Friday, June 25, 2010

Dream Montage

I love dreams, always have. I even took a psychology of dreams class in college. I can only assume that I enjoy my dreams more now, because, let's face it, I don't get a chance to do much in "real life". I remember dreams very vividly, even those that I had years ago. I've always said that if I were an artist, I could make a fortune selling a book of their illustrations. I can usually always figure out what my dreams mean, even the most abstract. Last night, I needed no coaxing. My dreams seemed to come all in a row -all with the same subject matter.

#1 - Mike went out for a walk (in the neighborhood I grew up in) and he got lost. After not returning home for some time, I went out looking for him. As I turned the corner, I saw Mike, talking to a young person who seemed to be trying to help him find his way. I called Mike's name and he turned around - came running to me crying, and said, "I'm so glad to see you".
#2 - I had a good friend all throughout high school until Mike was diagnosed. She just "couldn't handle" it. In last night's dream I was at home with my "friend" along with a few of her other
friends (who I didn't know). They wanted to go out, but Mike was lying on the couch and he needed my help. Her other friends wanted to go somewhere, and were angry at me because I was not able to go. I was angry that they didn't understand WHY Mike needed my help - "how could they be so blind?" One in particular was VERY nasty, and my "friend" told her off. My "friend" wound up staying with me. At the end of the dream, I REALLY yelled at this woman. I told her that she was like so many other people who didn't understand JUST how hard this disease was. It felt so good for me to get it out AND have the support of my "friend".
#3 - I joined the Navy and they were having an induction ceremony. I needed to find the right uniform and the family had to register for events. My sister and her family with with me, but Mike and Brandon were delayed. They needed more time to get ready, so my BIL told us to go ahead and they would catch up. They never showed up and right before the ceremony, I got a call from Brandon. He sounded MUCH YOUNGER than he does now and he said, "dad's lost". I panicked because the complex where the ceremony was happening was very big, but I immediately started to go looking for him. Brandon was still on the phone and he said, "no mom, dad is gone". With that I woke up.

The theme is all the same, but I have never before had so many montages of Mike all in one night. Apparently it's clear what has been on my mind.

Wednesday, June 16, 2010


Mike's aide is out today and I'm here at work. I NEVER do this, but I MUST be at work because of the craziness this month (first time homebuyer's have to close by 6/30 to receive their $8,000.00 credit). Courtney bravely said she would stay home with the sub to help out. It's 11:30 and I just called home. Mike has eaten hardly anything and only drank 1 1/2 cups of juice. With his regular aide he is normally fiished with breakfast, had 3 cups of juice and getting ready for his nap. This sub doesn't seem to know what she is doing, and Courtney took over feeding Mike to make sure he got SOMETHING into him.
And here lies one of my MAJOR issues with Home Health Agencies. They continue to send people that have no experience. This woman asked Courtney if she knew how the work the hoyer because she has never used one before. When I asked her if she had been trained, she said "yes, but only once and I never had to do it again" (she told us that she normally works in an assisted living facility where patients are - for the most part - independant). The problem is the agencies cannot get anyone good, because beside the bad pay, they offer no benefits. In fact, our aide is out today because she is attending an orientation for another agency so she can work at night. That agency DOES offer medical benefits along with personal and sick days, which is mostly unheard of in this profession. I am quite concerned that this second job will interfer with her care for Mike or that she will leave and work for them instead of us, but for now, there's nothing I can do.
This issue is something I addressed in Washington. In order for us to care for our loved ones at home, we need experienced and well trained home health aides. They will not get qualified workers unless the agencies offer decent salaries as well as benefits.
For today I will pray that Mike's lack of nutrition and fluids will not cause a major problem. I hate being in this situation. I need to be here at work in order to support my family, but I also need to be at home to care for Mike. God Bless Courtney and Brandon for all their help.

Friday, June 11, 2010

Walk On...

When you walk through a storm, keep your head up high, and don't be afraid of the dark.
At the end of the storm,
is a golden sky and the sweet silver song of the lark,
Walk on through the wind,
Walk on through the rain
Though your dreams be tossed and blown.
Walk on, walk on with hope in your heart and you'll never walk alone.....
You'll never walk alone................

Wednesday, June 9, 2010


Yesterday the kids and I went to our Telecare studio and filmed another portion for the Family Comes First series we were asked to take part in. The producer etc came to our house a few months ago to film, but yesterday we went to them. It was pretty much the same questions as we're always asked, and I will continue speaking about this horrific disease for as long as anyone will listen. I look forward to seeing the final show which they tell me should air around October/November. As always, I left there drained, for even though I've spoken about our lives before, it's always emotional bringing up the past.
Tonight my niece will be coming to NY to stay with us for an extended weekend. Courtney and Kristin will be going to a concert in the city tomorrow(which is a birthday present for my niece). This will be my niece's first foray to NY on her own, and for that I am proud of her. Hopefully it will give her the confidence she needs so she will realize she CAN do this on her own. I know Mike will enjoy her visit, as she is the one niece he remembers the most from our years of babysitting.
Mike is doing OK, thankfully nothing has changed.
Brandon is finishing up his junior year..YIKES....he'll be a senior in September.
Hopefully, this summer I will be able to take a day here and there to spend with the kids before they don't want to be seen with thier mom anymore.

Tuesday, June 1, 2010

Hard Work

This past week has once again proven to be very hectic. Courtney flew off to Florida with 4 of her friends to go to The Wizarding World of Harry Potter in Universal Studios. She has grown up with Harry Potter and has watched the progress of this park for years. Getting her ready and getting her there took alot of time. Sunday we had another substitute aide who really didn't do much. The past few weeks we have been lucky, but of course, the one weekend I REALLY needed the help the most, they sent someone who just finished the training program.
Mike has been "OK". He has his days, like all of us. Some days he's congested/gurgling, some days he's not. If he is, we need to stay on top of it with the nebulizer (breathing treatments) and extra chest PT to insure that he coughs up whatever is in his throat. If he doesn't, then it leads to a fever and even more vigilance in pounding his chest. We do everything we need to do in order to keep anything down there from turning to pneumonia. He also tends to be developing bed sores more easily than in the past. We also need to stay on top of this, by covering them with "Duoderm" which is s product like a second skin. It covers, cushions and protects the sore from opening up, which is something we REALLY don't want.

This is why I feel good about what I do. Knowing how vigilant we are in his care, when Mike's time comes, I KNOW it will be because it's "his time", and not for the lack of care. There will be a time when no matter what we do, it will not be good enough, but I will know in my heart and soul that I did all I could. I will have no regrets and I will never have to ponder the "what if's". Mike is an amazing man who inspires and teaches us everyday. When he gets too tired, we will know.