Happy New Year........

Wow, what a year it has been! We made it through Christmas without any emergencies and we hope our New Year will be the same. When I think back as to how we started off last year, I am THRILLED that we are all still together this New Years.

Recently, a few people have made some comments to me which I know they meant in a positive way. One said, "We can't believe that Mike has hung on for this long" and when I told someone that Mike was well and still at home I got, "Gee, you must be doing something right, for him to still be here". In response to both people I said, "Yes, Mike's doctors have told me that we take GREAT care of him and it shows in his health". Realistically, we can't control everything, but because of our love and vigilance, Mike has pulled through some tough times. That is something I take great pride in.

A friend of mine told me last year, when Mike was not doing well, "Karen, at the end of the day you can honestly say that you did EVERYTHING you could for Mike. You will have no regrets". That simple statement has helped me through many tough times. I know I have exhausted myself taking care of Mike and making sure he's well taken care of. I know when the time comes, it will be because God's will. It will not be for the lack of our love or care - it will just "be time".

Each day we have with Mike is a gift, in fact we have that saying in our front hallway - Every day is a Gift. We have been blessed in so many ways and it is my honor to take care of Mike. Courtney and Brandon have learned such valuable lessons in life, lessons that will make them compassionate and loving adults. All our lives are richer in faith.

As I look back to where we were last year, I am very thankful. At that time, I didn't think Mike would still be with us. We were given another year, something many people aren't lucky enough to have. One day at a time. Another gift to appreciate.

A Happy, Healthy and Blessed New Year to Everyone............

Merry Christmas To All....

I just wanted to wish all of our friends and family a wonderful Christmas and a healthy and joyous New Year.

We have been so blessed through the years with the love and support of so many people, we could never have made it this far without all of you. Your love and support, no matter how small or insignificant to you, has made an impact on us that we will always remember.

We also want to wish all the other Alzheimer families strength, and wonderful memories to treasure this holiday season. I will once again pray that the coming year brings breakthroughs in research so this hideous disease will never hurt another family again.

Our love to all.................

Hugs

Hugs are one of the things I miss the most from Mike.

Getting hugs from my children, friends, co-workers etc. are all wonderful and give me the strength sometimes when I need it. But we all know that there's NOTHING like getting a hug from your husband/wife. You have a connection with that person that cannot be shared with another and a hug from them gives you an emotional uplift and strength that can't be compared to any other. I hug Mike all the time. He cannot communicate verbally, so I am always connecting through touch. I pray that he feels my love and support through my hugs.

I miss getting a hug like that. I miss that intimacy, the comfort and protection that can only come from being held by the one you love.

Lessons Learned - Life is Funny

Last year around Christmas time, we were EXTREMELY BLESSED to have some financial help from some guardian angels at my husband's job. The outpouring of support was almost too much for me to accept. So in short, last year we were OK financially. Sadly though, on Christmas morning, Mike was rushed to the hospital with a collapsed lung. He spent the next month in the hopsital, at times touch and go. I was "OK" fiancially, but a mess emotionally.

This year, it is the opposite. To date, Mike's health has been steady (I won't say anymore for fear of jinxing). His mood has been great, so emotionally we are VERY STRONG this year. Financially, I'm having a tough time. It's been a difficult year and I'm feeling it more now around Christmas time.

I need to keep reminding myself of what's more important. Last year, while I didn't have to worry about my bills for a while, I was out of my mind with worry about Mike. This year, I am more relaxed about Mike, but concerned about our bills. I wonder if there will ever be a time when I can relax about BOTH.

Sorry for being a "downer", but this IS the reality of dealing with a horrific disease like Alzheimer's at such a young age, with 2 young children to care for, and a home to run.

Unbelievable

Earlier this year when Mike came out of the hospital, I spent almost 3 months trying to get him into hospice. I was told by our Medicaid agency that we couldn't do that without losing some of Nathan's hours. I went to social services and even contemplated an appeal. I was physically and mentally exhausted. I gave up the fight.

As I have previously mentioned, at the end of Octber, 2007, Mike's Medicaid agency changed. I was upset when they told me his nursing services could not be continued. Today they called to tell me that there is a hospice program called "End of Life Care" that we can enroll Mike, wherein he could get the same services he has now (same hours for Nathan) PLUS nursing care and home visits from a doctor. Is it me? Am I crazy? Isn't this what I tried to do months ago and was told "NO". When I questioned the rep about this she said "apparently your previous care manager lacked this information". That's an understatement!!!!

Needless to say, I will be looking into this program. I am told it is designed for people who have 6 months or less to live, but they CAN be re-evaluated after that time for possible renewal. As with all Alzheimer patients, no one can predict the end. Mike was administered Last Rites in January and look where he is now. Still here with us.

Always Something

For the last 10 months, we have had a nurse come by twice a month to check on Mike. Normally, this wasn't covered, but his Medicaid agency somehow worked it out so that it was possible. The same nurse has been attending Mike for 10 months. She is wonderful and knows Mike inside and out. She has caught things in the beginning BEFORE they became a problem that could have eventually lead him to the hospital.

At the end of October, his Medicaid agency was bought out by another agency, and they do NOT find it necessary for Mike to have a nurse come twice a month to check on him. This ASTOUNDS me. It is SO MUCH CHEAPER for NYS, for us to keep Mike at home with us and out of a nursing home. You would think they would have no problem covering a nurse's visit twice a month since the alternative would cost so much more. WRONG. They are pulling Mike's nurse's visits. I am so upste because it was so comforting to know that I had someone to call to come and check on Mike - instead of having to schlep him back and forth to the doctor (which we have to do via ambulette now). I am trying to remain positive and hope that we can somehow work around this, but I'm not confident.

All I ever wanted to do was keep Mike at home. It seems I am often up against the most difficult odds and instead of agencies working WITH me, they work AGAINST me.

Happy Thanksgiving

I really wish I could say it was a great Thanksgiving. While Mike is doing fairly "OK" and everyone else is fine, it just didn't seem like a "Happy" Thanksgiving. Mike coughed ALOT during breakfast, didn't have much lunch and ate fairly light for dinner. He was coughing a little for dinner. As usual, I worry and begin to wonder. Is this the beginning of Mike not being able to swallow....or is it that he has the cold we all had? Either choice is not good.

I wonder what Mike will be like when he can no longer swallow. Will he still be laughing and smiling the way he is now, or will he enter further into his own world and sit with an even blanker stare? Will we know when it's going to happen? We will ever be ready?

I can't say that Mike is at that stage now, but on days like today, I always get scared. It is a reminder of what lies ahead, and I don't think we will EVER be ready for it.