Thursday, November 29, 2007


Earlier this year when Mike came out of the hospital, I spent almost 3 months trying to get him into hospice. I was told by our Medicaid agency that we couldn't do that without losing some of Nathan's hours. I went to social services and even contemplated an appeal. I was physically and mentally exhausted. I gave up the fight.

As I have previously mentioned, at the end of Octber, 2007, Mike's Medicaid agency changed. I was upset when they told me his nursing services could not be continued. Today they called to tell me that there is a hospice program called "End of Life Care" that we can enroll Mike, wherein he could get the same services he has now (same hours for Nathan) PLUS nursing care and home visits from a doctor. Is it me? Am I crazy? Isn't this what I tried to do months ago and was told "NO". When I questioned the rep about this she said "apparently your previous care manager lacked this information". That's an understatement!!!!

Needless to say, I will be looking into this program. I am told it is designed for people who have 6 months or less to live, but they CAN be re-evaluated after that time for possible renewal. As with all Alzheimer patients, no one can predict the end. Mike was administered Last Rites in January and look where he is now. Still here with us.

Tuesday, November 27, 2007

Always Something

For the last 10 months, we have had a nurse come by twice a month to check on Mike. Normally, this wasn't covered, but his Medicaid agency somehow worked it out so that it was possible. The same nurse has been attending Mike for 10 months. She is wonderful and knows Mike inside and out. She has caught things in the beginning BEFORE they became a problem that could have eventually lead him to the hospital.

At the end of October, his Medicaid agency was bought out by another agency, and they do NOT find it necessary for Mike to have a nurse come twice a month to check on him. This ASTOUNDS me. It is SO MUCH CHEAPER for NYS, for us to keep Mike at home with us and out of a nursing home. You would think they would have no problem covering a nurse's visit twice a month since the alternative would cost so much more. WRONG. They are pulling Mike's nurse's visits. I am so upste because it was so comforting to know that I had someone to call to come and check on Mike - instead of having to schlep him back and forth to the doctor (which we have to do via ambulette now). I am trying to remain positive and hope that we can somehow work around this, but I'm not confident.

All I ever wanted to do was keep Mike at home. It seems I am often up against the most difficult odds and instead of agencies working WITH me, they work AGAINST me.

Thursday, November 22, 2007

Happy Thanksgiving

I really wish I could say it was a great Thanksgiving. While Mike is doing fairly "OK" and everyone else is fine, it just didn't seem like a "Happy" Thanksgiving. Mike coughed ALOT during breakfast, didn't have much lunch and ate fairly light for dinner. He was coughing a little for dinner. As usual, I worry and begin to wonder. Is this the beginning of Mike not being able to swallow....or is it that he has the cold we all had? Either choice is not good.

I wonder what Mike will be like when he can no longer swallow. Will he still be laughing and smiling the way he is now, or will he enter further into his own world and sit with an even blanker stare? Will we know when it's going to happen? We will ever be ready?

I can't say that Mike is at that stage now, but on days like today, I always get scared. It is a reminder of what lies ahead, and I don't think we will EVER be ready for it.

Monday, November 19, 2007

A Nice Respite

This past weekend, I had the chance to go out with some old friends, and I had a wonderful time.

These friends were Mike's and mine from where we met - twenty something years ago. I laughed so hard that night reminiscing about those "good old days". It was such a wonderful night and a much needed respite away from the everyday struggles of caregiving. We scheduled the dinner for after I got Mike into bed for the night. My brother stayed at our house with the kids and Mike. I went out knowing that everything should be "OK", although I was somewhat on edge because as I know very well, with Mike, anything can happen.

Another nice surprise awaited me at the restaurant. My friend Joe called a mutual friend that we hadn't seen in MANY years and she agreed to go to dinner with us. When I walked into the restaurant, she was sitting with Joe and his wife. At first I had no idea who she was, then it hit me. We had all worked together and the stories just started flowing. The only person missing was Mike, and I felt it. Of course, he was a part of many of the stories, so in actuality, he WAS with us that night.

Coming home, my mood was very light, I felt "happy". It's so amazing what a night out will do for you. But then Courtney started acting strange and I asked her what was wrong. I think she was a little insecure that I had such a good time without Mike. What she doesn't realize, is just how much I missed him. One of my dad's most memorable sayings was "Life is for the Living". After his death, I realized just how profound that saying is, and after Saturday night, I realized how important it is. Even though I missed Mike, I was still able to have a good time. Mike will ALWAYS be in my heart.

Sunday, November 11, 2007

Being Sick

One of the worst realities of being a caregiver is having to take care of a spouse when you're not feeling well yourself.

This past week, both Courtney and Brandon were sick (sore throats and Brandon's went into a sinus infection). Last night, I began to get that sore throat. I tried all I could to stay away from Mike, but sleeping in the same bed makes that difficult. I was up most of the night, trying to cover my mouth and staying as far away from Mike as possible.

Taking care of children when they are young and ill is, usually a team effort by both parents. Taking care of an ill spouse when you are sick is like flying solo. It's only you, and there are no rest periods.

Tuesday, November 6, 2007

Nathan is Back!!!!!

Nathan came back yesterday and Mike seemed pleased. Since Mike cannot talk, we often say that his facial expression speak louder than words. He gave Nathan a BIG smile yeserday. By the end of the day, he ate well (all 3 meals as he does with Nathan), drank well and Nathan even gave him a haircut. By the time I got home, Mike was quite relaxed. He slept very well.

It always amazes me just how much of a difference it makes when Nathan is not around. He and Mike have such a special bond - it's so good to see.

Meanwhile, our substitute aide Sandra called this morning to say Hi. While she may not be Nathan, she was ABSOLUTLEY wonderful with Mike and we're hoping that she can work for us again when Nathan goes away the last week in Dec.

On a different note, Mike's toe is healing well. I will have the Dr. look at it tomorrow, but both the podiatrist and Fran (our nurse) came by yesterday and said they were pleased with the way it looked.

Friday, November 2, 2007

I think we made it

Today is the last day without Nathan. In a strange turn of events, We are all going to miss the substitute aide (Sandra). She was great for Mike and lot of fun to have around. I have already askd her if she would be available for the end of December when Nathan goes to England for his daughter's wedding.

This morning I got a frantic call from my mom. She was at the house and Mike started coughing uncontrollably - she didn't know what to do. Of course, I'm at work and I feel helpless. Since Nathan was not there, and Sandra doesn't know Mike well enough, I had no idea whether this was unusual for him. Of course, my mind races and I begin to wonder, as I always do when Mike coughs - is this the part when he begins to have trouble swallowing? I can't concentrate on anything and my mind is only focused on him. Wednesday he coughed alot and was very lathargic, but yesterday he was perfectly fine. I know Mike has off days, but they were to the extreme. In between all this, he's still smiling and laughing. That's what we gauge things on. We feel if he still smiles and laughs, he's OK. I'm sure that's not a medical gauge, but it's ours.