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.