Wednesday, June 29, 2011

What's New With Us

So, since the last post....
Courtney went to the dentist the next day and was told she had a wicked cavity - something unknown to both my kids. The dentist assured her it was because it was her last tooth in the back and she couldn't brush it well.. He cleaned out the decay and put medication in it with a temporary filling on top. He explained that this should last her the 5 weeks she will be away in England. When she returns, he will fill it. (I'm not sure if I had mentioned that Courtney will be studying abroad in the U.K for 5 weeks, courtesy of a loan from Mike's Uncle. He offered years ago in case she ever had the opportunity, so when it came up, we took him up on the offer. She will be studying the films of Alfred Hitchcock. She is a nervous flyer and is anxious about being away from all of us, especially Mike for such a long period of time. I truly hope she takes advantage of this wonderful experience and doesn't worry too much). Courtney leaves next Wed. 7/6 and there's so much to still get done.
Two of Mike's sores seem to be healing and Courtney and Elaine are very proud - as they should be. They have been so diligent in caring for them. They can't wait to show Mike's hospice nurse, but she seems to have disappeared. She went on vacation for one week, then we were told (in secret) that she was hospitalized, but it's now been 4 weeks and still no word. We have a substitute nurse coming who Courtney seems to really like.
I was able to get Courtney and Brandon a used car (1991 Ford Probe) from a woman I met through Facebook after our story appeared in Newsday. My heart breaks for her because she just lost her 23 year old son to Pulmonary Hypertension and her mom passed shortly before him. Her surviving son inherited his grandmother's car, so we purchased his car for a VERY reasonable amount. I'm glad the kids have their own transportation, although I am nervous about the fact that this car doesn't have air bags. It's weird getting used to them going here and there "just like that" because they can, although I am, admittedly so, still nervous about them driving on the parkway. Almost every day there's another story about another fatality.
Mike's aide, Elaine is still with us. I'm not sure what her rumbling that day was about, and it makes me nervous about what could happen in the future.
Mike's Sunday aide, a lovely woman named Blanca, will be going away for a month to visit her family in El Salvador. We will miss her terribly! I am happy for her because he hasn't been "home" in two years, but she helps us so much and her absence will be missed. It doesn't help that she will be away for almost the same time as Courtney. You'd better believe that we'll be celebrating when they both get back!!

Sunday, June 19, 2011

Father's Day 2011

Father's Day is always bittersweet. Mike is physically here with us, but that's it. How do you
"celebrate" the day? What do you buy someone who is practically bed bound? We can't take Mike out to dinner, or BBQ for him. Our day was very subdued. Courtney and I ran to the supermarket, but the rest of the day we just stayed home. We made Mike a T-shirt with the most recent picture of all of us and wrote on it "Happy Father's Day". We read him our cards and basically stayed close to him for the day.
Staying home was somewhat productive. Courtney and I had a heart to heart about college. She may be making some changes, and I helped her sort out the process and weigh the pro's and con's. I made MY DAD'S famous homemade potato salad in his memory - and it was enjoyed by all.

Right after the kids went up to bed, Brandon came back down and asked if he could talk to me - by now it's about 11:30 p.m. We proceeded to talk (or should I say cry) for the next hour. He broke my heart as he expressed to me his sadness at feeling like he never got to know his dad. I have a picture of him and Mike on the fridge at a Yankee game (before Mike got sick), and Brandon tells me when he looks at it, he's comforted by the fact that it's clear he enjoyed his time with Mike. Remember, my children were only 7 & 9 when Mike was diagnosed. Think about how much you can remember before that time in your life. Not much, so beside not having his dad around during his teen years, he doesn't even remember him when he was younger. As a parent, it broke my heart that I couldn't fix the situation. He's also very concerned that something will happen to Mike when he goes away to school. No child should ever have to worry about these things!

I lost alot of sleep last night as the last 10 years replayed in my mind. We all lost out on SO MUCH. When I woke up, I was tired and emotional. Then, after she ate breakfast, Courtney felt her one tooth chip. It's a molar or wisdom tooth, not sure which, but she panicked (this after we spent one night discussing the common denominator in Young Onset Alzheimer's patients being bad teeth). I tried to calm her fears, but she is beside herself. The fear of the unknown is only part of it, she doesn't want to deal with the pain if they have to pull it. Then right after this happened and I was ready to walk out the door, Mike's aide proceeds to tell me that she's not sure what's she doing, because the home health agency she works for does not give her sick time. Everytime she goes to the doctor (which has been many recently) she loses time from work - which she can't afford. SO, does this mean she may leave us?

As I walk out my door to work, I think HAPPY MONDAY! How many other woman deal with these three potentially HUGE issues before they leave for the day? How am I supposed to concentrate once I get to work?

Deep day at a, one hour at a time.

The picture was taken of Mike this morning. Each day I wake up, this is what I see - Mike's face, a palm cross and the "footprints" poem.

Thursday, June 16, 2011

Perfect Analogy

This week has been a particularly difficult week for me. It's been emotional and challenging. I felt like I was a fish swimming against the tide. I struggled to go forward, but with each attempt, I kept getting pulled under.

I was speaking to our social worker today and broke down as she was trying to help me through a problem. She asked me if I watched cartoons. I was never a cartoon person, but Mike was and I've seen the classics over the years. She asked if I ever saw the Bugs Bunny episode where he is sleep walking in the construction zone. He would walk a little bit and just as it seemed as if he was about to fall, a plank of wood would appear and then another and another. He walked until he got to the end of one, and then another appeared. He never fell, he remained standing while being saved by the planks of wood.

She told me that I was Bugs Bunny. I have a guardian angel who always seems to be there for me with a plank of wood just as I needed it.

Simple, yet surprisingly appropriate.....

What's Up Doc!

Wednesday, June 15, 2011

My Dear Friend Betsy

Today I went to visit my friend Betsy. To say it was an emotional visit would be an understatement. I did all I could to stay strong and not cry, but three times I couldn't help it. Once when I saw her (the nurse had wheeled her away so thankfully she didn't see me cry), the second when she read the card I gave her and SHE started crying, and lastly, when she played inspirational music on her iPod.
I met Betsy years ago, when our children went to the same school. She was the mom who headed up all the fundraisers, she was a den mother and extremely involved in both the Boy Scouts and our church. In fact for the longest time, whenever I mentioned Betsy's name to my mom, she would say, "oh yeah, she's the tall lady in the Dr. Seuss hat" (her ploy in grabbing family's attention during fund raising events).

When Mike was diagnosed, she stepped into high gear. She got all the moms together from the school and made sure we had dinner delivered once a week (our Angel Dinners), and as her boys got older, they went to a different Catholic school which had a service club that helped families with extenuating circumstances. She made arrangements for our living room to be painted. Throughout the years, I would get "Thinking of You" cards from her giving me hope and inspiration. One night her and her boys showed up at my home with what looked like a huge scarf. She hand crocheted us a "prayer shawl" to wrap around all of us so we could pray together. Even after she became ill, her husband delivered food to us and when I asked why, he said, "You know Betsy, she's happy when she's helping others".

Yes, that's Betsy.

A few years ago, she was diagnosed with PLS - a slow progressing "cousin" of ALS. Each time I saw her, I noticed her decline. First, her trouble walking, then talking. Last summer she fell and broker her leg and that was it. Since then her decline has been even more rapid and on Memorial Day Weekend she sent an e-mail to all her friends informing us that her PLS had become full blown ALS and her time was limited. In the e-mail she said she was going to use her good china every day and not waste a moment. Even in relating such heartbreaking news, she remained true to her faith.

Two weeks ago I asked if Courtney and I could go and visit her today, because I had a 1/2 day at work. We'd bring dinner (which she needed pureed, but that was OK because I am all too familiar with that), a funny movie to watch and something sweet for dessert. On Monday, she e-mailed me and told me she was in an in-patient hospice facility because her husband was called away on business and she had to cancel today. I asked where she was, and although the hospice was 45 min-1 hour away, I decided I was still going, to visit her.

And here I am, drained from an emotional day. As I was leaving I began questioning everything. Mike was a person who would give the shirt off his back for anyone. Betsy was the same type person, yet here they both are prisoners in their own bodies. I work with an attorney who wishes that all his annoying clients get stomach cancer, and despite his "kind words", he has a boat, house in Vermont and vacations in Tahiti. How do I wrap my mind around this - how is this justified?

I have no answers now, but I know that one day we'll find them.

Tuesday, June 14, 2011

Bed Sores...

Mike is still fighting those bedsores. The one on his bottom isn't so bad, but the one on his shoulder along with one on his hip seem to have gotten worse. The hospice nurse visited yesterday (actually it was a substitute nurse because our regular nurse is out sick), but I had to call her back today because the sores looked like they got deeper overnight. As much as I HATE looking at them, I felt like I needed to see what Mike's aide was concerned about. The shoulder has a hole in it that looks like it goes deep - the same with the one on his hip.
The nurse came today and called the hospice doctor because she felt they warranted a visit from wound care. Our hospice doctor said it wasn't necessary and at this point in time, there's nothing more they can do. What does this mean? Does this mean they've given up on Mike?
I know that Mike's nutrition has slowed down dramatically and he has lost alot of weight, but the fact that they don't feel they should even TRY to have the sores cleaned out better than we can do, is unsettling. What's the harm in trying? Maybe if they were cleaned out, Mike may even feel more comfortable - and isn't that the goal of hospice? Even if they cannot cure someone, aren't they supposed to make them comfortable? This is the second hospice agency we've hired and we just cannot seem to find one that supports our needs.
Meanwhile, Courtney gets upset because she throws around "I told you so". She has feared hospice from day one because of this very reason.
A friend of ours was recently placed on hospice, and I will be visiting her tomorrow. She had been an angel to us on MANY occasions and she was diagnosed a few years ago with PLS (A "cousin" to ALS that was supposed to progress slower). Well, she now has full blown ALS and her time is limited. I hope and pray that the hospice her family has hired is caring for her for way they should.
So much sadness lately.

Monday, June 6, 2011

Maria Shriver Blog Post

Recently, I was asked to write a blog piece for and it got a VERY very good response. They've asked me to write again. I don't know how frequently it will be, but feel free to check the website. You can view the post here, and there is also a link in the "Links" section on the side of the blog.

I was both excited and humbled to be asked to do this, and it's just another way to raise more awareness.