An Uncertain Year

I think 2008 will be a difficult year.

This coming April, it will be 7 years since Mike's diagnosis. When he was first diagnosed, I was told the average life expectancy for Early Onset was 5-7 years. I have read articles indicating 4-5 years. Either way, it has been a long time and I fear what this year will bring for Mike...and for us.

My mom is also getting older and that is showing more and more. For so long she's been coming to the house to help with odds and ends, here and there. When the kids were little, she would watch them for me. As they got older, she would get them to school, appointments etc. Since Mike got sick, she helped with laundry and keeping track of the kids schedule. These days, she's slowing down. She has spinal stenosis in her back and for the last 2 weeks, she has had trouble walking. She refuses to give up doing the wash, as much as we fight with her to rest. The reality is, my mom is no spring chicken anymore and it is evident she will be able to do less and less to help us.

Courtney is a Junior this year. This is a difficult year for her. She will have to begin the process of looking for colleges. She's not sure what she wants to do, but she does know she wants to go to school "near" us. She mentioned the farthest she will go is NYC. The effects of the stress she is putting herself through, as well as normal 16 year old stress, is beginning to rear it's ugly head. I'm not quite sure how we will afford college, I just hope she gets some scholarships. Either way, I told her we will work it out. Oh yeah, and I've also been teaching her to drive. Now if THAT doesn't take a few years off my life, nothing else will.

Taking all of the above into consideration, I think it will be a difficult, uncertain year.

Happy Birthday Mike !

Today Mike is 43.

Mike woke up in such a good mood, which continued throughout the day. He smiled and laughed ALOT and it was SO good to see. When I think about how he spent his last birthday, it makes this one all the more special. After his breakfast, he opened his presents...actually I held his hand as I tried to get him to feel the wrapping paper. Brandon and I guided his hands as he "pulled open the paper". We sang Happy Birthday quite a few times throughout the day and each time we did, he raised his eyebrows. We bought him a Reese's Peanut Butter ice cream cake and he LOVED it. He opened his mouth real wide for it and kept looking for more. Mike always had a sweet tooth.

It was also nice that he got birthday cards from his Aunt and Uncle in Mississippi and his other Aunt and Uncle in Connecticut. I read each one to him hoping that he would understand. I think he did.

Happy Birthday Mike. I pray that you will have many more.

Another Test

For the last few months, my brother has stayed with us on and off. He is in the process of seperating from his wife (it's been 2 years now) and he lives by himself. He stayed with us when he had his shoulder surgery, so someone would be around if he needed anything. Last month, 2 weeks before Christmas, he was suspended from his job. Long story - he's worked there for 23 years and was injured on the job. He's had 2 surgeries and been out alot on worker's comp. Last month his employer decided he was taking too much "sick time" and suspended him without pay for 30 days. He had to hire an attorney and is now in the process of fighting to keep his job. Since he spends so much time at our house, he approached me about him moving in with us. The only space I have is my old bedroom, so if this did happen - we would have to share space in the bedroom because I still need a place for mine and Mike's "stuff".

My brother's seperating destroyed him financially and he has nothing to fall back on. I cannot, in good conscience, not help him. Whenever I see homeless people I would think, "don't they have ANY family". While this would be difficult for the kids and I, I can't see another answer - if in fact it comes to that. I tend to ignore alot of my brother's complaints but it's hard for Courtney and Brandon. They know how difficult our lives have been and they have a problem tolerating other people complaining when sometimes they don't see a reason for it.

Once again I am praying for strength. I know what I will do if the time comes, because after all, family is family. It will just be another test I hope we all pass.

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.