God's Love

Brandon stayed at his friends last night. Courtney spent the night at home. I always look forward to Courtney coming home, but lately, she has been so miserable. I KNOW she doesn't like Hofstra, but each and every time she comes home, she starts something. Part of me is happy that she is being a normal teenager, but the other part of me gets upset that I don't have Mike to act as a buffer. I am in this alone and it stinks.
I spent the morning running from store to store to help Courtney get her costume together, but nothing I did was right. She is going with her friends into NYC for the Greenwich Village Halloween Parade. I've always wanted to go, but never had the chance. Hopefully she will have a good time and I will be handing out candy on my own.
After the craziness of this morning, I just felt defeated.....AGAIN. I got to the Target parking lot and just dropped my head in my hands. I felt lost and drained. I trudged through with shopping and came home. The mail was waiting for me and in it was a card from a friend that I haven't seen in decades. The saying on the card was one that I had gotten for another friends years ago when she was going through a REALLY rough time. As I read the words, I felt renewed strength. I knew God had wanted me to feel comforted just when I needed it most. I proceeded to go up and take a shower and relax (LOL) a little bit. The trick or treaters had begun, so I figured I'd better rest when I could. As I was lying down I got a call from one of Brandon's friend's mother. She and another friend told me that they were going to bring Thanksgiving dinner to us so I wouldn't have to cook that day. I laid in bed and cried. I had such a bad morning, but the card and the phone call made me realize that people have NOT forgetten. I am not alone and God will make sure that I know that. It's been 3 weeks since our story was in the paper, and people are still reaching out. I thank God every day for the love and support of so many people.

The hospice nurse came by yesterday and Mike's BP was 80/55. It's lower than normal, but then again, he was sleeping. His normal is 90 (100)/50 (60). I will be keeping an eye on that as usual, because that could be an indication of dehydration.
I stayed home with Mike today and we had a good day. usually when I am at home with him I get very emotional and sad. Today he ate and drank well for me, which is always a good thing, especially after his low BP reading yesterday.
Courtney came home today and will be spending the night, which was good timing because Brandon is spending a few nights at his friend's house. He will be going "trick or treating" over there tomorrow night and hopefully he will behave himself. I pray his ankle stays well, it's been bothering him ALOT lately.
I've been getting a strong sense of what it will be like when both Courtney and Brandon will be on their own. I'm not sure it will be something I like.

Wedding Memories

21 Years ago today, Mike and I were married.

Today is filled with all sorts of memories - good, bad, happy, hopeful and of course, sadness. This is the one day that can really only be shared with your spouse.

It was about 56 degrees and a little misty. We had a beautiful dogwood in the front of our house and I was disappointed because I wanted to get a picture in front of it. I remember the phographer taking the time to position me on the walkway so he could get the dogwood in the backround. I was really nervous about Mike getting to the church on time. He was ALWAYS running late. He had no problem that day though. He was really nervous, I was nervous, but even more excited. During the ceremony, we laughed at my BIL's mustache as he did his reading and I remember Mike whispering "don't drip, don't drip" when we lit our unity candles. We danced our first dance to Genesis' Follow You Follow Me (hence the name of my blog). No one really knew the song, but it made a lasting impression on everyone. I gave Mike a nice slice of wedding cake but he gave me a HUGE slice - and I was still chewing it when I danced with my dad to Harry Chapin's Tangled Up Puppet. I cried like a baby the whole dance. I remember my Aunt and Uncle caught the bouquet and garter and thought it odd that brother and sister were participating in the "garter placing" event. I remember a few of our friends dancing on the tables to Wipe-Out and doing a conga line to Locomotion. I loved the 80's!!! When the night was nearing it's end, I got upset that it all seemed to go so fast, then I remembered that we were leaving the next morning on our honeymoon to Key West and Disney. I remember being worried about Mike driving back to our aprtment because he had a little too much to drink and it was hard to miss us because our friends had decorated our car quite well.

I remember all this and more and my heart breaks because I know that Mike doesn't remember any of it.

Happy 21st Anniversary Mike. I Love you..........

Memory Walk NYC 2009

As promised here are a few pictures from the Memory Walk in NYC on Sunday October 25, 2009.

(Below) I was happy that I got the chance to meet David Hyde Pierce (TV and Broadway actor). He has been working with the Alzheimer's Association for YEARS in trying to raise awraeness. He was extremely nice.

(Above) One of the volunteers offered to take our picture by the balloon arch. As we moved under it, it started to attack us.

Lastly, they had a 3 sided wall for all those who wanted to write something in honor/memory of their loved one. Another kind volunteer took a picture of Courtney and I in front of the area we wrote on.

Just Another Day

Yesterday, Courtney and I did the Memory Walk in NYC. I met David Hyde Pierce (He played Niles, Frasier's brother on the show of the same name). He has worked tirelessly for YEARS in raising awareness and it was such a pleasure to talk to him one on one. We had a great day among many people all fighting the same war. I hope to have some pictures added soon, but I need Courtney's help.

This morning Brandon woke up tired (from watching his beloved Yankees win last night) and his ankle was sore. His sinus's have been bothering him also, so basically, he's a mess. He went off to school very tired. As soon as he walked out the door, Courtney called. Her eye was killing her, it was tearing and irritated. She said it felt like something was in it, and she couldn't get it out. After a few phone calls, I got her to the eye doctor at 10:00 a.m. (she missed her classes today). Bottom line, she has an infection in her eye. She's miserable. Oh yeah, and Mike's aid told me that she was going to be out on Friday. All this and it's only 11:00 a.m.

Times like this is when I realize just how lucky I am that Mike is "healthy". Throw that issue into the mix, I would have been BEYOND crazy. As long as he is "status quo", I can't ask for more. When my day is done and my body can't do one more thing, I will lay next to him and be thankful that he is still with me.

Weekend Plans

Today I'm trying to catch up on everything.
Courtney stayed over last night to help with Mike since both Brandon and my brother were out. It was nice to have some alone time with her. I caught up on a few TV shows I missed and then we got to work making our sweatshirts for tomorrow's Memory Walk in NYC. We already did our BIG fundraiser for the walk here on LI, but we've always wanted to do the walk in NYC. Hopefully, tomorrow we will be able to go. Just like our team shirts for the local Memory Walk, these shirts honor Mike and raise awareness for EOAD at the same time. Hopefully Courtney will get some pictures so she can put them on the blog for all to see.
This weekend is family weekend at Hofstra. We needed to register in advance, and since I never know what will be happening I did not register (too much money to lose out on if we couldn't go). Because of this I am trying to make sure Courtney is busy. Today she went into the city (by herself) to see Finnian's Rainbow. I couldn't go with her because I had to do everything I was going to do tomorrow (food shopping) today, along with my usual Sat. stuff. She didn't seem to mind. She will be meeting up with her friend and her parents at the same show. Tomorrow, I will be spending the day with her in the city (if everything goes OK). After the walk, she wants to go to Central Park to take some pictures of the leaves. It should be nice tomorrow, hopefully the weather will hold out. Brandon is going to see his friend's band play tonight, which should be fun for him since it will also be a Halloween Party.
My mom still isn't doing well. About a week or so ago, she kneeled down to wash her bathroom floor and apparently, she hurt her sciatic nerve and she is in terrible pain. I've been trying to get her to stay home and rest, but she feels compelled to come over. We were all surprised when she DID stay home one day last week.
Mike is doing OK. It's one day at a time, all the time.

Life Goes On

Mike has been restless at night. I am concerned that he is uncomfortable and not sure what's bothering him. He keeps me up with this because when he shakes, it shakes the whole bed. I try to calm him, but I'm not sure if it helps. I spoke with the hospice nurse, and she said the watch it for a few days.
Brandon turned his ankle again on Wednesday night. I had to take him back to the ortho because he thought he broke it AGAIN. It swelled almost immediately. Thankfully, there was no break, "only" a sprain. Now we hope that it recovers in enough time for his surgery on Nov. 24th. He will not be able to particpate in sports or anything else that could harm him until the surgery.
I continue to be amazed at the outpouring of letters and cards, e-mails and FB posts. This disease has alienated us from our oldest, dearest friends (and some family), yet total strangers have reached out to us in so many ways. Their support means the world to me. Right before the Newsday article appeared, I was probably at the lowest I have been since Mike was diagnosed. I felt so alone and lonely. People I had thought I could count on had disappeared. I thought if THESE people couldn't be bothered, why would anyone else? I prayed everyday for strength and guidance. I prayed that some burdens would be lifted.
God heard my prayers and sent me some new friends. People that before this article, were strangers to me and my family. People that struggle themselves, had reached out to us. Some sent donations, yet others sent cards and letters and words of encouragement. I NEEDED this SO MUCH. I know there will come a day when the mail will stop and dinners will no longer be delivered. Life takes over and people fall into their own routine. But that's OK. I KNOW that my family and I have touched many people, we've given hope to some people and a renewed faith to others. We've raised the awareness for this hideous disease, which is EXACTLY what we wanted. In return, I know I have many people praying for us and I know we are not alone.

THANK YOU EVERYONE....

Extreme Validation

Back in 2004, my family was nominated for the show, Extreme Make-Over Home Edition. I didn't know it until I received a call from one of the producers. They called a few times, came to our house a few times (we had to scramble, often at the last minute, to NOT be at home, all the while we had Mike who was sick). They spoke on the phone to Courtney and Brandon and asked: what they would like done, how the would like their rooms and where they would love to go. As fast as they came into or lives, they were gone. No explanation. I never got over that, not for me, but for my children. How could the producers take a family in such turmoil and heartache, give them hope, and then just dump them?? I was SO ANGRY about what they did to Courtney and Brandon. They were so devastated from losing a little of their dad each and every day, and then they thought they were going to get a new house. The excitement brought a new hope to them....... then nothing. I never had anything against the other families that DID get a make-over, but it was the way in which my children were treated that made me angry. People who knew us, all knew we deserved it. It was something I could never get over and could never understand.
Fast forward 5 years and our story appears in Newsday. My friend gave our article to her cousin to read and this girl said, THAT'S THE FAMILY THAT DIDN'T GET PICKED FOR EXTREME MAKE-OVER???!!!!!
Strangely enough, I felt validated. All our friends knew we deserved it, but to have a stranger say it, after reading our story, I felt better. I can't explain it, but it was my "Extreme" validation. This person who didn't know us from anywhere, was just as confused as I was. I felt good.
Does that make sense? Who knows, but I finally feel better.
Mike is doing OK today and Brandon went back to school. I just found out that some parents from the grade school that Courtney and Brandon attended will be holding a garage sale this weekend with the proceeds coming to us. I only say this as another way to thank everyone. I may not know some of the people doing it, and even those I do, I may not get to see them. I just want to thank you ALL, from the bottom on my heart, for your kindness and caring.

Wish for Good Health

Everyone is sick today. Well almost everyone.....
Brandon's throat has been bothering him and I made him stay home from school today. He wanted to go so bad, but I made the parental decision, which believe it or not, he was not happy about. The last time his throat hurt this bad, I had him at the hospital with the swine flu (back in the spring). He's the ONLY one in the family that has not had the regular flu shot, so I am concerned.
My mom didn't come today because she is sick also. She has had some kind of bacterial infection for months that just does not seem to go away, despite antibiotics like Cipro. Her problem began last year when she somehow caught MRSA from Mike. Her arthritis is also been acting up, so she's miserable.
Mike woke up "stuffy" today, so I'm keeping an eye on that. I'm hoping it was just from the heat in the house, even though I DID keep the window open a little. All it takes is something little, so I always get nervous.
I'm exhausted. I attempted to go to bed early last night, but that didn't happen. They say to be careful what you wish for, but I just wish for one or two good night's sleep , as long as everyone remains healthy and my good night's rest isn't a result of an illness.

I Miss My Computer

I HATE not having a working home computer, especially since our story ran in Newsday. Many people have been e-mailing me, blogging me and posting on FB, but without a computer, I can only respond from work. Right now I am on my lunch hour trying to get many responses out. Sorry if you've contacted me and haven't heard back, but this is why. Just like everything else in the world, we don't know how much something means to us until we don't have it.

Last week, I was able to watch and read a few other stories in Newsday. As I read about poor Mr. Rowe and his daughter, I can remember all too well when Mike was at that stage of the illness. My heart broke for the daughter who just wanted to care for her dad, but like me, and all other caregivers in the home, she was met with obstacle upon obstacle. When I read about the Deckers, I watched in awe as Mrs. Decker's health declined. What amazes me to this day is that Mike's health has been like that numerous times, but each time, he rebounded - hence our name for him: The Energizer Bunny. While it's our cute pet name for Mike, I often wonder what God's plan is. It is apparent that Mike is still needed here for something. He has bounced back, when so many others were ready to throw in the towel. Why is that? I look into his eyes and wonder what lesson will he be teaching us that has not yet been taught.

My sister also helped solve a mystery today. Since the story ran, I was getting mail at home, from some very kind people, but I could NOT figure out how they were gtting my home address. It appears that when you go onto the White Pages and put in a person's name and town, their full address comes up. Who knew - but that explains alot.

Another Crazy Day

Mike's friend Tom came over tonight to visit with him. He's Mike's ONLY friend that has kept visiting Mike all these years. He's our angel. My mom isn't feeling well even though she's been on Cipro for multiple infections as per her dermatologist. I fear she may need IV antibiotics. She's been sick for so long. Courtney came home today to help me with Mike because Brandon was out with his friends and my brother is sick with his CVS (cyclical vomiting syndrome. NOT fun). I had to have help getting Mike into bed. The problem arose when Brandon called to say that he decided to stay at his friend's house for the night. I called out a favor to my good friend Mary. Her and her son came to sit with Mike so I could get Courtney back to school. On one hand I'm upset with Brandon for making these last minute plans, on the other hand I am happy he's getting out.

Calls continue to come in from old friends as well as people we've never met. I'm THRILLED that our story made the impact it did. The Alzheimer organizations here on LI have been getting more calls from people for help and resources. I am happy that we have been able to help people, who otherwise may have never reached out. For those of my "blog family" here on LI, look for the 2nd part of the series this Sunday. For those not in the area, you can still check it out at www.Newsday.com.

Meet Mike

Before I begin writing about the subject I intended, I must share my morning "emergency". My mom and Walter had just gotten here around 7:15 am. Brandon was leaving to catch his bus and as usual, we let Gizmo out into the backyard. Two minutes later, he comes running into the house sneezing uncontrollably. I knew it was trouble when he came right up to me. While wiping his nose, I saw blood. Just 5 mins earlier, I had been upset with my mom for coming over this morning (she didn't feel well), but now I was thankful to have 2 extra sets of hands. As Walter held Gizmo's body and my mom held his head, I found the culprit. I proceeded to pull a 4 inch long piece of bush out of his nose. His agitation almost stopped immediately, but it took me another 1/2 hour to calm him down. Times like this that I think - what if I had to take Gizmo somewhere as an emergency and my mom was not around?

On to my main thoughts-
After reading so many e-mails and posts, I was thankful for all your words of encouragement and support, but at the same time, I don't want anyone to forget the person at the core of this story.....Mike. Mike is the most caring, unselfish and loving person I have ever met. This disease robbed him of everything he loved and all you wonderful people will never know the real Mike. Let me share some thoughts with you -
Mike's favorite baseball team is the Yankees (a troubling situation, since I am a BIG Mets fan), his favorite football team is the Pittsburgh Steelers - Why you ask? He told me that becaue when he ws younger, he loved the color of the uniform. He loves Led Zeppelin, Genesis, Cherry Poppin Daddies, The Dave Matthews Band and Blues Travellers. He drank coffee all day long. He was a great bowler, he loved to go bike riding and play baseball/softball. In his quiet time, it was rare to see him without a crossword puzzle. He loved Tom Clancy books and his grandmother's cheesecake was THE BEST, in his eyes. He would do anything or go anywhere for anyone at any time of day or night - no questions asked. When his mom was in a nursing home with EOAD, he would go almost everyday after classes at St. John's to visit his mother, and we would go every weekend. He adored his mom and missed both his parents terribly. He was a good "doodler" and when he was young, he played the accordian. This gave him the uncanny habit of playing the piano one handed. He always dreamed of owning a 1965 black Corvette. He worked REALLY hard and was very conscientous and dedicated. His favorite restaurant was Koenig's in Floral Park where he loved the Yaeger Schnitzel with a Spaten.

I love Mike and miss him everyday. I just wanted to share with you the Mike I fell in love with BEFORE this disease took over.

Donations

This is a difficult post for me to write (since the main reason I decided to take part in this story to raise awareness) , but I am ONLY doing it because many people have asked how they can help, and where they can send donations. I have a VERY difficult time accepting help. I don't want any of you to think I am being rude by not getting back to you, but I have been in touch with Newsday because it appears that they have also been getting requests on where to send donations. I am waiting to hear back from the reporter as to what they plan on doing. As soon as a plan is set in motion, I will advise. God Bless you all.

Don't Forget About Us

I would first like to apologize for not writing sooner. My home computer broke and the one computer I can borrow has a broken "u" key. If I am patient and daring enough, I will use that computer (I have to hit "CTRL V" to get the letter "u". It's time consuming as you can imagine)

I would just like to, once again, thank everyone for all your comments, prayers and words of strength and love. My children and I care for my husband out of love and we do it because it just comes naturally to us. We never thought we were doing anything amazing or out of the ordinary. When I married my husband, I heard the vows, "for better or for worse, in sickness and in health". I KNOW Mike would have been there for me. We married out of love, and it's the strength of that love that enables me to do what I do.

Scentedcottage, Wendy, Liz, Stephanie, Susan, Suset, Wendy, Annie, Laura and Karen C - Thank you for taking the time out of your busy day to write me words of encouragement. JoAnn - I DID work in Friendly's NHP for 9 years, so I'm, sure we must know each other. In fact Friendly's had a reunion this summer. It's a small world. There were NUMEROUS anonymous messages, so I can't thank you all personally, but please know that I TRULY appreciate what you have written.

I pray for a cure for this disease and all I ask is that you remember us and do your best to help keep the subject open. There are NO SURVIVORS of Alzheimer's Disease, no one to march on Washington. Alzheimer patients do not have the voices to speak out. Please help us speak up for them.

It's great to hear from you all today, but please don't forget about us (Alzheimer patients and families) tomorrow.

Thank you and God Bless.

THANK YOU EVERYONE

Our story ran today in Newsday and I have already been contacted by friends as well as strangers. The outpouring of kindness, love and prayers is amazing. This kindenss renews my faith in mankind.
I don't have everyone's information personally so for those I don't have, I wanted to thank you all for your offers of help. You took the time out of your busy day to contact me, so that alone is amazing. Thank you all and God Bless.

Newsday Story

To my blogger family

- our story is in our newspaper starting today. Got to: www.Newsday.com and click on "Alzheimer's on LI". They have pictures of each family they have been following. For ours, they have our story, an AMAZING video and still pictures. They also have excerpts from Mike's Journal, letters he had written to me and Courtney's essay for the AFA Teens scholarship. They also include a daily timeline and a timeline addressing Mike's illness.

It's been a long 2 years, but I fell the outcome is amazing. I hope it raises the awareness this disease REALLY needs.

:(

I've been up since 3:30 this morning. Mike started moaning around that time. I checked his temperature and he was OK. By 8:30 a.m. his temp was 101.4. I put a call out to hospice and they ordered Cipro for him. This past weekend he had been sneezing and coughing ALOT, so I thought it may be his sinus's. I was told that this antibiotic would work for the sinus's as well as a UTI (just in case).
Tonight Brandon is being inducted into the National Honor Society and now I'm not sure I will be able to go. If Mike is not doing well, I cannot leave him with my brother. This would not be the first, nor the last, function I would have to miss. :(
Courtney is wearing me out!!!! No matter what I do or what I say, it's never right. I had been warned about this stage, but I had been lucky until now. I am just worn out and I have no idea wha to do. It seems the only time she is happy is when she is in NYC. She HATES Hofstra and she HATES the work/classes. Everything I do or say, to or with her, is met with anger and disrespect. I'm not used to this and I'm not sure how much more I can take.

Walking the Dog

Since Courtney has been away at school, I have taken to walking Gizmo (our dog) each morning before work. It gives me exercise and gives me 1/2 hour to myself. As I was walking this morning, I passed the local church where Brandon had his Cub Scout/Boy Scout meetings. In one quick flash a flood of emotions took over.
Brandon had just started Cub Scouts when Mike got sick. Our close friends involved with the Troop knew the situation and they were supportive. The other families that we knew only casually, didn't know. I struggled constantly about how they perceived Mike and his childish, often "different" behavior. I was never one to go up to someone and introduce ourselves and explain Mike's illness. I remembered those days when I imagined all eyes on me because Mike was acting more like one of the Boy Scouts than he was one of the fathers. Still, I continued to bring Mike to the meetings and ceremonies, for as long as I could.
At Pinewood Derby time, I would help Brandon design and build his cars. Mike would also get involved, but at that time, he would become very frustrated and it often didn't pay to let him help, because his frustration was not worth it. I always tried to avoid as much tension as possible for Mike and the kids.
As Brandon got older and the Boy Scouts went camping, I accompanied him on those trips. Of course, I would always zero in on the fact that I was there with Brandon, when all the other boys had their dads with them. I didn't want Brandon to miss out on the experience.... so I went camping. Our very first expereience was one we will never forget. Brandon and I went out on a Friday, even though the rest of the troop was going to be out there on Saturday. This was our VERY first camping trip. We had to borrow a tent, sleeping bags, lanterns . I had no clue as to what I was doing. The first night at camp, I had to go to another troop and ask one of the other leaders how to light the lantern. That night it started to rain - storm actually. The thunder and lightning were horrible and the only thing between me and Brandon and the storm, was the thin nylon of our tent. During the night, we heard a crack and a bang. The next morning we awoke to find that a tree had fallen right next to us. The rest of Brandon's troop arrived later that morning, but the rain continued the entire day. It was so bad that there was not one dry part on any of us. Saturday afternoon, the boys were visited by the Head Scoutmaster for Long Island and congratulated each and every boy who stuck it out. By mid-day, most of the other campers had packed it in and headed home, but we stuck it out. That night the boys had a great time around a huge campfire and I never laughed so hard, even if I was the only mom there.

As Brandon got older, the camping trips were becomming more frequent. He appraoched me one day and said that he no longer wanted to be in the Boy Scouts. He had just gotten back from a camping trip by himself, when he said, "mom, everywhere I looked, all the other boys had their dad with them and I didn't". This hurt me to the core and I knew that no matter what I did for him, he would never have his dad to share this experience with. He quit Boy Scouts shortly thereafter.

All these memories and more came flooding back to me, by the simpe, act of walking past the church where Brandon's meetings were held. At that time, I had no idea how long and difficult this journey was going to be. I think that's what upset me most. Thinking about where we were back then, and where we are now, and all that we missed in between.

Burdens

I pray each day that God lifts a few of my burdens - so I can stay strong in faith to fight my daily battles.
Mike has NEVER been, nor will HE EVER BE a burden. Unfortunately we cannot get through life without daily struggles. These struggles have become tremendous burdens for me and I awake with them on my mind each and every day.
For the last few months to a year, it feels as though my burdens have multiplied. They are weighing me down to a point that I feel drained and overwhelmed. I pray every day that God lifts a few of these burdens so that I can channel my strengths for other, more important issues.