The Brain

With Mike's illness, I've seen how complicated the function of the brain (or lack thereof) can be. What I wonder is, can the brain actually EXPLODE????? There are days when my brain "hurts". There is so much worry, concern, planning, fear, sadness - I often wonder how much the brain can handle.

Our Energizer Bunny

I kid you not, Mike TRULY is our Energizer Bunny. He keeps going and going and going...........

We would find ourselves saying that after each hospitalization, so for Christmas, we decided to get Mike a shirt that expressed that thought.

My sister and her family came in from Pennsylvania today and, as always, we had a great time. We don't get to see them that often, so when we do, we find ourselves laughing until it hurts. They will be here until Sunday and it will be a nice change. We are thankful they came, considering that my brother-in-law (the same one that had bypass surgery last year) has bronchitis. My sister had to take him to the ER on Christmas afternoon because he felt really crummy and couldn't wait until Monday to go to the doctor. At least now he's been on antibiotic for a full day, so we hope he's feeling better by tomorrow. He was a sport today and trudged through the festivities like a champ.

The kids got their report cards today and were VERY pleased that they did well on their finals. They continue to amaze me, considering the fact that they had their finals in the middle of Mike's hospitalization. They studied at the hospital when they had time, then at night when we got home.

Today was a good day.

P.S. We were thrilled to finally get Mike's repaired glasses! He is no longer seeing through duct tape!

Blessed Christmas

Merry Christmas to all.
Today was a different, yet nice Christmas. Mike's aide had the bulk of the day off (she came by for 2 hours at the end of the day to give him dinner) so I got to spend most of the day with him, which I enjoyed and savored because I have no idea how many more holidays we will have together. The kids were gracious for their gifts, or lack thereof, but we all realized how VERY BLESSED we truly are. I would not have changed our day at all. Well there IS one thing I wish we could have done and that was go to Mass. Because I had to take care of Mike, and needed to be here, I could not get there. We wanted to go to Midnight Mass, but once again there was no one to stay with Mike. Mass is a HUGE part of this holiday and it hurt us all, but as I explained to the kids, we didn't stay home just to "relax". We stayed home to take care of Mike and I'm sure God would forgive us.
Tomorrow my sister and her family will be coming in from Pennsylvania to visit for the holidays. As always, we look forward to their company.

Update

Mike came home from the hospital on Monday. I apologize for not writing sooner, but things have been chaotic - at best.
He seems to be doing "OK", just very slow. As usual, I get concerned, and the kids try to bring me back up. They remind me that we have been down this road before, and Mike always seems to re-bound. I just cannot ignore the FACT, that one day he will not re-bound.
Our Christmas has been disrupted and I am trying to salvage it. After spending a week in the hospital with Mike, every day for 12 hours a day, I have not had the chance to finish anything. My house is a MESS and I will be owing quite a few people gifts. I guess I can say that this Christmas Season we will experience the true meaning of Christmas. We may not have all that we needed or wanted, but we will all be together.
I thank you all for your prayers of love and strength, and I wish you all a blessed and peaceful Christmas.

Happy Birthday to Me :(

Today is my birthday - yes I'm 21 again.

Mike was not his best today, but I got a great big smile and laugh from him. The picture was taken during that laugh. I know he looks pathetic, with his glasses being held together by duct tape. We are impatiently waiting for his other glasses to come back repaired.
Today brought the usual fears and concerns. Much like the last time Mike was hospitalized (May), I spent everyday with him, most of the time by myself. I've seen every cough, every breath and I get scared. The kids keep reminding me that I felt the same way in May, but then Mike came home, to his own house, his own bed and on his own schedule. He managed fine and remained "status quo" for quite some time. My fear remains pretty much the same as then - what happens if he can no longer eat and forgets how to swallow? Will we be strong enough to accept that fact? In accepting that fact, we will in essence, be saying "good-bye". The kids and I had that talk a few years ago, and we all agreed that when Mike can no longer swallow, we will be able to accept it, because we would know that he would otherwise be suffering and run the risk of choking. Now that the reality is closer, I'm afraid that the kids will have a harder time than they thought. I just keep trying the stress to them that I would much rather see Mike at peace, than using every ounce of strength to swallow something he can't.

I pray to God for strength and courage for ALL of us.

Day 4 in Hospital

Mike still isn't "up to par". He took a little more food and drink today, but not alot. Midway through the day, I noticed that he kept moving his right leg. Normally, he's usually very content, but for some reason, today, he kept moving his leg. Later in the day, I was re-positioning him and I noticed that there appeared to be swelling near his ankle. I called the nurse to check it out and she was just as perplexed. She called the Residents in and they examined it. They feel that Mike is retaining fluid. I told them that he looked uncomfortable today and I was concerned because of his history of blood clots. They decided to order a dopplar test on his legs tomorrow. Now I get concerned because he HAS has pulmonary embolisms in the past. I begin to wonder if Mike's heavy breathing on Monday/Tuesday could be the result of blood clots in his lungs??? I guess this will be something I discuss with his doctor tomorrow. This morning we had discussed Mike possibly coming home tomorrow or Monday.

One thing I have learned through these past 7 1/2 years - I will NEVER get used to this. I HATE not knowing what's wrong, I HATE Mike not being able to talk, I HATE leaving him at the hospital, I HATE worrying, I HATE having to constantly think about the day that we lose Mike. I HATE getting prepared for the worst, only to have things turn around. I HATE feeling exhausted, I HATE seeing Mike in pain, I HATE seeing the kids get scared, I HATE ALZHEIMER'S DISEASE.

I don't ever want to seem like I am complaining when I write. I write this blog to try to explain what it's like to live with someone with Alzheimner's Disease. There are good days and bad, ups and downs. I will never regret caring for Mike. We all feel very humbled when all the doctors and nurses tell us that they cannot believe how good Mike looks, and especially how good his skin looks (skin breakdowns are very common in all patients who are not mobile and one needs to be very vigilant in doing their best to prevent them from starting). They tell us all the time that it is VERY CLEAR that we take good care of him. That makes all the exhaustion worth it and I know in my heart, that Mike would be doing the same for me.

Sleepy Day

Today was not a great day. Mike slept the entire day.

I get to the hospital between 8:30-9:00 a.m. every day. This morning, Mike wasn't as alert. I tried giving him some breakfast but I didn't get far. I didn't want to force it, because I didn't want him to choke. Then he opened his mouth and yawned and I saw that his tongue was all white. He now has THRUSH, which means he will most likely not want to eat or drink for a day or two because his mouth and throat hurt so bad. I can look on the bright side and say at least he's in the hospital on an I.V. and he will continue to be hydrated. He just cannot get a break.

They tried switching all his meds from IV form to oral, in anticpation of him coming home. I stepped out to go to the ladies room and when I came back, Mike was up in bed and coughing with a pained look on his face. In my short absence, the nurse tried giving Mike his liquid meds via syringe in his mouth. NOT GOOD. I immediately told her to stop. She seemed completely confused, apparently no one had told her that EVERYTHING Mike takes in by his mouth needs to be thickened. She felt awful. When I think about what could have happened, I shuddered. Can you imagine what would have happened had I not been there? I do everything I can to tell everyone on staff about Mike's special needs, and it never seems to make it to his file for all to see.

Mike continued to sleep the rest of the day. We got him to smile a few times, but nothing more. The kids and I left early tonight because it had snowed all day today and I wanted to take my time getting home. It feels weird being home at this time. We usually do not get home until about 9-9:30. The nurse showed me the BIG sign she made for Mike's file (about the meds) so that no one will make the same mistake she did, so I felt more comfortable leaving him, but I still felt guilty leaving him by himself so early.