Gotta Love that Smile

This picture was taken about a week ago. Lately, Mike has been smiling and laughing ALOT and we're loving every minute of it. That smile is all I need to make it through a crazy day at work.

That's What Friends are For....

Today, our friends Pat and Joe, came over for a visit. Although we hadn't seen them in a long time, when they came over, it felt like we've been in touch for years - a sure sign of a good friend. I was trying to "read" Mike to see whether there was any recognition, but I couldn't. There were some raised eyebrows and smiles and I really hope Mike knew they were there. I had a good time visiting with them, but got very sad after they left. This disease is so alienating, and you don't realize how much you don't have, until you get a little taste of "normal". Most people would take it for granted to go out with friends and reminisce. While Mike was eating lunch, we headed to the backyard and talked. It was such a simple thing, but something I enjoyed immensely. Thanks to my dear friend Pat, he once again brought up my mishap with the skunk on our way home from visiting a friend in Rhode Island. I don't think he'll EVER let that go. It was really good to laugh again. After Pat and Joe left, I felt sad. Sad that Mike couldn't be a part of our conversation, sad because it felt like yesterday when we were all so young with no worries. Life happens - but if you're lucky, you will have friends who will always be there for you, NO MATTER how long it's been since you've seen them.

If you know anyone suffering from some sort of illness, please, PLEASE, go and visit. It will mean the world to them.

(Picture taken Sat. 9/22/07 - Pat, Mike and Joe)

Memory Walk Success

I am happy to report that as a team,
"henley's
heroes" raised $1,620.00 for the Alzheimer's Association's Memory Walk. The day began as a rainy, cold day, but as we began our second turn around the Restoration, the blue sky came through and it was sunny for the rest of the day. Courtney and her friends and Brandon and his friend had a great time. I don't think their friends really understood what a wonderful thing they were doing, because they were having so much fun. I was proud of everyone that walked with us and the support that we received.

The last few days I've been once again drawn to the reality of this disease. After Mike's hospitalizations earlier this year, I was always on edge for everything that I thought would be a problem. I became glued to the Alzheimer Association's Message Boards and read every post by anyone experiencing "end of life" issues for their loved one. After all, Mike had been given Last Rites back then and I had no idea what to expect. It was Courtney that finally got me to stop going to the Boards because I began to "imagine" things were happening with Mike. In the process though, I learned what happens to patients as they near the end. Right now, Mike is having issues with "glob" in his throat. He can still cough it up and clear his throat, but I begin to go into panic mode and worry about what will happen next.

This disease is ALWAYS UNPREDITABLE and never has a term such as roller coaster ever been closer to the truth. The families of Alzheimer patients are CONSTANTLY wondering what will be around the next turn. We can only live in the present and it becomes very difficult to plan anything for the future.

Memory Walk Events

This coming Saturday, we will be walking for the 3rd time in the Alzheimer Association's Memory Walk. My goal was to raise $1,000.00 (we raised $650.00 last year). To date, we have $1,300.00. I am THRILLED.

Courtney recruited her friends to walk with us this year. They came by on Saturday and tie-dyed shirts so we will all have our official team shirt. We decided on the tie-dye theme a few years ago because we thought it was appropriate for Mike. He's young and he should be represented as such. Before we tie-dyed, Courtney and her friend set up a "Refreshment Stand" on our corner to raise more money. I was hoping to raise $100.00. Much to our surprise, people were very generous and we raised $258.00. After all that hard work, I BBQ'd for Courtney and her friends. For dessert, we had cookies, brownies and a surprise birthday cake for Courtney's 16th birthday. It was 9/5 and I felt so bad that I couldn't give her a party that she deserved. She always wanted a cake with her picture on it, and that's what she got. She was excited and surprised and I was happy that her friends were there to enjoy the moment with her.

Pray for good weather on Saturday. Instead of the 7 people that walked last year, this year we will have close to 20. We wanted to make a statement and we hope we succeed.

I hope to walk every year until a cure is found. Thank you to all of those that helped us exceed our goal. Your love and support is what keeps us strong.

Time

It's hard to believe that next week Brandon will start his orientation for 9th grade. Where does time go?

Courtney was 9 and Brandon was 7 when Mike was diagnosed. They are now 14 and 15. Their entire life has been dealing with Alzheimer's Disease. I will ALWAYS wonder if I did the right thing in keeping Mike at home with us. Did I take too much time and attention away from the kids? Could I have done more, had Mike's 24/7 care not been in my hands? I question this always, but the kids always tell me they would have had it no other way.

We have been so busy around the house this summer, I felt like I haven't seen Mike alot. We have spent many hours in the back and front yard, trying to make our property not only look nice, but REALY nice. We all need something to feel good about. We are also painting Courtney's room (Brandon's was re-done earlier this year). Actually, Courtney has so far done all the priming on her own and I'm VERY proud of her. We have also been blessed to receive a "gift" of carpeting, but before it can be installed, we've had to rip out the existing carpeting. My hands have the bruises and cuts to prove it. It very difficult to remove carpeting from stairs :(

I found out today that our weekend aide will not be in on Sunday and we will have someone else for only 1/2 the time. It's supposed to be Mike's aide from 2 years ago and if he does show up, it will be interesting to see Mike's reaction to him. Because the aide will only be working until 2pm (instead of to 7pm) I will have to care for Mike. Of course it will be difficult because the weekend is the only time I have to do everything, but at the same time, it will be my much needed re-connection with Mike. Since I feel I haven't been spending much time with him these past weeks, it will give me the one on one time I need. I hope he will enjoy it as much as I do.

Summer Update

I am relieved to say that all remains "status quo" with Mike. I recently took a week to do some day trips with the kids. We went to Splish Splash (a water park), into NYC, to the beach, to the movies and lunch and got their uniforms and books and supplies for school. All pretty everyday things, but we all enjoyed this much needed time away. Each time we went somewhere, I would have an overwhleming sense of sadness. Mike should have been there with us. He LOVED the water and the city. It just isn't fair that he could not be a part of our lives doing the things I know he loves. I very rarely say that things are "unfair" because who am I to think I'm above everyone else? Who would this disease be fair to? Exactly. But recently, I have been having a difficult time emotionally. I guess as the kids are getting older, and I see the young adults they have become, my heart aches that Mike does not fully understand. His children were his life and he would have done anything for them. They were his VERY FIRST concern when he was diagnosed. Now here they are in High School, maturing into beautiful, caring human beings, and he cannot appreciate all that they are. I pray that he knows, somehow, how proud he would be of them. They have not let him down, and for that I couldn't be prouder.

We are gearing up for our annual walk in the Alzheimer Association's Memory Walk which will be in Sept. Courtney has recruited a bunch of her friends to walk with us so we can make a bigger statement. We hope to match our goal of $1,000.00.

That Special Smile

This picture was taken of Mike 2 weeks ago. It was a beautiful sunny Saturday and we decided to take him outside. It's somewhat of a project that requires perfect timing - it has to be in between meals, when he's awake, when it's nice outside (not too hot, not too cold). It was a perfect day and we took advantage. It was evident by his smile that he loved it also.

It's amazing what we all take for granted.

We appreciate EVERY smile we get from him. His smile lights up the room, wherever he may be.

Everyday is a gift that we truly appreciate.