Angels - Part II

Back in 2002/3 one of the hardest things for me to do every morning was to leave for work. Mike was still aware and able to get around. The kids would leave for school and I for work and it broke my heart that Mike was at home all day to "think". My dad visited every day to keep him company, but could never stay the whole day. My mom and Walter would come and go and we would do all we could to not leave him alone for that long.

I had gone to LIAF (Long Island Alzheimer's Foudation) and they told me about a day program at the JCC in East Hills. I decided to take Mike there to have a look. Needless to say I was taken back by the size and appearance of the facility. They not only have day programs for various adults and special needs children, but they have a huge gym and various after school activities for children. The place was light and airy and Mike and I both decided we'd try it.

I applied for and was approved for Mike to use public transportation on the mini-MTA buses. The JCC had a gentlemen who vounteered with them that lived near us, so he offered to come to our house in the morning and then go with Mike on the bus. After a few short sessions, Mike was becomming resistant to going and we had a really hard time getting him on the bus. That experience was not pleasant as I'm sure these drivers have ABSOLUTELY NO TRAINING in AD. The problem was that this day program was geared more toward the older adult - people 65 and older. They listened to Lawrence Welk and watched old movies. The TV was usually very loud as most participants were hard of hearing. Mike would become restless from the loud noises, so this was a problem. He also looked around and saw all older people and I'm sure he felt that he just did not fit in. The director of the program became "intrigued" my our unsual situation. She also knew that when they were audited, they could not let Mike's file be seen because the State would not give them money for anyone attending under the age of 65. Imagine that??!!!

This woman has made it her mission to develop a day program for people with any form of dementia aged 65 and YOUNGER. She has worked tirelessly in bringing her program "Let's Do Lunch" to a national level. Brandon had to do a report for a special project for school and he did it on her program. When I saw all the participants playing basketball, word games and listening to the Beatles, I became teary eyed. I so wished this program was around when Mike was first diagnosed. What has made me feel better is the fact that it was Mike who INSPIRED this program. It was through his unique problem that this idea came about, and with one AMAZING woman who never gave up.

JCC and AFA are having a conference in NYC on 4/11 to kick off national attention for the Let's Do Lunch program. I plan on being there in honor of Mike to celebrate how far they've come.

Thank you Connie for all your hard work. You are truly an angel.

Angels- Part I

This disease has surely taken away so much from us, but has also given so much. Quite a few angels have graced our lives and I want you to meet each of them. In no particular order, I will be writing about them in the following posts.

I have a dear friend whom I met during the first day of school when Brandon was in first grade. Her son was new to the school. She's a nurse and we immediately clicked. She's helped us out so much over the years - arranging "garden parties" (parents from our school that took time out of their weekend to clean up our yard while Mike was in the hospital for 2 months back in 2004), shuttling Courtney and Brandon places and offering countless advise and information on Mike's illness.

Four years ago, we were nominated for Extreme Make-Over Home Edition and surprisingly enough I was contacted by one of their producers. For about 4 weeks, things were crazy, but we did what we had to do, because we thought we were getting our home remodeled. I was desperate to make our house handicap accessible for Mike and his future needs. Without giving away show secrets and going into great detail, let's just say our house remains the way it was when we purchased it back in 1990. I was DEVASTATED for Courtney and Brandon that they were lead on by the poducers. How could they do this to a family already in crisis?

Well since then, my dear friend has tried so hard to help us do something for our home. Every once in a while I get an e-mail from her asking for pictures, and I know she's up to something. Her mind always seems to be spinning and it warms my heart to know that she's always looking out for us. Even though nothing has ever come from her hard work, I feel truly blessed for having a friend like her. She's an angel and will ALWAYS hold a special place in our hearts.

Thank you Mary :)

Upheaval

Today started off with a bang. Mike is Ok, it's not that. Courtney and Brandon had planned on going to the movies with their respective friends and then going to lunch. A great way to end their vacation. But -
----This morning my brother came over and approached me about moving in with us. With his current pay cut, he can no longer afford his apartment. He hopes it will only be temporary until he can save enough money to get back on his feet. Of course, I say no problem, but I will need plenty of time to empy out mine and Mike's old bedroom to make room for his stuff. He will also need to find a storage facility so he can put all his furniture in storage.
----As I am trying to figure out how Courtney and Brandon will get to their movies, my mom tells me that Mary ( Mike's aide) has bad news. She cannot stay the whole day today because SHE has to move. She rented a room from someone and apparantly they threw her out. Her nephew is coming in from CT. to take her furniture to donate to the Salvation Army. She plans on storing her clothes at her friends house. She will be leaving at noon to do all this. Courtney steps into the picture to say that she will cancel her plans so she can stay home with Mike. I tell her NO, that I will have to leave work at noon. She gets very upset because she WANTS to take care of Mike.

So..........in short. My brother will be moving in with us, Mike's aide has no place to live right now, Courtney had to cancel her plans for the day and my head is spinning. Through it all, I keep telling myself how blessed I am that I still have a job (with paycut and all) and a roof over our heads. The ecomony is so bad right now, and so many people are suffering. It hurts me to see people that I care about struggling the way they are, and I feel helpless that I can't do more for them. Once again, I rely on my faith.

If you can Imagine

Remember that day when you got that dreaded phone call telling you that someone you loved dearly had died. Remember the sadness, loneliness and tears? Remember during the wake and burial how you reminisced about the good times? You remember your loved one's smiles, words, hugs and love. You remember vacations, holidays, weddings and births. You get through those days going through the motions. You feel numbness and disbelief. You just can't believe this is happening.

WELCOME TO THE WORLD OF ALZHEIMER'S.

All of the above is experienced on a daily basis for the caregiver of someone with Alzheimer's Disease. You feel sadness, disbelief and loneliness. Even though your loved one is physically present, they are emotionally gone/lost. You can't believe this is happening.

After seven (7) years, there are days when I STILL wonder when I will wake up from this nightmare. I am STILL in shock. I grieve everday for the loss of the man I married. I grieve everyday for the loss of the wonderful man who is was the greatest dad. We mourn his loss on a daily basis.

Can you imagine?

Good and Bad

I am thankful that to date, Mike seems to be OK. He had a bit of a coughing/sneezing spell on Saturday, but that was it. Of course, I panic and think about the "what if's". I just can't help myself. Courtney is usually the one who knocks some sense into me and gets me to relax.

Courtney left this morning for Boston. Her high school band is playing at Quincy Market today. Tomorrow they will be doing some site seeing and then head for home tomorrow night. I am SO GLAD she was able to go. When the permission slip came home, she was concerned about being away. I'm sure she will have a blast.

Brandon is STILL sick. He's had a sinus infection since November. He's had x-rays, CtScans, and allergy tests. He DOES have a polyp in his nose and he has chronic sinusitis. The ENT also said his adenoids grew back (he had them removed with his tonsils when he was 5) I feel so bad for him. He has been on antiobiotics for months and I hate it. I wish there was some non-medicinal alternative that would help him. He's a trooper, considering everyday he has a headache and he's stuffed up. I'm hoping that with the change of seasons, he will get some relief.

Happy Easter !!!

Happy and Blessed Easter to all our family and friends.

Good Friday proved to be a very special and moving experience for me. Courtney and I went to the "Rock Stations of the Cross" at our church on Fri. evening. They had a parishoner play Jesus, townspeople and soldiers. They re-enacted the crucifixion, even lifting Jesus up on the cross. All this was done with modern day traditional music done by our parish's rock bank. My most favorite song, "You Raise Me Up" was played when they lifted Jesus up on the cross. Then after all the stations were read, all the lights went out in the church and the Italian community carried in "Jesus" on a board with lights along each side. The band began playing Hosanah. It gave me the chills.

Today Mary (Mike's aide) is here and that allowed the children and I to go the the 11:30 mass. It was crowded as usual, but I was happy to be there. Although Courtney didn't get to the sunrise mass, she was pleased with this opportunity. Because of our aide situation and Mike's illness, this was the first Easter Mass I was able to get to in 6 years.

Now, my only concern is that Mike started coughing yesterday. For about an hour, he sneezed and coughed. He slept OK last night, but of course, I'm concerned. As he was getting ready for his nap a short time ago, he started coughing again. I pray he's not getting sick.

Once again.....HAPPY EASTER!!

I have off today for Good Friday. Tonight, my brother will be staying with Mike while we go to the "Rock Stations of the Cross". I've never been, but it sounds like it would be interesting. The same band that plays at Rock Mass will be performing at church.

Last night I hurt my finger while changing Mike. It hurt so bad, but I forgot about it when I went to seep. This morning I woke up and the pain was REALLY bad. I called the orthopoedist I went to before, but he was not in today. Hopefully I will get in on Monday to see him. I don't think it's broken, but it could be something with the ligament. I can't really bend it.

Mike is doing OK. It's week 2 without Nathan, but THANKFULLY Mary has still been here with Mike. She's a Godsend.

If I don't get back on before Sunday, I wish everyone a Blessed Easter.