Happy Valentine's Day

From the very first year Mike was diagnosed, I dreaded any holiday. The kids were so young, they could never do anything on their own, and Mike was not well enough to help them with anything. Holidays were always something I hated. I'm not a materialistic person at all, but it's always nice to get something (card, handmade project etc.) Without the guidance of another adult, Courtney and Brandon were never able to do anything for me. As years went on, I grew accustomed to the holidays and the fact that I would rarely get anything.
This morning, my mom came over with on single red rose. She handed it to me and said, "this is from Mike. Yesterday he whispered to me and asked me to pick this up for you from him". Well, I lost it. Little did she realize that I ALWAYS told Mike he was lucky because I was never one to want dozens of roses - I always thought one single rose was THE MOST romantic thing a man could give. This morning, I got my single rose.

HAPPY VALENTINE'S DAY TO ALL ALZHEIMER SPOUSES.

An Alzheimer's Plea

By: Fred A. Das

The song of the birds, I cannot hear, The flowers, I cannot smell.
I cannot remember, the ones I loved, And things I knew so well.
I cannot see the wondrous sights, My eyes no longer can see,
The setting sun, the stars at night, The beauty of a Tree,
I cannot cry, I have no tears, And yet my heart is filled with fears.
I cannot speak as I did before, My voice has faded away.
I'm in a world all of my own, I cannot even pray.
I know no difference between day and night, Time means nothing to me.
I cannot tell the wrongs from right, Oh! God, What has happened to me,
I long to feel the tender touch, Of Someone to light the way,
Someone to lead me out of my world, And turn the night into day.
I need a strong and gentle hand, Someone who understands,
Someone who would guide me, Out of these strange and siatnce lands.

I have had this poem on our refrigerator for years to remind us all: friends, family and caregivers, what it's like for Mike and others with Alzheimer's Disease every day of their lives.

College

Our daughter Courtney is a senior in High School and therefore, it means the stress of looking for, applying to and waiting for responses from colleges is upon us.
I am amazed that throughout Mike's 8 years with this illness and living at home with us, both our children have excelled in school. Their recent progress report indicated all A's for each of them. This is truly unbelievable, considering all that they deal with on a daily basis.
Thankfully, Courtney has been accepted to 3 colleges so far: Fordham, Hofstra and Manhattanville. Fordham of course, is her first choice. The dilemma we have before us is financing college. She has already received a substantial scholarship to Hofstra with an invitation into their exclusive "Honor's College" (open only to about 150 students in each Freshman class). We have not heard anything about scholarships from the other two, although she WAS invited to a special over-night visit to Manhattanville where she would find out what she will get as far as a scholarship goes.
On the advice of a dear friend, I wrote to Fordham to explain our situation, and to see if there is anything they can do to assist us with tuition. There is no doubt that Courtney will receive some kind of scholarship and financial aid, I'm just not sure if it will cover the entire cost. At first I felt uncomfortable writing that letter, then I stopped short. If ANY student would be deserving of a good college education, then surely mine would be on the top of the list. They have proven over and over again, they can overcome even the worst of circumstances. Why should my children not be entitled to a college education just because they don't have a specific last name or skin color? They have worked so hard for so long, against TREMENDOUS ODDS and I will do anything I can to make sure their dreams come true.

Pangs of Sadness

Most of the time I go through my day in robotic form. I wake up, see the kids off to school - prepare Mike's breakfast, medicine and drink - take a shower - get Mike ready for his aid to get him dressed - dry my hair - get Mike out of bed - leave for work - work - come home and make dinner - get Mike ready for bed - do dishes - do laundry (if necessary) - watch TV (my escape). Every day is the same. I do theses things sometimes without even thinking.
Every once in a while though, something happens, however small it may be, that startles me back into the reality in which I live. On Sunday at church, as I was walking back to my seat after communion, I teared up. The sadness I felt for Mike was overwhelming. Don't ask me why at that moment - but it just hit me how much Mike LOVED atending mass and how much I'm sure he misses it. I felt so bad that he is no longer able to get communion. When I sat back down I prayed that God comfort Mike and let him know that he is in fact with him - that Mike will NEVER be alone.
I always tend to get emotional at mass, after all, it WAS Mike that started to get me to go back to mass every week. While we were dating, this was something he made sure we did each week. Now I am going without him........................

Not Much New

I'm relieved to say that there's not much going on. Courtney was busy yesterday (she helped out her friend who was running her church's 8th grade retreat) and last night both Courtney and Brandon did the "Senior Prom" again. They did it last year - the school takes kids to a nursing home and pairs them with senior citizens. They spend a few hours talking and dancing with their "date". It's a wonderful concept and one that my children love. This will be Courtney's last Prom since she graduates this year.
I spent a few hours today getting my documents together for my taxes. I have to have everything done in a timely manner in order to update the FAFSA forms for college. Courtney did the grocery shopping for me so I could get that done. Her having a license DOES come in handy sometimes.
I'm still coughing but I feel a little better - just tired. The kids also seem to be getting back on their feet.
There's not much news to share, just trying to keep my BIL happy by updating the blog. :)

LIAF Conference

Today was the Conference at Adelphi University. I spoke about navigating the emergency room when you have a loved one with Alzheimer's (or related dementia). I feel I was able to give good advise and a few people even came up to me when it was over and thanked me for speaking. The local TV station was there taking video for footage which they plan to use to when they put their piece out to coincide with the article in Newsday (our newspaper). Afterward a woman came up to the kids and I, and poured her heart out. Her husband had just been diagnosed 2 years ago, he's in his early 50's and they have 2 teenage sons. She lives in Suffolk County and came to the conference hoping to meet me (she had seen our picture in the LIAF newsletter and knew that I would be able to TRULY understand what she is going through). My heart broke for her. We wound up talking to her for about an hour and I felt she would have talked longer because she was finally able to find someone who "walked in her shoes". Courtney reminded me that this was the reason why I talk at these events. If I can help JUST one person, then everything is worth it. It made me feel good and I thought the day was an overall success.

The last few days I haven't been feeling well, it was only a matter of time. It was perfectly timed with the conference. Exactly what I needed when I was speaking in front of a crowd - coughing, sneezing etc. Thankfully I didn't have any disruptive outbreaks.

Courtney and Brandon are still not 100%. I will probably be taking them to the doctor. Courtney said her ear is hurting and Brandon STILL has sinus issues. I keep praying that Mike stays "healthy".

(This picture was taken today at the conference. That's me second from the left.)

Super Bowl Sunday

Brandon is still not 100%. Courtney is getting better, but still congested. My mother's husband, Walter, is now the newest victim of this stomach virus. I'm REALLY concerned because we now know that Brandon must have had a virus and it wasn't the medicine or something he ate, which means the virus has been in our house. I have been continually praying that Mike has a special shield around him and he's protected by his angels and he does NOT get it. I really don't think Mike's body is strong enough to bounce back from a virus as strong as this.
I have been trying to catch little cat-naps here and there so I can remain strong and not get anything myself.
My brother's finger is coming along. We had to help him change the bandage today. Unfortunately the gauze started healing into the wound so he couldn't pull it off. Instead, he soaked his finger for a couple hours so the gauze would fall off on it's own. Courtney and Brandon were troopers and helped him - I did not have the stomach for it. His finger nail was COMPLETELY ripped off -ughhhhhh.
We are watching the Super Bowl, cheering on Mike's favorite team - the Pittsburgh Steelers. It's 20-14 right now in their favor, but that's too close for comfort. I hope they can pull it off, for Mike's sake. GO STEELERS!!!!!