fundraiser with all proceeds going to the 2 organizations of my choice: Long Island Alzheimer's Foundation and Alzheimer's Assocation. It WAS a success and they raised $3,300.00. I was so happy and humbled by all those that attended and donated money. I can't even say enough about all the dancers who performed. The amount of time and energy they put into this performance was unbelievable. Everyone that paid the $20.00 for the ticket was pleasantly surprised. I apologize for the "out of focus" picture, but it was one of the best ones we had.

This was just one more example of the generosity of strangers and the kindness of friends. Amazingly, this journey has made us well aware of all the good in this world.

On the COMPLETE flipside, we are also reminded of the meaness of others. This morning when I opened the curtains in our front room and saw a hole in the window. Looking closer I saw that apparantly someone had shot a BB gun at our front window. In fact, the BB was still inside the window. I called the police and reported the incident, just in case anything else happens. It unnerves me to think about what would have happened if it went through BOTH panes of glass. Now I have to call the insurance company to see if I'm covered.

Friday, March 27, 2009

The Wet Bar

Years ago, the front room of our home was an outdoor porch. The people we bought the house from had enclosed that porch and built a "wet bar" in it. When Mike and I saw the house for the first time, we were so excited about the bar. Our sellers had told us that every Friday night, they would have a "date night". They would sit at the bar together, no matter what was going on in their lives" and have a drink and discuss their kids, work etc. Mike and I were hoping we would be able to carry on that tradition. We did have a few parties that first year in the house and we did utilize the wet bar. I have great memories of those days, but once the kids came along, that became their "play room". Mike and I would often joke about the transition. It was a great location for the kids to play because it was right off the living room and they could be within eyesight. At Christmas time, we put our tree in that room, so the presents and mayhem would be out of the way.
It is that room that we have made our bedroom. When Mike began having a difficult time negotiating the stairs, one of the contractors he knew, volunteered his time and ripped out the wet bar and old cast iron radiator in order to make room for our bed. With some other minor repairs and changes, some paint, new lights and a beautiful wall tapestry, it has become "our room". The same reasons it was a good playroom for the children are the same reasons why it's a good bedroom for Mike and I. After he's in bed at night, he is right there for us to see and check on, but still in his own room. It's quiet and peaceful.
Since Mike hasn't been able to speak for about 5 years now, I have come to relish the time that I share with him in the room. It's just he and I, closed off from the world. I often lay there and think back to the day we first saw the house and the wet bar. Mike was so excited that he would have a room to call his very own. How ironic.
Whenever I get sick, like I've been this week, I sleep on the couch in the living room, so as to keep my germs away from Mike as much as possible. It's then that I realize just how much I miss him. I don't see him all day because I'm at work, and nightime is the only time we get to be together. Mike may not be able to talk to me, but when I lay there with him, I talk to HIM. I tell him about the kids, work etc.
We may not be sitting at a wet bar, but the tradition continues......

Monday, March 23, 2009

Fun Times

Everything is still "status quo", reassuring me once again that Mike IS the Energzier Bunny.

Courtney went out Friday night with her friends and came home later than normal. I knew where she was and when she was coming home, but I was STILL a nervous wreck. How I wish that I had Mike with me to calm my fears. She came home at 1:30 a.m. as planned. I've tried to tell her over and over again, I trust her implicitly, it's the other nuts driving around at that hour that make me nervous. We got through that night unscathed - thankfully.

Brandon's turn came on Saturday night. His friend's mom invited a few of the boys to the movies and out to dinner for her son's 16th birthday. I was trying to reach him all night to determine when I would have to pick him up. FINALLY at 10pm he called to say that he would be sleeping over his friend's house. By 10:01pm I was in my PJ's.

I started the search with Courtney for dresses for all her upcoming events: her friend asked her to be her Confirmation Sponsor (June), in lieu of a prom her school has a "Senior Send Off" where they take the kids into the city and they take a dinner cruise around Manhattan (June) and then there's graduation (also June). Although June is 3 months away, it's not enough time to find outfts for my daughter who HATES dressing up. She LOVES casual attire, so dresses, shoes and stockings are torture for her. This in turn, tranforms into torture for me. Courtney is not a very "polite" person when she is stressed or angry/frustrated. It's going to be a L-O-N-G 3 months....................

Thursday, March 19, 2009

The Shack

While shopping at Target one day, Courtney noticed a book called The Shack. She explained to me that Fr. Albert (her religion teacher) recommended it and offered the students extra credit if they read it. Curious, I picked it up and read the description. I purchased it.

It's difficult to get my mom to read, but she finished this book within one week. She raved about it. So, now it's my turn. It's promising to be a really good book and the writing of this author (Wm. Paul Young) is amazing. While reading it, I came across a paragraph that describes perfectly what I have always tried to convey to others about how I feel. Here it is..........
"The Great Sadness had draped itself around Mack's shoulders like some invisible but almost tangibly heavy quilt. The weight of it's presence dulled his eyes and stooped his shoulders. Even his efforts to shake it off were exhausting, as if his arms were sewn into its bleak folds of despair and he had somehow become part of it. He ate, worked, loved, dreamed and played in this garment of heaviness, weighed down as if he were wearing a leadan bathrobe - trudging daily through the murky despondancy that sucked the color out of everything..."

Wednesday, March 18, 2009


Christa (our hospice nurse) came by yesterday and confirmed that both of Mike's lungs are congested. We can't tell for sure if it's the same thing that he had 2 weeks ago (and wasn't on antibiotics long enough) or if it is from aspirating. They ordered a different antibiotic so we'll wait and see. He had a fever today (100.4),but it was lower than yesterday. He's eating and drinking the about same. He seems more out of it than usual and I guess that's what's bothering me.

All else is the same. I worry and think - the two do NOT go well together.

Tuesday, March 17, 2009

The jinx

Laugh all you want, but I DO believe in the "jinx". Yesterday Mike sounded congested and today he woke up with a fever. He had a fever about 2 weeks ago, so I'm not sure if it's the same thing that never went away - OR - is he starting to aspirate more. I called hospice and the nurse should be there sometime this afternoon. I really didn't like the way he sounded last night, so we'll see what they have to say today.

I should learn by now to NEVER say things are going "OK".

Sunday, March 15, 2009


Everything has been pretty quiet lately, and I hate saying that. I'm so afraid of "jinxing" things. Courtney just got contact lenses. She always said she would NEVER be able to touch her eye, but she has already mastered them. She thinks she looks "funny" without her glasses, but as her mom, I would have to say she looks more beautiful. When someone says something to her, I explain that it's only because they are not used to seeing her without glasses.
Brandon is still hopping along on his cast. His ankle keeps hurting, so I'm beginning to think he's walking on it too much.
When I said it's quiet, I wasn't kidding. I like it this way.

Thursday, March 12, 2009

Crazy Aide Days

Well, Mary is still with us, but I never know what is happening from day to day.

The day after my mom thought she heard the aide say that she was giving her week's notice, I called the agency and asked them if they heard anything. They hadn't. Yesterday, Mary took the morning off to go to the doctor. She came in at 1:30 (I had to leave to go get my taxes done) and appeared OK. I asked her three times how everything went at the doctor and she just shrugged me off. No one can believe me when I say she just doesn't answer me sometimes. After my third attempt, I didn't ask anymore. Today, she showed up late and said she didn't feel well. I asked her AGAIN how everything went at the doctor and she said "I never went". So what did she do all morning?? I could have been at work - I DO have other responsibilities. Now I will be waiting for her to spring another "day off" on me so she could go to the doctor.

Mike seems to be doing OK. I'm not sure if he had a temperature the other day or if he was just too bundled up. One day at a time.

Monday, March 9, 2009

Our Aide Saga

Well, it may have finally happened. My mother may have pushed our aide to the brink and caused she to quit.

Since yesterday, my mom has REALLY been bothered by things she has done. Today she was upset when the aide left for lunch. She does this every day, but today, my mom said she never said where she was going or what time she would be back. My mom called me at work and I SPECIFICALLY told her NOT to say anything and that I would talk to her when I got home. Well, my mom said something anyway, and she called to tell me that Mary was back, but she made about 6 phone calls and she told my mom it would be the last week she workd with us.

I told my mom THREE TIMES not to say anything to her. The two of them clash all the time. They once used to adore each other, but not anymore. My mom is stubborn and deaf and our aide is stubbon and can't speak English. The two together is disaster. Any other time I may find this funny, but not today. After that call, my stomach dropped and I am sick. There is NO DOUBT in my mind that the aide will give her notice. I think she's been having these thoughts for a while now - although considering today's ecomony, you would think she would be happy just to have a job. I mean, yesterday she told us that Gizmo hated her. She apparently knows someone who worked with a family for 6 years and the dog never bothered them, then one day it attacked. According to her, ALL dogs are evil.

I've said it before. The ONLY reason why I've put up with her nonsense (I don't want to be crude on the blog) is because she gets Mike to eat and drink. I get just as frustrated with her as anyone. Now my concern is what will happen to Mike? Even IF the agency can find another aide, will they be able to handle Mike? Will they be able to get him to eat?

Everything happens for a reason, but right now I just can't see it. I fear going home to hear what she has to say. I fear that she will just walk out without ANY explanation....then where will we be?

Thursday, March 5, 2009

What a Difference a Day Makes

Last night when I got home from work, Mike's breathing seemed a little fast. I put the oxygen on him and waited. About 1/2 hour later I took his temperature (his breathing usually becomes faster when he has a fever). Sure enough, his temp was 101.2. I sat him up and tried pounding his back. He did cough a little and I could hear some congestion - "oh no".
While this is happening, Brandon comes hobbling home. He was playing basketball with his friends and landed on his foot wrong. His ankle is all swollen and he can't stand on it. "I don't believe this".
Courtney comes home from school coughing and sneezing. "can it get any better than this?"

Mike made it through the night without any more fevers (I had given him Tylenol at 7pm and 11pm). The hospice nurse came by this morning and confirmed that he has congestion in his chest. He was prescribed an anti-biotic. Now we give him that and pray.
I am leaving work at 1pm today to take Brandon to an orthopedist. He can't stand on his foot. I'm not sure how I will get him there, but I think we have an old pair of crutches in the garage.
We'll see how Courtney is feeling when she gets home.

Just another day in the life..................

This picture of Brandon was taken today after we got back from the doctor. He has a hairline fracture on his ankle and needs to be in a cast for at least 4 weeks. Although he looks sad, he's eating up all the attention :)

Wednesday, March 4, 2009

Busy Week

I realize it's been a week since I last wrote. Alot of things have happened. As usual, I've just been very busy. It doesn't help that my boss is away AGAIN.

I am pretty much computer illiterate, and Courtney helps me downlaod pictures. Ideally, I wanted to write AND post pictures, but that didn't happen.

--Last Tuesday, I went to another EOAD dinner. There was a new woman there who monopolized alot of the conversation, but you could tell that she was just busting. She NEEDED to let it all out. She is her husband's caregiver and he is still at home with her. She's a very petite lady, and I'm not sure how she handles everything. What I found somewhat appalling was something her "friend" said to her. She told this woman, "why don't you just let him die?" WHAT!!???? I couldn't believe my ears. What makes matters worse, is there was a gentlemen (a fellow caregiver) there that sympathized with this friend. I had an issue. As caregivers, we are sometimes forced to the brink. We may often wonder what our lives would be like without having to care for our loved one. We EARNED those feelings. We sacrifice so much in the name of love, so we have that right to think that way sometimes. For a friend, who does not live the life we do, to say that to a woman who is watching her husband fade a little further away each day, is unconscionable. We need support, not hurtful words. Think before you speak.
--Saturday I went to my Friendly's reunion. About 50 people who worked together about 20-25 years ago, came from all over (even as far as Canada) to reunite with each other. I had a BLAST. I worked there from the age of 16 to 23 and they were THE BEST days of my life. I always thought that there was something wrong that I often thought about these people and the great times we had. Apparantly there was nothing wrong, since everyone was so eager to get together. I think it says alot about the "kids" we were back then and the adults we've all become. At 17-18 years old, I was a closing "manager in charge". I was in charge of the entire shift (6-10 people), closing the store and counting and depositing the money. I didn't realize at the time what a HUGE responsibility that was. No one took advantage of each other, we all worked well together AND we socialized together. This was like a second family. I don't think kids today have the same kind of work ethic and relationships. Heck, even our manager showed up, still knowing our names and still being the "crazy" guy that he was.
--Monday we had a snow storm. We got about 13 inches of snow and for the first time in 4 years, the kid's school was closed due to a snow day. When they found out on Sunday night that their school would be closed, they were estatic. Between the phone calls, text messaging and e-mails, it almost felt like election night. After the snow was shoveled, we watched The Changeling (GREAT movie), and had home made brownies and hot chocolate. It was GREAT to have a "free" day with the kids, with no running around to stores.
-- Courtney got her itinerary for her Senior Trip to Disney (end of April beg of May) and there's no doubt in my mind that she will come home sick and exhausted. She will only be getting about 4 hours of sleep a night and the night before she comes home, she will probably not have ANY. They will be getting in from the park at 12:30 a.m. and have to be up and be ready with their luggage to catch the bus to the airport by 3:30 a.m. I am SO glad she will get to experience this and I pray that she enjoys every moment. Brandon is already thinking ahead to his senior trip. Two more years will just fly by, I'm afraid.

I hope, with Courtney's help. to add some pictures to this entry...someday.