Monday, December 28, 2009

Humble Appreciation

First, I can happily say that I am beginning to feel better. It took 5 days on antibiotics for me to feel like I can function properly. I look forward to being 100% soon. A bit of irony - I took this Wednesday off so I could relax and spend time alone with the kids, knowing that Mike was in good hands with his aide. This morning I got a call from the HH Agency stating that his aide will be out Wednesday so she could fulfill her requirements for Medicaid. There goes my ONE DAY to relax. I just cannot win.....................

Secondly, I am writing this post with the hope that some of my "Santa's" read it.

I just cannot believe the generosity that people have shown over the last few months. The last 2 weeks have been especially filled with the "joy of giving", but many people that have given gifts have decided to remain anonymous. I am deeply humbled, and sad at the same time that I cannot give the appropriate thanks.

Some people HAVE signed their cards and for that I WILL send Thank you's. Like:
- the residents at the Sunrise Senior Living who held a holiday sale with proceeds going to us
- to the staff of Seaford School District Office who gave up their holiday gift giving and donated money to us instead
- to the staff at Zucker/Hillside (Low 6) for all the homemade goodies and gift cards
Some people have chosen to remain anonymous:
- to the anonymous student from Kellenberg who sent a home-made card with a gift
- to the person who left a card on my windshield this morning with a gift (appropriately tucked in a plastic baggie because it was raining)
and to all the other people who have sent cards and letters in the mail - THANK YOU, THANK YOU THANK YOU.
As I recently said to a friend: I am well aware that money cannot buy happiness, but to be able to pay my bills on time, takes a TREMENDOUS burden off my shoulders.

I wish you all a VERY HAPPY, HEALTHY AND BLESSED NEW YEAR.

Saturday, December 26, 2009

Christmas Joy

Christmas started off VERY good. When we went in to wake Mike up, he not only smiled, but he laughed - ALOT!!! Even though I still feel horrible (4 days on antibiotics and still just as bad as the first day), I couldn't help but feel uplifted and blessed. Mike was just so happy, how could I feel bad?

The day proceeded to go well even if for a few arguments here and there from the two siblings. Brandon has been cooped up for 4 weeks and Courtney has been on her own at school for 3 months. They have each fallen into a routine, neither of which goes along with the other. Trouble was bound to ensue. Regardless of the snafu, the day went very well. After I gave Mike his breakfast and got him tucked in for his afternoon nap, Courtney, Brandon and I started watching Inglorious Basterds. About an hour into it, I went in for a nap myself. I've just been SO tired. This has to have been the worst weekend for us not to have help.

I was thrilled when I opened my present from the kids. I FINALLY got my own camera. No more waiting for Courtney or Brandon. The very first picture I took was of Mike smiling. The kids also got Mike a new Led Zeppelin T-Shirt (he's wearing it today as shown in the picture), and he looked really cool.

I'm hoping that I feel better soon - if I could only get some sleep at night. Even though I have been sleeping on the couch, my throat and glands hurt so much and my mouth gets so dry, I am so uncomfortable, I cannot sleep. I NEED to feel better for next week. My sister and her family will be in to celebrate Christmas/New Year's with us. We are VERY MUCH looking forward to this visit and I want to make sure we are all well.



Mike's Christmas smile.

Wednesday, December 23, 2009

Christmas Surprises

This week has been full of surprises.
Yesterday all the girls at work went out to lunch because I was not able to attend our office dinner. During lunch they presented me with a gift from the entire office. After they saw our article in Newsday, they collected from everyone and gave us a very nice Christmas gift. It brought tears to my eyes.
Today when I came home from work, my mom said that someone rang the doorbell and left a gift bag on the stoop. They ran away so they could not be seen. Inside the bag was a beautiful story about the meaning of Christmas, homemade cookies and an envelope with cash.
Tonight around 6:30 our doorbell rang. Standing on my front step were 2 woman with two large boxes wearing Santa hats. They smiled and said "Merry Christmas - you don't know who were are, do you?" They were two nurses from the hospital that Mike was in back in 2004 for his anger/agitation. They saw the article in Newsday and decided they were going to "adopt"our family for Christmas. They brought food, dessert and gift cards for Courtney and Brandon and the supermarket. I think I am STILL in shock. It's been 5 years and they've never forgotten us. They told me that we were a difficult family to forget because we are "not the norm". They said they very rarely get to see the love and devotion we showed to Mike while he was hospitalized those 2 months.
These surprises show me how much of an impact we have had on other people. The fact that these people went out of their way to prepare 3 meals and dessert, track down our address, MapQuest us and deliver it all to us 2 days before Christmas when I am sure they are busy themselves - is humbling. The fact that another person baked cookies, copied a beatiful story about Christmas and left a gift, going out of their way to remain anonymous, is also amazing.
We have been EXTREMELY blessed and I am thankful and forever grateful to these Christmas angels. It's special knowing that we have touched people's lives.
Merry Christmas!!

Sick & Tired.....literally

Here it is, 2 days before Christmas and I have NOT ONE present wrapped.
I am sick (going to the doctor today). I woke up 2 nights ago not being able to swallow. My throat doesn't hurt, but my tonsils are so swollen, there's barely any opening in the back of my throat. Just what I need. I will also be taking care of Mike myself for 3 days (Christmas, Sat & Sun.) which will not help at all since I will be getting no rest whatsoever. I am so tired I just want to cry.

My birthday was Monday and Mike and the kids got me tickets to see "A Chapin Celebration". I am a BIG fan of Harry Chapin and had seen him NUMEROUS times. His family is performing locally to celebrate his songs and his life. It was a GREAT present and I can't wait to go (April, 2010). Other than that it was just another normal day - as we get older, birthdays aren't as celebrated I guess.


Mike laughed today. I was shocked. He smiles but I haven't actually heard him "chuckle" in quite some time. Courtney is home from school and he's loving every minute. She went in when he woke up and he gave her a HUGE smile and a laugh. It was music to my ears.

Sunday, December 20, 2009

My Snow Angels

Well the "blizzard" came and we awoke to about 18 inches of snow. With no aide, I knew my day would be crazy. For the first time in a L-O-N-G time, Mike and I and the kids were home alone----just the four of us.
With Brandon not able to walk, me caring for Mike, and my brother being called into work to plow, that left only Courtney left to shovel. As much as she likes it, we have a difficult house to shovel (we live on the corner so we have a lot of sidewalk). Just as I began hyperventilating thinking about how I was going to dig myself out, Mike's friend from his job (the same one that came by the other day) called to say that he and his son would be over to shovel for us. What made it even more special, is the fact that they live about 20 minutes away (on a good clear day).
This is a picture of Mike's (Mike's friend from work; they share the same name) son and his friend as they were finishing up. Before they got to us, they had shoveled their own houses and their grandmother's house. Just as they started making a dent in the snow, my other neighbor came by with his snow blower and cleared out our driveway (which had been plowed in).
Yes, there is such a thing as snow angels and these are mine.

Thank you!!!

Saturday, December 19, 2009

Me & The Kids

On Monday Courtney and I went into NYC for a benefit concert. Various broadway stars got together and sang show tunes and Christmas songs. We had a good time, although by the end of the night I was tired. I'm getting too old..


Today, we waited and prepared for our blizzard. Long Island was supposed to get hit really hard. Kids being kids, love the snow and all Brandon could do was sit inside and watch it come down. He was so pathetic. He put on my boot (notice the pink) and Courtney covered his cast with a plastic bag. He sat outside for a little bit before it started to really come down. I went outside to keep him company.
It's still snowing as we speak, and they say we will be getting about 10-12 inches by tomorrow. Love the snow - hate to shovel.

Tuesday, December 15, 2009

Fear, Love and Devotion

I continue to be amazed and humbled by complete strangers.

With regard to people we DO know, a man that Mike worked with came by tonight. Mike worked with him 13 years. Mike has not worked there for 8 years yet every year at Thanksgiving, one of their employees comes by and give us a turkey and at Christmastime they have a collection at work, and give that to us.... every year since Mike was let go. Tonight when his ex co-worker came by, he apologized for not being able to do more, but what he didn't realize was just how much he DID do, and I told him this. This man cries each and every time he leaves our house, yet that will not stop him from coming. He knows he will leave upset, yet his fear does not keep him away. I wish this could be said for everyone. There's not a day that goes by, that I don't think about Mike's only surviving sibling and how he has not seen Mike in years (6 to be exact). I have no idea what keeps him away, but it is beyond anything I can even imagine - to completely ignore your own brother who has a terminal illness. How do people live with themselves? How do they explain that away?

On the flip side, there are complete strangers that have reached out to us with words of encouragement and support, love and prayers - always just when I need it the most. Tonight, Mike's friend from work said that he feels that it's because Mike was always a "giver". He would go anywhere for anyone, and do anything if asked. He helped this man understand Christianity so he could convert for his girlfriend so they could get married in church. He told me once again how Mike explained to him our religion and how important it was to him. He taught this person the meaning behind our holidays and helped him "study" for his conversion.

Mike is a kind, gentle and caring soul. It's no wonder, that even to this day, anyone who meets him, falls in love with him.

Friday, December 11, 2009

Proud Moment

The other day Courtney went back to the High School to help Brandon with his backpack after school. As she waited in the hall while Brandon took his make-up test, she was approached by another student. She had seen him when she went there, but it wasn't someone she was friends with. This young man came up to her and said he had seen our article in Newsday. He began talking about it and soon explained that his 48 year old mother was JUST diagnosed with Early Onset Alzheimer's Disease. He was reaching out to her, even if it was in a small way. I'm sure it took courage for him to approach her and I am very proud with the way she handled it. She proved that the apple does NOT fall far from the tree. She explained to him about a group the school has for students with extenuating circumstances. When Courtney began High School, she was the only student in the group with a parent with Alzheimer's (the rest were students of divorced parents, siblings with disabilities etc.) She directed this boy to that group - which sadly enough will now have 3 members. Three students in a school of 2,000 is scary. The percentages are rising in every community. This high school senior began telling Courtney that he had to hurry to get his driver's license since it was apparent that his mom would soon not be capable of driving. Courtney ended the conversation by reminding him that Brandon still attended the school and that if he needed anything, he should seek him out.

I was proud of Courtney for helping this young man. I was happy that this young man reached out to Courtney because he had seen our story in Newsday. It may have been the connection he needed to help him not feel so alone. We were once again pleased that our story was able to help someone else. Mission accomplished.

Monday, December 7, 2009

Oh the Holidays...

For those who read my blog and are not on Facebook, I will share a recent experience I had.
Since Medicaid changed it's rules, and aides can't work more than 60 hours a week (which IS good for all), my Sundays are no longer free. Whether the agency finds a sub or not, I am with Mike most of the day. This weekend, we decided to get our tree. I wanted a small one, simple and easy to decorate and maintain. Realistically, I knew that with taking care of Mike AND Brandon, my time would be even more limited. Courtney and I headed to Home Depot on Saturday. Saturday, the day it was cold and rained all day. I had no choice, we didn't have Sunday.
When we got "inside" Home Depot (the trees are in fact outside under a covering) I saw a tree that looked good. It stood about 4-5 feet high, and I figured once it was put in the stand it would be even taller.Courtney wanted no part of it. She voiced her opinion immediately. She pointed to another one and I cut the string holding it together. As I stood it up, the smile that came across Courtney's face was priceless. It WAS the perfect tree. We brought it home, along with some roping for the fence and a wreath for the front door.
Courtney lugged the tree off the car by herself and together we brought it inside. She tightened the stand while I held it in place. She mentioned something about the screws in the stand not lining up right. I told her that when my brother came home from work I would ask him to check it out. That night Courtney and Brandon decorated the tree as best they could (Brandon on crutches - Yes a true Tiny Tim) and they planned on finishing it this weekend.

Fast forward to Sunday afternoon - as I walked into the dining room I looked up just in enough time to see the tree fall over, ornaments scattered all over the floor.
Our bare tree is now tied to the wall, waiting for Round Two this weekend.

Oh how I love the holidays......

Thursday, December 3, 2009

The Boy Who Cried Wolf

Well, after my last post I felt bad. My brother woke up the next morning sick, so his "excuse" of being tired was in fact truth. The problem stems from the fact that EVERY DAY, my brother complains about something - his back, shoulder, knees, head, teeth - so that when something is REALLY wrong, I tend to brush it off. I spent the next day feeling REALLY bad.

Brandon went for his follow-up today. The bandage came off and the stitches came out. We thought he had a cast on, but it wasn't. Instead it was about 5 inches of cotton. Now he will be in a cast for 4 weeks, then on to a boot, then PT. When the doctor maneuvered his ankle to test the ligaments, he was pleasantly surprised with Brandon's reaction. According to Brandon, his ankle now felt "smooth".

Mike is still sneezing and coughing. Hospice still doesn't feel like an antibiotic is needed. I'm not sure it is either, because sometimes the mucus is clear, other times it's yellow/green. The nurse seems to think it's because of the dust in our house, but strangely enough, I disagree. My house is NOT the cleanest house around, I admit, but a few weeks back (about the time Mike started sneezing and coughing) Mike's aide cleaned the LR top to bottom. Since then, Mike has been coughing and my asthma has been worse. This is the reason why I leave my dust alone. Once it's moved and has the opportunity to "dance around the house", that's when the problems arise. If you leave it alone and let it just sit there, we're all OK :)

The local Alzheimer's Association has nominated me as their Long Island Ambassador for a new program. I would be working closely with my Congresswoman with regard to all things Alzheimers. It's a new program, and I'm not sure how much time I would need to dedicate to this. This is such an important issue for so many people and I need to make sure I can give it my all. They are trying to find out exactly what's involved and then I will make a decision. I would LOVE to be able to raise awareness directly in Washington.

Tuesday, December 1, 2009

Are all Brothers Alike?

Let me preface this post with the fact that I love my brother, I just don't love the way he acts sometimes.
Mt brother moved in with us last year because his pay cut left him unable to afford his rent. I gave up Mike's and my bedroom for him. He didn't start contributing financially until this summer and even that is not significant. I don't care about the money, but what I DO care about, he finds it difficult to contribute.
Today I got home from work late. I needed to get Courtney to a local library to get a French movie she needed to watch for her French test. When I got home about 6:30 I needed to wash Brandon's hair (which had not been done since last Monday. I had been dry washing it). We normally get dinner delivered to us on Tues., but for some reason no one brought it tonight. I had to scamper around and put something together. I started cooking, but also had to get Mike's bed set up. That being done, I got Brandon his dinner (at 7:00 p.m.) and started getting Mike into bed. Brandon woke my brother up to help me. Yeah, that's what I said. The entire time I was scrambling with all the stuff I had to do, my brother was sleeping on the couch - he was "exhausted". He normally takes Gizmo out for a walk each night for me, but not tonight. He went straight up to bed. After I finished getting Mike into bed, I ate dinner (8:15), then I walked Gizmo. After that I made Brandon's bed (the hospital bed) and prepared Mike's meds for tomorrow.
As long as I can remember, I have ALWAYS put myself in other's shoes to imagine what it's like for them. I believe that is what has helped me along the way for Mike. I imagined his fear, sadness, loneliness and anxiety. I do what I can for him because I imagine what I would feel like. I CANNOT imagine sitting on the couch and watching as my sister cared for her hsband and her children. I would never have the selfishness/thoughtlessness to ignore her situation - yet my brother does just that on a daily basis. Yes, he does help me a lot, but if the time is not right for him (as it was tonight) then he retreats to his room and sleeps.
I could NEVER, ever, ever, EVER be like that. Are all brothers like this?

Sunday, November 29, 2009

Thanksgiving

These past few days we officially celebrated Thanksgiving, but Thanksgiving is something that we should celebrate every day.
I will not lie, these past 6 days have been REALLY difficult. I didn't realize the enormity of Brandon's sugery and the affect it would have on me. With Courtney away at school, he is my only helper. For the next 4-6 weeks, I will not have him to help me (He needs to be non weight bearing on his right foot). This would normally not be a problem, but since I am already caring for Mike, adding another person into that mix that needs ME, makes it all the more difficult.
Thankfully, we have Mike's hospital bed in the living room. Mike takes his daytime nap in it, but at night, he sleeps in the room with me. Brandon and Mike have been sharing the bed. Each night I have had to "make" Brandon's bed (putting his sheets etc on it) and each morning I have to undo Brandon's bed and turn it back into Mike's bed.
Since Brandon cannot put ANY weight on his foot, he can't even get a glass of water himself. Sure he can go to the kitchen and pour the drink, but he needs another set of hands to bring it to where he wants to drink it. That's just one small example, but the bottom line is, now there are TWO people that are counting on me to help them.
This weekend we were all looking forward to Courtney coming home for Thanksgiving, but Brandon's surgery took center stage. I feel really bad that I didn't get to do what I would have liked to do with Courtney. Our aide wasn't around a lot, so we lost alot of time and the time I DID have, I had to make sure Brandon was OK. Bear in mind, he's on painkillers since the surgery. He's 16 and not used to the effects they can have on the body. Anyway, needless to say, Courtney was disappointed with her visit this weekend and I can't blame her. I am even more exhausted than I thought I would be.
The one thing I DID get to do was get Brandon out of the house and I took both him and Courtney to see The Blind Side. The movie was excellent and I would recommend it to everyone. Taking all of the above craziness into consideration, I am extremely thankful. I thank God every day for my children's health, my health, our home and our friends and family. We may not have as much as some, but we sure do have more than others. The movie yesterday helped to reinforce that thought.
We should give thanks EVERY DAY, not just once a year.

Thursday, November 26, 2009

Where do I begin....

Brandon's surgery went well. We were at the hospital for 12 hours. It took him a little longer to come out of the anesthesia (in case you didn't know, he had his cartilage & ligaments repaired. When he fractured his ankle in March, it didn't heal properly). He was in A LOT of pain that night. He slept downstairs on Mike's hospital bed and I was in with Mike. I felt horrible when Brandon was "knocking" on the wall for assistance for 1/2 hour and I didn't hear him. His pain has been terrible and we are hoping that it gets better every day. He will be on crutches for 4-6 weeks and totally non-weight bearing. It will definitely be a challenge. The night of the surgery, I was running back and forth between Mike and Brandon.
Mike seems to be doing better, but he has still been coughing a lot during the night.
Courtney came home for Thanksgiving. I love having her here, but I think Brandon misses his one on one time with me. Beside being uncomfortable from the surgery, he now has to share his time with Courtney.
I also found out that we won't have an aide on Sundays anymore. Apparently Medicaid will not allow aides to work for more than 60 hours a week. Mike's aide worked 10 hours a day/7 days a week, so she has to give up one of those days. She chose Sunday so she could attend Church. Unfortnately the agency cannot find ANY aides to work on Sundays. It amazes me that in this economy, people won't jump at a chance to work. But it is what it is and I will lose one of the 2 days that I had to try to relax and get things done. I now have only one day of the week to get my shopping done and everything else taken care of...unless of course by some miracle, an aide is found.
A bit of good news - NY Senator Gillebrand is trying to get a bill passed that would give more money for programs for Alzheimer's patients and help for caregivers. The story in Newsday brought to light the reality of this disease and she was made aware of issues that needed attention. We have inspired change. I couldn't ask for anything more.
Happy Thanksgiving to Everyone.

Sunday, November 22, 2009

Better day

Today was a better day for all of us, bit still not great. Last night Mike slept comfortably after I gave him the suppository. His moaning stopped and eventually, so did the gurgling. Today he looked better when he woke up, but he is still not himself. His eyes were less glassy and red. When he coughed this morning, mucus came out, and I've came to the conclusion that he DOES have some kind of sinus infection or upper respiratory infection. I did not give him the Levaquin today because we are all in agreement with the fact that the medicine must have given him the upset stomach. He ate less and drank less today, because we want to make sure he's 100% before we get him back to his same routine.
I spent all last night in bed worrying about what today would bring. I worried about telling the kids that dad can no longer eat/swallow. Add these worries to the additional worries I have about Brandon's ankle surgery on Tuesday and I'm good for nothing. There are days when it just feels like it's too much to handle. I know that I will eventually dust myself off, get off my pity train and start again tomorrow.

Saturday, November 21, 2009

Mike is Sick

Last night Mike began moaning. He sounded very congested and had a lot of gurgling noises coming from his throat. I tried pounding him and "rocking and rolling" him, but he would not/could not cough anything out. This morning after we sat him up in his chair, he coughed a little, but it was like he was holding back. He was very sleepy, yet he wasn't his "normal"sick. He was lethargic, but not floppy. He slept right through his nap. When he woke up, and we started moving him back into his chair, he started moaning again. I called Hospice and when their "on call" nurse called me back..... Long story short, "give him Tylenol every 4 hours for the discomfort and call on Monday if it's the same, so you can talk to his regular nurse". Why do I get these hospice agencies??? I told the nurse I would like to figure out WHAT is causing his discomfort, but it fell on silent ears.
Now my mind begins to race: Cou
ld the gurgling mean that Mike is beginning the phase of not being able to swallow? Could he have a reaction to the Levaquin they prescribed over the phone on Thursday for a possible sinus infection? Could he just have a stomach virus? You see, when he DID cough strongly a few times, he kind of threw up. I'm thinking that he doesn't want to cough becau
se he's afraid he will throw up. I gave him an anti nausea/vomiting suppository that Hospice had left here. I hope he sleeps comfortably tonight without the moaning/pain. I HATE that he has pain and cannot tell me where it is.
Needless to say I am REALLY tired since I was u
p with him last night. Becau
se I am tired, I am emotional, so I've been crying on and off all day.
Hopefully tomorrow will be a better day.

Thursday, November 19, 2009

Even the Strong....

I started this blog a few years ago when Mike was sick as a way to keep my friends and family updated. I thought that if anyone "found" my blog along the way, it would also be a good way of raising awareness.
I've always considered myself a strong person. I take after my dad who did what he had to do, no matter what. He never complained, he was outwardly always upbeat and NEVER lost faith. I look back at some of my entries and it sounds to me like I complain alot, and I don't like the way it makes me feel. I don't want to complain and I don't like a "poor me" attitude, so I apologize if at times it comes across that way. I guess what I am trying to convey is how this disease can weaken the resolve of the strongest people. It can really take you down, and you don't realize it's happening. If I can feel the way I do at times, then what about people who aren't as strong as I am? It's no wonder that some caregivers break down.
This disease is a CONSTANT uphill battle. When one battle has been won, it's on to another and another, and the only way the war is over is when our loved one passes. This disease has no remission, no cure rate, no survivors.
Forgive me if at times it seems like I am complaining, that was never my intent. This blog allows me the opportunity to vent and teach others what living with someone with Early Onset Alzheimer's is all about, no sugarcoating whatsoever.

Monday, November 16, 2009

No normal for us

If there's one thing I can't do, it's provide a "normal" life for my children. Since Mike's diagnosis, we have never been able to pick up and go. Our life has always revolved around someone else's schedule - usually Mike's aides. Let me make it clear, that I do not want sympathy, I just want understanding. The holidays are coming up and chances are that Mike's aide will not be here, understandably she would want to spend time with her own family and friends. This is true for Thanksgiving as well as Christmas. As much as I love Mike, his care will take up the entire holiday day, so how much time really will I get to spend with Courtney and Brandon?
The simple things in life for most families, are an impossibility for us. This is because we CHOOSE to care for Mike at home, but even though we CHOOSE to take care of Mike at home, it does not make us less human, with emotions like envy and sadness for all the things other families can do, at a moments notice.
Thanksgiving break is coming up, and many of Courtney's friends are coming home. In planning their long weekends back, many are planning family trips/events in order to catch up on time with their families because they have been away at school. I have nothing to offer Courtney, besides maybe a movie and a day out for lunch. It isn't exciting and it's something that can be done anytime. My children are not complainers, but it hurts them when we can't steal time away to do something fun and different. The last REAL vacation we took was about 4-5 years ago. Beside our overnight visit into NYC in August, we've done nothing else.
I feel so bad that I cannot give my children the excitement and spontaniety (sp?) that they so deeply deserve.
This is our life with Early Onset Alzheimer's Disease. This IS our reality.

Saturday, November 14, 2009

Better News

Mike's aide is OK. Her blood pressure and sugar levels were too high, but she is fine. Thank goodness.

Yesterday, Courtney went to Penn State to see my nephew (her cousin) perform in his last show while in the school (he graduates in May). Penn State also had a football game this weekend and hotels were hard to come by, so my sister booked a room at a hotel in Clearfield PA. It's about an hour away from Penn State, and it will be the same hotel we will all be staying in in May when we go to Steve's graduation. Courtney called when they got there amazed at the memories it brought her.

Clearfield is the place where I realized that Mike was ill. I will explain.....

One of Courtney's friends moved there, and each August, we would go for the purpose of attending the Clearfield County Fair. It was a "real" fair with baking contests, livestock contests, concerts and rides. It was there, in August of 2000, that Mike said to me, "so where is Courtney anyway". It was after that visit that we came back and made an appointment with Mike's doctor. The last time we went to Clearfield was the year Mike was diagnosed (he was diagnosed in April of 2001). The following August (2001) we went for the last time. It was sad because we always had such a good time. It was a yearly trip that we all looked forward to. When Courtney called today to tell me that the hotel they are staying in tonight was right across the street from the Super 8 we stayed in one year when a stray dog came runnig into our room during a severe thunderstorm, I was flooded with emotions. Who would have ever thought, that night, 9 years ago, when we had Brandon, Courtney and her friend Lori, jumping on the bed screaming in fear of this dog, that our life would be like this today? Not me. My mind has been racing ever since Courtney called, thinking about all that has happened since that time.
I am also tired because I was up ALOT last night with Mike. He was very restless again, shivering, making groaning noises and coughing. He seemed fine today, so I'm not sure what happened last night. I do know that I lost alot of sleep and I'm tired.

Friday, November 13, 2009

Bad News

I got a phone call tonight that has the potential of creating BIG problems. Mike's aide is in the hospital. I don't know exactly what happened, but her friend left a message that apparently she "collapsed" as she was getting off the bus tonight. They brought her to the hospital where they determined it's her blood pressure. I care about Elaine VERY much, she's a great person and wonderful with Mike, and I feel bad that my first reaction to the news was "oh no, Brandon has 3 appointments next week for his surgery. Who will be here with Mike?"

I will try not to think that far in advance and try to figure out how I will get through the weekend. Caring for Mike is NEVER a problem, but when I take care of him, I can never get other things done. My life goes into pause mode. I hope and pray, for Elaine as well as Mike, that she feels better soon.

Wednesday, November 11, 2009

Veteran's Day

This post was written yesterday, but I couldn't post it until today because I had trouble at home on my "u-less" computer.

I just want to take a moment to thank all the veterans of today and yesterday for their service to our Country that allows us the freedoms that we have today.
My dad was a WWII veteran, and he couldn't have been prouder of the time he served in the Navy. Because of this, we were raised in a very patriotic household and holidays such as this and Memorial Day, truly meant something. When the kids were little, and they had off on Veteran's Day, I would always take them to our local park. They had a Veteran's monument and I wanted them to understand that the day meant something - that it just wasn't another day off from school. Years later, we had my dad's name engraved in the Memorial Wall at the same park, where he will be remembered forever. The opening day ceremony was very special for my dad, and we were so happy that we were able to share it with him. He would always tell us how different things were "back then", how he actually lied when he enlisted (he wasn't yet 16) because he wanted to serve so bad. I doubt many men or women would do that today. It's a different time.
Putting all political views aside, we should be proud of our armed forces and respect them and honor them every day. God Bless our troops.

Monday, November 9, 2009

Swallowing

I finally met the hospice nurse on Thursday. I spoke to her about Mike and his mucus problem. It's nothing new, but it just seems to be getting worse. After he eats, especially at night, he builds up alot of mucus in his throat. He can still cough it out, but lately, it's been taking me longer to get him to cough it out (I do the chest pounding & the nebulizer). My concern is: the day he will no longer be able to cough it out OR the day the mucus goes into his lungs. The nurse suggested the Transderm Scops patch. Apparently, it dries up the mucus in the throat for patients who are having problems swallowing. It's meant to help with motion sickness, but it's used for this purpose also. We keep it on for 3 days and change it.
I put it on Mike on Friday, and I really haven't seen a difference. We'll wait and see. Last night he coughed alot after dinner and he brought a TON of the mucus up (sorry for the subject matter) so I'm not sure it's actually doing anything.
This hospice also started measuring the circumference of Mike's arm, which when measured regularly, will determine if Mike is losing weight. This is something the other hospice didn't do, and yet they were going to discharge him for no decline. He could have been losing weight yet how would they have been able to tell?
Brandon is also getting nervous about his ankle surgery (scheduled for 11/24). We have alot coming up with that (pre-surgical testing, medical clearance etc.), and Thanksgiving will be here before we know it. Right after that is Christmas.......YIKES, I'm not ready.

Friday, November 6, 2009

If it's not Mike, it's Gizmo......

I went to bed early last night because I was tired from the night before (I had watched the Yankee game with Brandon until 1:00 am) At 10:30, I hit the hay completely exhausted. I fell asleep, no problem. At 3:00 a.m. Gizmo began barking and barking... constantly. I worried that if he woke Mike out of a sound sleep, it would bring on a "S". I tried to ignore him but after about 15-20 mins., I finally got up to see what he was barking at. At that point I didn't care if there was an intruder - enough was enough. I checked out the house and the only thing I saw was that our back light had gone on (sensor) which was most likely triggered by the wind. I grabbed Gizmo and brought him back into bed.
Gizmo began his life with us as a crated dog, but when Mike began going to the hospital frequently, I let Gizmo sleep on the bed with me. - company for both of us. Big mistake. When he jumps off the bed in the middle of the night, he cannot get back up. He then cries, and whines and pulls at the covers until I slide myself out of the corner of the bed and pick him up. There are nights when I am up and down with him many times.
Gizmo came back onto the bed and I was petting him with one hand and holding Mike with the other, trying the relax the both of them. After another 1/2 hour of this, I saw he was still jumpy and was ready to bark at any moment. At 4:00 am I finally grabbed Gizmo and went to sleep on the couch. So last night, Mike was OK, but Gizmo kept me awake.
As for the college situation, today is another day. I woke up renewed and ready to face our struggles. I'm sure things will work out but I think what upset me MOST about the entire phone call yesterday, was the COMPLETE lack of understanding. The Dean was so cold. If he said what he needed to say, in a more understanding manner, I don't think I would have been so upset. What would it have taken for him to say, "Mrs. Henley, I'm very sorry to hear about your husband's illness and the problems it has caused, but unfortunately....I'm sorry we just can't help you. Good luck with everything" Instead I got a robot with no feeling or compassion and I believe THAT is what hurt the most.

We WILL be OK.

Thursday, November 5, 2009

GoodBye Fordham

Courtney's dream......gone.

I wrote a letter to Fordham's President explaining our uniqe situation. He in turn forwarded my letter to the Dean of Admissions. I called today and spoke with him and he matter of factly, and without any kind of understanding, stated that if Courtney is accepted again this year, we should not expect ANYWHERE near the amount of the financial aid offer she was awarded as an incoming freshman. He told me that my expections for transfer aid were not within reach and he said it rather coldly, completely contradicting the value of the religious basis of the university.
Courtney had applied to Fordham last year and was accepted (she got the acceptance letter when Mike was in the hospital and we were all thrilled). At the time, we thought that was the only hurdle to clear. Wrong.......Truth be told, Alzheimer's Disease has nearly bankrupted us. On SO MANY LEVELS, we are struggling. It is because of the catostrophic situation with Mike and his illness that my credit is shot. I was not approved for a Parent Loan and my credit made me inelligible to co-sign a student loan for Courtney.
Not only has Courtney watched her dad disintegrate right before her eyes, not only has she witnessed and endured more than most people would in their entire adult life , but now her dream of attending Fordham has been squashed.
Right now my even bigger worry is whether Courtney (and eventually Brandon) will be able to continue her college education.
Mike's uncle offered a personal loan to Courtney for this year, but the next 3 years are up for grabs. Without a student loan, we cannot afford college and we cannot get a student loan because she doesn't have a qualifed co-signor. With everything I have done for Mike and the kids, this situation still makes me feel like I'm a failure as a parent.
I write this through tears because it's just one more worry, one more hardship and one more piece of our lives that has been destroyed by Alzheimer's Disease. I've ALWAYS told my children to never give up hope, but right now I'm having a difficult time listening to my own advise.

I had off today to assist the substitute aide for Mike since she does not know his schedule. I planned on using the time that Mike naps to get some paperwork and calls done, but after that depressing call to Fordham and the uncertainty of Courtney's college education, I couldn't concentrate. I accomplished nothing.

I know if I was a single mom, widowed mom or if Mike didn't live with us, Courtney would get more aid. Once again, it seems like we are being "punished" for doing the right thing. Because we love Mike and keep him well and keep him at home, my children's futures are in danger.

Please continue to pray for us.

Wednesday, November 4, 2009

Rushing

I am getting SO TIRED of rushing for the sake of others. I am forever doing all I can to appease everyone and I can't break the habit. If my mom needs something, I gotta get it. The aide wants to leave early - I rush home so she can leave (even though she comes in late sometimes when I NEED her in on time). If the kids need to go somewhere, I have to switch my schedule around to accommodate them. My boss frequently takes vacations (he can after all, he is THE boss) but when I need to take a day to do something (NOT for myself) I feel bad and he gets upset. I don't think I have taken a day just for myself in Y-E-A-R-S. All the time I have taken from work has been because of aide issues, Mike issues, kid appointments, my doctor appointments etc. - NEVER just for me.
I want to walk to the beat of my own drummer for once. I want to pace myself and get where I get and do what I need to do..... on my own time - not for anyone else. I know I will never be strong enough to follow through with this, but it will remain a dream of mine.

Tuesday, November 3, 2009

Signs

Hopefully I will be able to meet Mike's hospice nurse on Thursday. The nurse we signed up with had been rotated off Mike's case and we got a new nurse about 2 weeks ago. Unfortunately, because I work, I have not met her. Mike aide has to do "in service" (they go to their agency and sit through a presentation in order for them to keep working) on Thursday, so I will be home to meet her. At that time I will be asking her about Mike's "gurgling". We have been dealing with this for the last year or so, but it seems to be getting worse. It's always after he eats and it takes us a while of moving him, pounding his back etc to get him to cough it up. I can almost say with certainty, that it has to do with his swallowing ability. What I don't understand is why this has been happening for so long.

I recently read a list of "things to look for near the end" and amazingly, Mike has been dealing with quite a few of them for almost a year. The gurgling, the drooling, the cold hands and feet, the contractured arms and legs, being non-verbal , immobile and dropped jaw when he sleeps. His eating has slowed down also and he has lost weight. Mike has never followed the rules, and this gets me quite nervous at times. So WHAT DO WE LOOK FOR? Since Mike has experienced all of the "signs" for so long now, what do I have to guide me?

I would NEVER want Mike to suffer, and I just want to make sure that we are not pushing him too much.

Sunday, November 1, 2009

The Oak Tree

I wanted to share with everyone the message of encouragement I received from my friend yesterday. No author was acknowledged.

A mighty wind blew night and day. It stole the oak tree's leaves away,
Then snapped its boughs and pulled its bark until the oak was tired and stark.
But still the oak tree held its ground while other trees fell all around....
The weary wind gave up and spoke, "How can you still be standing, Oak?"
The oak tree said, "I know that you can break each branch of mine in two,
carry every leaf away, shake my limbs, and make me sway.
But I have roots stretched in the earth, growing stronger since my birth.
You'll never touch them, for you see, they are the deepest part of me.
until today, I wasn't sure of just how much I could endure.
But now I've found, with thanks to you, I'm stronger than I ever knew.

I hope this helps each and every one of you when you feel like giving up.

Saturday, October 31, 2009

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.

Friday, October 30, 2009

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.

Wednesday, October 28, 2009

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..........

Monday, October 26, 2009

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.

Saturday, October 24, 2009

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.

Thursday, October 22, 2009

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....