Good from Bad

Brandon got a call early last night from his friend asking if he could spend the night. Apparently he was having some problems at home and wanted to "get away". I said of course, and then spoke with his mom to make sure everything was OK. I honestly felt honored that he would call Brandon. For years, I have been questioned by others and have even questioned myself, about my choice in keeping Mike at home with us. Last night proved that even though our home life may be different, my children's friends still feel comfortable enough to retreat to OUR home. That is a blessing.
Because of what happened, Courtney and I began to realize that they each have friends with problems, and amazingly Courtney and Brandon are the people these friends turn to. When Courtney brought it up, I told her how proud I was that Mike's situation has obviously made them more understanding of certain issues and they are less likely to judge, so their friends feel comfortable going to them for advise. I can't say enough of how proud I am of both of them.
It also came up that one of Courtney's friends has even told her that she considers ME her "hero". She finds it amazing that with all I do for Mike, I still find the time for Courtney and Brandon, I agreed to have my brother move in and most recently, this situation with Brandon's friend.
I truly don't believe I do anything different that what SHOULD be done. I just treat people as I would want others to treat me. I am embarassed and humbled at Courtney's friend's comment, but I guess a part of me is happy knowing that I can make Courtney and Brandon proud also.

Edward Scissorhands

So yesterday morning, Courtney and I were in the kitchen. Gizmo will sleep upstairs with my brother every once in a while. Gizmo came running downstairs and just looked at Courtney and I. I immediately said, "That's not Gizmo". All the hair around his face was gone. Sometime between when my brother went to bed (11pm) and when he woke up (8am), he cut Gizmo's hair. My brother's nickname will now be Edward Scissorhands.

Change

I've been so busy cleaning out Mike's and my bedroom for my brother who's moving in next week. It's been very emotional getting rid of alot of Mike's things. As I go through his clothes, I can picture him wearing certain things at different events and it's hard. When I think about all that he's missing and all that we've lost................

Courtney has bronchitis, so of course I get concerned about Mike. I have been keeping her away from Mike since last week when she started to cough, but germs are everywhere. I can only take more extreme precautions, and hope and pray that no one else will get it.

We planted two trees in our backyard over the weekend for an early Mother's Day present. I've wanted a weeping cherry tree for some time now and a weeping willow was Mike's favorite, so I chose that for one. The other is a purple plum which has purple leaves. I look forward to watching them grow each year.

Youth Rally - 2008

Courtney went to see the Pope at St. Joseph's Seminary on Saturday 4/19/08. She left at 8:30 a.m. and got home at 9:45 p.m. It was beautiful and sunny but strangely enough, there was a rainbow in the sky as the Pope was speaking. She had a great time and it was a day she will never forget. Oh yeah, Kelly Clarkson also performed so she got a free concert out of the day also.

The pictures are of the Pope and Cardinals and Courtney (in sunglasses) with her two friends.

Comments & Feelings

I just wanted to thank everyone who leaves comments for me. I know people have told me they check in every once in a while, but knowing that you all do, makes me feel connected. I don't feel so alone and your comments always give me the support I need to get through another day. I pray that I can help all of you the way you help me.

I was thinking today about how I would "define" Alzheimer's, and I realized that it can often be best described by solitary words. Each of these words (to name a few) have such a deeper meaning and can describe how we feel on any given day, Mike included:

HEARTBREAK, INSPIRATION, FEAR, LONELINESS, DEDICATION, TEAMWORK, FAMILY, TRAPPED, FRUSTRATED, FAITH, STRENGTH, CHANGE, DISAPPOINTMENT, CARING, COMPASSION, PATIENCE, ADJUSTMENT, SLEEPLESSNESS, SAD, COURAGE, SACRIFICE AND LOVE.

So Proud

This morning Courtney, at the age of 16, was commissioned as a Eucharistic Minister. I am so proud of her.
When I think back to when I was young, communion was so sacred. The altar servers held trays under our mouths, just in case a host was dropped. We weren't allowed to chew or touch the host (Body of Christ). Now we can take communion in our hands and as people walk away, they sometimes appear like they're having a 3 course meal, chomping away on the communion wafer. I still can't do that, even though it's been allowed by the church for years. I guess old habits die hard.
All these thoughts came rushing through me as I watched Courtney giving out communion to her fellow classmates. How far the church has come and how honored I feel for Courtney that she can now give communion. I am so proud of her and I know Mike would be also. We told him quite a few times about this big honor, as we tell him so many other events in our lives. We talk to him every day about all the things that have happened, because even though Mike cannot speak (and hasn't in about 3 years), doesn't mean that he does not understand. We may never know what he is aware of, but he is till a part of our family and we share everything with him.

Angels - Part VI

Extended Family.
Growing up, we always seemed to have alot of people at our home, especially over the holidays. My cousins (all 5 of them) lived one block away. My brother and I each had a cousin our age, so we went through High School having our cousins in the same classes etc. I wouldn't consider us really close, but we were definitely connected during that time in our lives.
Then life happens. Some of us went to each other's wedding, some moved away, the usual. I have one cousin in particular who has come back into our lives and we are very thankful for him. He has endured a lot in his life, but now, he finally seems happy and successful. He has three beautiful children and a lovely wife.
He came back into our lives shortly after Mike was diagnosed. He brought me an inspirational book about getting through hard times and even had Mike added to his church's prayer list. He has stopped by occassionally and even helped us out when my dad passed away by helping my brother move some things out of my dad's apartment. He checks in with us every once in a while, even though his own life is hectic. He has provided support and guidance. He even arranged for our alma mater to have it's annual fundraiser in honor of Mike and we were blessed to receive a wonderful donation from them.
I often tell people that I am amazed that I have been able to keep the house and pay the bills (allbeit struggling to do so), and I have been able to do that through the amazing help of so many people. Our lives have been blessed in so many ways, by so many angels. They offer support in so many different ways and show up at the most unexpected times. It is nearly impossible to go through this journey alone.
My cousin came back into our lives and we are blessed because of it. Thank you Rich. You've helped us more than you realize.

Happy One Year of Blogging

One year ago today, I started this blog. It began as a way for my family and friends to stay in touch after Mike came home from the hospital last year. While it still does the job I intended, I decided along the way to use this Blog to help me continue my advocacy and raise more awareness of Early (Young) Onset Alzheimer's Disease and share with all who are interested, the daily lives and struggles of our family as we battle this demon.

Now for some family news - Courtney was appointed Eucharistic Minister through school. She was one of 48 students chosen out of 200 candidates for this position. It is something she has wanted to do since she started at Kellenberg when she found out that they distribute communion every Wednesday in assisted living facilities on the dementia floors. It was a long wait, and thankfully it had a good outcome. None of her other friends were chosen, so of course, she's upset for them. She was also one of 38 students picked from her entire school (2500 students) to see the Pope at the youth rally this coming Saturday. Her ticket came in the mail on Saturday and she has been walking on cloud nine ever since. What a blessing for her and a once in a lifetime experience.
My brother will be moving in by the end of April. It has been quite hectic for me since I have 20 years worth of "stuff" to move out of our bedroom. Hopefully everything will work out for all of us.
After almost 4 months of being sick with chronic sinusitis, Brandon FINALLY seems to be doing better. The ENT still brought up the topic of surgery to remove his adenoids once again (they were removed when he was 5 but grew back), but as long as he is doing better, I will not be addressing that option seriously.
Mike is still holding his own. This month, it is seven (7) years since Mike was diagnosed. Since I've been cleaning up our room, I've come across letters he had written to me dating back to 1998 in response to my concern for his forgetfullness. I guess I need to acknowledge that Mike's problem existed long before he was oficially diagnosed. That thought scares me, and pains me at the same time knowing Mike was fighting a losing battle without either of us knowing it.

Young Onset Conference

Today Courtney, Brandon and myself went into NYC to attend the AFA/JCC Conference on the "Let's Do Lunch" program for people with Early Onset Alzheimer's Disease. (The director is determined to change the usage to Young Onset because many people, even professionals were confused between Early Onset and Early Stage).


It was emotional for me because it was Mike that inspired the program. While I am pleased that our situation with Mike's illness was able to bring about something so useful, helpful and unique, I still feel a pang of sadness that this program was not around when Mike was first diagnosed.


We were able to meet two other wonderful families that are just beginning their journey with this disease. One I had "met" over the internet last year, but lost touch with, the other is someone from right in my area of NY. For years I have been connecting with people all over the United States, and now I have found another family that lives only about 15 minutes away. We seemed to have so much in common, that my daughter called this woman my "clone".

I hope to stay in touch with these women and of course, I will pray for their families.

(This is a picture taken today with the director of Let's Do Lunch, Connie Wasserman - our angel).

Angels - Part V

Friendship.
It's a powerful and strong connection, but Alzheimer's Disease is something that has usually always had the power to destroy it. One of the most painful ramifications of this disease is the friendships which I never thought I would lose, that have disappeared. People I that I thought would be lifelong friends, stop calling and visiting for whatever reason. One exception to this rule is Mike's dear friend Tom.

Mike and Tom grew up in the same town. Through tragedy, they realized they had alot in common (they both lost their parents at a young age). As I mentioned in a previous post, when you find someone that has walked in your shoes, the connection is priceless. Tom and Mike were friends all during High School (Chaminade). We had out infamous nights out. Tom and his friend actually gave me my first and only "upside down" shot - something I will never forget. When Tom had knee surgery, Mike would take walks with him to help him get his strength back. Then we each got married. Tom was an usher in our wedding.


Through the years, we would see each other every once in a while. We saw each other at our children's Christenings, birthdays etc. But as happens in life, we didn't see each other as much. When you have a good friend, you know in your heart that you don't need to see each other every day to know that the bond is still there.

Tom has truly been an angel for Mike throughout the years. When Mike was first diagnosed, Tom would take him to different events, always making sure to "keep an eye out" for him. He would stop by on his lunch hour with sandwiches or sometimes coffee. He was a constant in our lives. Courtney and Brandon got to know and love him also. He has helped out in so many ways, but none so important as being there for Mike. Now that Mike cannot speak, he still comes to visit and will often just hold his hand. He speaks to him, even though Mike can't answer. Tom has even begun to bring his son with him and when they visit, it feels as though we are "normal". We have been isolated all these years, it's almost as though we have the plague. Tom makes us feel good. I love the fact that Courtney and Brandon have gotten to know Mike's friend. It gives them yet another glimpse into the window of Mike's past.

Tom and his wife have 3 children of their own, they just completed MAJOR renovations on their home and Tom works long hours, but he STILL finds the time to visit and sometimes he even brings over some nice homemade dinners/soups. We even have a new favorite recipe that we lovingly call "Tom's Chicken". His wife made it, but he was the messenger and we loved it so much, we make it often. When Mike was in the hospital, he visited us there. When Tom looks at Mike, he sees past the Alzheimer's, and actually sees a person.

Angels come in all shapes and sizes - this one in particular is about 6 foot, with reddish hair, glasses and a unique sense of humor. We love you Tom and we thank you for remaining a true friend to Mike!!!!!!!!!!!

Angels Part IV

One of the things this disease does is bring people together that normally would not have met. Alzheimer's Disease, especially, EOAD, with it's unique obstacles and problems, can create a bond between people that were once strangers. I have been blessed to have met a few of those familes. No one can TRULY understand what I am going through, unless they are going through it themselves. Family and friends are a GREAT support, but the emotional connection you feel with someone who walks in your shoes is priceless.

-I met a woman who's husband, brother-in-law and mother-in-law all have/had the disease. Like me, she is a vocal advocate in trying to raise awareness. They were recently featured on a CBS special which I'm sure reached many viewers.
-I met a husband who's young wife was recently diagnosed. They have three young children and he struggles the same as I in caring for his wife while raising young children. The loss can be overwhelming at times, but we get our strength in our faith.
-I met a young woman who's husband went to seminary school, who also has young children.
-I can't forget my first e-mail buddy from Florida. We've become great friends and I've actually visited her twice. Her husband was diagnosed with Frontal Temporal Dementia, which can often be even more difficult to deal with, as it affects the personality more than it does with memory loss. She also has three young children who's lives have been turned upside down.
-I have also just recently reached out to a woman who's almost in my own backyard who's husband was diagnosed at an early age. They too have 3 children, one of which will be attending the same school as Courtney and Brandon.

I will continue to reach out and help connect with anyone and everyone I can. We are all in this together. We all have that dreaded connection, but I can say from experience that it definitely helps to have someone to "talk" with who can truly understand. Whether we choose to become advocates or not, what we do on a day to day basis is quite unique and will make all of us stronger and more compassionate because of it. I may not be able to offer much, but please know that I will ALWAYS be here for any of you if you need me.

I thank you all for being my friends. God Bless and stay strong.

Blessings

Many years ago, when Courtney and Brandon were still small, Mike and I would go to visit his grandmother almost every Sunday. It was a ritual and one which I loved because the kids were getting to know their great-grandmother. More often then not though, Mike's grandmother would start to cry because of the loss of her daughter (Mike's mom). Of course we were sympathetic, but when it started happening every visit, it became too much. At that time I remember saying something to Mike and I remember it like it was yesterday. I said, "If I should be so blessed to live to the ripe old age as your grandmother, I hope that I will focus more on what I have, rather than dwell on all that I don't".

You see, I always thought she should feel blessed. She had 2 sons who doted on her. She had 3 grandsons who either called her or visited her every week. They remained in touch with her, which is an oddity for guys in their 20's/30's with their own lives. I kept thinking about older people who never had any family visiting them and how lonely they must have been and wondered why Mike's grandmother did not see that she was really LUCKY. Of course losing a child is devestating, and I will never down play that. But I felt her energy should have focused more on what she was blessed with.

Fast forward 20 something years and I had to practice what I preached all those years ago. One night I was lying in bed next to Mike feeling sorry for myself. Our current "bedroom" is approx. 6x12 and holds basically just our bed. My side of the bed is against the wall which makes it difficult for me to get in and out of. Mike is always tucked in with the best of our covers, nice and comfy. Me, I had 2 worns blankets as I huddled against the wall. I thought of all my friends lying in their big beds, with fluffy comforters/blankets and pillows. I felt cheated.

Then one night in the heart of winter it was REALLY cold and windy. Then it HIT ME like a ton of bricks. Instead of feeling cheated because of my sleeping situation, I should feel blessed. I HAVE a bed with blankets, I HAVE a comfortable bed (So big deal that it's against the wall), I HAVE a roof over my head...all things other people could just wish for. It was then that I realized that I needed to practice what I preached. Instead of dwelling on all that I lost, I needed to be thankful for all that I have.

Since that night, I can't go to bed without saying a special prayer for those people who are less fortunate than me and thank God for all that I am blessed with: Mike laying next to me, Courtney and Brandon being healthy young adults and supportive family and friends.

Shingles

Last week, I noticed a red mark, almost like a pimple on Mike's back around his waistline. Instead of going away, it got bigger and started to spread. I was concerned, so I called his medicaid insurance carrier and they arranged for a visiting nurse to check it out. She came yesterday and believes that Mike has the shingles.

He had them once before back in 2004 when he was in the pysch. hospital for medication adjustment. The nurse explained that they can be brought about by stressful situations. When she said it, it hit me like a ton of bricks. Nathan was gone for 3 weeks because of his back injury. Could Mike have actually realized that he was gone and that his schedule was different? Could he have been stressed out because of it? I definitely think so. I also think that him not feeling well and having the pain of shingles, could have contributed to the "S" he had on Tuesday.

Once again the difficulties brought on by this disease rears it's ugly head. Even though Mike cannot communicate verbally, does not mean he does not understand.

Cleaning out Memories

As I previously mentioned, my brother is definitely moving in with us. The situation has it's pro's and con's, but bottom line is, I will not let him be out on the street.

In preparing for this, I need to clean out Mike's and my bedroom, which is where my brother will be "living". Part of me is glad this has happened because it's pushing me to do this. Since we haven't used this room in 4 years, it has become somewhat of a "catch all" room. It's a MESS.

I started to clean yesterday. We have a headboard that was also a storage unit and I came across some special items Mike had saved, along with a ton of pictures (I guess it was out of sight, out of mind). It was so sweet to see what he saved: his high school I.D., a Mother's Day card we gave his mom when she was in the nursing home, a test from when he was 7 1/2 years old, a 6 month anniversary card I gave him after we got married and English money he saved when he went to London back in 1985. He also saved a few awards and plaques from his years at Strober.

Last night I began looking through the pictures. Many made me laugh, but most of them made me cry. There were so many of Mike with Courtney and Brandon laughing and having fun. Part of me was at peace knowing that they will always have those memories, yet part of me was sad because of the life they will never have with Mike. There were a few of Mike with Brandon (father and son) that spoke volumes. I can't imagine what Brandon is feeling by not having his dad around. I try my best, but it's just not the same.

Cleaning out our room will most likely have this affect on me continuously. I guess I should consider it a form of therapy, which I understand is never easy.

Hidden Emotions

Last Sunday at mass, an older man in the front pew was having some problems. Courtney and I thought he might be having a heart attack. His family tried to comfort him without too much commotion, but too many people saw what was happening. The priest stopped his homily and a member of the congregation called 911. Luckily, there was a nurse present and she tended to him while he waited for the ambulance. He looked scared and confused. Most people were concerned of course. For me, it hit HARD. I guess all the supressed emotions of times when I was caring for Mike in time of emergency pushed through. My heart started palpitating, I started sweating and ringing my hands and I teared up. I had to control myself for fear of looking like an idiot, but that was hard.
The man's name is Albert and we all prayed for him. We do not know what happened, but were relieved to see him walking to meet the ambulance. I can assume that whenever I may run across an incident like this, my reaction will be the same. When emergencies happened with Mike, I usually stayed strong and stoic for him and the kids. I now realize incidents like this will stir up those repressed emotions and open the floodgates for these emotions.
Also yesterday, Mike had another "S". This is his third in 6 months. I was not home when it happened, but my mom, Walter and his aide saw it (Brandon heard it from upstairs and came running down). My mom, understandable, was QUITE shaken and I feel guilty that she had to witness it. So now begins another phase of walking on eggshells and wondering what will happen next.

Angels - Part III

Mike worked for a building supply company for 13 years before he got sick. He considered his co-workers his family. He spent 12 hours a day at work and another 1/2 day every other Saturday. Suffice it to say, he saw his co-workers more than he saw his own family. These people were at our wedding, Mike's parent's funerals, the children's baptisms and birthdays.

About 2 weeks before Christmas in 2000, Mike came home and ran upstairs to the bathroom. This was unusual, so I became concerned and ran up after him. He emerged about 10 minutes later with a hand written note. This note explained to me what he couldn't - he was "let go" from his job. He was devastated. Bear in mind, he had been to a few doctors in the previous months because of our concern about his memory. Now he felt like a failure. He couldn't even support his family. I panicked, not only short term, with 2 small children and Christmas around the corner, but long term, "how was I going to keep the house on one salary?"

Imagine my surprise that after this happened, I had not heard from anyone from his company. With the exception of one man, no one had called or checked in after he was dismissed. I kept telling myself that there was NO WAY these people did not know there was a physical problem with Mike. To this day, I do not now the grounds for his dismissal, but anything was possible at that time. I know in my heart, nothing he did or didn't do, was out of his own free will. Mike was the most loyal, hard working, honest and kind hearted person anyone has ever met. He was almost perfect to a fault.

It hurt Mike and I terribly that after he left, after putting 13 years of his heart and soul into the company, no one kept in touch. It was a sore spot for us. Imagine my shock then that after our appearance on The Oprah Show aired in 2004 (3 1/2 years after he was let go) I got a call from the office manager. Apparently she had seen the show and just couldn't believe how bad things were.

To this day, I say that it took alot of strength for her to call. Many people, after not having been in touch for years, would have been too embarrassed and not called. Instead, they went into high gear.

Over the last 4 years, Mike's old company has been TREMENDOUSLY supportive and helpful to us. They have arranged a few fundraisers that have pulled us out of a few desperate situations. A contractor that Mike knew well put in a ramp and deck for us (at no charge) and another re-did our front room to make our "bedroom" when Mike was no longer able to negotiate the stairs. They have kept in touch and have visited often. One co-worker even came to our home a few times to shovel snow (and he does not live close). The list can go on and on, but I probably wouldn't have enough room. They have been a Godsend more than once.

These people that became Mike's family through work, have remained our family through his illness. They show what true caring can accomplish. Not only the company, but many contractors and builders that knew and loved Mike have been generous in so many ways.

The biggest gift they gave was not in money or material though. They had a trade show where they had a table set up as a fundraiser for our family. The children and I went and got so much more than we expected. So many people came up to me and the kids, telling funny and caring stories about Mike. Courtney and Brandon were only 7 & 9 when Mike was diagnosed. They were too young to really know their dad. These people made it a point to go up to them and tell them what a wonderful father they had. It made my heart swell and the pride they left with was far better than anything they have ever been given.

Thank you Strober Building Material, especially: Jeanne, Harry, Richie, Mike, Brian and Thea. Your big hearts and generous gifts have NEVER been forgotten and you will continue to be a part of our family.