Struggles

So, where do I begin. To start, all has been status quo with Mike. That's a HUGE plus and something I am very thankful for, especially at this stage of the game. I'm so overwhelmed with other things right now, every little bit helps.


-I am dealing with all the paperwork regarding financial aid/loans for Courtney as she begins college in September. I know there will be issues, considering the fact that my credit stinks (8 years on one salary and trying to balance bills each month). Mike was always the person that was able to translate this kind of "stuff". It all seems foreign to me. I know it will work out, but it's the "getting there" that will drive me nuts. I have alot to overcome, and I'm not sure how everything will pan out.

-Work has been busy. That's a good thing for me. If it continues to be busy, maybe my boss will give me my hours and salary back. At the same time, because it's busy, I haven't been able to do many of the personal things I had done when it was slow.

-Our new aid is working out fine and I pray that it continues to go well. Past experiences have proven to me never to assume that things will go smoothly.

-Beside being busy at work, it's been difficult to listen to one of the attorneys in the office. When he gets frustrated with a client or attorney, he will quite often say "I hope they get stomach cancer". The first time I heard this, I could NOT believe my ears. Mike's dad passed away from stomach cancer, so I know how cruel the disease is and to wish it on someone is completely unfathamable. He says things like this alot, and he's very often crude and nasty. He walks around with the "woe is me attitude" and makes sure that everyone knows what a sad life he's had (both his parents passed away when he was in his 40's) Yet, in spite of all his rudeness and meaness, he has a good life. He takes his family on vacation 3-4 times a year (to Tahiti, sailing in the Carribean etc). I consider myself a good person and I always try to treat others the way that I would want to be treated. I am nowhere near perfect, but I consider myself an overall good person. It stings when I see someone who is so mean and nasty, enjoy things that my children and I will never have. I am not jealous, if he can do it, more power to him - enjoy. It's just that when I can't sleep at night because I am worrying about how I will be sending my daughter to college and he's bragging about his recent trip to Cancun, or his house in Vermont, or his Porsche - it's time like these that I have to rely solely on my faith. This is when I think about whether this man knows how TRULY bessed he really is.

I pray that everything will work out for Courtney and that the good will be rewarded. I pray that God and our guardian angels will give us the strength and knowledge we will need to get us through this.

On another note, both Courtney and Brandon are on a photography trip this weekend to the school's retreat house upstate. They left this afternoon and will be home Sunday night. The house is eerily quiet without either of them here, and tomorrow I will be completely by myself. If this is a foreshadowing for what is to come, I'm not sure that I am emotionally ready for this.

Update

There has been nothing in particular that has kept me from writing, I just seem to be overloaded right now. Work has picked up a bit, which is good. I pray that real estate continues to thrive so that I can go back to my regular hours/regular pay. Time will tell.

The college process has also taken up alot of time. Now that Courtney has decided to attend Hofstra University, it's time to attack all the financial aid froms. It's overwhelming to me. Mike was always so good with forms and numbers, it was never my forte. I feel so out of my element AND then you add in the deadline factor, and I feel doomed. Work has been busy enough that I don't have the time to do anything there. That leaves me the evening when I'm burnt out.

Courtney and I sat down at the computer the other night and we were both bleary eyed. I pray that Courtney will be able to get a student loan. The financial burden this disease has bestowed on me has completely destroyed my credit, and I don't believe I will be elligible to co-sign a loan for Courtney. THAT IS the reality of this disease. Mike, the main breadwinner, was taken out of the workforce in his prime, leaving me to survive these last 8 years on one salary and his small ss disability check. Early Onset Alzheimer's Disease is definitely a completely different "species". Patients in their 60's and 70's do not have to deal with these issues.

On a positive note, Mike has been holding his own. Mike's aid Mary was told byt the agency that she was not to come back to us and we now have a new aid. I believe this was God's gift to us. As much as I knew Mary was creating more stress in our home, I didn't do anything because I was so afraid that we wouldn't find anyone else that could get Mike to eat and drink well. Elaine has been able to do just that and MORE. I pray that she continues to blend well with the family. She has already made some weird suggestions, but just like we have in the past, we ignore the small things for the greater good.

Brandon has gone out driving a few times and is loving it. He isn't as nervous as Courtey was when she started, but I'm not sure if that's a good thing. I don't want him to be too over confident and make stupid mistakes. He got his "real" permit in the mail with his picture on it and he is so proud of that. Next step, signing him up for driving school.

Happy Memorial Day. Let us not forget all those that have sacrificed so much for our freedom. I love you and miss you dad.

Whatta Week

Mike's home health aid has apparently "disappeared". She called in sick on Monday and the agency hasn't heard from her since. She called me Monday night to check on Mike, but I haven't heard from her either. We have had a wonderful woman helping us right now and we're hoping that she will be available to work regularly. God works in mysterious ways.....we were having such problems with Mary and she was creating such tension and stress in the house. Strange how things work. I don't want to get too optimistic, but for now, things are going well.

Courtney finished her last final on Thursday which means she is COMPLETELY finished with High School. She went to a beach party yesterday and today she's in NYC with her friends. Tomorrow she's going to see David Hyde Pierce's new show Accent on Youth and will be meeting him backstage after the show. This was arranged through my friend that held the dance benefit for Alzheimer's. Courtney will be having a very exciting few weeks before she graduates on June 7th. The week she graduates she will be attending Hofstra's New Student Orientation which is 3 days and 2 nights and the following week she will be taking the Amtrack train to Albany to visit her friend. Then the following weeks are graduation parties, then after that she starts working at the summer camp. I'm tired just writing about her schedule.

Brandon is sick AGAIN. He stayed home from school yesterday and went to the doctor. Another sinus infection. Yesterday was also his 16th Birthday and he made sure I took him to the DMV for his permit test. When Courtney turned 16, she had no urgency to take the test, Brandon MADE ME take him on his birthday. He got 100% - let's just hope he drives that good. I haven't taken him out in the car yet, he wants to wait until he feels better. I ordered food from TGI Friday's last night for his birthday and had cake from Cold Stone. It was quiet, but he enjoyed himself, despite not feeling well.

My hope is that this new aid will bring some much needed relief and stress-free days. Mike seems to be doing well with her and that's all I can ask for.

HBO Documentary

Yesterday, today and tomorrow, HBO is airing some very insightful, interesting and true to the core stories about families afflicted with Alzheimer's Disease. Strangely enough, this special was something we could have been a part of. About a year ago, we were notified that an "Alzheimer project" was underway and filming in NYC. We were asked to consider attending. Time being as precious as it always is, and our situation being as difficult as it is, I wasn't able to coordinate getting there with the kids. I am pleased that HBO has taken on this project, but I can honestly say that I am sad that the Early Onset aspect of the disease has yet to be addressed. I get so caught up with the commonalities of this disease, I tend to downplay just how difficult it is dealing with this disease at such a young age.

Last night, as we watched the first part of this series, they introduced us to a few patients and their families - they were all older. The youngest patient was 63. Now I KNOW there are younger families dealing with AD, I'm friendly with some of them - where were they? As difficult as it is the watch, the story MUST be told. If the general public got to see the TRUE reality of the disease, then more funding and the support for Alzheimer's Disease research may increase. No one wants to see sadness, fear and isolation - but the time has come. I need to remember that the war we fight everyday against Alzheimer's is a long and difficult one. My husband and my family are NOT like all the others. Because Early Onset Alzheimer's Disease is in the news more and more, I sometimes forget my original goal....to make people aware that this disease is not just for the old. No matter how much is presented on the disease, more needs to be presented regarding the Early Onset aspect of Alzheimer's. The disease itself is named after a doctor who first came across the illness in a 55 year old woman. Alzheimer's originated as a YOUNG ONSET illness. Somewhere along the line, it became synonimous with "old age" and "senility". While the affects of the disease are similar, no matter what the age, dealing with a husband who's forgetting himself and his family at the age of 36 is FAR MORE devastating then dealing with that same loss at age 85. I never felt comfortable saying that, because I felt it would somehow appear to trivialize what the "mature" patient goes through. But there is no denying the fact that my children have been consistently losing their father, one minute, one day, one week, one month, one year at a time, since they were 7 and 9 years old. THAT is unique and THAT is the reason why I speak out. This has been the longest, most difficult journey I believe I will ever encounter. Our life had not even started, when it came to an end. My husband is in the final stages of Alzheimer's Disease and he's only 44 (diagnosed at 36). Let us not forget, that this is definitely NOT just an old person's disease.

One Week Ago

One week ago tonight, I had to take Brandon to the ER. He was diagnosed with the "flu" - type still unknown. Then I got sick and Courtney came home from Disney sick. Yesterday was my first day back at work, and Brandon's first back at school. At any point throughout the day, coughing abounds in our house. My asthma kicked in so bad, I was reminded once again how people can die from the disease. If you don't take care of it immediately, everything will close up, there will be no way to get any air back into the lungs. I was in pretty bad shape on Tues/Wed and I called my doctor for some Prednisone. I've had so much experience with asthma, that I knew just what I needed. Thankfully, I already have a nebulizer at home, so I was able to use that. I'm still coughing so much that I keep getting headaches.

We have been walking on eggshells and literally losing layers of skin on my hands from washing so much (no seriously, my ezcema popped up on my hands from getting dried out after all the washing PLUS the stress didn't help) in order to keep the germs away from Mike. Our hospice nurse came today and called me at work to say that Mike had a low grade fever (100). I didn't want to panic without seeing Mike for myself. They decided to put Mike on Tamiflu as a precaution - that's fine with me. When I got home, he seemed fine, with no fever. As I said previously, only time will tell how thorough we have been in washing our hands. I wonder how long it will be before I will take a sigh of relief??

Hard Work

It's REALLY hard work trying to keep an infected house "clean". I have 5 cans of Lysol spray stratigically placed throughout the house, the people who are sick wear masks and I also found hand sanitizer (which has been sold-out in ALOT of stores) which I keep throughout the house. I have asked Brandon to stay in his room for most of the day and when he DOES come downstairs, it's at night, when Mike's in bed AND he must wear his mask. Everyone MUST wash their hands after doing or touching anything. Only time will tell if this has worked and I pray that it does.

Other than this very difficult job, everything else is status quo, which considereing the alternatives, I'm QUITE happy with. I am still not feeling very well myself and I'm glad that my doctor "ordered" me to stay home for another 2 days. That way, I will hope to get my rest during the day - which I DESPERATELY need.

Swine or not Swine????

I took the kids to the doctor today and I went my self also. Brandon's throat has been killing him anc Courtney has been coughing ALOT. Thankfully, neither one have strep. When I told the pediatrician about our trip to the ER and how disappointed I was that they didn't test for Swine Flu, she said the same thing that the ER doctor said......The test takes too many man hours and it would cost too much to test everyone. I went to my doctor for my cough and he diagnosed me with an upper resp. infection. He said because I had no fever and body aches, it would be safe to say it was NOT the flu - which I assume anyway (He DID tell me not to go to work the next 2 days because I have been exposed to someone who has the flu. He said the only way to contain it would be to stay away from other people). When I told him about Brandon, he said the same thing as the other 2 doctors - BUT he said that anyone diagnosed with the flu right now, "most probably" has swine flu. This is not the usual flu season and it would be ironic to get the "seasonal" flu at a time when the swine flu is going around. It amazes me that with all the craziness and upset about the swine flu, the medical profession doesn't want more exact information. It all comes down to money.

Courtney came home yesterday terribly tired and sick. She slept almost the entire day yesterday. She had a BLAST in Disney, but her body is paying for it.

We just keep praying that we can keep these germs away from Mike.

Flu at Home

Yesterday, Brandon came home from school with a 103 degress fever, chills, sore throat and body aches. I didn't want to be paranoid, but you can't help it these days. All it took was the right amount of friends to say, "Karen, you should take him to the hospital". I did. We got there about 7:30 last night. Brandon was MISERABLE. He looked the worst in the ER waiting room. By 10:30 he was seen by the doctor, and surprisingly, the doctor didn't seem too concerned about Brandon having the flu. He said because of his history with sinus issues, it was most likely a sinus infection. I asked about the flu, even if it was the "normal" flu and not the swine. He asked if Brandon was near anyone who went to Mexico. That's a stupid question, any of the kids at school could have known someone who went to Mexico. Just because someone doesn't personally know an infected individual, to me, means nothing. He finally agreed to swab Brandon for the "common flu" and of course, it came back POSITIVE. My mind went crazy. Beside feeling horrible for Brandon (they did NOT get their flu shots this year and it WILL BE THE LAST YEAR THEY DON'T), my thoughts went immediately to Mike. Brandon layed right next to him on the bed on Thursday night!!!!!

I'm also concerned about me. What happens if I get it? Beside having asthma (and the problems that can cause), how will I be able to take care of Brandon AND Mike? We are doing EVERYTHING we can to take precautions. Brandon stays up in his room and if he needs to come downstairs, he wears a mask. I wear a mask when I go into his room. When I come out I go right to the bathroom and wash my hands and use hand sanitizer. When I have to be close to Mike downstairs, I wear a different mask and I constantly wash my hands. I slept on the couch last night and I will sleep on the couch again tonight. I have to do EVERYTHING I possibly can to keep this germ from spreading.

Please pray that this is as far as it goes. I am thankful that Courtney has been in Florida and I hope by the time she comes home tomorrow, the incubation period will be over.