The Brain

With Mike's illness, I've seen how complicated the function of the brain (or lack thereof) can be. What I wonder is, can the brain actually EXPLODE????? There are days when my brain "hurts". There is so much worry, concern, planning, fear, sadness - I often wonder how much the brain can handle.

Our Energizer Bunny

I kid you not, Mike TRULY is our Energizer Bunny. He keeps going and going and going...........

We would find ourselves saying that after each hospitalization, so for Christmas, we decided to get Mike a shirt that expressed that thought.

My sister and her family came in from Pennsylvania today and, as always, we had a great time. We don't get to see them that often, so when we do, we find ourselves laughing until it hurts. They will be here until Sunday and it will be a nice change. We are thankful they came, considering that my brother-in-law (the same one that had bypass surgery last year) has bronchitis. My sister had to take him to the ER on Christmas afternoon because he felt really crummy and couldn't wait until Monday to go to the doctor. At least now he's been on antibiotic for a full day, so we hope he's feeling better by tomorrow. He was a sport today and trudged through the festivities like a champ.

The kids got their report cards today and were VERY pleased that they did well on their finals. They continue to amaze me, considering the fact that they had their finals in the middle of Mike's hospitalization. They studied at the hospital when they had time, then at night when we got home.

Today was a good day.

P.S. We were thrilled to finally get Mike's repaired glasses! He is no longer seeing through duct tape!

Blessed Christmas

Merry Christmas to all.
Today was a different, yet nice Christmas. Mike's aide had the bulk of the day off (she came by for 2 hours at the end of the day to give him dinner) so I got to spend most of the day with him, which I enjoyed and savored because I have no idea how many more holidays we will have together. The kids were gracious for their gifts, or lack thereof, but we all realized how VERY BLESSED we truly are. I would not have changed our day at all. Well there IS one thing I wish we could have done and that was go to Mass. Because I had to take care of Mike, and needed to be here, I could not get there. We wanted to go to Midnight Mass, but once again there was no one to stay with Mike. Mass is a HUGE part of this holiday and it hurt us all, but as I explained to the kids, we didn't stay home just to "relax". We stayed home to take care of Mike and I'm sure God would forgive us.
Tomorrow my sister and her family will be coming in from Pennsylvania to visit for the holidays. As always, we look forward to their company.

Update

Mike came home from the hospital on Monday. I apologize for not writing sooner, but things have been chaotic - at best.
He seems to be doing "OK", just very slow. As usual, I get concerned, and the kids try to bring me back up. They remind me that we have been down this road before, and Mike always seems to re-bound. I just cannot ignore the FACT, that one day he will not re-bound.
Our Christmas has been disrupted and I am trying to salvage it. After spending a week in the hospital with Mike, every day for 12 hours a day, I have not had the chance to finish anything. My house is a MESS and I will be owing quite a few people gifts. I guess I can say that this Christmas Season we will experience the true meaning of Christmas. We may not have all that we needed or wanted, but we will all be together.
I thank you all for your prayers of love and strength, and I wish you all a blessed and peaceful Christmas.

Happy Birthday to Me :(

Today is my birthday - yes I'm 21 again.

Mike was not his best today, but I got a great big smile and laugh from him. The picture was taken during that laugh. I know he looks pathetic, with his glasses being held together by duct tape. We are impatiently waiting for his other glasses to come back repaired.
Today brought the usual fears and concerns. Much like the last time Mike was hospitalized (May), I spent everyday with him, most of the time by myself. I've seen every cough, every breath and I get scared. The kids keep reminding me that I felt the same way in May, but then Mike came home, to his own house, his own bed and on his own schedule. He managed fine and remained "status quo" for quite some time. My fear remains pretty much the same as then - what happens if he can no longer eat and forgets how to swallow? Will we be strong enough to accept that fact? In accepting that fact, we will in essence, be saying "good-bye". The kids and I had that talk a few years ago, and we all agreed that when Mike can no longer swallow, we will be able to accept it, because we would know that he would otherwise be suffering and run the risk of choking. Now that the reality is closer, I'm afraid that the kids will have a harder time than they thought. I just keep trying the stress to them that I would much rather see Mike at peace, than using every ounce of strength to swallow something he can't.

I pray to God for strength and courage for ALL of us.

Day 4 in Hospital

Mike still isn't "up to par". He took a little more food and drink today, but not alot. Midway through the day, I noticed that he kept moving his right leg. Normally, he's usually very content, but for some reason, today, he kept moving his leg. Later in the day, I was re-positioning him and I noticed that there appeared to be swelling near his ankle. I called the nurse to check it out and she was just as perplexed. She called the Residents in and they examined it. They feel that Mike is retaining fluid. I told them that he looked uncomfortable today and I was concerned because of his history of blood clots. They decided to order a dopplar test on his legs tomorrow. Now I get concerned because he HAS has pulmonary embolisms in the past. I begin to wonder if Mike's heavy breathing on Monday/Tuesday could be the result of blood clots in his lungs??? I guess this will be something I discuss with his doctor tomorrow. This morning we had discussed Mike possibly coming home tomorrow or Monday.

One thing I have learned through these past 7 1/2 years - I will NEVER get used to this. I HATE not knowing what's wrong, I HATE Mike not being able to talk, I HATE leaving him at the hospital, I HATE worrying, I HATE having to constantly think about the day that we lose Mike. I HATE getting prepared for the worst, only to have things turn around. I HATE feeling exhausted, I HATE seeing Mike in pain, I HATE seeing the kids get scared, I HATE ALZHEIMER'S DISEASE.

I don't ever want to seem like I am complaining when I write. I write this blog to try to explain what it's like to live with someone with Alzheimner's Disease. There are good days and bad, ups and downs. I will never regret caring for Mike. We all feel very humbled when all the doctors and nurses tell us that they cannot believe how good Mike looks, and especially how good his skin looks (skin breakdowns are very common in all patients who are not mobile and one needs to be very vigilant in doing their best to prevent them from starting). They tell us all the time that it is VERY CLEAR that we take good care of him. That makes all the exhaustion worth it and I know in my heart, that Mike would be doing the same for me.

Sleepy Day

Today was not a great day. Mike slept the entire day.

I get to the hospital between 8:30-9:00 a.m. every day. This morning, Mike wasn't as alert. I tried giving him some breakfast but I didn't get far. I didn't want to force it, because I didn't want him to choke. Then he opened his mouth and yawned and I saw that his tongue was all white. He now has THRUSH, which means he will most likely not want to eat or drink for a day or two because his mouth and throat hurt so bad. I can look on the bright side and say at least he's in the hospital on an I.V. and he will continue to be hydrated. He just cannot get a break.

They tried switching all his meds from IV form to oral, in anticpation of him coming home. I stepped out to go to the ladies room and when I came back, Mike was up in bed and coughing with a pained look on his face. In my short absence, the nurse tried giving Mike his liquid meds via syringe in his mouth. NOT GOOD. I immediately told her to stop. She seemed completely confused, apparently no one had told her that EVERYTHING Mike takes in by his mouth needs to be thickened. She felt awful. When I think about what could have happened, I shuddered. Can you imagine what would have happened had I not been there? I do everything I can to tell everyone on staff about Mike's special needs, and it never seems to make it to his file for all to see.

Mike continued to sleep the rest of the day. We got him to smile a few times, but nothing more. The kids and I left early tonight because it had snowed all day today and I wanted to take my time getting home. It feels weird being home at this time. We usually do not get home until about 9-9:30. The nurse showed me the BIG sign she made for Mike's file (about the meds) so that no one will make the same mistake she did, so I felt more comfortable leaving him, but I still felt guilty leaving him by himself so early.

Good Day

I am relieved to say that today Mike did much better. His fever is gone and he doesn't seem to be in pain anymore. He even had some lunch and dinner today which made me very happy.

When I walked in his room this morning, we was still sleeping. His lips we SO dry and I felt so bad for him. I gave him a kiss and he opened his eyes and gave me a smile. I was set - that was all I needed to see. I cleaned up his mouth and mixed up his Gatorade (with the "Thick'It") and he seemed genuinely happy to get something to drink. Once again, it's times like these that leave me feeling so bad for him. He's so helpless lying there not able to express his needs. I started off very slow, because I didn't want to give him too much on an empty stomach. After he had some juice, he put his head back and fell asleep. He looked very content, which was a far cry from how he looked when we brought him in. I like his content look MUCH better.

The kids came up later in the day with my mom, after their tests, and they were very happy to see him relaxed and comfortable. They both studied again (they have 2 more tests tomorrow - unless we get all that snow they're calling for, in which case they will be put off until next week).

Oh yeah and one more bit of news.............COURTNEY GOT ACCEPTED INTO FORDHAM UNIVERSITY!!!!!! That's where she's wanted to go since she visted it last year and I was so concerned for her that she wouldn't get in. Now the next HUGE hurdle will be figuring out how to afford it. I hope she will be elligible for merit scholarships and financial aid. Heck, if we're not elligible for financial aid, who would be????? I am just so proud of her and so happy that she got into her first choice school. She will also be applying to Vassar and NYU, and while they are considered her "reach schools" I think she has a good chance to get in. If she does, we will have to seriously reconsider her choice, since those 2 schools may have a better communications/film department. And now the fun begins..............

So all in all, today was a good day. Mike did well and Courtney got into her first choice college. Let's hope that tomorrow is another good day. We could sure use more good days.

29 Hours Without Sleep

On Monday, when I came home from work, I knew there was a problem with Mike. He was hunched over and making almost a groaning noise. A short time later I took his temperature and it registered 100.9. We got Mike into bed early Monday night so that I could give him a Tylenol suppository. He continued moaning, which for obvious reasons, gets Courtney and Brandon very upset. Who wants to see someone they love, especially a parent suffer? I laid in bed with Mike until he calmed down. I took his temperature again at 9pm and it was 102.9. I was very nervous and even though Mike is on hospice, my past experience with them has not given me the confidence I needed to call them. IF someone got back to me, what would they be able to do? Needless to say, I got very little sleep Monday night.

At 8:30 yesterday morning, I put a call into hospice. When Mike woke up, he didn't seem to have a fever anymore, but he still seemed to be in discomfort. He ate all his breakfast and drank about 3 glasses of juice and Ensure. The nurse came by around 12:30 to check on him. I had asked if they could perform blood tests, and she was hesitant. I asked if they could check his urine (for a UTI) and they seemed to hesitate with that also. They finally conceded and got a urine speciman. They sent a technician over to perform a chest x-ray and when I called for the results, I was told it was "all clear". But by this time (approx. 4pm), Mike was STILL breathing VERY FAST and I was quite concerned. I questioned a possible infection in his bloodstream (sepsis) and it was then that they suggested that I take him to the hospital where they are equipped to do all the testing they needed to. They arranged for an ambulance to get Mike and we got to the hospital by 5:30 last night. The kids decided to stay home for a bit, have dinner and then come up later. Courtney brought me the car so I had a way of getting home and my brother picked them up. They have their tri-mester tests this week and next, and had to get home to study. They left the hospital at about 8:30 p.m.

By this time, Mike's breathing had slowed up alot, yet it still was not "normal". Preliminary tests showed "possible pneumonia" in the lower left lung - what a surprise. The same exact shadow they see each and every time Mike is admitted to the hospital - for anything. Alot of his functions were "off" which would indicate an infection, but they could not pinpoint it yet. He did have a sore on his buttocks which they were concerned about. That happened VERY quickly at home over the course of about 3 days.

While in the ER I had asked the doctor to check out Mike's shoulder. Remember, the one that swelled up about 2 weeks ago which when Hospice finally x-rayed for me, showed that is was "normal". Well the doctor was SHOCKED and said it was obviously dislocated. For two weeks Mike has been enduring the pain of a dislocated shoulder and I did not know it. That news put me over the edge. I tried to get answers for him, but no one would listen and when they did, the x-ray was obviously not done right. Well, the ortho Dr. spent almost all last night working with Mike's shoulder to get it back into place. About 7 x-rays later, a shot of morphine and an arm sling, they thought it was fianlly back in place. Well tonight, it looked out again. The doctor explained to me that because it has been out of it's socket for 2 weeks, it will be difficult to get it to stay in place.

Synposis - Mike is in the hospital and he has a dislocated shoulder, 2 bed sores, and an infection somewhere. He is now on 4 very strong antibiotics that would kill "anything" they said and cover all bases since they're not sure where the source is coming from. They do not think he is septic, but his levels are off in different areas.

I woke up at 7am Tuesday morning and here I am now. After 29 hours of no sleep, I came home and slept for 2 1/2 hours while my mom and Walter stayed with Mike. When the kids got home from school, we all went back to the hospital and stayed until about 8:30 p.m. I knew I would have no time tomorrow to Blog, so that's why I am writing now. This has taken me a LONG time because of all the mistakes I was making from my sheer exhaustion.

I pray that they will figure out the source of Mike's infection and that he can be home for Christmas. We spent one Christmas in the hospital, we would rather not do it again. As for shopping, decorating, cleaning etc. Yeah right??!!! 29 hours of no sleep has finally taken it's toll and I'm going to bed.

When it Rains...........

I had the day off yesterday to try to get some things done for Christmas. I have been trying desperately to decorate the house (inside and out) since the weekend and only a small portion has been done. Because my boss is going away next week (again) I asked for a few days off so I could get things done. I got two days, and yesterday was my last day off.

It began with me waking up and feeling like "poop" (it's a family Blog -LOL:). I started to not feel well over the weekend and Monday night, I knew it was coming. My scratchy, burning throat, runny nose, pressure in my head and my ear hurt. To top it all off, my asthma was acting up because of this. I had to go to get my yearly thyroid sonogram. Oh yeah, Mike's eyeglasses broke in half on Monday and I had to try to find someplace that could make up another pair without him being there. After my sonogram, I set out to the vision place. They could not make another pair without Mike's written prescription (I doubt he ever had one) because he had too many stigmatisms (is that the word?!) and they couldn't get an accurate reading from his lenses. I was so upset, but I didn't have time to think because my mom called from home to tell me that the x-ray tech was on his way over to x-ray Mike's shoulder, finally. I ran home to help them get Mike ready for that. After that was done, I had to go to the pharmacy to get a cream for Mike for a rash he's had since Monday (I get panicked because of his MRSA past). Oh yeah, and Mike's aid had hurt her wrist in the morning, so I had to make sure I was home when he had to be transferred because she couldn't do it herself. I did all this while not feeling well.

Final results: I still have not been able to find a place that will make Mike's glasses, his x-ray showed no break, dislocation or fracture (YEAH), I have a sinus infection and an ear infection and Mike' aide will most likely be going to the doctor to have her wrist looked at. I went to the pharmacy to frop off my medication and they called to tell me that my insurance listed my policy as "expired". I wanted to start the antibiotic tonight, but now I will have to look forward to arguing with HIP tomorrow morning.

I told God that I'm not particularly enjoying his sense of humor right now.

'Tis the Season

Mike's shoulder is a mystery to us. Some days it seems to be OK, other days it seems to be swollen. I give him Tylenol every now and then, because he does appear to be favoring it (he keeps it bent at the elbow folded in against his stomach). When I touch it and move his arm though, he doesn't appear to be in pain. I'm not sure what to do. If it continues to be swollen on and off, I may check into what I would have to do to get it x-rayed.

Christmas preparation is keeping me busy. Putting up the tree and decorating is so much extra work, on top of everything else that I need to do on a daily basis. This holiday was Mike's favorite, so for that reason, I try to make everything look festive. Courtney and Brandon also like to have everything decorated, I just really don't think they "get it" though. My days are swamped normally, but now factor in all this extra work, and I am more overwhelmed than normal.

We had a nice surprise today. Our friends knocked on the door and delivered a beautiful poinsetta plant. Their son was selling them for Boy Scouts and our other friends (Mary and Chris - you remember the friends who "flocked us") bought a plant from their son - FOR US. It is beautiful and a nice surprise. It's always the small things that make our day. Thank you Mary Chris (for the gift) and Norma and Andrew (for the delivery).

A Good Book

I've mentioned before that a group of EOAD spouses go out once a month. We have been able to do so through the goodness of one of our members, Pat Moffett. He wrote Ice Cream in the Cupboard, the story of him and his wife and their life as they navigate through the craziness of diagnosis and realization of life with Alzheimer's Disease. If anyone wants to read a really TRUE story, this one would be it.

A small world story - I mentioned to my brother that Pat's wife had worked in the same school district that my brother works. I told him the name of the school and sure enough, he knew her. He said she was one of his favorite people. He had heard that she was sick, but he never knew what happened to her. He started reading the book with a whole new outlook, this time through familiar eyes. He was so saddened that he now knows another person with Early Onset Alzheimer's.

Swollen Shoulder

Thanksgiving weekend proved to be uneventful, just the way we like it. Mike's aide was not in alot (due to the holiday and the death of a friend), so I got to spend more time with Mike. It was hard to do when so much other work had to get done, but true to form, I looked at it as a gift. I would probably have been running all over, taking time here and there to be with Mike, but this situation "forced" (I say that in the most special of ways) me to spend much more time with him. Special time that I will never get back, so for that I am thankful.

Last night though, our uneventfulness came to an end. As I always do when I get home, I go over to Mike and hug and kiss him. He's lost enough weight that his shoulders and back are very boney. Last night though, I noticed that his one shoulder was swollen. Right in front of his left shoulder blade, it looked as though someone cut a tennis ball in half and placed it under his skin.

Today I will be trying to get an answer as to what that is about. Is it an infection? Could we have pulled his shoulder out of it's socket when maneuvering him? (a thought I don't even want to imagine) Could it be arthritis? All I know is that he didn't move his arm at all last night and he seems to be uncomfortable. I will be calling my "friends" at hospice to see what they recommend. My fear is that they will tell me to take him to the hospital. He would most likely be there ALL DAY which would mean, no drinking, no medicine, no food. If Mike goes one day without his allotted nutrition, it could be a disaster - that's how fragile he is. I hope they will be able to send a doctor over first to evaluate it. We'll see what happens and I will let everyone know.

UPDATE: The hospice nurse came this morning, but as I expected, Mike's shoulder was no longer "as swollen". I took pictures last night because I had a feeling that would happen. Quite often, something will be amiss with Mike, then as fast as it came, it's gone. She said that maybe his shoulder was dislocated -the ligaments and tendons are fragile and since he's not mobile, they become atrophied. Maybe sometime during the night, it "went back into place", but he didn't move an inch last night, so I'm not sure how that could happen. She told me what to look for in case of an infection. Otherwise, he seems to be doing OK.

New Adventure

This morning I did something I have NEVER done before. I woke up at 4:30 in the morning to go shopping!!!!

The girls at work were talking one day about how they all used to do this the day after Thanksgiving. I always thought people who did this were crazy. I was always so exhausted after all the cooking, serving and cleaning up, I could never imagine getting up so early to shop. This year, I thought "why not?" The economy is so bad, my finances are horrendous, so I thought it would be THE BEST time to start. Kohl's is practically around the corner from my house and they had so much on sale. I could get the kids 3 shirts/sweaters that I would normally only have been able to get one of. With Courtney's help (she came downstairs to sleep near Mike "just in case" and my brother was upstairs also) I got up and out by 4:30. Kohl's opened at 4am and I couldn't believe it when I pulled into an overflowing parking field. I was such a novice at this. Woman had drinks, coffee, i-Pods to listen to - they were ready for the day ahead. I went in blind. I got what I had to get and then waited on line. I timed this adventure. I got on line at 5:27 a.m. and was taken at the register at 6:33. It took me less time to shop than it did for me to buy. I met a couple of woman during this time and we spoke about much of nothing. The salespeople were all so helpful - which surprised me because they all had to be there so early in the morning. The people that go shopping that early in the morning are a different breed of people. I don't know if I will ever do this again, but this year - it was my new adventure.

Be Thankful

Happy Thanksgiving.

Today I gave a toast before dinner. I expressed my thanks for all those present for their love, support and help all these years in helping me care for Mike. I have been truly blessed. This disease makes it nearly impossible for me to care for Mike by myself. My family has been with me through thick and thin and I am forever grateful. I know some of my family tend to focus on all that they don't have. They are riddled with illnesses - none of them serious. But they tend to feel sorry for themselves - "Woe is me". In my toast I tried to remind everyone present how truly thankful we all should be. We could always have more of something, but in retrospect, we have enough of everything. We have roofs over our heads, food on our table and our health. I asked that whenever we feel a little sad, to think about those less fortunate. Especially during these times, when everything is so touch and go with the economy, when misfortune could come to us in the blink of an eye - we need to appreciate each other and every thing we have been blessed with. Today is truly a day of Thanksgiving.

The Ignorance of Some

My family and I are HUGE Ellen DeGeneres fans. Not only do we love her sense of humor, but we also love the fact of how much she gives back. She doesn't give cars away to her entire audience, but she gives back in more quiet, unobtrusive ways. She seems to be a genuine, caring and thoughtful person. Because of this we LOVE her show, but quite often don't have the chance to watch it. So, we DVR her shows (our area's equivelant to TiVo). We are far behind right now, we're still watching shows from September, but we look forward to days when we have "Ellen-a-thons" when we watch about 3-4 a night.

Over the weekend we watched a show from September 17th. One of Ellen's guests was the writer of the very popular book series (now turned movie), Twilight. The author's name is Stephenie Meyer. Ellen introduced her and began to ask her questions, the first one of which was, "where did you get this idea from?". Ms. Meyer begins to explain that she's a mom of three children blah, blah, blah then blurts out........ "I HEARD THAT PREGNANCY CAN CAUSE EARLY ONSET ALZHEIMER'S........... WITH THREE CHILDREN, I SEEM TO FORGET EVERYTHING".

Well, that's all I needed to hear. I'm not sure who's head snapped around faster, mine, Courtney's, Brandon's or my brother's. I immediately asked Courtney to turn it off. I couldn't hear the woman speak another word.

How dare she get on national television, in front of millions of people and make a comment like that???? Does she also joke about cancer, heart disease, ALS etc???? How careless can one person be?? One cannot argue that she didn't know what she was saying, because she even narrowed it down to EARLY ONSET, which means she knew darn well it affected younger people.

I went on line right away to find her web site. Not surprisingly, there's no option to contact her through her web site. Courtney Googled her and was able to find her publisher. I will be writing a letter to her voicing MY opinion. If anyone cares to do the same, you can contact her at: Stephenie Meyer at Little Brown Co. C/O Author Mail, 237 Park Avenue, New York, NY 10017.

It's ignorant, stupid people like her that this disease definitely does not need.

Work as Respite

In the beginning of this journey, I HATED going into work. The thought of leaving Mike at home alone during the day made me sad beyond measure. At that time, my dad was coming over and of course my mom and Walter would visit. We had purchased Gizmo as another way to keep Mike company. It just hurt so much when the kids would leave for school and me for work, and Mike would be here by himself. As the disease progressed, Mike couldn't be left alone, and my mom and dad would make sure they were here with him until I got home from work. That was of course until he went through the anger and agitation stage. My once quiet, peaceful and loving husband who had NEVER raised his voice ever, punched a hole in our kitchen wall. That was because my mom had to lock the back door so he wouldn't run out. Instead of being upset with him, we all felt so helpless. I knew, without a shadow of a doubt, that his lashing out was a result of his fear and possible acknowledgment that he was no longer free to come and go as he pleased. His freedom was gone. I had to make the agonizing decision to admit Mike to the hospital a so they could regulate his medication. After spending the entire summer in the hospital, he came home much more under control. This was what we all needed to be done in order for us to keep Mike at home with us.

Seven and 1/2 years later, here I am. I actually look forward to going to work. It's not that I don't love Mike anymore, in fact, I feel like I love him more, it's just that the time I spend at work, is usually the only time that I have to "get away". My work is my respite. For all the crazy clients, annoying people and crazy phone calls, it's usually the only time I have to be away from the 24/7 stress of Alzheimer's Disease.

We've all come a long way since that dreadful day in April of 2001 when Mike was diagnosed.

Pastoral Visit

Last night our Pastor, Father Ralph came to visit us. I was looking forward to talking about a few things and hopefully getting the kids to open up a bit more with their feelings. The visit was a success and the kids were pleased to see that Father Ralph has the same sick sense of humor as we do. Our sense of humor has really seen us through the darkest of times, it's something we try to never lose. Of course there are times when humor is not appropriate, but in dealing with hardship day in and day out, especially Alzheimer's Disease, I often think it is our sense of humor that has carried us through. Courtney made her famous Monkey Bread and she made another one for him to take back to the rectory.

Mike is still holding his own. Thankfully, with Father Ralph's understanding and guidance, I was finally able to open up about how difficult the end stage of this disease has been. I just want Courtney and Brandon to realize that I am NOT giving up on Mike and I NEVER will. My biggest fear was that when Mike does pass, they will blame me for not doing all I could. I believe we were able to put that on the table last night and come away with a better understanding and love.

EOAD News

Today was a busy Saturday, as usual. Mike still seems to be status quo. Can't complain I guess. Brandon is sick with a sinus infection.....AGAIN. We have to try to get him to the doctor next week (he had his ENT appt. the following week). We also found out that the Newsday article that was originally supposed to be out in November, then December, then January will be out in February. We joke around with the reporter that it will never make it to print, but we are thankful that they are taking their time to release it knowing when it will be done right. We had been working with them (reporter and photographer) for a year when our story was written, so they got to see first hand what living with EOAD is all about.

We also added a link to our blog (on the right side) about a family we got to know through Alzheimer's Foundation of America and the JCC. They also live here in NY and the husband was diagnosed at an early age also. One of their daughters goes to the same school as Courtney and Brandon. I am so pleased that other younger families are beginning to speak out to bring attention to this disease that is NOT just an "old person's disease".

Pray for ALL those families.

Not as Floppy

Today Mike woke up and appeared to be "OK". He was not as floppy, he even resisted Mary taking his shirt off. Within a few minutes of waking, he even smiled.

This was a FAR cry from last night. After our crazy morning, right after we put Mike into bed, he started breathing very heavy. He had some "gurgle" in his throat, but couldn't get up enough strength to cough it out. About 8:30 he started feeling warm and when I took his temp. it registered at 100.3. I gave him a tylenol suppository and after a few hours, he seemed to be OK. After what happened yesterday morning, I was up most of the night making sure that Mike was breathing. HE slept fine, but I slept on and off the entire night.

Today I went for my eye check up. I lost my glasses 2 weeks ago and my last eye exam showed that my glaucoma levels were a little high. I have looked absolutely everywhere for my glasses, and they are nowhere to be found. So I figured "divine intervention" misplaced my glasses so that it would force me to finally get myself to the doctor to have my eyes checked. It worked and everything went fine at my appointment.

I will pray that Mike continues to remain stable. Thank goodness our Pastor is coming to visit us on Sunday, I have ALOT to talk about.

Bad Morning

This morning was QUITE scary. Mike woke up a little more "limp" thank usual, but I wasn't too concerned because usually once he gets fluids into him, he "wakes up". I helped Mary get him ready and left for work. Just as I pulled into my office parking lot, my mom called from the house, "Karen, you need to come home right away". I asked "Why, what's happening?". She said that something was wrong with Mike, the aide wanted to call an ambulance, but she wouldn't do it without my OK. I raced home. I was almost home when my mom called again to tell me that they had put the oxygen on Mike and he opened his eyes and seemed to be "coming around". Apparently, he was totally unresponsive and they couldn't find his pulse.

By the time I got in the house, he seemed to be OK. He was eating and drinking. I called hospice and this time had no problem. His nurse got there in about an hour. She checked him COMPLETELY. His blood pressure was perfect (120/80), his pulse good (72), his lungs were clear and he had no fever. We were at a loss as to what could have caused his complete unresponsiveness. Then the nurse said he may have had a "S" (you all know I VERY RARELY say [or type] the word). This would make perfect sense, since after the very first one he had, this was how he was afterward. The only difference was is that this time, he didn't scream or shake. The nurse explained that there are all different kinds of "S's". She was convinced this is what happened. My concern is that because of his lathargy, Mike missed an hour of eating and drinking, which is key for Mike. His schedule must be exact.

So now we wait. Hopefully whatever it was passed, without any lingering affects.

Veteran's Day

Everything is pretty much the same here. We all had off yesterday (from school and work). Courtney had to go out to her friend's house to work on a project and I took Brandon and his friend to see the movie Role Models. It was a busy day, but doing fun (different) stuff, so it was OK. A nurse came by to check Mike and he's doing "well". The podiatrist also came by to check that never-ending infection on his toe. Thankfully, it FINALLY seems to have disappeared. We'll keep our fingers crossed.

I felt bad because this may have been the first year since the kids were small that I did not take them to the Veterans Memorial to pay respects to their grandfather (Navy in WWII) and all the other servicemen/woman who serve us so well. My dad was very patriotic ad I am pleased to say that I passed that on to Courtney and Brandon. Even though we all had our busy schedules, Brandon remembered what day it was. He seemed genuinely disappointed that we were not going to get to the Memorial. I assured him that we would try to get there this weekend.

Scary Future

Never have I been more nervous or realitic about the affects of this disease than I have been recently. As difficult as it is to express, in written or spoken words, Mike is on a downward spiral. I cannot ignore the facts: he's starting to cough more when he eats, he's losing weight, he's sleeping more, his head is drooping more and his smiles as are not abundant. The kids don't want to hear anything about it, as I can completely understand. I try all the time to ease them into discussing the inevitable. It's scary for me, so I can only imagine how they must feel. How difficult will it be to let go? How hard will it be when Mike just isn't eating anymore? Will we be able to say, "this is it?". It will be VERY hard especially since he's still smiling with us. I always thought that when his body starts of "shut down", that he would become somewhat "catatonic". He would stare and have no expression. Now thouhg, he's still very much looking around and smiling with us. I just can't imagine having to come to the realization that he's beginning the final stages of this disease, when it doesn't seem like Mike "fits the bill".

I guess I think back to another "blogger" that I knew from the Alzheimer Association's Message Boards. If I remember the story correctly, her husband had actually gone to a wedding with her in January. Then sometime in March, he just decided he did not want to eat. For almost 2 months, she sat vigil with him as he wasted away from not eating or drinking ANYTHING. He held on for so long, but finally "let go" in April. If this man can go from being well enough to attend a wedding in January, to not eating at all in March, to passing away in April.............

I HATE this disease - all the uncertainty, all the cruelty, all the pain and emptiness, all the suffering for all those involved, it's hard to even fathom. On a night out recently with fellow spouses of EOAD people, one husband put it so well when he said, If my wife was dying of cancer, it would be horrific, but for most of the disease, I would still have my wife to talk to and to cry with. With Alzheimer's Disease, my wife has been a "shell" for so long, I do not have my life partner to talk to and cry with. SO much has been taken away from us.

There's nothing else I can say.

New Picture

Sorry I didn't get to post this sooner. This was a picture taken on our Anniversary 10/28.

Although Mike cannot speak, he can always convey his love to us by the smiles he gives.

New President

Yes, I know this blog is about EOAD, but I would be remiss if I did not mention that history was made last night when Barack Obama was elected the 44th President of the United States. After watching people all over: young, old, black, white, spanish, caucasian......with tears in their eyes because of the newly elected President, I had the chills. I stayed up last night to watch his speech and I was NOT disappointed. I think all the tears last night were from people who want change, they want to be proud of the USA again, they want things to be better - and we are hoping Barack Obama will help us do that.

The town we live in is very diverse. Many of our neighbors are spanish and Courtney and Brandon's parochial grade school consisted of African Americans, Haitians and Portugese students. My children grew up color blind - and I think that's a good thing. During this presidential election, they very rarely even brought up race, because they did not see it. That's the way all of us should be. I think last night's decision was finally a result of everyone looking past color and seeing a person who is the best choice for us.

I look forward to finally having a President that I can be proud of, an intelligent and eloquent individual. Don't think for a minute that I will not be contacting Mr. Obama with regard to money for research for EOAD. My letter is already drafted, I just have to wait for him to move into the White House.

Gradually Slowing

The clocks went back last night. Yes, I thought I was going to get an extra hour's sleep, but much like when the kids were infants, the time change really doesn't make a different when I have to care for Mike. I was up early and started getting Mike up and ready about 8 a.m. (it would have been 9). If I waited until the REAL 9 a.m., then his entire day of medicine would have been "off". I have to keep him on a regular schedule, as best I can, especially regarding his anti-"S" medicine. I started giving Mike his breakfast around 8:30, and his aid didn't get here until 10:30 (she comes in late on Sunday so that she can go to mass).

Years back the kids and I would discuss about what it would be like when Mike stopped eating. We all agreed that it wouldn't happen "overnight", because when that happens, it's usually another problem or illness. We knew that it would gradually slow down over time, until he just wouldn't eat anymore. Well I have begun to see Mike starting to slow down even more with his food. He used to eat 3 three melas a day, then he went down to 2 and now he's only been eating about 1/2 of each of those meals. Yes, there are days when he does finish everything, but I think the process of his body not wanting/needing alot of food has begun. It scares me to say it, but I can't ignore the facts.

Is it "normal" for me to feel guilty when the kids and I eat? I keep reminding myself about Mike's reaction when he was diagnosed. He did NOT to be a burden to the kids and I - he dreaded how dependant he would become. I know he would want us to go about our "normal" routine, however difficult it may be when we look at him.

Why am I so tired.......

Let me think......

Last night I had to pick Brandon up at 10:30 from his friend's house (Courtney got in about 9:30). I was so tired after a hectic day, so I went straight to bed (11:00 p.m.) At about 2am Gizmo started making a strange noise, almost like he was having problems breathing. I took him out into the living room (I didn't want him to wake Mike) and rubbed his neck and calmed him down. I was back in bed by 3am. My brother got up to go fishing around 4am and I heard him go out. I got up at 5:30 and decided to get sleep the rest of the time on the couch (rather than bothering Mike by climbing in and out of bed). Courtney was up at 6am (she was going away this weekend on a retreat with school BUT first she had to take the SAT's in the morning). She decided to go back to sleep for 1/2 hour and we were up again at 7 a.m. I took her to the school at 7:30 a.m. When I got back, I had to get Mike's breakfast and medicine ready. I was finished around 8:20, then it was time to get Mike ready. Since Courtney was at school taking her SAT's, I was on my own. I bathed and dressed Mike by myself and was finished around 9:15 a.m. I was SO exhausted, I decided to lay next to Mike until 9:30 to get some more rest. At 9:30 I coaxed Brandon up so he could help me get Mike up and out of bed and into his chair. Mike was all set by 9:30 and I started giving him his juice until Mary came. Once Mary (his aide) got here, I ate my muffin and was one my way. I left the house at 10:00 and went to the library, the bank and to Target. Brandon came with me and we got home around 11:45. I unloaded the car and put away all our "stuff". I got Courtney's last minute stuff packed since she was at school and I knew she wouldn't have time when she got home. Before I knew it, it was time to help Mary get Mike into bed (she CAN do it herself, but when I'm home, I help her). At 12:45 Courtney called for her ride home and I went to get her at school. We got home and I went over everything with Courtney. While Courtney stayed home to shower, I had to take Mary to run an errand (which she had asked me to do earlier in the day). I was on the road again at 1:30. I took Mary on her errand and grabbed some Burger King for Courtney so she had something to eat. I got home at 2:30. Courtney gulped down her "lunch" and we were out the door at 3:00. I got Courtney to school at 3:15 and stayed with her a little bit before she left. I headed home around 3:45, but had to stop at the Rite Aid. I had to pick up a prescription, some gloves and chux, which I was told Hospice would not provide. I folded some wash that I had put in earlier in the day. By 4:15 I was almost falling asleep, so I decided to go up into Courtney's room and catch a few minutes rest. I asked that Brandon wake me up at 5:00. At 4:45 he came into the room and told me he was going to his friend's house to play football. I got up then because I was concerned that I would fall into a deep sleep and no one would be around to wake me up. At this time, I decided to go to Taco Bell for dinner. I got home, ate my taco salad, brought in the rest of the wash that was hung outside and put it in the dryer to finish drying.

Right now I'm getting ready to get Mike into bed and I'm waiting for Brandon to come home and help. After I get Mike into bed, I will have to take Gizmo for his last walk of the night. I will then have to fold the wash that is currently in my dryer. Sometime around 9 p.m. I will FINALLY get a chance to sit down.........Now I know why I'm tired. At least I will gain an hour's sleep tonight.

I know that there are many moms doing what I do, if not more, but the difference is, I do it while I'm caring for my husband. I'm not sure what kind of sleep I will get tonight, but like I said, at least I will get and extra hour.

As an aside, yesterday the doorbell rang (Halloween - silly) and my mom answered the door and NATHAN was standing there. What a surprise. Unfortunately, Mike was so tired, he slept through the visit. He looked good and we were all so happy to see him.

The Movie

Last night I finally got around to watching a Lifetime movie I had taped months ago called Forget Me Never starring Mia Farrow and Martin Sheen. What caught my eye to begin with was the fact that this movie was made in 1999 and it was about Early Onset Alzheimer's Disease. How great was it that movies were made almost 10 years ago addressing the issues we are all fighting for so strongly today.

The movie appeared to be based on a true atory about a woman in her 50's diagnosed with EOAD and the struggles she had, especially with her husband, in accepting the disease and all that it would bring. She was desperate to find others like herself and eventually did become very good friends with another man. Both these people had very good careers who were forced to quit because of the problems the disease was causing. The man's wife had divorced him after he was diagnosed and he went to live with his sister. The two characters formed a close friendship, which would later dissolve when the man's sister had to place him in a "facility" because she could no longer handle his care.

What was most poignant, was that the woman Mia Farrow portryed just wanted to talk to her family about what was happening to her and who was going to take care of her when she was no longer able to do so herself. She had a hard time breaking through the denial. Then I thought....Mike & I never really talked about the ravages of the disease and what it would do. We had quite a few conversations within the days after diagnosis, but we never really spoke about it again. After seeing this movie, I wonder if Mike NEEDED to talk about it, like this woman did. I began to feel guilty if that were in fact the case. Had Mike been scared, lonely and isolated and felt he couldn't talk to me? Did he want to talk? I know Mike's family was not very communicative (is that a word?). Mike kept alot to himself through the years, but after seeing this movie, I wonder if he wanted to talk about what would eventually happen to him. Maybe he knew that he would never have to worry about who was going to take care of him. I do remember him saying that it would be OK with him if I ever had to put him in a nursing home - he wanted to know that I should not feel bad if I couldn't care for him at home. I told him that NO MATTER WHAT, I would be there for him. I hope that gave him the peace he needed.

Courtney watched portions of the movie with me and vowed that the movie she makes will be MUCH BETTER. Yes, Courtney wants to go to college to become a director so she can make a movie about Mike the right way. She is deteremined and there is no doubt in my mind that she will make it happen. She wants the REAL story about EOAD to be told, through the eyes of a child that grew up knowing just this.

Our Anniversary

20 years ago today..........................Mike and I danced our first dance to Follow You, Follow Me by Genesis "I will follow you, will you follow me, all the days and nights that were meant to be, I will stay with you, will you stay with me, just one single tear in each passing year there will be............." How I wish that we DID only have "one single tear", but that was not the way it was meant to be.

I named our blog after this song, because it DOES mean so much to me. Much like most typical men, Mike really didn't care much about the planning of our wedding. Don't get me wrong, he was very much a part of it, but he trusted me and agreed with most of my choices. There was only one thing that he REALLY voiced an opinion about, and that was this song. It meant something to him and he wanted our first dance as husband and wife be to Follow You, Follow Me. In fact, I had never really heard the song and when he played it for me - I was pleasantly surprised (Mike was also a Led Zeppelin fan, so I had no idea what to expect). I had wanted another song, so to compromise, we had both songs. We had called to the dance floor four other couples that were married the same year, and we danced with them to the song I wanted.

I don't hear "our song" on the radio very much, but when I do, I am taken back to that day and the happiness and promise we shared. This is not how I would have pictured our lives to be 20 years later, but I am happy that I've had a chance to spend it with Mike.

In sickness and in health, until death do us part..............................

Happy Anniversary Mike - I Love you.

Human Touch

I often talk about Mike's "shakes" at night. I was told by his neurologist the last time he was in the hospital that they were caused by the disease. Basically, the area of the brain that controls those functions were being taken over by the AD and Mike had no control over them. There are times when he may not have them for quite some time. Then there are days when he has quite a few. They will happened anytime throughout the day and/or night.

At night when he has them, I hold him and rub his arm, cheek, shoulder, whatever seems to calm him down. I don't even know if what I do "calms him" or if it's just the shaking that subsdues on it's own. Whatever it may be, I do what I do so that Mike knows there's someone with him. While I do this at night, I often think about the other Alzheimer patients out there that don't have someone to hold them. Quite often, this disease makes it impossible for a family to keep their loved ones at home. I think about those people and wonder how much, if any, the lack of human touch has on the progression of the disease.

When Mike's doctors see him, they cannot believe how good he looks for being 7 1/2 years into this disease. Remember, for Early Onset Alzheimer's, the "average" life expectancy is 5-8 years. We all take great pride in those comments, because we know how much time we put into caring for Mike. Sure, there are those out there who will say that we should devote more time to ourselves, and me to the children - but I look at it as what I was taught through my Christian faith. God sacrificed so much for us - isn't life about sacrifice? What we have sacrificed as a family, has allowed Mike to live comfortably, peacefully and lovingly AT HOME. We have been blessed beyond measure for this and I will forever be indebted to everyone who has helped us along the way. Keeping Mike at home has been no small feat, but because of all the support we get, we have been able to continue.

The human touch is so important for all of us to feel connected and loved, and I am thrilled that we have been able connect with Mike every single day through touch. Please pray for all those who may not be as fortunate.

Roller Coaster Ride

There has been so much on my mind lately and so much to reflect upon.

Much has to do with Courtney's senior year and graduation in June. I remember when Mike was first diagnosed, I feared that he would not be with us when Courtney graduated from High School. That day, I thought about all that he would miss and what graduation would be like for both Courtney and Brandon without Mike there with us. Now, graduation is a mere 8 months away. Only God knows whether Mike will be with us then, but I am very thankful for all the years we've had together. When Mike's mom was diagnosed, things moved so quickly. She went into a downward spiral right away and within 5 months, she was unable to walk, talk and care for herself. We had 3-4 good years with Mike before he got really bad.

I have been searching through pictures to use for Courtney's yearbook ad and it is so bittersweet. I am SO thankful that we have those pictures, but looking back at them and seeing how much Mike had changed over such a short period of time, is sad. I had never before paid attention to the sadness in his face. Of course, there were pictures of him smiling and laughing with us, and those will forever have a special place in my heart.

This truly has been one big roller coaster ride. There have been ups and downs and turns that we couldn't anticipate. I often find myself hanging on (to hope) with all my might, so afraid that I will drop. I cling to my faith on a daily basis, knowing that that has been my CONSTANT support and strength. There were days when I just didn't want to get on the ride, but I had no choice. There were, and still are, days when I feel like this is all one big nightmare and I will wake up and be so grateful.

I can't believe it's been 7 1/2 years since Mike was diagnosed. This disease has changed us in so many ways. It has taken so much away, and at the same time, has given us more than we ever expected - both good and bad. I dont' know what tomorrow or the next day will bring. I will continue to cling onto the ride, not knowing whether I will be going up or down. I can't anticipate the turns, but I will always have my faith to keep me safe and secure.

Henley Update

As of yet, nothing has been done about Mike's leg. Christa mentioned that she felt Medicare would cover the cost of an at home doplar test to find out whether Mike had a blood clot. The next day I got a call from her supervisor, indicating that Medicare would NOT cover the cost. I had three choices: do nothing, take Mike to the ER for the test or pay the out of pocket expense (approx. $250.00). I decided to take a wait and see approach. Beside "possibly" putting Mike on a blood thinner, there's nothing different that they would do, since he already has a filter in his artery. I've been watching his leg VERY closely and for the last 3-4 days, it hasn't been swollen. He DOES have a few "rashes" on his leg in various places which I have also been watching. I get concerned about that because of the MRSA he has.

I had a L-O-N-G talk with the hospice social worker yesterday regarding our "nightmare" a few weeks back and she assured me that she would be speaking with the nursing supervisor to correct the situation. She seemed shocked when I told her what had happened, how long it took for someone to come and check Mike and the lack of professionalism of the nurse that DID finally come. At least I felt comfortable with the fact that it wasn't just me.

Courtney submitted (FINALLY) her two applications for Early Decision - to Fordham and Hofstra. They both have great film/communication/visual arts programs. Her first choice is still Fordham, but thankfully she is now open to other schools if that doesn't work out. I'm sure the disappointment will be there, but at least she will know she can get the same experience/education in another college.

Brandon also continues to amaze me. He got his progress report and he got all A's with the exception of English (B). No surprise there - he HATES English, especially this year with the grammar. He got his working papers the other day and wants to apply for a job at McDonald's where his friends work. I think it would be good for him, but we'll see if he actually does it. He seems to like the idea of making money so he can buy his own "things".

I am hanging in there, taking each day one at a time. Some days are better, some not so good.

Possible Clot

Yesterday's debate did NOT create any transportation issues with the kids and their school day yesterday. After a day of concern and worry about how long it would take for them to get home, everything went fine. That was even with the rally held at Eisenhower Park which is right on the way home (something that I didn't even know about).

I called Mike's nurse yesterday because his calf and foot seemed to be swollen. My concern of course is a blood clot. She came over and confirmed it was swollen and spoke to the hospice doctor and Mike's doctor and ordered a doplar test to be done right here at home. Even though Mike had the "filter" put in after the pulmonary embolism situation, blood clots are still a concern. Ironically, this is happening on the same leg where we noticed a very odd red ring last week. It was more like an oval shape the size of his calf. I was concerned then, but then it went away and I kind of forgot about it. I mentioned it to Christa (his hospice nurse) and she said she would mention it to the doctor to see what they think.

Debate Chaos

Today's Presidential Debate is taking place at Hofstra University. Courtney and Brandon's High School is right down the block from there. All surrounding schools and even some catholic High Schools that are NO WHERE near the debate sight are all closed today, but Kellenberg (their high school) remains open. All roads around the school, in which the buses use to take them to school, will be closed. The question is, when will Courtney and Brandon get home tonight because of re-routing and why are they in school in the first place???? I can't quite figure this one out and they are understandably concerned about how they will get home. The main road to their school is Hempstead Turnpike, the very same road that Hofstra is on. Someone hadn't thought this out very well.

Beside this confusion, everything else is status quo. I forgot to mention that this past weekend, we took Mike out for a walk. I can't remember the last time he was out, but it was such a beautiful day, we couldn't resist. He was actually looking around and staring up at the sky the whole time. As we pushed him around, he had a smile on his face. It was such a great day, in that sense. We can all learn alot from Mike. What so many of us take for granted, are the simplest of things....the sun on our face as we walk outside. Appreciate life's little pleasures and think of all those that can't.

No End in Sight

It's been a while since I've written. Things have been hectic, just never enough hours in the day.

Mike is still having "sleeping issues" which keep me awake. He will shake sometimes, cough , sweat etc., and whenever these things happen, I will wake up to take care of him. There's also the issue of changing him and turning him. I'm still very tired.

I went with Courtney to see Fordham once again (last week) and yesterday we visited Hoftra University (my alma mater). It was interesting, especially since the last Presidential Debate will be held there tomorrow. The place was buzzing with activity and secret service. Courtney is being very mature in her realization that she may not be able to go to her dream college (Fordham). This will not be because of her academics, but in light of our nations' financial situation, we're very concerned about getting student loans. I'm sure she will be elligible for scholarships, but the balance would be covered by student loans and her teachers are telling them they're going to be difficult to get. Therefore, she's looking at more local schools where she may get even more money. She's applied for "Early Action", so she will know by Christmas whether she has been accepted.

I have continued to be disappointed regarding the Hospice Mike is enrolled in. I have always heard such good things about Hospice, but I have not experienced any of that yet. It always seems like I get voice mail and there never seems to be enough people to "cover" if our regular nurse is out. I know I have to so something about this, but I haven't had the time. I'm also having issues with Mike's Medicaid. Instead of his "overage" being $369.00/month, they are telling me that it will now be $1,100.00/month. I couldn't afford that on top of paying privately for mine and the kids insurance. I don't understand why all of a sudden this has changed after all these years (4 to be exact). I was told that Mike's papers were originally filled out wrong. So now I have to go through all the paperwork from when we filled out the application with our Elder Law attorney to see what happened and if there's no obvious answer, then I will need to reach out to that attorney for assistance.

There are MAJOR issues going on in my life and I don't have the time to deal with them. I am once again in the overwhelmed stage where I don't see an end in sight.

Forgive Me While I Sleep

The last few weeks have not been good sleeping weeks.

The first week, Mike was sick and I was up with him a few nights while he recovered.
The second week, I didn't feel well and I slept out on the couch for fear of giving Mike what I had.
This week so far, Mike is having restless sleep, so therefore, so am I.

There have been times when I have fallen asleep in my car at lucnh time - the ONLY time I have to myself during the course of my day. On the weekends, you will often find me taking an "afternoon nap" just to get me through the day. I never had to do this, but I guess all the lost sleep is beginning to take it's toll.

This reminds me of our life when we brought Courtney and Brandon home from the hospital as newborns, but this time, I'm not caring for a child, I'm taking care of my husband and I'm 17 years older than I was then. I'm beginning to feel the side affects of my lack of sleep and my "old age".

Forgive me, if you happen to see me and I fall asleep...............

Washer/Dryer

One of the benefits of working for a Jewish attorney is having off on their holidays. Happy New Year! I had off yesterday and today. I wish I could say that I made good use of the time off, but unfortunately, I am sick. I started feeling bad over the weekend, and sure enough, Monday night, my sinus's started giving me problems. I tried to rest yesterday,but Mike's foot doctor came (his toe is STILL infected) and we had our new washer/dryer delivered.......YEAH!!!!!!!! I was exhausted, but there was no time for rest. At the end of the day, I even had to pick Courtney and Brandon up from school.

Because I haven't been feeling well, I haven't been sleeping in with Mike. I'm not sure what I have and I'm afraid it may be contagious, so I've been sleeping out on the couch. I get up a few times a night to check on Mike, but I'm not in there with him. Guess, what....I miss him. It feels like I'm not spending any time with him by not sleeping next to him. I keep telling him why I'm not in with him and I hope he understands.

On happier note, our washer and dryer are GREAT!! I am SO blessed to have been able to get them - God works in mysterious ways. We do have to have a plumber come out today though because the water hook-up isn't quite high enough for the new washing machine. Because they are on the "pedestals", the line is about 10 inches too short. We had the delivery people hook it up for now (without the pedestal) and then after the plumber extends it, we will put it up. It was quite funny though, we looked like a bunch of idiots staring at them in amazement. It's just that it's been so long since we had gotten a new appliance and the newer models have so many more options. It's always the small things that make us happy.

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.