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.

Tonight, they walked...

Today is Palm Sunday. Unfortunately, my brother, who usually keeps Mike company while I take the kids to the 6pm rock mass, didn't feel good today. My mom offered to come over and stay with Mike, but I just couldn't let her do that. She's getting older and tires easily. So what did Courtney and Brandon do??? They walked to mass by themselves.

I am at home with Mike right now listening to some christian music on TV (our very own private rock mass) and my heart swells with the pride and love I have for our children. Most kids look for a way to get out of mass, our children will do anything to get to mass. So tonight, they walked. And while I am sad that I missed mass, I know in my heart that I don't need to go to mass to practice God's words. I do that everyday while I care for Mike.

Suffering

As I've indicated in my profile, I am a reader. Most of my reading is light hearted, although every once in a while, I pick up something of "substance". Courtney had to read: Man's Search for Meaning by Viktor Frankl for school. After she finished it, I asked if I could read it, which I am in the middle of right now. I came across the following passage which touched me. If you don't know, Viktor Frankl was a survivor of the concentration camps. We could all learn something from his will to survive.

"...When a man finds that it is his destiny to suffer, he will have to accept his suffering as his task; his single and unique task. He will have to acknowledge the fact that even in suffering he is unique and alone in the universe. No one can relieve him of his suffering or suffer in this place. His unique opportunity lies in the way in which he bears his burden.........."

The last sentance is what jumped out at me. I continually believe that they way in which each person handles adversity, defines them as a person. I have told Courtney and Brandon from day one, that because of Mike's illness, we can sit back and moan and groan. We can have the "poor me" attitude and be angry at the world, but I advised them against that. There is so much suffering in the world and we are no different than anyone else. Mike's illness DOES have the ablity to make us better people though. We have become united, more compassionate and understanding of others. We have come to realize what is really important in life. We are stronger people because we have not used Mike's illness as an excuse. We've embraced it as a learning experience and we continue to get through each day because of our faith.

Thankful

I realized that the last week has been REALLY difficult for me. I am being tested in huge proportions. But one thing I have to keep repeating and understanding, is that I am THANKFUL. Throughout this whole financial, Nathan & job fiasco, Mike has remained healthy. I am deeply grateful and blessed that Mike's health has stayed "status quo". So in the midst of all this craziness a bright light shines. Family and friends often question me when I say things like this. But you know what, things CAN be worse. I've been there, I know. So no matter how hard it may be, I will always look for the sun behind those clouds. Hope keeps the spirit strong.

HOPE
by: Hope C. Oberhelman

Hope is reaching out for God and knowing he is there,
Hope is searching for release, and finding it through prayer...

Hope is happiness and joy, and rainbows in the sky-
Hope is feeling God is near when you begin to cry...

Hope is looking for a dream that someday will come true;
Hope is waiting on the Lord, when your days are sad and blue...

Hope is wishing for a star that will bring you peace and light;
Hope is striving for God's love to uphold you day and night!

Another Test

Well, I found out yesterday that Nathan will be out "indefinately". He hasn't called me back, so I'm not sure what exactly is wrong, but the agency called me to give me the wonderful news. Nathan has been with Mike for 3 years, need I say anything else. My concern is that, this is it. Once the back goes, it can so easily go out again. I fear that Nathan will not be coming back.

Of course, his agency couldn't find anyone to replace him, so we had to turn to the weekend aide. Fortunately, she lost her weekday job about 3 weeks ago, so she was available during the week for Mike. I just don't know now whether I will still have her on the weekends. Also, Nathan worked longer hours and I didn't have much to do during the day with Mike. Now, it will be up to me to get Mike washed, dressed and up for the day and I will also have to give him dinner at night (The aide has to leave at 5pm to go to night school).

My whole world has been turned upside down right now and I am trying desperately to keep the faith and think positive. For now, I am just OVERWHELMED.

Monday

So, on Friday, Nathan hurt his back getting Mike ready in the morning. I got a call last night that the agency hasn't been able to find a replacement for him. I will be home today with Mike.
-Brandon left for school VERY upst and sick. Despite being on an antiobiotic since November, his sinus's are still bothering him and today his throat and stomach hurt. Compounded with that, he's worried about homework for one of his subjects and a sport he tried out for. He's also scheduled today for a chest x-ray.
-The last week or so, I noticed a leak under my kitchen sink. Over the weekend, I saw where the water was coming from and touched the pipe. Lo and behold, the pipe collapsed...like it was tin foil. THANKFULLY, my brother came to the rescue and replaced the drains pipes and saved me a few hundred dollars in plumbers fees (which I didn't have anyway).
-I woke up today with terrible sinus pains myself, but I have to stay home and take care of Mike. I'm also nervous about missing yet ANOTHER day from work, especially considering the recent turn of events with my job. This is all the TRUE reality of being a caregiver.
-Oh yeah, I almost forgot. About a month or so ago, after Mike had his last "S", I came down with ezcema. I never had it before in my life and boy was I suffering. I scratched my legs until they bled. My dermatologist gave me sample cream because my insurance co. would not pay the$300.00+ that the medicine cost. I was told that ezcema can be caused by stress. Stress, who has stress????? Anyway, after this past weekend, my ezcema came back. No surprise.
I KNOW things can be worse, but after the last week or so, I am completely overwhelmed. I pray things will work themselves out and I'm trying to stay positive.

Thank you

I mentioned once before, that I write what I do here so people can see all the realities that Alzheimer's Disease brings to families. Some of them are filled with special moments, others are often hard and full of struggles.

I just want to thank those of you that have reached out to me with words of support and encouragement while I struggle through my most recent hardship. I will honestly say that sometimes I am selfish in writing. I truly believe 100% in the power of prayer. By writing about our struggles, all I ask of everyone is prayers. I am touched and humbled when people offer us more. Once again, this disease made people that were once strangers into very special people in our lives.

I thank you VERY MUCH and I pray for all of you too.

Poem

I came across the following poem I found years ago. It's something we all need to remember, whether there's disease/illness in our family or not...

Three Words: A Caregiver Poem
by Marie Henderson

Although my battle's over, the war has just begun,
I'd like to share what I have learned, with each and every one.

I wish I knew the way, to make your understand.
The power that you hold in the palm of just one hand.

The power of a smile, a kiss, a hug, a touch,
The power of soft spoken words, that mean so very much.

Don't give into your anger, frustration or your grief,
Reach inside your heart, and you will find relief.

Don't let the simple things become too hard to do.
I promise there is power in those three words "I Love You".

As you enter on this journey, let God's power guide the way.
Fill your mind with patience, and your heart with love each day.

And when you feel the anger rising up inside of you,
Make use of all the power in those three words, "I Love you".

God will guide me

I've calmed down somewhat since my last post. While I knew things were bad, I still wasn't expecting a pay cut. I keep telling myself, at least "I have a job". For that I am grateful. I will approach this test very much the same way I have approached everything else that has been thrown my way. I will take it one day at a time, and try to think positive. Positive thoughts attract positive actions......I hope. My faith will carry me through. God has guided me through some VERY difficult times, and I have no doubt, he will be there for me again.

Financial Disaster

Well, it happened. I got called into my boss's office this morning. Because of the slow real estate business and the state of the ecomony, he will have to cut back on my salary $200/wk. WHile I am thankful that I still have a job, I am EXTREMELY SCARED. I was barely making ends meet on my current salary, I have no idea what I am going to do. I sit here at work not knowing how I am not breaking down. I don't want to embarrass myself, but this is disastrous. I am so afraid we will lose the house. Please pray for us. God help us.

POP

There it goes, my brain just burst....

I've worked for my very patient, kind boss for 19 years. He is a real estate attorney - need I say anything else. Considering the housing market and the status of the economy, business has been VERY SLOW. Other companies we have worked with over the years, have had to lay off employees. I asked my boss recently if I should be looking for another job and his answer to me was "No, we'll get through this". I cannot help but be nervous about my job right now. My job security, once a constant for me, is now shaky. Add this on to my list of things to think about.

I think my mind will burst....

I go through phases along the way, where believe it or not my mind is "clear" and all seems to be "in order". This is NOT one of those phases. For the past week or so, I feel as though my brain is going to BURST........................

Beside my "normal" everyday worry of Mike's health, added to that I have:

-Brandon's health. He's had a sinus infection for 4 months. He went for a catscan which showed sinusitis. Yesterday I took him back to his ENT and after cleaning out his nasal passage, found a polyp. We'll have to see what happens with that. I just feel SO BAD because he has had a headache and stuffiness since November. He's been on antibiotics for just as long and I hate that.

-Finances. I am having a really difficult time lately. All I hear on TV is about a recession and the housing market. I make sure my mortgage, health insurance, gas and electric are paid each month, but the rest of my bills have to wait. It seems to be getting more and more difficult and this worry is always on my mind.

-College. As you've read, Courtney is a Junior in High School and therefore, has seriously started looking at colleges. The cost of them OVERWHELMS me, and it takes all I have in me not to hyperventilate. She's also learning to drive which is more for me to think about.

Yes, my head feels like it's going to explode.................

People Just Don't "Get It"

I do what I do, to try to get people to understand EXACTLY what it's like to live with a loved one with AD. I've learned along this path, that most people just don't "get it".

Mike needs 24/7 care. He cannot do ANYTHING on his own. He wears adult diapers, his food is pureed and he cannot stand. His liquid has to be thickened to prevent him from choking. He cannot be left alone at all. Would you leave an infant by themselves for even a short time?

I'm finding, especially with Courtney and Brandon's friends, they don't get it. I'm surpirsed that their parents don't get it either. Neither one of them can just "get up and go" somewhere. Everything they do has to be carefully planned, making sure that Mike has someone with him. If Courtney goes out at night, my brother has to come and stay while I pick her up. They cannot go out on the weekends when it's my time to help the aide transfer Mike (she cannot do this alone). They can only be taken somewhere either before, during or after Mike's nap. They can only do things at night when I have somone to stay with Mike. It's plain and simple, but NO ONE seems to get it. Something so simple as a ride home for my children would be SO APPRECIATED, but for the most part, it doesn't happen. It would be a simple gesture to make things easier for us.

We are currently working with our newspaper on a story about AD and caregiving. I TRULY hope that this piece will shed some light on the reality of the disease. Nothing can be spur of the moment, it all takes careful coordination. This is our life - our reality.