Confirmation

Today Brandon made his Confirmation. It was a beautiful sunny spring day. My sister and nephew came in from PA and they made it with 1/2 hour to spare. Even though it was beautiful outside, it WAS warm in the school's chapel, so of course, the ceremony seemed long. As I watched Brandon standing there, I remembered, like yesterday, his Christening. ....Time flies.

After the ceremony, I took everyone out to lunch at The Milleridge Inn. The last time I was there was when Mike took me there for my birthday years ago, even before we were married. It's decorated so nice during the Christmas season and since my birthday is right around there, Mike took me as a special treat. Now here I was 21 years later with my children and relatives without Mike. I thought of him all day.

When we got back to the house, Stephen and Gail were visiting with Mike and he seemed to really enjoy their company. He laughed out loud at something said and even appeared to mumble "thank you" when they left. It was magical.

Brandon made me so proud today and I was so glad he had such a wonderful day.

Special Day

Tomorrow, Brandon will be making his Confirmation. My sister and nephew will be coming in from PA. (my nephew is Brandon's sponsor). I have a picture of us (as a screensaver) on my computer from when Courtney made her Confirmation 2 years ago, and it makes me sad to see how much Mike has changed. In that picture he is standing with us, as family, laughing. Now, we will stand around him as he sits and we will be lucky if we can get that infamous smile. Even though he will not be able to attend the ceremony, we are blessed to have him share in the day with us. His presence will be missed, but I know in my heart Mike would be so proud of Brandon this day.

Never Enough Time

The last few days have been very busy. This past weekend we spent most of the time outside trying to make our house look presentable. The grass needed to be cut, the garden weeded etc. In order for me and the kids to get work done outside, so much had to be bypassed inside. It just seems like the weekends go so fast and I never have enough time to get things done. On Saturday, we do our Target shopping and on Sunday we do our grocery shopping. After grocery shopping I have to prepare all of Mike's meals for the week. Everything needs to be cooked, pureed and frozen, so all his aide has to do is heat things up each day. Years past, I would use frozen meals, but then Mike had a problem with dehydration. After reviewing the ingrediants in the frozen meals, I noticed how much sodium was in them. Every once in a while I still cheat and use them, but for the most part, Mike's meals are home made. That takes alot of time, but in the long run it's worth it. The hard part is when something has to be thrown in that's not part of the schedule like running the kids somewhere, going to a different store etc. This throws the whole weekend schedule off and something invariably gets pushed to the side.

This month is also very busy, Brandon's Confirmation (this Wed. 5/9), my mom's birthday (5/11) Mother's Day (5/13) and Brandon's birthday (5/14). Factor into that all the shopping etc that needs to be done for all of the above....UGHHHHHHHHHHHHH.

There's never enough time....for everyday errands/chores, and for life.

Family News

Courtney has applied to be a volunteer at the local hospital. Since she saw so much when Mike was a patient, she thought she would like to help out. According to her, she knows all areas of the hospital anyway. Her only concern - she will spend so much time talking to lonely patients, she won't get anything done.

Brandon is getting ready to make his Confirmation next week. My sister will be coming in with my nephew who will be his sponsor. We look forward to spending time with them.

We have been trying since February to change Mike's Medicaid around so that we can enroll him in hospice. Because AD is so unpredictable, the 6 mos. or less requirement for hospice is not really a problem. I was told that there are patients with AD on hospice for years. We are trying to get it so we can take advantage of the extra services and to try to keep Mike out of the hospital. Unfortunately, NOTHING has been accomplished since February and I am getting frustrated. Even when you want to do something beneficial, it's not easy.

Gizmo just got a haircut and it was much needed. Maybe I will try to get a picture up. He continues to be very protective of Mike and jealous of me when I sit with Mike. He wants all the attention himself.

Me, I'm getting ready for a busy May. Brandon's confirmation and birthday, my mother's birthday and Mother's Day - all within one week. As if I wasn't busy enough :).

(The picture was taken today, 5/3/07)

Evolution to Acceptance

This disease is such a long road, one in which priorities change constantly.

I remember when Mike was first diagnosed, I was selfishly upset that he couldn't drive. It may sound petty, but how many times do you look to your spouse to run a quick errand that you have no time for? Not having Mike drive was a big adjustment for the both of us.

Since Mike was often at home by himself during the week, he would look foward to getting out and running errands with us on weekends. Unfortunately, this eventually had to stop when he began his anger/agitation stage. I remember a day all too well, when we were in King Kullen getting ready to check out and he just started gettting very angry, swinging arms etc. The kids took him out to the car to relax and I quickly checked out the groceries. That was probably the last time we took him into a store.

After his 7 week stay in the hospital for medicine adjustments, he came home unable to walk or talk well. This was another big adjustment and scary for all of us. We were concerned about communicating and how we would do be able to understand his needs.

Since Mike began requiring constant supervision, I was often envious of people that could just "pack up and go" whenever they wanted to wherever they wanted. As I walked the dog at night (on our corners - just in case something happened I would be close to the house), I would look at families driving by at night and wonder where they were going - movies, out to eat, beach etc. I longed for that spontaneity.

But things happened along the way, by way of Mike being hospitalized some 7 times over 1 1/2 years. We had some close calls and it was then that I realized all the other concerns were nonsense.

Now, we all very much enjoy a nice quiet night at HOME with everyone together, happy and healthy. Being so close to losing that, we realize how important it really is. We are happy that Mike is at home, comfortable in his own home and bed surrounded by everyone he knows. After spending so many long nights at the hospital with him there at night by himself, and me at home worrying about him, it's so calming to know that he is with us, where he belongs.

Little things mean so much and I now realize that me being the only driver in the house is really no big deal.

Twitching

Twitching is a common problem with AD patients, more so in EOAD for some reason. Throughout the day and night, Mike will involuntarily jerk or twitch his arms, legs, head etc.

When Mike wakes up too soon, or with a "startle", the jerks come on more vigorously. This morning was one of those days. I'm particularly unnerved by them because he was having them frequently right before he had his Grand Mal seizure last year, so in my mind, I'm afraid that it will happen again. When this happens I rub his forehead and arm and try to relax him. After 1/2 hour this morning of constant jerks, he finally calmed down. It took me a little longer. These "episodes" come in spurts. There will be days and weeks when he doesn't have them and we love those times. Then all of a sudden, they begin. The doctors say they aren't painful to Mike and they are caused by the plaques in the brain taking over certain areas that control movement. It just breaks my heart when I see him like this.

And so begins another day...............

Always questioning, always concerned

This disease is so horrible in so many ways, but one of the most difficult to overcome is the fact that Mike cannot communicate his needs to us.

I have come to "read" Mike quite well over the years. Where he cannot communicate verbally, he often tells us things by facial expressions. The problem is, in the past, when those "normal" expressions change, there was always a problem. Therefore, whenever he may make a different sound, or sneeze one more time than usual, cough, etc., my mind goes in panic mode and I think something is wrong. It's a horrible way to live, but it has been our way of life.

For example, on Christmas morning Mike woke up and appeared fine. After he was dressed, he starting making a noise (moaning). We rushed him to the hospital and it turns out he had a collapsed lung. Now everythime I hear him make a different noise, I think "could it be his lung again". When he coughs, I think, "oh my God, could he have pneumonia?" His aides as well as the kids are constantly telling me I should relax. How does one do that? It's like I am always waiting for the rug to be pulled out from under me.

Our mantra for Mike has always been, HAPPY, HEALTHY and AT HOME. If he can stay this way, we will be satisfied.