Flashbacks

Mike has been doing OK. He DID have a few "off" days last week, but he rebounded. There are days when he doesn't want to eat breakfast, but he will finish off his dinner in no time and vice versa. While I am thrilled that he will at least eat one of the meals, I am realistic in the fact that he is slowing down. I remember the day when Mike could eat THREE big meals a day. Now he's down to 2, sometimes 1. Last week, when I had a few minutes alone with Mike, I promised him that I would NEVER make him eat what he couldn't. I told him that he could eat when he wanted, what he wanted. I will NEVER force him to eat, especially if he can't and I wanted him to know that.

We saw Father Ralph on our way into mass last night and it was so sweet that he remembered that he would be coming back to talk with us (our last meeting was short and rushed). He told us that he prayed for us everyday. It is comforting to know. He told us that he would be away for 2 weeks (he and his fellow priests that were ordained 25 years ago are taking a trip to Italy. Kudos for them and God Bless), but he would be available to meet us when he gets back. We are well aware of his busy schedule and we feel blessed and humbled that he will make the time for us.

Courtney and I watched "College Road Trip" on cable this weekend. I thought it was a funny movie and for the most part it was, UNTIL THE END. Needess to say, the tears wouldn't stop. As their daughter was waving to the parents, as she was opening the door to her dorm, the father flashed back to the time was she was a child, waving at the camera. The flashbacks continued as she walked through the door of her dorm for good.
In my heart, I KNOW when this happens with us, things will change FOREVER. Courtney will no longer be that child, she will be living on her own, making her own decisions. And just like in the movie, I will ask, where did time go?

Part of me will always question my decision in keeping Mike at home and how much, if any, impact this had on Courtney and Brandon. I pray that they didn't miss too much of their childhood, as I always tried to make time for them to do "normal" things when we could. I am comfortable in saying that I feel this experience with Mike has made them stronger, more compassionate and humbling individuals and in the grand scheme of things, and what's important in life - they are EXTREMELY BLESSED.

The Knot in My Stomach

This is how I feel whenever I call home to see how Mike is doing and I get told, "he's not eating" or "he's drinking very little today".

Experience tells me that we all have bad days, inlcuding Mike. There have been many of those phone calls, but inevitably, he's always OK. I guess I fear the day that his eating and drinking will stop, and he will not resume his "normal" schedule. I can't express enough how my heart drops when I hear those words.

I have been giving Mike his evening medicine (in yogurt) when I get home, because Mary has to leave early to go to night school. Each night it takes me about an hour to give him about 3 tablespoons of yogurt and there are times that he seems to be struggling. I don't understand, because he appears to take the food and drink better for Mary. I guess I am worried because I see firsthand, the difficulties at night, and I'm growing concerned about his abilities to eat.

Smelling The Roses

Depsite all the ugliness of this disease, it DOES allow the kids and I to take some time "to smell the roses".

Quite often at night, I will sit with Courtney and Brandon on the couch and we will just "talk". We give each other back rubs, foot rubs - whatever may be aching at the time. Whether it be Courtney or Brandon, whoever's turn it is to help with Mike when we get him into bed, the kids and I use that time to talk privately about "whatever". They like it this way, because they feel that Mike is included in the conversation. He "listens" and that makes the kids feel that he's still an integral part of their lives. Part of Mike's bedtime routine, is massaging his fingers and hands so that they don't tighten up. Courtney or Brandon put cream on his hands and massages them. Mike is so comfortable by the end of the process, he's already sleeping. How many other families can say that their children massage them every night before bed??

In the morning, when I'm waiting for Mary to come and get Mike ready, I sit on the edge of the bed and massage his legs and feet. Everything I've ever read regarding Alzheimer's, says that even though patients cannot communicate with words, they can often "connect" with their loved ones through touch. We are CONSTANTLY holding Mike, rubbing him and letting him know that we are there.

In this crazy life we all live, I feel that these prescious moments are unique. We are blessed to be able to smell those roses. We have been given this time, not only with Mike, but with each other, so that we can truly appreciate all that matters.

World Alzheimer's Day

Today is Alzheimer's Awareness Day. People all over the world wore purple today in an effort to bring awareness of this terrible disease. We did our part by wearing the T-shirt we received from the Memory Walk last week. (pictured at right). We wore it loudly and proudly.

Everything went well yesterday with Courtney and Brandon. I breathed alot easier when Courtney walked in the door from her night out, but still had to wait up for Brandon who got in at 12:15 a.m.

Friday night went well with our visit from our Pastor, Father Ralph. He was running late between appointments, but he still took the time to spend about 1/2 hour with us. The kids were very comfortable with him and found much enjoyment in his stories. We promised to have him back one night, when the kids and I could spend some time talking with him (Courtney plans on making her famous Monkey Bread for him). The night ended with a beautiful prayer with Mike.

Home Alone

Today Courtney had a party to go to, and I was supposed to be meeting with the Newspaper people. I was trying to figure out how I could get her there, and then it hit me...... She has her driver's license - she could drive herself. As much as it scared me, I let her drive herself to her party (which coincidentally happened to be a surprise party for her, given by her friends). I realized that it would happen one day, I just can't believe it's happening already. I watched her drive away and realized that nothing will ever be the same. Her pulling out of the driveway signified so much more. Now I will be sitting on pins and needles waiting for her to come home. The first of MANY more nights to come.

Bandon had been bike riding with his friend when he called to ask if he could go to the movies tonight. Brandon and his friend will be going to a 9:30 movie. Granted, his friend's mom and younger brother will also be going, but he will be out also. My kids have a better social life than I do.

I will be home alone, waiting up for my children. It seems like right before my eyes, in the blink of an eye, they are adults. Where did time go??? I wonder what Mike would be saying and doing if he were well. I KNOW he would be so nervous for his "little girl" driving, and so proud of his "little boy" for being the man he has become.

I need Calgon

Yesterday was "OK". We've noticed that Mike eats better in the morning than he does later in the day for dinner. Last night, he didn't eat dinner. He started coughing and Mary stopped - just like I asked her to. He DID drink all day, but he was also dry most of the day. For that reason, I will be calling hospice to see if they can put him on an I.V. for a couple of days to help replenish the fluid Mike lost on Monday. Because of the fever, he didn't drink as much as he usually does PLUS he must have sweated out at least a glass of water when the fever broke. It doesn't take much to throw Mike's system off. Hopefully they will OK the IV (they did tell me that they DO allow it sometimes). I will be calling his nice nurse - Christa - directly, so I don't have to get upset leaving messages.

One of the most difficult things to deal with during this time, is also having to deal with life's everyday issues. Tuesday night, after the day that I had on Monday, I had to go to Brandon's Meet The Teacher Night. I was exhausted and looked like a mess. Somewhere along the way, I have to get an oil change (the oil light in my car has been on for a week), food shopping must be done and then there's Courtney and Brandon - they need my attention and love just as much, if not more, than anyone else. When I am preoccupied with Mike's problems, it's so difficult to focus on all the little things that need to get done. Apparently I had a doctor's appointment today that I forgot about and have to re-schedule. And of course, I need to go to work everyday. Tonight is Courtney's Meet The Teacher Night.

Anyone remember that commercial..........Calgon, take me away!!!!!!!!!!

Update - I didn't call the nurse (YET) regarding the IV because Mike has been "going" today. If he continues, I will hold off. If for some reason, he doesn't put out what he should, I will call the nurse. I just don't want him to get dehydrated.

God's Gift

Mike's "regular" hospice nurse came yesterday and gave him a thorough exam. Apparently, he DOES have congestion in his right lung (they feel he aspirated). The nurse that came on Monday night did nothing to check him out because I don't think she personally wanted to treat him. Mike started antibiotics this morning, and we hope that will help clear up the problem. His fever never came back after it broke early Monday morning (around 1am) - which is a good thing. He ate and drank yesterday, allbeit, slowly and less than usual.

I've said it before and I will keep saying it, this disease is the most hideous, unforgiving, ugly diseases out there. Just as you prepare yourself for the worst, things change and then remain "constant" for a while. This has happened to us 3 times before and I'm sure it will happen many times more, before this disease takes Mike. The emotional and physical stress this puts on ALL people; patient, family and friends, is ENORMOUS.

We've never been a family to say "why me", but being human as we are, we do all begin to question things. After our low point the other night, I got an e-mail from our Pastor. Apparently he had seen a re-run of our story on LI News (Telecare) and just wanted to let us know that he was there for us if we needed anything. Well, being a strong believer in "things happen for a reason", I e-mailed him back and asked if he could come by to talk to me and the kids, since things are getting more stressful. Strange as it may seem, I hope that his e-mail was a gift from God saying, "Here he is, let him help you". Father Ralph will be coming by on Friday for a visit. This will be the second time that Father Ralph "showed up" out of the blue. When Mike was in the hospital a few months ago, Father Ralph was waiting for an elevator just as the kids and I were going to the coffee shop. He came into Mike's hospital room and said a prayer. In my heart, I truly feel that God sent him to us because we needed him.

Every day is a new day and when it's over, I take a long hard look at Mike and thank God for the gift of letting us have Mike for another day.

Hospice Nightmare

I called Hospice yesterday morning at 9:40. I had to leave a message. I called again at 10:20 and had to leave a message. About 1/2 hour later, a nurse called back and went through things with me, as far as what was happening with Mike and what I should be doing. I asked if she could send someone to check him out and she said that they didn't have any available nurses. She said she would call back "in a little while" to see how Mike was doing. Our aide gave Mike fluids after I had given him Tylenol- he had about 4 1/2 cups. Then he went into bed for his nap. About 1:20 after not hearing back from Hospice, I put another call in and left a message AGAIN. I asked that they please find a nurse to come out and evaluate Mike, his fever was back. I explained on my message that I was told I would have access to 24/7 care and I could not understand why they couldn't get someone to come and check Mike. About 2:00 I got a call back and they said they would send a nurse "sometime around 5:00". I had gone into work for a couple of hours and at 3:00 I got a call saying the Mike had labored breathing and that his nails were blue. I left work immediately and called hospice on the way. The nurse told me to increase his oxygen and give him more Tylenol. I asked if they could send someone sooner than 5 and she said she would "try". We had increased his oxygen and within a few minutes, Mike's nails were back to normal. I was home at 3:20. By 5:30 after not hearing from Hospice, I called to make sure someone was coming. The answering service took the message and about 10 mins. later I got a call back from the night supervisor. She said the "shift had just changed" and that someone would be there "shortly". About 10 minutes later I got a call from the nurse who said she was 40 minutes away.

The Hospice nurse got here about 6:45 p.m. I had already given Mike his nighttime medicine which makes him sleepy to begin with, PLUS he normally goes to bed around 7:00...He was out of it. Well this nurse came in, saw how "out of it" he was, noticed that he was drooling and took me aside and informed me that Mike was most likely "beginning the dying process". WHAT!!!!!! She didn't ask any background, she hardly checked his lungs (even after I told him he had a cough) and didn't even look at his infected toe. I guess she only deals with one thing, so that's what it was. Mike has drooled for years and he was tired because it was his bedtime and he just had his medication. I had to ask HER if we could take a urine sample to see if he had a UTI - she didn't suggest it. All of the reasons why the kids did not want me to put Mike on Hopsice, happened last night. A nurse who's never seen Mike, did a 10 minute evaluation and basically said, "this is it". I explained to her that we were told "it was the beginning of the end" in 2005 by his doctor and he was given Last Rites 1 1/2 years ago, but he is still here. She looked like we stumped her and she said, "I hope I'm wrong then". She said the drooling is s sign of his inability to swallow, but when I told her that he had drank 4 1/2 cups yesterday morning WITH A FEVER, she said, "that can sometimes happen, just like that". Well it doesn't happen "just like that" with Alzheimer's, when there's a sudden change, along with a fever, there's obviously something else wrong.

Right now it's 9:44 and I left 2 messages for Mike's regular nurse and the supervisor regarding the specimen pick up, and another check up today - I'm waiting to hear back.

I have no idea what is going on with Mike, but until I exhaust EVERY option and check him for everything, I will not give up on him. Had we listened to the professionals, Mike would not have been with us all these years.

Hangin' On

Today, I feel like I'm hanging on to a life preserver that is ready to sink itself.

Yesterday, I noticed that Mike's toe (the same one with the recurring infection) went from black to green. The whole side of his big toe is the color of grass. I didn't want to panic because the podiatrist had come on Saturday and I know she did something to the toe. I decided to wait until today. Well, Mike woke up with his toe still green and a 101.2 fever.

Now I'm not sure if one has to do with the other, because he also seems to have a cough. Needless to say, I am quite concerned and upset. What was even more upsetting was that it took 2 calls and 1 hour for me to get a call back from Hospice. After the nurse on the phone went through everything with me, and assured me that I was doing "everything right", she said that they didn't have any nurses available to come and check Mike, but that she would call back shortly to check on him. That call was 10:30 and as of now (12:23) we have not gotten a call back.

I'm disappointed because the whole purpose of signing Mike on to Hospice was to know that someone would be there for us and come and evaluate him if necessary. I'm sure if I had said it was an emergency, things would be different, but when I was told that we would have access to 24/7 care, I wasn't told that it was limited to emergency situations. Of course, if I don't hear back from them, I WILL call them to see if someone could come and check his lungs BEFORE it turns into something more serious. As for his toe, the podiatrist is coming later today to look at it and possibly change medications. The Hospice nurse indicated that that would be the best way to handle his toe since the podiatrist has been following it the whole time.

I am once again, SPENT. The only good things I seem to be able to hang on to right now is the fact that we have a home to live in and that me and my children are in good health. Everything else around me, at this moment, seems to be falling apart.

Update: I called Hospice back and they have agreed to send someone to check on Mike sometime after 5pm today. The podiatrist is also coming around that time. Mike's fever went down after the Tylenol and I hope it stays down. I worry because with Mike, a fever is usually always a sign of something bigger. As I mentioned, I just really want to keep Mike out of the hospital and if something can be caught before it gets worse, than that's my goal. If need be, I think they can also order blood tests.

Memory Walk '08

I am SO HAPPY to say that, as a team, we raised about $3,700.00. I will not have a grand total until all the checks have been deposited at the Alzheimer's Association, but just from what I handed in yesterday, this is the figure I have.

I was SO BLESSED this year to have so many friends support us. I had a group from work come, Courtney had even more friends than last year and of course, we had our good friends from Westbury. Without all of their hard work and support, we could never had surpassed our goal.

I was also so pleased to see that this year, even more people attended overall (they estimated about 1,600, a far cry from the 100 or so back in 2001 when Mike and I walked together), AND, the Walk was featured on our local Long Island news station. In the four years that I have done this walk, this was the first year that I can honestly say that it got some of the attention it deserved. We're not there yet, but we are so very close.

This year, the Alzheimer's Association also handed out medals to all their "Team Leaders" for their hard work in getting their teams together and raising so much money. I felt honored hearing my name called and wearing the medal around my neck. I pray that one day I will not have to wear that medal, or walk the walk, because Alzheimer's will be a disease of the past.

Thank you again to everyone who walked with us, donated to our team and helped make this year a HUGE success.

We were "Flocked"

This is the sight we woke up to this morning.

Our church has as a fundraiser, a group of people that place pink flamingos on other's lawns at the request of their friends. Our good friends Mary and Chris Carroll had us "flocked". Needless to say, it put a HUGE smile on our faces.

I had gotten up in the middle of the night to use the bathroom (as a result of my old age) when I looked outside. This is normal for me as I like to make sure that everything is as it should be. What wasn't as it should be last night, were the pink flamingos on our front lawn. I thought I was dreaming, but then I remembered the fundraiser at St. Brigid's. Without even thinking for a second, I KNEW it has to be Chris and Mary - they're crazy like that. What sealed the deal was the paper left in our door indicating that we were the "victims" and they were the "suspects".

Job well done. Thank you.

MRSA

Mike seems to be starting the same thing he did before he was hospitalized in May. He's burping more which sometimes leads to him coughing. He also tends to "tighten up" his body, almost like he's in pain. I'm concerned that Mary is giving him dinner too fast. You see, she ALSO started school (at night) and she has to leave every day at 5pm. Since Mike doesn't eat well for me, she tries to get him to finish dinner before she leaves, leaving me to give him his yogurt with medicine each night. I admit, it sometimes takes me about an hour just to give him 1/4 cup of yogurt, but I would rather take my time than rush him and have him choke. If she starts rushing Mike, than he will be back where he was. I've told her a few times already to take her time and I just hope she does.

Mike also has this infection on his toe that will NOT go away. He's had it on and off now for about a year. This podiatrist finally biopsied it and she said it was MRSA (drug resistant staph). The antibiotic he had been on for some time, was not doing anything for it, since the infection was resistant to the antiobiotic. She changed the medicine, but it it still hasn't improved as much as she has liked. She spoke with Mike's primary doctor and he prescribed a strong antibiotic, used to treat the resistant strains of infections, but after looking it up on line, I noticed that it cautions use for those with seizure disorder. I have not had it filled yet. Tomorrow, I will speak to the hospice nurse to see what she thinks and maybe even call Mike's neuroligist to see what he thinks.

Ironically, during Mike's last hospitalization, they swabbed his nose for MRSA, which they told me is standard for all patients admitted to the hospital. It came back positive and he was considered in "isolation". All workers entering his room had to wear gowns, masks and of course gloves. At the time we were concerned about it spreading, especially since Mike had a wicked fungal infection in his armpits with some open areas. The Resident checked with the "infectious disease department" and they said, not to worry. Well, now Mike has it on his toe, and for how long he has had it we don't know.

Just one more thing to worry about.

Successful Sale

I am SO happy to report that our Lemonade Sale raised $508.92 for the Alzheimer Association's

Memory Walk.

It was ALOT of hard work by ALOT of people, but from 11-4 on Sunday (9/7/08) we stood on our corner and yelled, "Lemonade for Alzheimer's". Most people just gave money and didn't take any of the drinks or snacks we were selling. In fact, we had to BEG people to at least take something for their generosity. Raising the money was great, but it was also just as much fun getting to know our neighbors. Many we knew, but others I had not known. It's a blessing to know that there are so many people that care - not just for us, but for the millions of other families coping with this hideous disease. There are SO MANY good people out there and today proved it. Our first cutomer was a young boy around 6-7. We had teenagers riding in their cars with friends, we had people my age and older people. It was amazing to see the age span of people that would literally go out of their way. In fact, about an hour after we had packed up, and I was BBQ-ing in the backyard for Courtney's friends, my mom said the doorbell rang. It was a young girl wh said that she heard we were collecting money for Alzheimer's....she left $10.00. She could have just kept walking when she saw that our stand was no longer out, but instead she took the next step and rang our bell to give to this cause.

(The picture is in front of our house with all our supporters. It shows the chart on the left that indicates we surpassed our goal of $300.00. Not pictured is my brother who was running an erand for me and was an intergral part of the sale this year).

Courtney's 17th Birthday

Today is a better day...so far.

Sorry for my rambling yesterday, it's just that sometimes things get to me and I need a place to vent.

Today Courtney is 17 years old. That old cliche - "where does time go?" is so true. It seems like yesterday when she was born. I reminisced about Courtney's birth with Mike last night - I just never know what he hears. She was supposed to have a friend sleep over tonight, but her friend canceled because she had to babysit - which is OK anyway because the Lemonade Sale we are having for the walk is being out off until Sunday. Apparently the lasting affects of one of the hurricanes will be passing here tomorrow and we are expected to have heavy wind and rain.

As for our goal for the Memory Walk, thanks to all our friends, we are well on our way to our $2,000 goal. As of today we are at $1,620.00. THANK YOU to all who donated.

Strength

I am pleased to say that Mike was approved and started on Hospice on Tuesday Sept. 1st. I have yet to meet with the nurse that will coming once a week, but I hope to hear from her today. The social worker already called and will be coming by next week sometime. I pray that the services provided by Hospice will help lighten my load.

Today is a bad day for me. We all have good and bad days, right? Everything just seems to be piling up and I feel the pressure building. Financially, we can't be worse off. I don't remember a time when things are as bad as they are now. Each month I have to decide which bills I can pay, and I put the rest off. Topping my list of priorities are our health insurance, utilities, mortgage. Credit cards are at the bottom and there are a few I have not paid since January. Yes, that's right. We also pray everyday for sunny weather because I still have not been able to afford a new dryer since our current one broke when Mike was hospitalized in June (but that's the LEAST of our problems). This disease took Mike out of the work force way too soon and has burdened us with one salary - which was recently cut. This is our reality and I KNOW it's the reality of other families going through difficult illnesses.

Emotionally, I am also at a low point. Courtney turning 17 and starting her senior year is just the tip of the iceberg. Knowing that I will have to bear the burden ALONE, on all that's involved with college and facing the fact that Courtney will no longer be living at home next September has me in a tailspin. My brother who moved in with us in May, has NUMEROUS physical and emotional issues and unfortunately they are beginning to affect me and the kids. I just can't tell him he can't live here anymore. He also took a pay cut and can't afford an apartment on his own. His divorce is still not finalized after 3 years and he has bad back and shoulder injuries. My mom is here everyday, as she has been the last 16 years, but she's getting older and more difficult to deal with. She's also very depressed, and she and her husband walk in the door to our home everyday arguing. She is obsessed with my brother's problems and talks about them constantly. We can't seem to escape it. Courtney was actually GLAD to go back to school so she wouldn't have to deal with the craziness all day. When I try to talk to my mom, SHE gets offended and tells me she just won't come by anymore.

There are days when I just want to scream to my brother and Mom, "DON'T YOU GUYS GET IT????"..... We are dealing with issues far bigger, yet they continue to talk about and dwell on THEIR issues. I know everyone's problems are relative, but can't they see the additional stress they are putting on us?

Not everyday is like this, but today I am feeling it more than usual.

No, today is not a good day for me, but I know with strength from God, I will get through it and I KNOW that tomorrow will be better.

Labor Day

Well, today is the "official" end to summer. Where did it go?

Our summer started off on a bad note. Mike was hospitalized in May/June and so our summer began. After some very nerve wracking weeks, Mike came home and started to gain strength back. We had MAJOR changes with regard to letting Nathan go, but so far, things seem to have worked themselves out. The hospice rep will be here tomorrow so that I can re-sign documents and Mike will be enrolled as of then. I pray that it works out. I believe that just knowing that a nurse will be here once a week (and more if necessary), gives me a sense of comfort. Over time, we hope she will get to know what's "normal" for Mike and what to be concerned about. Our goal is to basically keep Mike out of the hospital as mush as necessary.

Nathan came by yesterday and visited us. We couldn't "read" Mike, but I hope he knew that Nathan was there. We gave Nathan his custome made T-shirt for the Memory Walk and he loved it. We made shirts for everyone with a picture of themselves and Mike on the front. Unfortunately, Nathan has to work the day of the walk and cannot walk with us, but he will be with us in spirit. He looked well and we were all happy to see each other.

I took the kids school supply shopping yesterday. My kids love getting their notebooks etc. Courtney is looking forward to school, Brandon doesn't say much. Courtney has SO MUCH going on this year, it's making MY head spin.

Today I HOPE to relax. LOL. We had a busy weekend trying to get things together for next weekend's BBQ/Lemonade sale to kick off the Memory Walk. Courtney's 17th birthday is Friday (where di those 17 years go?????).
With all that I do each day, why do I always feel guilty when I want to take a few hours to just relax?
Goodbye summer, hello school year.