Snowstorm

Today we got 19.4 inches of snow. Mike's aide couldn't make it in because the buses were not running. Brandon didn't have school so it was just us with Mike.

This leads me to wonder what it will be like next year when Brandon goes away to college. What will I do when we get snow like this? I won't be able to go out and shovel because there will be no one in with Mike.

Simple things like this become very complicated when you are a caregiver.

(Picture was taken this morning at approx. 8 a.m. just after the snow ended)

Rough Days

We've had some rough days the past week.
It's been two years since his last one, but on Wednesday of last week, Mike had a "S". His current home health aide had never experienced one before, and wasn't sure what was happening. Brandon happened to have been home sick that day so he knew what it was when she frantically called him down from his room. Brandon had been upstairs in his room with his door shut and the TV on when he heard Mike. He gave him some Ativan and Mike seeed to be OK for the rest of the night. This morning he showed some "warning signs", but nothing happened. As anyone who reads this blog knows, that it THE ONE THING I hate the most and it scares me to death. I'm hoping it was caused by the cough medicine the doctor prescribed for Mike that had codeine in it. I'm thinking the codeine had a counter affect on Mike's anti-"S" medicine. I don't even want to think about this. I thought we were all done with that phase.

Courtney had work tonight and Brandon was going to the movies with his friends (he was driving). I recently joined a book club on Facebook and thought I may have a quiet night to read my book. As I was finishing getting Mike into bed, Brandon called and I knew it was trouble when he sounded panicked. He was hit from behind by someone. Thank God Brandon and his friends were OK, but the back bumper of the car was ripped off, along with our left tail light. It seems that Brandon was changing lanes (from right to left) and as he was going over, the car in the left lane sped up to not let him in and he hit Brandon. Ironically, I had thought once you hit someone, you were at fault, but the PO told Brandon HE was at fault because he was switching lanes. I will have to check that out with our insurance company. Brandon was shaken up, but otherwise OK. Our 2001 Chevy Venture has really taken a beating. It's still driveable, allbeit, without a back bumper and side panel.
In that quick second, I realized just how quickly things can change. The kids driving and getting hurt is ONE of my biggest fears.

A Special Gift

I recently received a beautiful gift in the mail. Sent to my home address was an Amex gift card along with a bracelet with a little purple stone and a charm that reads: "be the change you wish to see in the world - Gandhi".
There was a handwritten note attached, with just a few words and it was signed by a smiley face. Thankfully it had a return address so I was able to send a Thank you, but no name, just someone in Pennsylvania. I have no idea who sent it to me, but I put the bracelet on that day and have not taken it off. It symbolizes so much to me. I am honored and blessed that someone I don't know thought about me in such a kind way. This is what I always hoped to do by sharing our story on both this blog and other news media...to share our experiences and struggles with Alzheimer's Disease with the hope that we just might be able to help someone else going through this. I can personally say that it helps to know that you are not alone, and I hope that by sharing our story, I am able to help someone else realize that they are not alone. My other goal remains to raise awareness, which I use every opportunity to do. I hope that by giving other people the strength, they too will speak out so that we CAN change the course of this disease. This is one of only a few diseases, that when diagnosed, the patient knows there is NO HOPE...no chance of a cure. That was the way it was years ago with AIDS and some forms of cancer. Now through research brought about by awareness, those diseases do not always mean a death sentence. Unfortunately, our loved ones never had HOPE.
I am truly humbled by the kindness and interest in our story and I pray that one day we WILL live in a world without Alzheimer's Disease.

Memories

I came across this picture not too long ago and it IMMEDIATELY brought me back to that magical time. The kids used to fight about who would play with "daddy" first. We had a storage crate that they loved sitting in and Mike would "fly" them around the living room. Brandon was still a baby, so flying him around was easy. Courtney was a older and taller so she had to squish herself into that crate, but Mike still mustered up the muscles to fly her around. He could never say no to her.

The saddest thing for me is to realize that Mike never had the chance to watch them grow up and become the young adults they are.

Without a doubt almost everytime I see a young dad with his children, my stomach turns to knots and I tear up.

(Brandon was 10 months in this picture and Courtney was 2 1/2 years - March, 1994)

What does he See?

It seems to be increasingly difficult to keep Mike "sore-free" these days. His skin is SO sensitive and his system is not very strong. Because of the sore on his bottom, we've had to keep him on his sides more often. Well it was only a matter of time, but he developed a sore on his right thigh. Thankfully the one on his bottom seems to be just about cleared up, but now we have this one. His shoulders also have the beginning of redness and he has been battling diarrhea the last few days. I think it may be C-Diff so I called hospice and they prescribed Flagyl which Mike started yesterday. So far it hasn't helped, but the nurse assured us that it takes time. Because of this, I get concerned about dehydration...it is CONSTANT juggling.
I've find myself more and more staring into Mike's eyes. I wonder what he sees, what he thinks? Sometimes at night I lay next to him and just stare.....What is it like for him? I believe he knows what's going on and who were are, but how could we know for sure. Does he ever feel lonely, scared...God I hope not. I pray each and every day that he feels safe and loved and that we can make him as comfortable as possible. What does he see?
There is so much suffering and illnesses in the world, but Alzheimer's is by far one of the most cruel. Mike can't reach out to us and tell us what's wrong; if he's scared, he can't reach out to us for comfort. Mike hasn't spoken in about 5 years. Imagine not hearing your loved one's voice in 5 years? I miss him SO MUCH and I can only pray that he knows that, because this disease took that basic emotion away from us also.

Happy New Year!

Some time around my last post, I became sick----just WHAT I need WHEN I needed it. I was sick for the entire week before Christmas, including my actual birthday. During this time, I slept on the couch so that I wouldn't infect Mike since I was not sure what I had was the same as what he had. One night in particular I was EXHAUSTED. I couldn't even get up during the night to turn him like I normally do...and wouldn't you know it, in that one night, he developed a bed sore, worse than any I have ever seen. Of course all I heard from everyone was "Don't blame yourself", "you were sick yourself", "you do the best you can", but all I know is that THE ONE NIGHT I didn't turn Mike, he developed a bad sore.
We have been battling that sore still. It's the worst I have ever seen, but his hospice nurse didn't seem phased by it. She also told me that it will look worse before it gets better, which I'm glad she told me because it is. Mike has still been coughing and sneezing out mucus and it amazes me how much can come out. I am thankful he still has the strength and knowledge to do that.
Mike seems so much thinner to me and that bothers me alot. I'm sure it didn't happen over-night, but I have only recently been aware of the bones in his shoulders, back, ribs etc.
On a happy note, my sister and her family came in for New Years to celebrate Christmas with us. As usual, their visit distracted me from my everyday struggles and I laughed so hard my head hurt. We even got my entire family to go to the movies on New Years' Day (Little Fockers) within 10 minutes - even my mom, Walter and brother went with us. We had a unique and interesting experience, but laughed all the same.
Brandon received two more acceptance letters: UCONN and Seton Hall and not just to the universities, but into their physical therapy programs. I am SO PROUD of him and excited that he will have choices to make. I wanted him to get into a few of his favorite schools so he had choices to make and wasn't "stuck" going somewhere he didn't want to be. The next few months will be even more hectic.
I wish you all a peaceful and healthy New Year.

In the photo, my niece Kristin and Mike on New Year's Day.