Nathan

When I was driving Mary (Mike's aide) to the bus stop last night, I saw Nathan. I waved to him and he seemed genuinely excited about seeing me. After seeing him I had to call him last night and it was so nice to talk to him. As I stated before, he had been a part of our family for 4 1/2 years. He has seen us at our worst and also our best. He's seen Mike through some VERY difficult times. I had trusted him to take care of the love of my life, and it was very odd to not have that constant in our lives - even though the choice was ours. I was happy to find out that Nathan is doing well and working with another man. I couldn't tell him enough how lucky they were to have him. For so long, Nathan was THE best for us. He's an excellent worker. It wasn't until recently that he hadn't been doing what I had asked for Mike. He's also getting older and has a bad back. I felt it was only a matter of time before he came to me to say that he couldn't handle Mike anymore.

I just felt so good speaking to him. He told me that he had hoped to surprise us in a few weeks with a visit. I told him that I think Mike would love it. I have NO IDEA how much Mike knows or doesn't, but I do believe he comprehends more than people think. I can't wait to see his face when his "buddy" Nathan visits.

Next week, I also hope to have Mike enrolled in hospice. If all goes as I hope, there will be much more support for Mike, me and the kids.

A Good Day

Everything has been "OK". I hate being too optimistic, as I'm always afraid of jinxing things. Courtney tells me that I can never be happy. When Mike is doing well, I get concerned about what may happen - When he's out of sorts, then obviously I'm concerned. I'm never able to just be happy. I recently started repeating that phrase, "Let Go and Let God". My dad used to say all the time, "what's the use of worrying if you can't change things anyway". As I've grown older, I realized that the statements are one in the same. God has a plan and we can't change it.

We'v been busily planning our Pre-Memory Walk Lemonade Sale and BBQ. Courtney has her friends over and they raise money for the walk through a lemonade sale. With Courtney though, it's never that easy. She has to bake also. For a few nights before the BBQ, we're up baking and wrapping up monkey bread, cookies etc. Last year we had SO MUCH left over. People were just putting money in the jar and not taking anything in return. We had to beg people to take something. Last year they raised about $200.00 in those few hours and Courtney would like to top that this year. After the sale, her friends stay for a BBQ. We can never really have their friends over (we would have no place for them to "hang out". Our basement is not finished and our attic is not heated or a/c'd), so it's nice when we have the opportunity to have this BBQ. The kids hang out outside most of the day and it keeps it quiet inside for Mike.

Today we made our new T-shirts for the walk. henley's heroes has a new look this year. We're still tie-dyed, but we each have a different picture with ourselves and Mike on the front. Courtney did an excellent designing job. For our friends, we just have the team name on the front. On the back, each person is writing "why they walk". We hope it creates the attention and awareness we're looking for.

On an end note, today Mike smiled and laughed like I haven't seen in months. His dimples showed through and my heart soared. Today was a good day.

Family Visit

We know that my nieces and nephew check our blog quite frequently. Lauren, this is for you. This picture was taken on Saturday night when "the kids" went to the fair. I guess that's evident by the smiles on their faces.

(Picture is of Courtney and her cousin Lauren on the ferris wheel.)

What a Weekend

I can't stress enough, what a welcome surprise my sister and her family's visit was. It's Sunday night and I'm sad that they're gone.

This weekend was busy and fun. Mike did well, but Saturday morning, things were a little crazy, so we had to quiet things down so he could eat his breakfast in peace. In the past, when my sister and her family would visit, Mike would often turn his head, give them a smile when they spoke to him. This visit was different. He didn't seem to have much recognition, although we did get him to smile a few times. His stares were blank. I believe my sister, brother-in-law, nieces and nephew were just happy that they got to see Mike.
Saturday, we did some errands and our guests tagged along with us. Courtney chauffered us around (they wanted to see how well she drove. She did GREAT). We did this when Mike was taking his afternoon nap so it would be quiet. While Mike was eating his dinner, my sister treated us to dinner at a local pizzeria. She looks forward to coming down and getting their pizza, because as we all know, no one can make pizza as good as New Yorkers :) After dinner, after we got Mike into bed, my BIL and brother took the "kids" to the local fair and we ended the night watching the fireworks display from our backyard.
Sunday morning we made breakfast. Courtney drove my niece (23) to the supermarket and did our grocery shopping while we cleaned up the house. My sister helped me clean and sort through the mess in the DR (many boxes are still there from when my brother moved in in May), my brother mowed and edged the lawn and my BIL did some minor repairs around the house. So not only did my sister and BIL take time from their busy schedule and spend money on a hotel for 2 nights, they came here to HELP.
The small amount of time that they were here, was prescious. I pray that Mike was aware of their presence and enjoyed it just as much as we did. We enjoyed EVERY minute of their visit and as always, my nephew had us laughing more than ever.

They Got Me !!!!!

Tonight Courtney, Brandon and I were getting Mike into bed. We had just gotten him into bed when the phone rang. My brother looked at the number and recognized the area code (610) but the name was unknown. We yelled at him to pick it up, as my sister lives in Pennsylvania (610). It WAS my sister and she told my brother to look outside. Standing there in the pouring rain was my sister. I opened the back door and there she stood, soaking wet, with her arms open wide, yelling "SURPRISE!!" She and her family came in from PA as a surprise to us :)!!!!

Needless to say, I was shocked, surprised, shaking and crying all at once. Months of emotions of "being alone" took their toll and I was SO HAPPY to see my sister and her family. I could not believe that she pulled it off without once slipping. Apparently, she wanted to tell me, but my older niece and nephew convinced her to keep it a surprise. I can honestly say that it was THE BEST surprise I've had in a L-O-N-G time. Their company is the best medicine for me right now and their support came at just the right time. The fact that they planned all of this and took time off to come and visit, is beyond words (my sister works 2 jobs and both my niece and nephew also work). I'm just glad I didn't know ahead of time because the weather was terrible (thunder, lightning and HEAVY rain).

Sometimes in life, the simplest of things can lift the spirits. Tonight I once again realized how VERY blessed I am to have such a wonderful family.

Memory Walk Donations

As many know, the kids and I, along with family and friends walk each year to help raise money for the Alzheimer Assocation's Memory Walk. If any readers of our blog want to donate to the cause, you can go here.
Search the walk for my name, and our team name "henley's heroes" will come up. From there, follow the directions. Thank you for helping us reach our goal.

Also, if you do donate, and I don't know you, please leave a comment on our blog. I've already received a donation and I don't know who the person is. I would just like to say "THANK YOU".

College Visits

This morning Courtney and I woke up at 5 a.m. to begin our day looking at colleges. Last night I had to make sure all of Mike's food/drink/meds were all prepared so that everything would be ready for him today. You can't imagine all the preparation involved in being away from the house for the entire day.

Denise (the Newsday reporter who has become our friend) went with us also. She comes from the area we were heading and she was a HUGE help being my navigator. We first went to Vassar College in Poughkeepsie. The tour began at 9:30 a.m. We left our house at 6 because we were concerned about rush hour traffic, but there was none and we arrived at 8 a.m. There was time for a quick breakfast in their small cafe. The tour was "OK", but not as informative as Fordham's. We didn't get to see things that are important to the students - dorms and cafeteria, We only got to see one classroom building. Courtney WAS pleased at the description of their communication/film courses. The tour was over at 11:00 and we decided NOT to stay for the information session. We found someplace for lunch - Yeah Olive Garden. After a leisurely lunch, we headed over to Marist College (also in Poughkeepsie and only about 10 minutes away from Vassar). That tour started at 1:30. This tour was much better and gave us much more information. The campus was beautiful as it's right on the Hudson River with the mountains right behind it. Georgeous. One of the pluses in this school, is that when the Freshman get to the campus, they have the football players and other upperclassman move in all their "stuff". The Freshman spend the day at a carnival and all their belongings will be in their room once it's over. All the hard work is done. They also have a good communications/TV/film program. As you can surmise, this is what Courtney wants to do.

On the way home we asked about her thoughts. All she wants to do is go to Fordham. She loves the campus and it's also SO close to NYC. Their communications program is also excellent.

Next week we will be seeing Manhattan College and Manhattanville College (both in NY).

This will be a difficult and stressful year for all of us. I pray things work themselves out.

Weekend Update

This weekend went fast and thankfully, with no incidents.

Yesterday Courtney and I ran errands (she drove). Then her friend came over and Courtney, her friend, Brandon and Jonathan went to see The Dark Knight.....again. It was the 2nd time for Brandon and the 5th time for Courtney. What made it somewhat different was the fact that this time they saw it in IMAX. They loved it. My brother had to help me get Mike into bed because the kids were out right at the time I need help. I didn't have the heart to tell the kids they couldn't go. My brother and I did "OK", but Courtney helped me adjust Mike later in the night.

Today Courtney went to a "tea party" with her girlfriends at one of their homes. They were all supposed to get dressed up. I think it's a novel idea and can't wait to see how Courtney liked it. Brandon's friend Jonathan (now in a soft cast) came over in the afternoon.

We got our first donation for the Alzheimer's Association's Memory Walk, thank you Gail, Charlie, Kristin, Stephen and Lauren. We particpate every year and try to increase the amount we raise with each year. Last year we hoped for $1,000.00 and we raised $1,600.00. This year we're shooting for $2,000.00. We're hopeful we can surpass that goal. I remember Mike and I had done one of the first Memory Walks at a smaller park near our home the year he was diagnosed (2001). I am thrilled to see it become a bigger event raising more money and awareness.

We walk under the team name "Henley's heroes." Here is our donation page.

News and Events

Courtney passed her road test yesterday and I am thankful. She was SO nervous, she was driving me crazy. I was so concerned about what she would be like if she failed, but thank God I never had to find out. All this means to me, is more worry, although she is really in no hurry to drive. She's not a fan.

Next week and the week after, we will be going to look at colleges. We cannot do what others normally do and go away for a few days and work in various school tours. I am trying to look at 2 colleges each day and be back home in time to get Mike into bed. The first 2 are up in Poughkeepsie (3 hours away) and we are going there next Tuesday. The following Tuesday we will be heading to Bronxville and Purchase. Courtney wants to go away to school, but for obvious reasons, she does not want to go far. She wants to know that she can come home on weekends and be home quickly if she needed to be. Of course, it's not the best way to live, but right now, it's our life.

I try not to plan anything these days because I have witnessed over and over again, how things can change with Mike on a dime. I put off these college visits for so long, but I realized that I need to take that chance and just go. It's not fair to Courtney to not do this. Of course I get concerned about "what if's", but I have to take that chance that for one day, things will continue to be OK. This morning though, my mom played into my nervousness and asked, "what would we do if something happened while you were so far away". I told her to call an ambulance and then call me. I wish she would have been more positive and not even mentioned "what if's", but she did and of course, now it's on my mind.

For much the same reasons, I have not done much with Courtney and Brandon this summer. Courtney is BEGGING me to go to Great Adventure (2 hours away) for the day, but I get concerned for all of the reasons mentioned above. It's times like these when I question myself as to whether I am doing the right thing with keeping Mike at home.

Mike's toe has been red again and he's had a low grade fever twice in the last 1 1/2 weeks. I'm not sure what's happening there, but I worry because it always seems to be something. The good news is that Mike was approved for straight Medicaid, which means that at the end of this month we will be able to put him on Hospice. All I can do is pray that Mike stays healthy and out of the hospital until then. Our goal with hospice is obvious for the long term, but for the short term, we're hoping that with their help, we can keep Mike out of the hospital as much as possible. The stress that it puts on Mike, the kids and myself is tremendous and Mike NEVER comes out of the hospital without some kind of infection/rash or illness that he didn't have going in.

That's our story for now. There's ALOT of big changes going on and I continue to pray for strength in dealing with them.

Understanding

Today I was getting ready to leave for work. I went up to Mike, like I do every morning, and gave him hugs and kisses. I asked him to please have a good day. He shook his head "no". Hmmmm , it caught me off guard, and I thought, maybe it was just a reflex. But I still addressed it and said, "why wouldn't you have a good day Mike?" He shrugged his shoulders, as if to say "I don't know".

So for the rest of the day I was quite perplexed. Was Mike's body just reacting, and his actions just happened to have been the correct responses to what I was asking him? Was he aware of what I was asking? It numbed me. What if Mike REALLY does understand??? In the beginning of this illness, he told me point blank, " Karen, everything is right up here (pointing to his head), but I just can't get it out here (pointing to his mouth)".

I am so thankful that we almost always include Mike in our conversations, but now I worry about the times we did not. Did he realize he wasn't included? Has he heard and understood each and every conversation we've had?

Who are we to know, but for today at least, his actions absolutely did go along with my comments. It gives me reason to believe that he still understands. Sometimes that's a good thing, but sometimes it's not.