Tuesday, September 20, 2011


Too much going on at once.
Brandon's tooth is worse than they originally thought. It's cracked in half under his gum line, so now begins the careful routine of keeping the area clean. If anything gets lodged in between the crack, infection can set in..root canal needed...then despite of it all, he may lose the tooth. Add that to Brandon's already burdened shoulders and he's beginning to break down. Mike, heavy school load, trying to find his way around college (not literally) and now an injury, and he's understandably so, overwhelmed. He's questioning his ability to continue with his major.
Mike's sores on his sides seem like they're improving, but the one on his bottom looks like it's getting worse..fast. It breaks my heart to hear him moan sometimes as we clean it.
Brandon was in a minor car accident in January and we were recently served with court papers indicating that we are being sued by the occupant in the other car (the one that sped up so he couldn't merge therefor resulting in the accident). The night of the accident there was no ambulance and there was no indication in the police report of any injuries so this came as a HUGE shock. This is also on Brandon's mind, since he was the one driving at the time.
Mike's regular aide is out yesterday, today and tomorrow, so it's more running back and forth for me during the day to help the substitute get Mike in and out of bed, all the while worrying how Mike is responding to a different person at home with him.
In the last 4 days, I have had an average of 3-4 hours a sleep each night. It's all beginning to wear on me and I'm having a difficult time seeing the light at the end of the tunnel.

Sunday, September 18, 2011

Late Night Call

Mike is still holding his own. One of his sores on his shoulder FINALLY seems to have healed, although the one on his bottom looks like it got worse. There are even moments when it sounds as though Mike is moaning. I hate that. He's been OK with Tylenol for now.
We had a surprise visit from Tom and Noelle. Tom comes by all the time, but it was such a treat to see Noelle also. They were out enjoying a day just the two of them and they stopped by on their travels just to say "HI". That's exactly what friendship is about.
Brandon called about an hour ago to tell me he was heading to the Health Center at school. Seems as though his friend was quite animated in telling a story and Brandon's face happened to be in the way. Brandon was at first concerned about his nose, then realized that his front left tooth was pushed back at a 45 degree angle. YIKES!!! The nurse at the school couldn't do anything, so they sent him to the ER where they have emergency dental staff on call. Hopefully they will just put it back in place and it will heal.
Never a dull moment, but thankful it wasn't worse!

Wednesday, September 14, 2011


Thank you Kathy for asking, it's been so tiring I forgot to write on the blog (I posted on FaceBook).
Mike came home last Friday. The entire weekend was crazy with doctors, nurses, social workers and priests coming over - all routine for admitting a patient to Hospice. I forgot they had to treat this as a new admit and we had to do everything all over again. Then the Walk was Saturday, which made it even more crazy.
Since Mike has been home he's been up quite a few nights with a cough. It's a productive cough, and he tries so hard to get stuff out, but he can never quite get it up. I mentioned it to his nurse and she told me to just continue using the nebulizer and oxygen. She did confirm a slight congestion in his upper airways, but didn't prescribe anything right now. The two of us have had quite a few nights with little sleep, which lead Mike to have an "S" yesterday morning. He's been getting those a little more frequently than in the past - which I HATE!!! I would say it's been happening at least twice a month for about 6 months now. They aren't big, but "S's" nonetheless. Infection and lack of sleep can usually bring those on, we'll wait and see. If nothing changes, the doctor may have to increase the dose of the medicine Mike takes for them.
Brandon is back at school, and from what I hear from him, he's loving it! Courtney started classes also and is thrilled she will begin working with the cameras and filming actual short movies this year. Finally....she gets to do the hands on filming she's wanted for years. She also started her screenwriting class, so if anyone has any good ideas, send them our way :)!
Thank you again to everyone for your prayers. They keep us strong.

Saturday, September 10, 2011

Walk to End Alzheimer's

Today was our Long Island Chapter's Walk to End Alzheimer's.
Courtney walked with her friends.
Brandon walked with his friends.
I walked alone.
My friends who have walked in the past could not make it today, and for the first time in MANY years, I walked by myself. I wasn't really sad, because I knew I had many people with me in spirit. I may not have had a friend physically walking next to me, but I had their love and support with me. I also realized that this walk symbolized my future, the kids going their own way, me on my own.
This year the Alzheimer's Association had a new feature for the Walk. Upon entering the walk site, each walker was given a flower pinwheel. Purple symbolized those who LOST someone to the disease, yellow, for those CARING for someone with the disease and blue for those SUFFERING from Alzheimer's Disease. We could write our thoughts, memories or prayers on them and as we began our walk, we handed them to volunteers who in turn "planted" them so when the walkers came back, the garden would be in full bloom
The picture is of the Promise Garden at our walk. It was beautiful!

Thursday, September 8, 2011

Red Tape

Ideally, I would like Mike to stay in the hospital for 24 hours after he eats to make sure there is no more throwing up or bloody stools. He started eating his meals today, which would mean I would want to bring him home tomorrow......BUT Hospice just informed me that they have a new policy. The hospice doctor has to examine Mike within 48 hours for him to be placed back on hospice, and if Mike doesn't come home tomorrow MORNING, the doctor will not be available again until Monday. If the doctor doesn't examine him and approve the admission back onto hospice, Mike will NOT have his aide on Sunday!
So I have two choices: have Mike discharged tomorrow sometime (morning cannot be guaranteed). If he doesn't come home before 1:00, then we won't have help on Sunday....OR, have him stay in the hospital over the weekend and have him discharged on Monday.
Why can't ANYTHING be easy??? I want him home, and could have him home tomorrow, but the discharge process at the hospital is usually a nightmare. In the past, have gone up there at 9 a.m. and only gotten home with Mike at 4-5:00.
This disease CONSTANTLY leaves me at the mercy of others. I have no control and I HATE IT!!!

Wednesday, September 7, 2011


Mike remains in the hospital and unfortunately I believe he will be discharged without us ever knowing what caused him to throw up blood.
The GI doctors don't want to scope him because of his weakened state. While I understand their concern, it doesn't help me fine out the cause of the bleeding. His doctor told me today that he may come home tomorrow, but he JUST started eating tonight. I want to make sure he can tolerate the food he takes in before he comes home. I don't want to bring him home thinking that all is OK, only to have him throwing up again. I also noticed today that Mike's stool is thick and black. While I know this is not the normal thing to share on my blog, I apologize, but I share everything in the name of awareness. In looking up reasons why this may happen, GI bleeding was mentioned again. I noticed it yesterday also but thought it was a fluke. He passed the same stool today, so I will definitely be questioning that tomorrow.
On the positive side, he looks well and seems MUCH MORE relaxed than he did when he went in on Sunday. My goal has ALWAYS been to keep Mike comfortable and I believe that we succeeded with this hospitalization. I look forward to having Mike back at home again where he belongs. Thank you again for all your good wishes and prayers.

Monday, September 5, 2011

Mike in Hospital

You ALL know that I HATED taking Mike to the hospital. I HATED that he usually left with different problems than he went in for. Unfortunately, last night I had to take him to the ER and he has since been admitted.
He had a fever on Saturday, but otherwise seemed OK. Yesterday he ate and drank fine, but around 7:30 he started throwing up every 15 minutes and it was a dark liquid, almost black in color. My first and immediate concern was that he was bleeding internally. The last time he had thrown up like that, with that color was when he had to have emergency surgery to remove an infected, bleeding gall bladder filled with stones. I called Hospice and they suggested a suppository to help alleviate the nauseousness. It didn't work, and he kept throwing up. I knew something was wrong, so I called an ambulance.
He was admitted with a POSSIBLE bleeding ulcer. They will be scoping him to see what's going on and they've put him on an IV with something to coat his stomach. Courtney and I left the hospital at 4:30 a.m. and will heading back there shortly. Three hours sleep...not so bad.
A couple of things make this even more unfortunate. First, this weekend Brandon came back (on his own) to surprise us. He will now have to take the train back to college with this on his mind. Second, as we sat in the emergency room watching Sunday turn to Monday, Courtney "celebrated" her birthday. She spent the first few hours of her 20th birthday in the hospital with Mike.
I thought we were past all this. I could NOT consciously NOT treat Mike if he has something that can be treated. He had been written off many years ago by so many professionals and had we listened to them, Mike wouldn't be here. If this was a decline due to Alzheimer's and a result from it, it would be a different story...but throwing up blood wasn't something I could ignore and not treat. Please pray for our strength.