Year's End

It's been a while, but things have been crazy...actually they are always crazy, who am I kidding.

Mike's aide had been out a few days and having subs always creates it's own issues. Thankfully we survived.

Getting ready for Christmas this year was more difficult than last. Brandon seemed busier than usual and Courtney's classes extended into this week -added to that fact is that she is still working at Disney, so when she's not at school, she's working. Therefore, there was little or no time for them to help me lug decorations down from the attic. I was able to decorate but not as much as I have in years past. I believe this was a foreshadowing of my future. With Courtney and Brandon both in college in Sept., for all practical purposes, I will be on my own.

Last week I got one of the biggest surprises of my life. While at my desk on Fri afternoon, I looked up to see my sister (she lives in Pennsylvania), Courtney and Brandon walking in with a bunch of balloons, yelling Happy Birthday. My first thought, which I said out loud was, "it's not my birthday". Unbeknownst to me, my sister had been conspiring with Courtney and Brandon for her surprise visit to NY since September for my 50th Birthday! Once I got over the shock of seeing my sister in my office, I was informed that the next day we would be going into NYC to see Rock of Ages, see the Rockefeller Center Christmas tree and go to dinner. Courtney had to request off the entire weekend for this to work and she and Brandon were "in charge" of Mike Saturday night so I didn't have to rush home. It was the best birthday gift ever. The show was excellent - brought me back to the carefree time of my life. I sat there thinking about how Mike would have loved the show. We had a full day and we both slept very well that night. The next day my sister left early because the weather was terrible (torrential rain). I was terribly humbled by all the time, effort and money that it took to make it all happen. Once again I was given proof of how blessed I am.

Last week though, was a different story. Mike woke p on Wednesday with a 102.5 temperature. He was very congested. Thursday Mike's aide was out, so I stayed home with the sub. I was supposed to go to my office Christmas dinner that night, so Courtney was home to help with Mike. Unfortnately, I never made it to the dinner - Mike was terrible. He continued with the fever all day Thursday and his congestion was so bad he seemed to have problems breathing. Courtney was nervous and asked that I call hospice. I chose not to because I KNEW what they would have said - what I've heard before...."this is it" I did not want to hear it. On Friday morning I DID call hospice, and they prescribed an antibiotic. I was exhausted from not sleeping for 3 nights, but I only had to go into work for 1/2 day. I prayed for numerous reasons, the first and most important was that the medicine worked and help Mike get the mucus ot. It tore my heart out to see him struggle to breath. He wanted so much to cough, buut was fighting it.

Today is day 3 on medicine and it seems to have helped. He has been fever free since Friday and he'e been coughing and sneezing alot of "stuff" out. Once again the reality of Alzheimer's Disease reared it's ugly head, and the roller coaster ride took off once again. When Mike is that bad, there's no way for me not to think, "maybe this IS it". Then I think about and prepare for "IT" - wondering exactly what it will be like. Just as I prepare myself for what could happen, Mike turns a corner and starts recovering. It's a cruel disease, on all levels. When I think about all the illnesses Mike has overcome, all the health scares he has beaten, it's no wonder we call him the "Energizer Bunny"

On a more positive note, it was confirmed last week that for next semester Courtney will be living on camps (for her first semester at Fordham, she was living off camps in graduate housing). We hope this will help her experience Fordham at it's fullest and make it easier for her to connect with other students with the same interests. Living off camps as a transfer student in graduate housing isolated her and she was having a difficult time. Moving on campus is a plus, having to move her out of her current dorm by this Wednesday - not so mch. It could not have come at a worse time, but I will make it happen. Anything to get her on campus.

Brandon got his first acceptance letter from Quinnipiac Unversity (Ct) for the physical therapy-athletic training program. He was estatic, but I am not quite sure why he's been so nervous. Like Courtney, he has an A average with his best subjects being math and science. He applied to Quinnipiac under rolling admission. We expect to hear from his other choices within the next 3-4 weeks.

In case I do not back before Christmas, I wish you all a peaceful and relaxing Christmas. I pray for good health, to be shared with good friends and family. Thank you all for yor friendship and support.

Memory Lane

Brandon will be graduating next June and with that comes all the same activities and planning as I did just two years ago with Courtney. When Mike and I were planning our family, we desperately wanted to have our children close together. Our thought process was that by being so close in age, they would be on the same playing field, hopefully sharing the same interests and that they would grow up to be the best of friends. We prayed that no matter what, they would always be there for each other.
At this age, it sure doesn't seem to be the case. There will be occasional and very rare moments when the two of them will be talking, maybe even laughing together, and I wish Mike was aware so he could see that our wish may indeed have come true. When they argue and fight, a part of me hopes that Mike doesn't realize what is happening.
When Mike and I were planning our life, we didn't realize just how hectic things would be as our children, so close in age, got older. This year, Courtney is helping me with Brandon's yearbook dedication page. We spent one evening looking through boxes and boxes of pictures, looking for the photos we thought would epitomize Brandon. In searching through these memories, I was once again confronted with the past, and all that we have lost. Not just me and the kids, but Mike - and all that he has never fully experienced. I am so caught up in trying to stay afloat in the present, dealing with our daily struggles, that quite often I forget the life we used to have: the way Mike used to be, the relationship we had before we got married, his relationship with Courtney and Brandon, our dreams and hopes for the future.
I can be somewhat thankful that I am so busy each and every minute of the day, that I don't have the time to re-visit those memories. At any given moment, when I see a dad with his chidren, I tear up. I remember those days as though they were yesterday, and mourn for the life Mike never had to share with his children. Alzheimer's robs it's victims of those memories, those cherished snapshots of time and events that make up our past and create the person we are.

Thanksgiving....

A time of year to give thanks for all that you have.

I feel like it's Thanksgiving everyday. A few months back, I was struggling with so much and became angry, resentful and jealous. Strangely enough, it was a kidney stone that made me realize how much can be taken away in the blink of an eye. I was in such severe pain and I was so scared because I did not know what was happening. I immediately thought of the worst and I'm sure that fear made my experience even more difficult. After I was told it was "only a kidney stone", I was so relieved. When I think about what could have been......
Yes, Mike has been suffering with Alzheimer's Disease for 9 1/2 years now. When he was diagnosed, I never expected him to be with us for so long. I look back and think of all we have been through with him, all that he has suffered, and I am extremely THANKFUL that we still have Mike with us at home where he belongs, happy and healthy.
I am THANKFUL that me, my children and family are all basically healthy. Without our health, where would we be?
Two and a half years ago, my salary was cut drastically. This sent me into a downward spiral I have not been able to dig myself out of. I lost my health insurance because I could no longer afford the monthly premiums and along the way I have lost my car insurance, had my phone and TV shut off (they have all been re-connected...until next time). Yet in this economy, I am THANKFUL that I at least have a job. Each day I can wake up and go to work and know I will be getting a paycheck at the end of the week (no matter how small it may be :). There are many people out there not as fortunate as I am.
My car in almost 10 years old and we only have one (even though now there are 3 of us driving). I am EXTREMELY THANKFUL that I have a car and that it has been reliable and good to us. Each day it rains, snows or it's cold/windy, I look at the people in the neighborhood waiting for buses and I thank God I have my own transportation.
I am so THANKFUL that we have so many good friends, neighbors and organizations in our life that have been there for us these 9 1/2 years. We would have never survived this long without all their help and support. We also would have: no heat, no ramp or no bedroom for Mike and I - without the continued love and support from Mike's old co-workers. Each and every year they have never failed to deliver a turkey to us for Thanksgiving - that's 9 years! The fact that they have not forgotten us, for that we are THANKFUL.
I can go on and on, but I think I made my point. Even though we all have struggles and difficulties in life, we should still remain THANKFUL. Things can always be worse, for no matter how bad we have it, there will ALWAYS be someone out there suffering more than we are. I lost that mindset for a while, and I was miserable. Now each and every day I thank God for all that we have and all that he has given us.
HAPPY THANKSGIVING TO ALL THOSE WONDERFUL PEOPLE IN MY LIFE!

AFA Telethon taping

Last week we were invited to the taping of The Alzheimer's Foundation of America telethon which will be aired DECEMBER 4, 2010 on NBC.

The kids and I were thrilled at the opportunity to be witness to such a ground breaking event which took place Wed. Nov. 10th. This is the FIRST TIME in the 25 years that I have been dealing with the disease that such an event has taken place on National Television. We were honored to be asked - and as an added bonus, star struck with the celebrities that were present. Beside those at the actual event, there were very famous and powerful people who pre-taped messages to be played during the show about how and where to donate. Needless to say Courtney and I almost fell off the floor when our idol ELLEN DEGENERES, did her part. She has so many followers and she has the ability to reach so many people. I was beyond happy that she had agreed to take part in the telethon for this very important cause.

As you will see WHEN you watch the telethon, the Foundation focuses on the CARE for individuals and their caregivers. While research is imperative, organizations such as the Alzheimer's Association raises money for that. As Hector Elizondo so eloquently said, "while there's currently no CURE for this disease, we have to do all we can to help CARE for those with the disease". That was the main objective for this event. They touch on: young onset, day programs, the explanation of the disease, their "Quilt to Remember", and even how to get young children to understand the disease.

I was so honored that they chose Mike's mom's picture and Mike's picture as part of a tribute to those affected by the disease.

The taping was a great experience and as much as I would love for this to be an annual event, I pray that it will not be necessary.

Anniversary/Respite

Yesterday Mike and I were married for 22 years. This year, more than past, I had a difficult time dealing with the day. The night before I was dreading the day and I walked around pretty much all of yesterday in a funk. Maybe it's because of how difficult things have been lately, but for whatever reason, this anniversary made me much sadder than previous years.
We still have no washing machine so I spent my anniversary in the laundromat (the repairman came last week, but needed to order a part. He will be coming back on Tuesday). This is not at all where I pictured we would be back on that beautiful day 22 years ago. The future I had hoped for is no longer possible.
Brandon has also been having a difficult time with everything lately and I worry about him. I believe the reality of being a senior in high school and that he will be going off to college next September has really hit him. I also believe it's been hurting him even more when he realizes just how much of his life his dad has missed. The other day he said to me, "mom it's been almost 10 years. I was 7 when dad got sick!" That single statement put so much in prospective for me. I remembered when I was 17 and my parents divorced - I felt like my world had collapsed around me. I shared that thought with Brandon and he said to me, "at least you had both your parents until you were 17".. wow.. I began to second guess myself and the decision to keep Mike at home. Both Courtney and Brandon CONSTANTLY tell me that they wouldn't have it any other way, but did they realize at 7 & 9 years of age what they would have to sacrifice? Should I have made an executive decision to override their wishes? Once again I think about the two other woman who were in the same situation as I was. They took a different route - they divorced their husbands, placed them in assisted living facilities and remarried. Their children have countless opportunities that mine will never have. Just the other day Courtney went to the "study abroad" fair at school. She would love to study film in England. Her one friend from high school will be studying abroad in Italy for the second time next semester. Courtney just wants to go once, yet when she heard the fee was $17,000.00 PLUS, she knew it was impossible. I asked her to check and see if her financial aide and student loans could be applied but she doesn't believe so, but will be check it out anyway. Meanwhile one of the children in the other family has been to Europe twice. Once as part of a Student Ambassador program, the other with her family.
Brandon said to me, "mom something good HAS to happen soon". My heart broke for him. They see our family doing all the "right" things, but sinking deeper and deeper every day while those who took a different route (whether right or wrong) and chose not to devote their life to caring for their spouse, being rewarded.
"Faith" - I tell Brandon, and I explain to him how much I have been struggling lately.

Then it hits me, it's been 5 years since the kids and I have been on a vacation - I mean a REAL vacation. We have taken "trips" to DC and Pennsylvania, but with all the running around we did, I would hardly call them a "vacation". RESPITE - something imperative that we do not get. Five years of 24/7 caregiving with no rest and I believe we have finally reached our breaking point. Sad part is, there's no way for us to change that situation. I feel better knowing that we haven't "given up" and it's the simple fact that we are all tired, spent, worn out from giving so much yet not being able to rejuvinate ourselves. It could also be a contributing factor in why we have been arguing alot more lately.
Courtney is 19 and Brandon is 17 - they are teenagers. Teenagers who never had their dad the way most children do. Children who have devoted their lives to caring for their dad, when it should have been their dad caring for them.

Caregiver Conference

Yesterday I was asked to be a part of a Caregiver Conference held at a local nursing home. It continues to amaze me how many caregivers are out there desperate to find guidance as they navigate their way through the Alzhiemer's Disease maze. As with the others I have participated in, this one had speakers and workshops - all designed to help those caring for a loved one with some kind of dementia. I don't think they ever had any when Mike was first diagnosed, at least I was not aware of any. It's a wonderful "gift" for these professionals to give back to people who have entered into a very scary, unpredictable world.
I was part of a panel that included 6 caregivers - 3 of whom who care for an older parent, 3 caring for a spouse with "young onset". All the stories were unique to the family, yet similar for the disease. I am always proud to sit among people who have gone above and beyond in caring for a loved one, whether it be at home or in a nursing home. Unless someone has walked in our shoes, they cannot possibly understand, so to sit with others who have gone through OR who are going through the same tragedy, makes me feel "safe" and comfortable. When I take part in these events, I feel like I am with extended family.
As I was walking to my car afterward, a woman drove by and stopped me. She was also a part of the panel, but we did not get to speak very much before or after the presentation. She slowed down and rolled down her window, put her hand on her heart and started to cry. She expressed her shock at Mike's age at diagnosis and wished me well. We spoke for a bit and she went on her way. Fellow caregivers can communicate with very few words - often none are needed. We know in our hearts.

Back on Track

After last week's scare with the kidney stone, I was able to get myself "back on track".
It seems as though the negativity and depressive tone of my mom and brother had been bringing me down. For years I was always the one that had the positive outlook, but lately (and as you all can attest to), I have been in a "bad place". Last week, I turned the corner back to where I am supposed to be. I prayed alot and just made my decision that no matter how bad things are, they can ALWAYS get worse. This is the mantra I would repeat to all who know me, but I lost sight of that. Obviously, it's easier to just feel beaten than it is to fight, but now that I am feeling better and for that brief glimpse saw what could have been, it gave me renewed energy to continue on my positive track.
In fact just this morning, I was already tested. My mom was doing her daily laundry at my house when all of a sudden we heard a "crack". I thought the washer door had broken. When I inspected the machine I saw that the rubber around the entire drum was basically "mutiliated". I could have gotten really upset and said, "here we go again", but instead I said, "Thank you God that I have an extended warranty". Even though the repair person can only get to us on Tuesday, I feel blessed to have the extnded warranty to pay for the repair.
I'm back to the place where I want to be - no health insurance and all......

I am feeling better than last week, although not 100%. I still feel discomfort, which concerns me. A VERY DEAR FRIEND of mine is having one of the Urologists she knows review my CT Scan to make sure everything seems to be OK. My problem is that I read my report thoroughly and it mentioned a number of other issues that I now have on my mind. While it's in the report in black and white, I am hoping that the issues are not as serious as I think they are, and they may be issues than many people have. I am trying to remain calm.
Mike's hospice social worker came by this morning. My mom had just mentioned to her about my visit to the ER last week and I apologized that I couldn't stay and talk because I was running late for work. Despite this, she says to me as I'm walking out, "Have you thought about funeral arrangements? I was not assigned this case in the beginning and it doesn't look as though anyone has ever spoken to you about this". Yep, this is what I was asked as I was walking out the door to work. Her question isn't what bothered me, so much as it was the timing or her lack of consideration. I just looked at her and said, "I've thought about alot, but I have too much on my mind right now and I'm getting too upset before work". I drove to work in disbelief, not sure where to even begin.
Murphy's Law has been in full force the past few weeks. I need to constantly remind myself to dwell on the positives and blessings, rather than the negatives. Thank you all for your prayers.

Crazy Week

At the start of this week I had planned on reaching out to my blog readers and asking for your prayers. The power of prayer is an amazing thing and my faith is what keeps me going. I wanted to ask that you each take a minute or two and say a prayer for me and my family. During the last nine years of Mike's illness, I have never before been so overwhelmed: physically, emotionally or financially. I did not feel things could get worse and I was looki0ng for your help. It doesn't matter what religion you are, who you pray to or what you believe, I just needed to know that strong and powerful prayers were going out for me. As this week comes to an end, you will find out just how much I need them now.

On Tuesday, right after dinner, a pain, the likes of which I have NEVER experienced before, started in my back. I thought it was gas, so I took Tums. My brother was upstairs resting (he's had his own health issues) and Brandon was with me in the living room, but I had to leave to get Courtney from work (She commutes from Fordham in the Bronx out to Garden City 4x a week for her job at The Disney Store). Driving to get her was a complete blur - the pain was unbearable. I didn't know whether to cry or throw up. When I got to the mall I got out of the car and started pacing (which must have looked suspicious to Security), but I just couldn't sit for another minute. I was going to explain to Courtney that I couldn't wait with her at the train station, that I had to drop her off and run, but with one look at me she said, "mom I'm taking you to the hospital". Two things entered my mind, 1) what about Mike? The ER can take hours and if I'm stuck there for the night, who will prepare his food and meds in the am?; and 2) I have no Insurance. Yes, for the first time in my life, I have no health insurance. I was going to wait it out, but both Courtney and Brandon were convinced that I has appendicitis and was concerned it would rupture. The look on their faces made me cry even more. With all they had been through with Mike, to see their stronghold collapsing in front of them, crying out in pain, they were petrified. I went to the hospital for them. The two hours in the waiting room was the longest ever - I was pale, rocking back and forth and running into the bahroom to throw up. I wasn't saying a word and I felt bad for Courtney each time I went into the bathroom. I could see the look of relief on her face each time I came out - I could read her mind, "what will I do if she takes too long? Did something happen? What would I do?" I wished I could ease her mind, but at the time I couldn't even think straight. 2 1/2 hours later after a CT Scan and some of the worst pain I have EVER felt, it was confirmed that I had a kidney stone. I have a very high tolerance of pain - in fact I had Branfdon COMPLETELY natural, no drugs at all, but this pain was so bad, the morphine they gave me, only took the edge off.

We left the hospital at 1:30 in the morning. Courtney missed her one class on Wednesday. Brandon left school early. Brandon did an AMAZING job getting Mike into bed with my brother and I couldn't have been more thankful or proud of each of them. They really stepped up to the plate when I needed them the most.

On Wednesday the pain was still with me and I tried to figure out how I would know if it passed. I spent the next 2 days drinking 2-3 QUARTS of water and FINALLY last night I believe it passed. Then about 3 hours later the pain started again, and it felt like something else had passed. So far, no more pain. Of course, Mother Nature and/or God has a sense of humor because on Thursday I got my period. Seriously????

THANKFULLY Mike remained status quo throughout, I guess God thought, "enough is enough". Now that my pain is gone, I am left to worry about how I will be paying for the ER visit. The hospital gave me paperwork to fill out for "Charity Care", which I will no doubt send out when I get back to work.

Courtney and I still don't have health insurance and it weighs on my mind every minute. As I said, I have never not had insurance, my whole life. Social Security feels that I make too much money for coverage under Family Health Plus - and they actually sent me paperwork saying I can get coverage if I pay the $3,300/month premium. That would be added to the $1,200/month I'm supposed to pay for Mike's aide (which I haven't done in months). I wait every day for a call from the Agency telling me they have to pull Mike's aide because on non-payment. There's not much I can do because I just don't have the money.

And this is where I get frustrated and angry. I've worked since I was 16 and paid into social security. Now that I need assistance, hopefully only temporarily - I do not qualify for it.......Yet, there are other people out there that JUST came into the country and they qualify for everything. I hate feeling this way, but our government gives me no choice. I need their help, but they don't care.

THAT is why I asked for your prayers. Ironically, I planned my request even before my visit to the ER. The visit only made my request more urgent.

Please, if you read this blog, take a moment and say a quick prayer for me and my family. Pray for our strength and guidance as we travel this difficult road. The power of prayer is amazing!

Thank you and God Bless

Pictures - As Promised

Courtney and Brandon driving the ATV's at the event out in Quogue where Courtney was presented with a check for books for school.

Courtney, Brandon and I at this year's Memory Walk where "henley's heroes' raised $3,800.00.

Courtney, Brandon and I along with Denise and her husband Tom who ran the ATV event . They are good friends of one of my dear friends and during the summer they hold monthly events to give back to different people. They blessed us with a check for Courtney's books.

A picture of Courtney at Fordham University...her dream come true.

Poor Mikey

For the past week or so, we have been dealing with a pressure sore on Mike's right thigh. We were very vigilant as soon as we saw it, and at one point it got worse, before it got better. Of course, while trying to keep him off his right side, we had to rely more on his left side and back. It was only a matter of time before either one of those areas broke down. It is his back. He developed a sore at the very bottom of his back and we have aggressively started to "attack" it. It's a more difficult area simply by it's location, as it is prone to infection just from being soiled throughout the day. We are doing our best and pray our efforts are successful.
In the mean time, it appears that Mike developed the infection on his toe again, most likely the same infection that took us a good 6 months to completely get rid of the last time. The left big toe is red, swollen and open. The podiatrist will be coming by tomorrow to check it out and hopefully prescribe the same antibiotic ointment and possible antibiotic he took last time. Whenever an antibiotic is thrown into the picture I have to carefully weigh the pros and cons. Most antibiotics are very strong and hard on the system, so if Mike can become uncomfortable from stomach irritation or diarrhea, then it may not be worth administering it. I don't want a possible infection to spread - but if he can dehydrate by treating it, then what do I do?
We had a busy weekend. Courtney came home as usual, to work, but I barely saw her. On Saturday morning we met with the head of the Long Island Chapter of the Alzheimer's Association. She would very much like to start a "support group" of sorts for the children of people with Young Onset Alzheimer's and she asked Courtney and Brandon to be co-facilitators. (Brandon was supposed to go to this meeting also, but he had to put in service hours for the National Honor Society by helping out at his High School's Open House). Courtney is a bit concerned that teenagers won't want to attend, so we'll have to see where that goes. After we left that meeting we did our Taregt shopping and then Courtney went to work (Brandon came home then went to his friend's house). On Sunday my brother treated us all to breakfast, which was a treat for me since I didn't have to make our usual Sunday breakfast. Afterwards I went food shopping, while Courtney went to work. I came home and took advantage of the windy day and did Mike's and my sheets. There's nothing better than getting into bed at night with sheets fresh from the clothesline!! Courtney came home from work and I drove her back to school. I got in at 8, got Mike into bed and then finally......relaxed. Oh, I almost forgot, Brandon injured his arm and cannot straighten it. It seems like a pulled muscle, but we all know what great patients men make :)!

Pictures

I know I said I would have pictures up and I haven't forgotten, but I just haven't been able to do it. It's been a little over a year without a home computer, so the only way I can download and post pix is when Courtney comes home from school. This is on the weekends (when she works)and I'm normally running around crazy, so it never seems to get done. I want to share these pictures with you and I promise I will as soon as I can.
Mike is "status quo". It's one day at a time....some better than others.

Fever - No Fever

Last Saturday as I was getting Mike into bed and he felt a "little" warm, but nothing to be crazed about. Much to my surprise, he had a 103.3 fever. I also noticed that he had a pressure sore on his thigh, which was open a little - I did not like the way it looked. The hospice social worker came on Monday and my mom mentioned what happened on Saturday. She in turn called Mike's nurse and so she came Monday instead of Tuesday. When I questioned why he keeps getting these fevers, she just said, "sometimes it's just a part of the process and is not caused by an infection". WOW I wasn't expecting to hear that, but at the same time, reality kicked in. I've been logging Mike's bouts with fever and at first he would get them maybe once every few months, then it was once a month, now it seems like once a week.
Last night, he developed a fever again - 103.5. I had to give him two rounds of Tylenol before the fever broke and he got comfortable. The only difference between last night and Saturday was that last night, he appeared to have some chest congestion. He coughed up some "glop" and he fell back to sleep. Today he woke up with some "gurgle", he didn't have a fever and he was able to cough up some stuff. I just called home and his aide said he seems to be doing OK.
One day at a time.....

Little Kids, Little Problems...

...big kids, big problems. I've heard this phrase many times over the years, but never have I understood it more than I do now.

I guess it's not so much "problems", as it is dilemmas and hurdles. Courtney got into the school she has always wanted to go to, and while she is enjoying the classes and the challenges they bring, she's having a difficult time connecting with anyone. She has a few forces working against her: she's a transfer student and lives off campus, she's not at school 4 days a week (she commutes home to her job) and the biggest of all - she doesn't drink or go out partying. Understandably, college kids test their new found freedoms, and usually go wild. Courtney is not that type and she can't understand how most kids stay out all night and sleep in all day, sometimes cutting classes. While she didn't seem surprised at this situation at Hofstra, where anyone is admitted, she didn't expect the same from the more difficult Fordham. It's not for the lack of trying either, because she has already joined numerous clubs. What better way to meet people who are interested in the same things as you than by joining film and communication clubs. Despite all her efforts, she's finding that she's definitely the odd man out.

This is also the time of year I will begin looking at colleges with Brandon. The realization that he will not be home next September is beginning to sink in. Courtney tells me constantly that if Brandon goes away to school, she will commute because she knows I cannot get Mike into bed on my own. I tell her that it's not an option, but she refuses to listen. I don't say anything anymore, because who knows what tomorrow will bring, let alone next year. I have taken a few days off to take Brandon to visit some schools he's interested in: Seton Hall, Rutgers and Stonybrook. He likes Syracuse, but that's too far for me to go, so we did the virtual tour. He may also check out Scranton. All this needs to be done ASAP, since his college apps. are due into his college advisor by mid-October.

Courtney has been driving for 2 years and Brandon has finished his driving classes and can take his road test any day now. I can't begin to list all the times it would have saved me SO MUCH had we had another car. Over the summer there were so many times Courtney could have done things for me while I was working. She also got a job, is GREAT, but I had to run her back and forth. Now Brandon is looking for a job and he will need to get around. If we could somehow afford a car, then there's the insurance and gas. Kids have survived without cars for time and again, now mine will have to survive the same.

Where does time go? I remember being up with them at night when they were teething, now I find myself waiting up for them to get home. Little kids, little problems..... Life's little dilemmas...dealing with them by myself, sad of what Mike has missed.

TODAY IS WORLD ALZHEIMER'S DAY. LET'S NOT FORGET THOSE WHO CAN'T REMEMBER.

Feeling Down

I hope to have some pictures up this weekend from the Memory Walk and the kids ATV excursion. I haven't been feeling well lately, both physically and mentally. Too much is hitting at once, and again, I am in the overwhelmed stage. Each and every time I hit a valley like this, it takes every bit of strength I have to fight my way out. I am blessed that Mike has been in a "holding pattern" and that the kids are doing better. They each had sinus infections, which I think I may have - or it could be my allergies - I'm not sure. Just feel like s*&t. I honestly don't know how much one person can handle. I have never said "it can't get worse" because I know very well that things definitely can. Every morning I wake up and pray that the day will be better and bring some GOOD news. I'm still holding onto Courtney/Fordham to help me get through this - it's been the one good thing that's happened in a while. I will NEVER GIVE UP and will continue to HOPE.

Our Miracle

For all our blog followers who helped us through last
year's fiasco with Courtney and college, I am
THRILLED to share the news that Courtney
will be attending Fordham this year.
By some miracle, all the cards fell into place and
we moved her in yesterday. It has been a bumpy road since May, that came to an end last Friday when she made her final decision. I give Courtney ALOT of credit for investigating the transfer. Even though it was her DREAM school, she did not want to transfer if it meant: that her credits would not be transferable, that she would have to give up her newly obtained job at The Disney Store, and that she got housing. It took alot of work on her part, but as I've explained, "anything worth having is worth the hard work".
She was placed in an apartment off campus which she was not entirely thrilled about, but as she spends time there, I think she will like it. It has central air, full kitchen, LR & Dr and shares it with 4 other girls. It's located on Arthur Avenue in Little Italy, so I have a feeling she will be dealing with the "Sophomore 15". Fordham had a beautiful candlelight ceremony last night welcoming new students - she's "home" and I coulnd't be more happy for her.
I wear my FORDHAM MOM shirt proudly!

Success

I am VERY HAPPY to report that this years Lemonade Stand was a HUGE SUCCESS. We raised a little over $1,000.00. The day was beautiful and once again, our friends and neighbors stepped up to the plate to help support a worthy cause. Mike's brother and his 3 boys stopped by to help us and I believe they enjoyed themselves also. A friend of mine from High School (and a bridesmaid in our wedding) stopped by after hearing about our sale on FaceBook. That was a great surprise - and we both realized that, yes, we are getting old!

In this picture are (from left to right): Courtney, Me, MaryAnn Ragona (Head of Alzheimer's Association- Long Island Chapter), Brandon and MaryAnn's mom. They had some our of delicious Lemonade and monkey bread.

FAITH - GUILT

firm belief in something for which there is no proof......complete trust....something that is believed especially with strong conviction....without question.....

My faith is being tested more and more every day and once again I feel as though I am drowning with no life preserver in sight. With all the interviews on TV, newspapers and radio I have done, I have never really opened myself up completely. I often wonder what people would think if they REALLY knew how much I struggled - on so many levels -each day. Alzheimer's Disease is turning me into someone I do not want to be. I don't like being jealous, envious or angry, yet I find myself fighting those feelings every day. It's difficult to teach my children to be good people when with every corner we turn, there is yet another obstacle. It's a hard pill to swallow when you see others not always doing the right thing - getting rewarded. Sure, we can never know exactly what goes in other's lives, but by God, it's getting really difficult to see the forest for the trees. I sincerely thank God every day for all that I have and I KNOW things CAN be worse, but does that mean I can never feel like I'm fighting a losing battle?

..... feelings of culpability especially for imagined offenses or from a sense of inadequacy....remorseful awareness of having done something wrong...

This is what I feel after I question my faith. All I need to do is look around and I would be able to see many others who have more problems than my own. I struggle with this fact - because there are days (like today) when I don't feel things can get worse. I'm sensible enough to know that this is not true. Things can get plenty worse and I know it.....therefore I question my faith. I find myself in a vicious cycle.

FAITH is what keeps me going. I have to believe that what we do has a greater purpose. I have to believe that one day, things will get better, our struggles with subside and I will experience more good than bad.

When we were going through rough times in the past, Mike would always tell me that "things will be OK". When I asked him how he knew he would say - "I have connections". Each night I go to bed I ask Mike is he could call on those "connections". I miss his reassurances, his calming nature, his protection. Things always did turn out OK - I just have to keep my FAITH.

I Miss Sleep

For the last few weeks, I have been losing even more sleep than ever. Courtney's new job will sometimes keep her out until 12:30-1:00 and I either wait up for her or have to go pick her up. On nights when she's not working, it's not uncommon for Brandon to go out, so then again I am awake waiting for him. For them it's a non-issue since they are are summer vacation, but for me, there is no summer vacation. Last night I was so excited-----Courtney was home at 6 and Brandon would not be going out. Finally, we can enjoy the night together and I could get to bed early. I did, BUT.....Mike had other plans. At 2:30 he woke up with a fever of 102. Needless to say, I got no sleep AGAIN last night. I'm concerned about Mike and will be calling hospice again this morning. His regular nurse is on vacation for 2 weeks, so we'll see what happens.
I guess I'm just not meant to sleep.....

Lemonade Stand

Tomorrow Courtney, Brandon and their friends will hold their 4th Annual Lemonade Stand to benefit the Alzheimer's Association. They've been busy baking the fresh baked goods that will also be sold and making the appropriate signs to advertise. We are so happy that the weather looks like it will be PERFECT for the sale and our goal is to surpass the total from last year. As always, I will thank "the crew" by BBQ-ing for them afterwards. It should be a fun - and EXHAUSTING - day.

Mike is status quo, and that's a good thing!

Courtney got a job at The Disney Store in our local mall and they have been working her hard. It's great because she's getting to save much needed money for school, but she's not used to not having a social life. She went out with her friends last night for the first time in about a month and a half. She has been working the closing shift and not getting home until 12:30 a.m. - which means I'm not getting enough sleep because I wait up for her. I'm just SO HAPPY that she got this job, so I don't want to complain. We're blessed. Now if Brandon could only find something.....

On the Mend

I am happy to report that after 4 days of fever, and terrible chest congestion, Mike seems to be on the mend. He was started on Cipro last Thursday and he has FINALLY been able to get some "gunk" out. He still doesn't seem 100% to me, because I have a good feeling he might have had pneumonia or close to it. He sounded TERRIBLE.
Yesterday Mike and I celebrated 25 years together. Although it wasn't out wedding anniversary, but the anniversary of our first date. As expected, I was a bit emotional. When you're that young, you don't even know if you'll have another date with the person, let alone get married, have children and eventually have to deal with a disease like Alzheimer's.
When I woke him up, I told him what day it was and gave him a big kiss (as usual). I asked him for a smile and guess what....he gave me a BIG SMILE. He's been very stingy with those lately, only giving them to Courtney, but it made my day when he lovingly gave one to me. Was it a reflex or did he understand? I don't know, but I will ALWAYS believe that Mike is in there and he knows everything going on around him.

I'm tired of Alzheimer's

Mike has been sick with fever and chest congestion since Tuesday evening.
He started with the "gurgle" on Tuesday night and by the time we got him into bed, his fever was 102.3. He woke up Wednesday with no fever (it appeared to have "broken" in the middle of the night). He ate and drank his usual on Wednesday, but by bedtime, his "gurgle" came back as well as his fever. Overnight, his breathing was very loud and he sounded very congested. I didn't sleep much - as I was checking on him all night: I turned him to try to losen stuff up, gave him tylenol, cleaned him etc. I didn't go into work yesterday and called hospice. Instead of sending someone, they prescribed an antibiotic, which is fine - but I still think they should have had someone come by to check.
I was up again all last night. We put Mike in the hospital bed in the living room because we can raise his head better there (we have the wedges in the other room, but the hospital bed allows us more incline), and I "slept" on the couch. I am even more exhausted from not sleeping again last night and today I had to come into work (my boss is out playing golf).
Lying there last night I started thinking about all the other sleepless nights that I've had the past 9 years taking care of Mike and the various illnesses and maladies he's had to deal with. Whether it be at home or in the hospital, there have been quite a few times I watched the clock as minutes turned to hours, and hours into days.
I recently bought a bracelet (a portion of the proceeds go to Alzheimer research) that sums it all up.... I'M TIRED OF ALZHEIMER'S !!!!!

Mike & Kids

The picture with Mike and Brandon is at Shea Stadium and was taken when Brandon's Cub Scout Troop was invited to walk on the field with the "flag quilt" they made in memory of all those who died on 9/11 (I believe in 2002 - one year after diagnosis). The picture of Mike giving Courtney a ride on his bike was taken in 1992.

I wanted everyone to see pics of Mike before the disease took over.

Anniversary

Today is the fifth anniversary of my dad's death, but I feel the pain like it was yesterday. I miss him EVERY DAY. In fact I keep his outgoing answering machine message on my voice mail so when I'm having a really bad day, I can listen to his voice. He was my rock, my strength and my "go to" person. I don't feel like I have ever fully mourned his loss - I never had time to break down because I had to be there for Mike. I didn't want to be too upset around Mike (never did, never will) or the kids, so it left me with very little time to grieve. I am having a very difficult time this year because a very dear friend is losing her dad as we speak. He had been ill, but took a bad turn on Monday and hospice was called in. They are keeping vigil around him, but it's only a matter of time. I feel she is blessed that she will be with her dad when he passes and it hurts me more than anything to know that my dad was by himself. I worry - was he scared? Did he know what was happening? Did he feel pain? My faith tells me that whatever pain he felt, passed quickly as he met up with his brother and sister and parents on the other side. I still wish he had not been alone.
Even though my friend is in the process of losing her own dad, she found the right words to comfort me...
"I find a lot of consolation in the fact that we are with him around the clock, but I will tell you as I watch him resting that even with us there in the room he is disconnected from us, because he like I am sure your dad was is being called by God, and although you were not with your dad, he was not alone, god and the angels that came to take him were with him".
Death is a part of life, and like life, it hurts sometimes.
Dad, I miss you each and every day. God bless you. I love you.

Up & Down

I have been very concerned about Mike lately because of the HEAT. Even with a/c in the living room, you can still feel the heat and humidity. We have been focusing alot of keeping him hydrated. Yesterday he was OK, but last night, as we began to move him into bed, he started making moaning sounds. The mere sound of them get Courtney and Brandon upset. It brings them back to a place when Mike was REALLY sick (and was given Last Rites). Last night, when Courtney helped me with Mike, she burrowed her head in the pillow so she wouldn't hear him. I checked his temp. and he was OK, but I knew he was uncomfortable, so I gave him a Tylenol suppository. He kept burping, then coughing. I was concerned his burps would lead him to aspirate when he swallowed. At 11:00 last night he had a 101.2 temperature. I gave him Tylenol once again and at 6:30 this morning, his fever finally broke. When the hospice nurse came for her weekly visit, she said he had no fever and appeared OK. No one can give me an answer as to why he ocassionally gets these fevers. I assume it can be one of two things: the area of the brain that controls temperature is affected -OR - he does aspirate, but then coughs up whatever went down. As always, I worry about the day he will not be able to "cough up". He seems to be having more trouble swallowing also. He keeps things in his mouth longer and makes the "chewing" motion, as if he knows what he should do, but has a difficult time making it happen.
What's got me a little "uneasy" is a call I got from Mike's Aunt and Uncle in Mississipi. They called to tell me that they were going to Scandanavia for 2 weeks and wanted to give me a phone number where I can reach them "if we needed them for anything". They have been away alot, but they've never done that. I'm trying not to dwell on the uneasiness.
On a more positive note, I was able to FINALLY repay a portion of the generosity given to us. A dear friend was diagnosed with PLS (a "relative" of ALS) and she has started having difficulties getting around and speaking. She set up a system where people can volunteer to help them out - making dinner, gardening, cleaning - and Courtney and I made and brought dinner to her on Friday night. It was something so small, but I finally felt like I was giving back. Lord knows this woman and her family deserve SO MUCH... they have given to so many others and helped so many people throughout the years. I have alot of help to give before I will feel completely satisfied, but this was a start.

Belated Father's Day

Father's Day 2010.


These pictures say it all.

Thankful

Since Mike has not been able to negotiate the stairs, we have not been able to use our bedroom. Our bedroom, is the room my brother moved in to. Mike and sleep in the front room of our house that was once a porch, which had been converted to an extension of the house before we moved in. It's big enough only for our bed....I have no bedroom per se. I sleep between Mike and the wall and I have to slither in and out . I cannot get out on my side of the bed. My clothes hang in a canvas "wardrobe" that is strategically placed in our DR. My shoes gather at the bottom of our stairs. I don't have a nighstand, dresser or closet. My "stuff" is scattered throughout the house and it drives me CRAZY. I'm jealous when Courtney, Brandon and my brother have a room to retreat to when they want to be alone. It's difficult for me, because the room Mike and I sleep in, is off the living room and has very little privacy. I have no place of my own to go to. This bothers me alot sometimes, but at other times......

.....I'm thankful that I can lay next to Mike in OUR bed in OUR home. There are others that don't have a home, or a bed next to a wall that they have to slither away from. They don't have the luxury of heat in the winter or a/c in the summer. Whenever I find myself feeling bad for all that I don't have, I do my best to remind myself of how blessed I am, and I am so thankful for all that I DO have. I know I've written about this before, but this lesson bears repeating.

Dream Montage

I love dreams, always have. I even took a psychology of dreams class in college. I can only assume that I enjoy my dreams more now, because, let's face it, I don't get a chance to do much in "real life". I remember dreams very vividly, even those that I had years ago. I've always said that if I were an artist, I could make a fortune selling a book of their illustrations. I can usually always figure out what my dreams mean, even the most abstract. Last night, I needed no coaxing. My dreams seemed to come all in a row -all with the same subject matter.

#1 - Mike went out for a walk (in the neighborhood I grew up in) and he got lost. After not returning home for some time, I went out looking for him. As I turned the corner, I saw Mike, talking to a young person who seemed to be trying to help him find his way. I called Mike's name and he turned around - came running to me crying, and said, "I'm so glad to see you".
#2 - I had a good friend all throughout high school until Mike was diagnosed. She just "couldn't handle" it. In last night's dream I was at home with my "friend" along with a few of her other
friends (who I didn't know). They wanted to go out, but Mike was lying on the couch and he needed my help. Her other friends wanted to go somewhere, and were angry at me because I was not able to go. I was angry that they didn't understand WHY Mike needed my help - "how could they be so blind?" One in particular was VERY nasty, and my "friend" told her off. My "friend" wound up staying with me. At the end of the dream, I REALLY yelled at this woman. I told her that she was like so many other people who didn't understand JUST how hard this disease was. It felt so good for me to get it out AND have the support of my "friend".
#3 - I joined the Navy and they were having an induction ceremony. I needed to find the right uniform and the family had to register for events. My sister and her family with with me, but Mike and Brandon were delayed. They needed more time to get ready, so my BIL told us to go ahead and they would catch up. They never showed up and right before the ceremony, I got a call from Brandon. He sounded MUCH YOUNGER than he does now and he said, "dad's lost". I panicked because the complex where the ceremony was happening was very big, but I immediately started to go looking for him. Brandon was still on the phone and he said, "no mom, dad is gone". With that I woke up.

The theme is all the same, but I have never before had so many montages of Mike all in one night. Apparently it's clear what has been on my mind.

Substitute

Mike's aide is out today and I'm here at work. I NEVER do this, but I MUST be at work because of the craziness this month (first time homebuyer's have to close by 6/30 to receive their $8,000.00 credit). Courtney bravely said she would stay home with the sub to help out. It's 11:30 and I just called home. Mike has eaten hardly anything and only drank 1 1/2 cups of juice. With his regular aide he is normally fiished with breakfast, had 3 cups of juice and getting ready for his nap. This sub doesn't seem to know what she is doing, and Courtney took over feeding Mike to make sure he got SOMETHING into him.
And here lies one of my MAJOR issues with Home Health Agencies. They continue to send people that have no experience. This woman asked Courtney if she knew how the work the hoyer because she has never used one before. When I asked her if she had been trained, she said "yes, but only once and I never had to do it again" (she told us that she normally works in an assisted living facility where patients are - for the most part - independant). The problem is the agencies cannot get anyone good, because beside the bad pay, they offer no benefits. In fact, our aide is out today because she is attending an orientation for another agency so she can work at night. That agency DOES offer medical benefits along with personal and sick days, which is mostly unheard of in this profession. I am quite concerned that this second job will interfer with her care for Mike or that she will leave and work for them instead of us, but for now, there's nothing I can do.
This issue is something I addressed in Washington. In order for us to care for our loved ones at home, we need experienced and well trained home health aides. They will not get qualified workers unless the agencies offer decent salaries as well as benefits.
For today I will pray that Mike's lack of nutrition and fluids will not cause a major problem. I hate being in this situation. I need to be here at work in order to support my family, but I also need to be at home to care for Mike. God Bless Courtney and Brandon for all their help.

Walk On...

When you walk through a storm, keep your head up high, and don't be afraid of the dark.
At the end of the storm,
is a golden sky and the sweet silver song of the lark,
Walk on through the wind,
Walk on through the rain
Though your dreams be tossed and blown.
Walk on, walk on with hope in your heart and you'll never walk alone.....
You'll never walk alone................

Taping

Yesterday the kids and I went to our Telecare studio and filmed another portion for the Family Comes First series we were asked to take part in. The producer etc came to our house a few months ago to film, but yesterday we went to them. It was pretty much the same questions as we're always asked, and I will continue speaking about this horrific disease for as long as anyone will listen. I look forward to seeing the final show which they tell me should air around October/November. As always, I left there drained, for even though I've spoken about our lives before, it's always emotional bringing up the past.
Tonight my niece will be coming to NY to stay with us for an extended weekend. Courtney and Kristin will be going to a concert in the city tomorrow(which is a birthday present for my niece). This will be my niece's first foray to NY on her own, and for that I am proud of her. Hopefully it will give her the confidence she needs so she will realize she CAN do this on her own. I know Mike will enjoy her visit, as she is the one niece he remembers the most from our years of babysitting.
Mike is doing OK, thankfully nothing has changed.
Brandon is finishing up his junior year..YIKES....he'll be a senior in September.
Hopefully, this summer I will be able to take a day here and there to spend with the kids before they don't want to be seen with thier mom anymore.

Hard Work

This past week has once again proven to be very hectic. Courtney flew off to Florida with 4 of her friends to go to The Wizarding World of Harry Potter in Universal Studios. She has grown up with Harry Potter and has watched the progress of this park for years. Getting her ready and getting her there took alot of time. Sunday we had another substitute aide who really didn't do much. The past few weeks we have been lucky, but of course, the one weekend I REALLY needed the help the most, they sent someone who just finished the training program.
Mike has been "OK". He has his days, like all of us. Some days he's congested/gurgling, some days he's not. If he is, we need to stay on top of it with the nebulizer (breathing treatments) and extra chest PT to insure that he coughs up whatever is in his throat. If he doesn't, then it leads to a fever and even more vigilance in pounding his chest. We do everything we need to do in order to keep anything down there from turning to pneumonia. He also tends to be developing bed sores more easily than in the past. We also need to stay on top of this, by covering them with "Duoderm" which is s product like a second skin. It covers, cushions and protects the sore from opening up, which is something we REALLY don't want.

This is why I feel good about what I do. Knowing how vigilant we are in his care, when Mike's time comes, I KNOW it will be because it's "his time", and not for the lack of care. There will be a time when no matter what we do, it will not be good enough, but I will know in my heart and soul that I did all I could. I will have no regrets and I will never have to ponder the "what if's". Mike is an amazing man who inspires and teaches us everyday. When he gets too tired, we will know.

Family

On Saturday, Mike's brother Bob came to visit Mike. It has been approx. 6 years since he last saw Mike. I felt strongly about Mike "re-connecting" with his brother, so I reached out to him and asked Bob to come for a visit. Initially, Bob asked if he could come by on his own, without his children and wife so I was surpirsed when I found out he was bringing his oldest (11) and his youngest (5), but Courtney and Brandon were pleased to finally spend time with their cousins. The last time they saw the oldest, he was 3 years old.

The day went fairly well and I am positive that Mike knew Bob was with him. Bob had also brought along his friend who also knew Mike, which was quite a surprise for me. The entire visit was a little weird. Bob came and went like he had never been out of Mike's life, which was good I guess, but strange at the same time. He kept talking to Courtney about "the next time he comes" which would be nice, but we can only wait and see. We invited them to join us for our annual Lemonade Sale (for Alzheimer's) and Bob seemed receptive. I can only hope that he meant what he said and does not remain a stranger.

A Special Visit

Mike still seems to be "out of sorts", although I'm not quite sure what's wrong. His "gurgle" doesn't seem to be so bad, yet he does sometimes breath a little faster. The hospice nurse came by on Tuesday and she said that it could be from him being in pain from the 3 pressure sores he has (ankle, heel and shoulder). She recommended tylenol (for now) and oxygen if he needs it. I continue to watch and see what happens. In the mean time, I am ABSOLUTELY 100% convinced that Mike knew we were not there for 4 days. Since we have been home, he seems to be "better", according to his aide. She said she noticed that he was not the same when we were not there. FYI - to all those families and caregivers who believe that Alzheimer's patients aren't aware of what's going on around them.
Speaking of which, Mike will have a long awaited visitor on Saturday - his brother Bob. It's been 5 years since he has seen him. On Palm Sunday when I went to mass, the priest said a few things that REALLY hit home. I will not go into detail, but when I left church that day, I KNEW what I had to do. Because Bob had never tried to reach out to us by calling, sending birthday cards or stopping by, I believed in my heart that Bob was not a part of our lives because he couldn't handle seeing Mike this way. Bob expressed to me that he felt he was not welcome in our home. Apparently there have been some miscommunication over the years and I felt it was time to bring it to an end. I reached out to Bob and asked him to visit Mike. I KNOW Mike will be aware of Bob's presence and I KNOW he will be overjoyed. Bob is the only family Mike has left (beside his 2 Uncles and Aunt who all live out of State) and he was always very close with his brothers. He took alot from them growing up - since he was the baby of the family. I forewarned Bob that Mike will appear "expressionless", but I will know by reading his facial expressions, how he truly feels.
Mike deserves this visit and I know it will mean the world to him.

Our Trip to Penn State

Well, we made it through our trip to PA mostly unscathed. We got off to a good start on Thursday when we made it in good time to my sister's house, where we were cheerfully greeted by my sister and BIL (my nieces came home shortly thereafter). It was nice to visit them again. We caught up with the family the rest of the day and suffered through a dinner of "pizza", actually that's what they called it, but we all know that no one makes pizza as good as New Yorkers (LOL). I complained to the "management" Friday morning when I was awoken at 5:30 a.m. (the pitfalls of sleeping on the sofa bed in the living room, when my sister and family were getting an early start to our trip to Penn State). Friday was also Brandon's birthday, so he sleepily opened his presents before we left.

After packing up our 15 passenger van and decorating it with window paint - we set off on our road trip. The weekend proved tenuous especially when you are dealing with 11 people with different personalities, likes and dislikes. I often felt like I was walking on eggshells, so as not to cause any commotion, but overall, I had a really good time. Friday night before the graduation ceremony, we all went out to dinner at a cute little place called Dutch Pantry Family Restaurant. Dinner was homemade and delicious and my sister surprised Brandon with a birthday cake. Next was our hour ride to Penn State (yep, an hour. The closer hotels were triple the amount AND sold out a year in advance!). We attended the "reception" which was nice and it allowed my nephew the opportunity to meet up with his friends and professors and gave my sister good photo ops.

Graduation was on Friday night and it was VERY emotional. In the near capacity auditorium, there was one empty seat next to me the entire night. I just kept thinking that Mike was supposed to be there with me. It also seemed like yesterday when Mike and I honed our babysitting skills on my niece and nephew and now here he was graduating from college. Before I know it, it will be Courtney and Brandon up there.

The next day we got a tour of Penn State's campus and walked A LOT!!! Saturday evening, my sister and her family took us all out to dinner to celebrate the graduation, and ironically, it was a a restaurant that Mike and I and the kids had gone to years before. You see, the hotel we stayed at was in this little town of Clearfield. It was Clearfield where Mike and I took the kids for about 4 years in a row to visit one of Courtney's friends from the neighborhood who had moved to PA. It was in Clearfield when I first noticed a problem with Mike. Here we were, 9 years later, back in the place where our future took a horrible turn. It was eerie and more emotional than I had ever expected. It was here that Mike asked, "so where is Courtney, anyway?" and the following year (2001) was the last year we visited her friends.

Despite the craziness that travelling with 11 people (2 of which were senior citizens) brings, we laughed alot and had so much fun. More memories were made.

Coming home was another story. Our 3 hour car ride turned into almost 5 1/2 due to horrific traffic on the NJ Tpke. It was extremely frustrating knowing that I couldn't go anywhere, and I had Mike home waiting for us. I called 4 different friends to see if anyone could come to the house to sit while Mike was sleeping so that the aide could leave, but no one was available. I felt SO BAD that the aide was at our home since Thursday, and she was stuck sitting there just waiting for us to get out of the mess on the Tpke. She lives in Queens and she takes public transportation. She wound up only getting home at 1am on Monday morning (we finally reached home at 10pm).

I got home to find out that Mike had developed a fever on Sunday and he was congested. His aide didn't tell me because she did not want me to worry. I haven't slept in another 2 days since I've been home, because Mike has been up alot. He also developed 3 bed sores while we were away. NO ONE is going to tell me that he is NOT aware when we are around. He made it QUITE OBVIOUS that he knew we were back and he has since been doing better.

You can be sure that this will be my last trip for quite some time.

Busy..Busy..Busy

In two days we will be leaving for our much anticipated road trip to Pennsylvania for my nephew's college graduation. I have not been at my sister's home in 6 years. WOW! Even though hospice did not come through with respite for Mike, I made other arrangements - even though I will need to pay out of pocket which will put a financial strain on me. I just could not/did not want to - miss this trip. My nephew has attended Penn State for 4 years and I have not been able to go once to visit him or check out his "home away from home". It took SO MUCH planning on everyone's part, but it looks as though everything is in order. Well, not literally....
I am still moving Courtney out of her drom, which needs to be completed by Wednesday. The rest of the college will be moving out next weekend, but since we won't be here, she has to be out before we leave.
I haven't even thought about what I am packing...the weather doesn't help either. Will it be 90 degrees or 40 degrees???
I need to prepare all of Mike's meals and medicine before I leave.
I need to get Gizmo's food etc together before we drop him off at the "pet hotel" on Thursday morning.
I need to make sure Mike's aide is all set and comfortable with everything before I leave.
Then there's the actual packing up of the car. Beside our bags, I have to make room for the 2 wheelchairs I will be bringing so my mom and her husband can get around the hills of Penn State.
Thankfully, my sister has taken over the role of "tour director" and has continually updated us on plans and created a clear-cut itinerary for us.

After all the above is said and done, all I will be left to do is pray. First and foremost, I will pray for Mike and his aide, then for me and my entire family being on the road for so long and finally for Gizmo in his unknown enviroment. I am looking forward to laughing so much this weekend that I will need my inhaler constantly (thank you asthma!).

Penn State here we come...................

Catch Up

Things have been somewhat "quiet" lately. Actually, not really - I've been busy. Next week will be our MUCH ANTICIPATED and NEEDED trip to Pennsylvania for my nephew's graduation from Penn State University. It has the potential to be a memorable and humorous road trip. Now that Mike's planning is completed (his aide will be staying with him), now it's time to get our "stuff" together. Beside packing and eventually getting Gizmo to his "hotel", there's also the small matter of moving Courtney out of her dorm, which MUST be completed before we leave for PA. This is where it is beneficial that she goes to school so close because we will be running back and forth almost every night to bring things out a little at a time, with the weekend being saved for the balance of the lareger items (and hoprefully I will have Brandon's help). She has finals Mon-Wed of next week, but she will only have some clothes, her sheets/towels and toiletries with her - the rest of her room will be bare.
I already forewarned my sister that while I am away, I will be on "mental vacation". I will not be making any decisions - I will just need to be told when and where I have to be. This is a COMPLETE 360 from what I do at home where EVERY SINGLE DECISION is made by me. It will be so nice to not have any pressure and I can only pray that everything will be OK with Mike while we are away.
Beside the hospice nurse, we have a dear friend (who also happens to be a nurse) who lives close by, offer to come by the house each day to check on Mike and Elaine. This will also help me relax a little. Just knowing that someone can be there in minutes, "just in case", or even to help Elaine if needed is an added comfort.
BTW - thank you to all who have reached out to me to help lift me up out of my funk. I thank God each and every day for all of you.

Not Enough

I am having a VERY difficult time accepting the fact that many times - my best just isn't good enough. The past 9 years are beginning to take it's toll on me, and more and more, I find myself neglecting things that are quite important. My mind is full - too much for one person. I don't see a light at the end of the tunnel, and the burdens I carry are many. I wonder if God will get tired of hearing my prayers??? People ask how I have done it all these years and this is why. At my lowest of lows, I turn to prayer.

I LOVE my kids......

As I was looking through some recent blogs and their comments, I came across this one from Courtney. She had written this in response to a comment that she (as well as a few others) found a little condescending from an "Anonymous" blogger. It was so nice to see that someone has my back - and I'm glad it was my daughter. I write my blog knowing that I open myself up to everyone, so I should expect that some things I write will not be appreciated by all. I accept that, but I was proud of what Courtney wrote and wanted to share it. I hope she doesn't mind....

Dear Anonymous, whoever you may be-My mom is totally aware that other people have it worse than she does. In fact, she says this so much at home that it's kind of frustrating sometimes ;)My mom uses this blog as a way to vent. She needs it. She doesn't do much for herself because she's always focusing on my dad. And as for the financial issues with college, trust me, we are TOTALLY aware that this is the case. I DO have other friends in college too, and they're also experiencing financial difficulties. HOWEVER - the difference here is that this financial difficulty with college costs is NOW piled on top of everything else that my mom has to worry about, so it's just an extra little thing she doesn't need to deal with. Trust me- we all thank God every day for everything He's blessed us with. Just the fact that my dad is still healthy and with us at home is enough. But sometimes, like I said before, my mom just needs a place to vent, and she uses this blog as a place to do that. Without venting, she'd probably explode, and nobody wants that! :)Anywhos...I'm done :)
April 25, 2010 2:31 PM

Fever

On Saturday, Mike had another fever - 101.9.
Mike had been struggling with his "gurgles" on Saturday. After dinner, he aide left and he started getting more gurgly. I did everything I could to try to coax him to cough - his neck massager, chest P.T., the nebulizer, rubbing his back..but nothing. Then his breathing became labored and I knew what would be next. Sure enough, his face became flushed and his temperature was 101.9. I picked the kids up from the train station (they had gone into the city to see American Idiot so my brother stayed with Mike for a few minutes while I got them) and then we got Mike into bed. We did more chest P.T. and nebulizer, I used the neck massager again and I thought after we rolled him over as I got him changed, it would help losen things up. Instead, Mike seemed to begin to have more problems breathing. I put the oxygen on him and tried to calm him. Courtney was a little upset - she's been at school since September and has had less time with Mike than she has had in the past, so she was not used to his potential issues. I gave him a Tylenol suppository and by 10pm the fever broke.
When he woke up yesterday, he still had the gurgle. My biggest fear is the day he won't be able to cough up the mucus (the mucus is built up because of Mike's continuing problem with swallowing. At some point, he will not be able to swallow at all, and therefore, he will stop eating. This is what Alzheimer's does. The brain stops working and therefore, cannot tell the body what to do). We had yet another aide in on Sunday, and she too was very good. We tried once again to get Mike to cough up and FINALLY by late morning he did. He coughed and sneezed for some time. When we got him into bed, he still had some gurgle and he coughed that up as he began his nap. He slept soundly, thankfully.
Mike's friend Tom, came to visit while he was sleeping. He's our angel in case anyone doesn't know. He's Mike's ONLY friend that ever visits.
Courtney and I were in the dining room while Mike was having dinner. I heard him cough, but didn't think anything of it. A few minutes later, the aide was in the kitchen washing Mike's dish and she said, "Boy, you should have seen the mucus Mike just coughed up!". This was the last of the menace that was creating the issues and fever for Mike and he FINALLY got it out.
Last night he slept soundly, without fever, but I was up all night checking on him. I'm glad this wasn't the day I dreaded.

A Saint I Ain't

In my day to day activities, I am constantly going, and quite often don't get a moment to reflect. I am glad that I'm always running because when I DO get a moment to stop, I usually always end up being sad and getting emotional. I've been reminded alot of how "blessed" I am, and in my heart of hearts and deepest reaches of my soul, I know I am. I am healthy, my children are healthy, I have a home and a job. These things I NEVER take for granted and I thank God every day for blessing me and my family. But I am only human and a "saint I ain't".


Each morning I wake up and look at Mike lying next to me, completely unaware. I believe there are times when he knows who is with him and he recognizes voices, but for the most part, he is not my husband in the very essence of the word. I wake up and start my day by crushing his medicine and pureeing his food. How many other wives have to start their day doing this for their husband? I then mix his drinks for the day with "Thick-It" to help prevent him from aspirating. How many other spouses need to worry about this during the day? When I get home from work, I shave Mike. Is that also something that is common for wives to do? After we eat dinner, we get Mike into bed and I change his diaper and clothes and wash him before bed. Yes, I am blessed, but how many other spouses can say this is a part of their daily routine? I love Mike with all my heart and soul and I take care of him because I WANT to. I would like people to think about their your own blessings before they complain about little annoyances. Look at the big picture. I may ocassionally be been surrounded by good friends and a wonderful family, but that does make make my loneliness easier to deal with. It does not make me feel better at night when I'm lying next to my terminally ill husband. We have been living in limbo for NINE YEARS - how many others have done that?


At the heart of things, I am an upbeat and positive person, but there ARE days when I truly feel like not getting out of bed, but even THAT is not an option. Sleep in, I can't remember when. Alzheimer's Disease is despicable, Early Onset Alzheimer's Disease is WORSE. What were you doing when you were 36 YEARS OLD !? Were you getting lost while driving? Were you forgetting where your children were? Did you get fired from your job and get scared s*#t about why you couldn't remember things? Were you telling your spouse that it would be OK to get married again once you passed away? Were you depressed because you would NEVER see your children graduate from High School, get married or reach other milestones in their lives? Are you the spouse of someone going through this - having to watch them wither away to nothing? There are many debilitating diseases, but not very many like this. I have not heard Mike's voice in almost 6 years. Take a moment, think about that....

I don't have as much as others, yet I am better off than many. I am human and I hurt. I struggle each and every day to look at the bright side of life. I constantly pray for a cure for Alzheimer's Disease, please do the same.

ReVisiting Old Thoughts

Some 20 years ago, before Mike was diagnosed, we tried to visit Mike's grandmother as much as possible. She lived locally and she lived alone. We tried to keep Courtney and Brandon close to their Great-Grandmother, but there were times that Mike and I dreaded the visits.
You see, when her daughter Barbara (Mike's mom) got sick and eventually passed away, her world ended. As a young mother myself at the time, my heart broke for her. No parent should bury their child. After her daughter's death, days turned into weeks, weeks turned to months and months turned into years, yet she remained as emotional as she was the day she passed away. There was not one time that we visited Mike's grandmother, when she did not break down and cry. On one particular visit, I remember saying to Mike "Instead of her focusing on what she DOESN'T have, she should focus on what she DOES have. If I should be blessed to live to her age, I hope I will see things differently".

She lost her only daughter to a cruel disease - yet she still had two sons who loved her very much and remained in her life. One lived out of state and called her every week. He and his wife would visit a few times a year. Her other son lived locally and he called her every day. She also had Mike and his two brothers, along with their respective wives and children. I saw an older woman blessed by being surrounded my family and instead of being thankful for the family she did have, she continually mourned the person she lost.

Lately, I've been finding myself repeating my own words of wisdom...I need to be thankful for what I have, instead of dwelling on all I lost.

I've been feeling sadder than usual lately, for me, Mike and the kids and all that we have missed out on as a family because of this disease. The other day at work, an attorney left work early to take his young son to the Yankee opening game. When they walked out of the office, I teared up. The thought that Mike and Brandon will never share another ball game together hit me hard.

When Courtney gets upset because she cannot go to the college of her choice due to Mike's illness and the financial impact it's had on us - I feel like I've let her down as a parent.

When I hear co-workers talk about holidays, vacations etc. I think of all that we "could have" done.

I need to remind myself constantly:
- I should be thankful for the fact that at least Mike and Brandon did attend one Yankee game when he was well (other children haven't been so lucky).
- I should be thankful that Courtney earned scholarships that allow her to attend college (which other children don't have).
- I should be thankful for all the holidays and vacations we DID have when Mike was well (allbeit the kids were often too young to remember them). We were blessed.

What I need to do is revisit my own thoughts every now and again. Sometimes the best advise you can take is your own. Instead of mourning the life we lost, I should appreciate the life that we now have.

Resolution

After two months of countless phone calls and with no resolution in sight from hospice, I decided to ask Mike's aide, once again, if she could stay with Mike when we go to PA. THANKFULLY she said "yes". Despite the fact that under Medicare, Mike is entitled to 5 days of respite, I will be paying someone out of pocket to stay with Mike.

After we settled that, we checked out a facility for Gizmo to stay while we are away. It's called "Best in Show" and is a unique pet resort. We took care of all the particulars in less than an hour. I'm convinced that Gizmo will not want to come home after we return.

I can now rest easy that all plans are in order and can only pray that everything will remain status quo. I have never ignored the fact that Mike's health is still very fragile and I will be nervous while we are away. I will feel good knowing he will be staying at home and you can bet my cell phone will be firmly planted on my body.

Respite Saga Continues.....

Four weeks after the push to find respite began, I am still no where near a resolution. Even with the support and connections of the President and CEO of the Long Island Chapter of the Alzheimer's Association......nothing.
I'm not sure anyone of importance "gets" the fact that I am VERY nervous about leaving Mike in a facility. This is not something that would be my first choice. Added to the stress of dealing with an ill spouse, comes the unfathomable realization that RESPITE DOES NOT EXIST.
My last ditch effort is a call that I already made. My good friend MaryAnn (Pres. of Alz. Association) directed me to her last option - a woman who runs another hospice. She confirmed that Mike is in fact entitled to 5 days of respite (DUH !!), and that while they cannot guarantee which facility he will be placed, they have enough facilities that they should be able to accommodate us. If they have a facility with our dates available, we may have to switch hospices.
Bottom line is that it appears the hospice we are enrolled only has one facility they use for respite. I wish they would have told us this sooner.

Here's hoping and praying that this last option works.

Warning re: Hospice

Be forewarned. If you are ever thinking of placing a loved one on hospice, bear in mind that you will not be able to utilize the respite service they claim you are entitled to.

Yes, that's right. For 2 weeks straight I have been working religiously on this issue with the Chairperson of the Alzheimer's Association (Long Island Chapter) and have gotten no where. I had originally looked into the idea of respite at the beginning of the year, but it took a backseat as we prepared for our short trip to DC. Since we've been back, I have been working on it and there is STILL no answer (our trip is 3 1/2 weeks away). Now my concern is that because hospice delayed their response, there are no other beds available in other facilities that Mike may have been able to go to under his Medicaid coverage. In order to do that, we would have had to drop him from hospice for that short period.

It is totally unimaginable to me that the system is this inept. Like I said, bottom line is if you place a loved one on hospice, you will NEVER be able to take a day or two to yourself.

Harry Chapin

Saturday night, Courtney came with me to see The Chapin Family - Celebration in Song. The kids had gotten me tickets for my birthday and I was excited about getting a night out. Courtney came with me, even though I knew she didn't want to. I'm not sure Mike would have even gone with me had he been well. We didn't really share the same taste in music. His favorite was Led Zeppelin, mine was John Denver. My taste in music was vast and throughout my youth I had seen: Chicago, Queen, Crosby, Stills & Nash, Charlie Daniels Band, The Kinks, Billy Joel, Elton John, Kenny Rogers, Genesis, Foreigner..and many more. One of the more "laid back" concerts I had frequently attended was Harry Chapin. As a fellow Long Islander, he often played at Huntington High School, with all profits going to PAF Playhouse. After sitting up front on the floor in front of the stage, at intermission we would go out into the lobby and meet Chapin and his guests. They would sign posters and take pictures. Last night, his family performed and it was the same laid back feeling.
Harry's daughter sang with her group, his two brothers sang with their children and Harry's two original bandmates were even there. His daughter Jaime, sang the song I loved as a teenager - Tangled Up Puppet. In fact, I danced with my dad to that at our wedding. After Mike and I had Courtney, I would often sing that song and think of her relationship with Mike. I was doubly emotional as I sat and listened to her sing. Harry's brother Tom sounds just like him and it was eerie listening to him. Harry Chapin died way too soon at such a yong age (39). He was an amazing entertainer and an unbelievable advocate. He founded Long Island Cares and World Hunger Year - both are organizations that supply food to the hungry. He was a crusader before it became popular. When he was killed in a car accident, I had read that his family had little money. Apparently, most of the money he made went to charities. He was talented and compassionate.
As I sat there Saturday night watching his daughter and nieces and nephew perform, I felt VERY old. Granted I was only about 15/16 when I began going to his concerts regularly, but the fact that now I was listening to HIS children and nieces/nephews sing his songs, made me stop and pause. Courtney was sitting next to me listening to the new generation of Chapins, at about the same age that I was a fan. Harry Chapin would freqently end his concerts with an appropriate song titled, "Circle". The Chapin family, fittingly, ended the concert on Saturday night to a standing crowd, all singing along. With Courtney beside me, I really did see that life is a circle....

All my life's a circle, sunrise and sundown, the moon rolls through the nightime till the day break comes around. All my life's a circle and I can't tell you why, the seasons spinning 'round again, the years keep rollin by.
It seems like I've been here before, but I can't tell you when. I've got this funny feeling that we'll all be together again. There's no straight lines make up my life and all the roads have bends. There's no clear cut beginning and so far no dead ends.
All my life's a circle.....