Triple Meltdown

Last night and today were bad days for three of us.

--Last night my brother Frankie found out that his "ex-wife" (not officially divorced yet) has Non-Hogkins Lymphoma. Because she was JUST diagnosed, we have no idea what the treatment or prognosis is. My brother is extremely upset and concerned, as he does still care about her.

--Earlier today, I lost it at my bank. For one and 1/2 years, I have deposited Mike's small private disability check into my account. Last year, when I closed out the account with Mike's name, this bank told me that all I needed was to present Mike's POA and I could deposit into my Trust Account. Today was a different story. I presented the check and the teller (who has done this before with no problem) called the manager over. The manager said that because Mike did not have an account in that bank, they couldn't deposit the check. The POA was useless. I found it strange that after 1 1/2 years, it is NOW becoming a problem. Needless to say, I became quite emotional. The reality of my life and why Mike can't sign his name, coupled with the fact that I had to explain this to the manager for all to hear, was embarassing and humiliating. The manager finally conceded, once she saw my tears and said to the teller, "I don't want to get her more upset than she already is". I still have no idea why this was never a problem before and now all of a sudden it is. The manager could not give me an answer. It's times like this when I realize that all it takes is a small rift to break me. I'm more emotionally fragile than I lead myself to believe.

--Finally, Courtney. The poor kid is SO stressed about us affording college, SHE lost it tonight. From the moment Courtney stepped foot on Fordham's campus, she fell in love. While she was accepted to Fordham, she was also accepted to Hofstra (my alma mater) which is only 15 minutes away from us. They gave her a decent scholarship and they also have a good film department. She is preparing herself for not being able to go to Fordham, because she doesn't think we will be be able to afford it. I don't know if she's trying to convince me or herself that Hofstra will be OK if she winds up going there.
This breaks my heart. I know if Mike was still working, we probably wouldn't have this issue. When I went to college, I had no one to help me - I did everything on my own (my parents had JUST divorced and everything was chaotic). I would love for Courtney (and Brandon when his time comes) to have the full college experience, at a school she loves, which I never had the opportunity to do.
Alzheimer's Disease has robbed my husband of his job, his life, his family and potentially my children's future.

Updates

Things have been pretty much the same. I am thankful when my life doesn't go into "overdrive" which usually happens anytime that Mike gets sick. I find myself holding my breath everyday, just hoping to make it through another day unscathed.
--The kids are doing well. Courtney is getting nervous about her senior trip to Florida. Her entire class goes to Disney for 4 days and 3 nights, and this will be the first plane ride she will be taking without me. She an EXTREMELY nervous flyer. I keep telling her that she will be SO EXCITED just being on a trip with her friends, that she won't even think about it. She tells me I'm wrong. That trip is at the end of April. Two weeks before Disney, she will be going to Washington DC on a band trip. I'm so glad that she gets to do these things.
--Brandon does his own thing. He's been out alot at his friends house playing basketball, football and video games. I'm glad he's doing more physical stuff and getting outdoors more. When I was a kid, we were ALWAYS outside. Brandon is getting more and more mature everyday and is on my back about getting HIS lerner's permit. He turns 16 in May and can't wait to go and take the test so he can drive. He's the COMPLETE opposite of Courtney, who to this day, still doesn't really like to drive.
--A very dear friend, who owns her own dance studio and teaches dance at St. Brigid's, contacted me in the beginning of the year about doing a benefit show. She was a help to me when Mike was first diagnosed. I gave her the name of two organizations that I thought were VERY helpful to me in the beginning. Her troupe will perform with all proceeds going to Long Island Alzheimer's Foundation and Alzheimer's Association. One of the dancers in the troupe knows David Hyde Pierce. They were hoping he could come, but he is busy rehearsing for a new Broadway show. Instead he is donating two tickets and two backstage passes to the benefit. This will be the grand prize drawing and I HOPE it will bring alot of money in. If anyone is interested in information on the benefit, you can go to: www.alz.org/longIsland.

FaceBook

My sister had suggested I start a "facebook page" because she thought it would be a good idea to connect with old friends. Courtney helped me "set up" and I am now a BIG fan of FaceBook. In the few short days that I have been on, I have been able to connect with a few cousins that I haven't spoken to in years. I have been able to "see" some friends that I previously have only been able to e-mail. For me, FaceBook is like an enhanced e-mail. You can write and share pictures, but also add a little more "fun stuff". I believe I am hooked.

This weekend we also had a surprise visit from Nathan (Mike's old aide). His daughter and grandchildren were in from England and he brought them over to visit with Mike. It was such a GREAT surprise. I hope that Mike knew who it was.

Mike's friend Tom also visited, although Courtney and I were out food shopping at the time. His wife made some homemade Irish Soda Bread for us.

Overall, it was a good weekend.

A Day at the Movies

Last night, at quite the last minute, Courtney found out that the local movie theatre was playing all 5 Oscar nominated movies in one day. The first movie began at 10:30 a.m. and the last started at 9:45 p.m. She had asked a few friends, but no one could go. She was SO disappointed. Remember, movies are her life. She wants to go to college to study film and hopefully one day make movies. She is in all her glory with ANYTHING movies. I felt so bad for her, but I knew there was no way I could spend more than 12 hours out of the house. We compromised. We bought the tickets ($30 each. For 5 movies and a free popcorn, I thought it was a GREAT deal) and saw the first 3 movies: Milk, The Reader and ......Benjamin Button. We were home by 6:45 pm and had enough time to eat before getting Mike into bed.

It was such a GREAT experience. The manager of the movie theatre held a trivia game in between movies (there was an average of 45 min between each one). The audience got so into it. It was like a "day vacation".

When we got home I checked my e-mail and my girlfriend who is organizing the fundraiser for LIAF and Alz. Assoc. wrote to me. Apparantly one of the dancers in her troupe knows David Hyde Pierce. They were trying to get him to come to the fundraiser. He's rehearsing for a new Broadway show though and can't make it. INSTEAD, he donated two tickets and backstage passes to that show which they will be raffling off as the Grand Prize. Courtney is beside herself and hopes she can win it. Oh yeah, she loves Broadway also. Broadway and the Movies - this is her forte.

I also started a FaceBook page and I'm having fun navigating that. Courtney started a campaign on Facebook to try to get her on The Ellen DeGeneres Show. She's got the creativity, it may just help.

A Funny Duet

http://www.facebook.com/ellentv#/video/video.php?v=1095134419505

Besides my family, two of my favorite people are Josh Groban and Ellen DeGeneres. We came across this video and decided to share. Hope it puts a smile on you face like it did for me.

"Single Parent"

While visiting colleges with Courtney and helping her make difficult decisions, the reality of being a "single parent" is forever in the forefront. This situation has been my reality for the last eight years. I am a "single/married" parent. I am married to a wonderful man, but I am unable to turn to him for assistance and support. Single parents tackle difficult decision-making every day, but that is not who I am. I haven't lost my husband (through divorce or death), known what it's like to grieve and then move forward. I grieve every day and I have to make decisions all the while I am caring for my sick spouse. It's not the same as being a single parent. I am the Head of the Household, decision maker, provider, caregiver, mother and friend while at the same time, having the responsiblity of someone else's life in my hands.

Mike's aid came in Sunday and asked to leave early. She worked from 10:30-1:30 (her hours are 9-7 on weekends). Yesterday, she wasn't showing up, so I called her at 9:10 (She's supposed to be here from 8-6 Mon-Fri.). She told me that she was in Brooklyn and would be late. Long story short, she got here at 2pm and seemed genuinely angry with ME that I asked her to come in at all (she left at 5pm). She never cared to realize that I had my day planned out. Brandon was spending the day with his friend, so Courtney and I were going to go to the movies and lunch (get some quality time in before she leaves for college). While Brandon was able to keep his plans, Courtney and I stayed home all day with Mike. We only got 1 1/2 hours in to run some errands. Mike's aid has NO IDEA what her last minute schedule changes does and I can't get her to understand. She doesn't talk to us much, she's very defensive when I do talk to her, and she's not respectful at all to me, my children or my mom/brother. Why is she still with us - you ask??? She's the only one that can get Mike to eat and drink.
Between Sunday night and yesterday morning, I only got 3 cups of juice and 1/2 breakfast into Mike. He had no dinner on Sunday to speak of, just some juice and ensure.
I believe Mike's aid knows how much we need her for Mike, and she sometimes takes advantage. I HATE being in this position.
There's ALOT going on in our home, between Courtney going off to college and Mike's aid being difficult. I just wish I had someone to help me - to be strong for me - someone I could lean on.
But I don't.....I am a "single" parent taking care of an ill spouse. This is Alzheimer's Disease.

A Walk Down Memory Lane

Last week I got a call from an old co-worker. Throughout High School/College, I worked at Friendly's Ice Cream. I developed some wonderful friendships (even my first love) at this time. They were a great bunch of people, crazy and fun. We had a great time working (imagine that) and we often went out afterwards. There were parties, softball games and picnics. As is always the case though, people eventually fell in love, got married, had children and we all lost touch. Well, my old co-worker has organized a "reunion". 25-30 years after scooping thousands of Jim Dandy's, about 35-40 people will be getting together in 2 weeks. They even started a web page and it has been surreal to see some of the pictures posted, old menus and other paraphenalia (sp?) from "the good old days". In anticipation of this upcoming reunion, I started looking through MY old pictures. I spent 2 hours in the attic yesterday afternoon and only touched on a portion of my past. I found great pictures of my Friendly's days along with pictures from my Channel Home Center days. This was where I met Mike and fell in love. Ironically, the two stores were right next to each other, in the same strip mall, and my Friendly family soon became entwined with my Channel family. There was even a period of time when I worked in both places at the same time.

Looking through all those old pictures really brought me back. I realize that Courtney and Brandon will soon be the age I was then. I hope that they each have as much fun as I did and pray that they are more "restrained" than I was. Yes, I admit that I was a little wild, but all my friends were also very respectful and kind. I can only hope that Courtney and Brandon be-friend the same type of people.

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!!!!!