Coming Home

Hopefully today Mike will be coming home. Yesterday he "voided" quite a number of times on his own, so for now, he will NOT be coming home with the catheter. That's a good thing. He really didn't eat much for breakfast and slept through lunch, but he did OK for dinner. The kids and my mom and Walter were up at that time and I started to believe that he likes the chaos. He was all smiles, so who knows???!!!

I met up with the rep from HCN (hospice care network) yesterday at the hospital. She will be coming up this morning to evaluate Mike. I have no doubt that he will qualify, but there's an issue with Mike's Managed Medicaid Insurance. There's also the question about being able to keep an aide for the 11 hours we already have, since hospice only provides an aide for 4 hours a day. I was hoping that Medicare (hospice) could bill for the 4 hours and medicaid could bill for the 5 hour balance, but the woman I met briefly said she didn't think that could happen. Once again, I am amazed that even when a family wants to do the right thing, they cannot.

Not Today

Mike was supposed to come home today, but didn't. When they took the catheter out yesterday, he was not able to go on his own. They tried this 2 times with no luck. They had to put the catheter back in because if he didn't let out the urine, we were told it could lead to kidney failure. A urologist came in today and explained to me that very frequently patients with neurological problems have issues like this. They are going to try again tomorrow, and if Mike doesn't go on his own, they will need to insert the catheter for good. I'm not too thrilled with that because Mike's brother Rich passed away after he became septic from a clogged catheter. We have no choice though because Mike's body DOES have to get rid of it's waste.

I don't think I mentioned that they told me the other day that Mike has MRSA in his nose. I freaked out because I thought MRSA was dangerous, but I was told that this type is harmless because it's "colonized in the nasal passages". All I have to do is rub an antibiotic ointment in each nostril for 7 days.

I talked to the kids again today about hospice and of course, they were upset. As an adult knowing that there will be a time when Mike can no longer fight this battle, I'm having a difficult time with this. How can I expect Courtney and Brandon to? This is their dad. No child should have to go through this - EVER!!!!

The Unknown

I would first like to thank Rhonda for those delicious cookies. What a wonderful surprise and totally unexpected. Thank you to Aunt Barbara abd Uncle Bernie for your beautiful e-card. You ALWAYS know how to make me cry.

With any luck, Mike should be home tomorrow. He's slowing down alot and I have begun to make calls about hospice. My goal will be to find one that will work with us. The kids and I need to know that we will have done EVERYTHING we could. We do not know at this point if Mike is slowing down because of the infection or because of the progression of the disease. Our situation is the classic example of The Boy Who Cried Wolf. Quite a few times over the last few years we have been told, "it's the beginning of the end", "expect the worst", but Mike has always bounced back. Had we given in when we were first told this, we wouldn't have had the last 3 years with Mike. We have no idea what to expect when the time comes, because we have been given such wrong information before.

I imagine the next few weeks and months will be QUIET difficult. Only time will tell. I've already told Mike that we will do whatever he wants. He may not be able to speak with actual words, but he will let us know in his actions.

Life goes on

Today wasn't Mike's best. Breakfast wasn't great, but this has been a pattern and I was expecting that. He seemed to be enjoying his lunch, but we were interrupted by him being transported for a chest x-ray. We tried to postpone it, but I was told it would have been in the middle of the night and I didn't want to NOT be there to go with Mike -AND- I also didn't want him awakened for that. So instead, he never got to finish his lunch. When we got back to the room, he had his respiratory treatment, so he never got to fisnish his lunch. For some reason, he wasn't into dinner either. He ate, just not alot. He had a much better day yesterday. My concern, as always, is that I'm not sure he eats enough to sustain himself once he gets home.

Courtney did get to go out for a little with her friends this afternoon, and for that I was thankful. As is usual for her when Mike is in the hospital, she tends to be glued to my side all weekend while I'm there, against my better judgment. She agreed to spend the afternoon with her friends and that was good.

My brother and Brandon got our TV out of the storage unit and I am pleased to say that our old TV is now up and running. My brother's 52" TV is on our backyard lawn. H doesn't have the money to get it checked out, so he will probably "junk it". I didn't realize it was about 10 years old.

We still have the leak in our sideyard faucet and I can't imagine what our water bill will be like. The dryer still doesn't work and I still have the pain in my side. On a lighter note, we are all very blessed with so many things in our lives and I vowed to try harder not to dwell on the negative. In Brandon's words of wisdom, "no matter what happens mom, we will be OK". Amen.

Every Now and Then...

I often wonder if things would be different if I had a bigger support system.

All I wanted to do today was sleep a little later, but I can't. I need to get to the hospital to give Mike breakfast. If we had more family/friends around, I wonder if they would offer to go up to the hospital and help while I got a few hours rest. Yesterday my mom and Walter came to keep Mike company for a few hours, but that was so I could do shopping at Target...not to get rest.

My family consists of me, Mike and the kids, my mom and Walter and my brother (my sister and her family live 3 1/2 hours away in PA and I KNOW it breaks their heart that they are not closer). This is all we have. Mike's family is all gone, and the one brother he does have, has not been in touch with us in about 5 years. I have friends, but none close enough that I could count on to help. This disease is so horrific, and it's even worse when you're doing it practically alone.

I imagine coming home from the hospital and having my lawn mowed, dinner made, the house cleaned a little. My house (inside and out) is a MESS from Mike being in the hospital the last 1 1/2 months. This is life, but every now and then I imagine what it would like to have a big family who would be able to help us. I imagine getting a fruit basket, cookies etc. delivered to the hospital for me and the kids to enjoy while we care for Mike. I know it sounds selfish, but every now and again I imagine what it would be like to have more help, to have more people who care enough to help.

I have a feeling that this is "normal" for people living with Alzheimer's Disease. The feeling of abandonment, loneliness, isolation - because the people we DID once have in our lives, that could have made this journey more bearable, have all disappeared. When I think back to all the "FRIENDS" Mike and I had in our younger years, before things took a bad turn, I can only imagine how much easier things could be if they were still in our lives.

No Way Left But Up

Sorry for not updating sooner but to say things have been crazy would be an understatement. Where does one begin, let's start with Mike.

I have spent 12 hour days at the hospital for 5 days so far and have not seen any of his doctors. I assume they must come in before I get there at 9am. I HAVE spoken to the Resident on the floor and that's who's been keeping me informed....as best as she can.

--Mike's EEG results came back "normal" with no sign of seizures. Huh?! What were those episodes that even the respiratory specialist categorized as one? I was informed that they are just a normal progression of the disease. They cause no pain/harm to Mike and there's nothing we can do. Some days he's had quite a few, other days (like today) only 1 or 2. Not the best answer, but an honest answer nonetheless.
--Mike's x-ray of his abdomen showed no signs of blockage, only "poop". With the help of the colasce (sp?), He's been going regularly everyday so far. His fist clenching has stopped and he's eating a little better, but still not as much as he used to. I can only assume that this is also another step down in the disease process, although no doctor has said the same to me.
--Yesterday he was given another patient's antibiotic (thankfully it was the same kind and dosage) and today I noticed a horrific rash under his arm. Apparently when he is washed in the morning, they just keep adding powder and they do not clean it. I can't even begin to tell you how red and sore it was. It was so bad that it was bleeding. The nurse gave me some bacetracin to put on it after I cleaned it. I actually cried at the sight of it and felt partially responsible for not seeing it sooner.

On to other things....
---I've had a pain in my side for the last month. Sometimes it hurts so much to even walk. I wanted to make an appointment with my Dr., but can't plan anything not knowing what's going on with Mike. The whole thing makes me nervous because the pyschic I went to last year said to be careful about my left side near my ovaries.
---I've had a leak on the side of the house for about a month now that has not been fixed. When I had some extra money, I didn't have the time to arrange a plumber to fix it, now I have neither.
---The other night, after a long day at the hospital, we came home, ate and put on the TV. Shortly thereafter, it made a popping sound and then went out and started smelling like burnt plastic. We've had no TV for about 4 days. This one was my brother's, so hopefully one day soon we can get to his storage facility and get our old one out to use. In the mantime I have no idea where we will keep this 52" TV that he wants to see if it can be fixed???
---Two days ago I was at the hospital and my mom called me to tell me my clothes dryer broke. C0uld it get ANY worse???
---That same night Brandon yelled down from upstairs that the toilet handle broke. My answer to that was "of course it did". Should I expect anything less these days???

I am being tested to the maximum right now and I am not sure how much more I can take. I pray everyday for answers and for the strength to get through this low time in my life.

Back in the Hospital :(

Mike had been doing well all last week. Nathan left Friday for a 2 weeks vacation so of course I got nervous. Mike usually always winds up sick when Nathan goes away. On Saturday, Mike had about 6 or 7 "shaking incidents". I was concerned that they were "S's", but I had never seen any other kind than the grand mal, so I wasn't sure. Sunday he did well all day and Monday he was OK until he got up from his nap around 4pm. Courtney called me at work to tell me what was happening (heavy breathing). I left work and got home. Mike's face was beat red and he was burning up. His tempt was 101.4. I called his doctor and he told me to wait it out. By 8:30 Mike seemed to be having problems breathing, so I called the ambulette.

By the time we left for the hospital, it had occured to me that Mike had not had a BM in 5 days. At the ER they said that that can sometimes cause a fever. He was admitted again because of the fever and the fact that he had just had pneumonia. He had another "shaking episode" in the ER.

Once again I was exhausted from not sleeping for another night. We got to the hospital at 9:30 p.m. and I did not go home to shower and change until 10:30 a.m. the following morning. I was able to do that only because my mom and Walter came to sit with Mike and try to answer any doctor's questions. Another all nighter.......My brain was fried.

With yet more help from our friend Jean in Patient Relations, Mike was moved back to the room he had just left last week. It's a private room and allows me to have someone with Mike all the time. The issue with this hospitalization is that Nathan is away, so I had to be at the hospital all day. I left the house at 8:30 in the morning and got home at 8:45 tonight. Even if Nathan was around, I couldn't have had him go up the hospital because I can no longer afford to pay him. The last hospitalization cost me approx. $2,500 out of pocket, and that did me in (I write about this only to stress the fact of how this disease affects so many aspects of our life - especially the financial aspect. This kind of hardship is all too common).

Because I had mentioned the shaking incidents to Mike's neurologist, he ordered a 24 hour EEG. Mike was prepped and set up with a 24 hour video monitor. About one hour after the hook up, the respiratory person came in to give Mike his treatment (a nebulizer t help losen the phlegm). As soon as he started moving him, Mike had another incident. Both the resp. person and the nurse were in the room and they said it was most likely a "S". Twenty minutes later, he had another. Three hours later, yet another.

I really HATED leaving Mike tonight. Even though everyone says that people don't feel the "S", I feel bad that if he has one during the night, I will not be there to comfort him. The aide that works nights told me that Mike had 2 episodes like that last night. She wasn't sure what it was either.

So now the question is - what is causing these? The infection? The medication? The affect of the antibiotic on the anti-S medication? Is Mike dehydrated? Tired? Is this the disease taking over that area of the brain? I have no idea. His 24 hours of testing will end tomorrow afternoon and then the results will have to be reviewed. Friday is the 4th of July (looks like no BBQ for us this year) so I'm sure nothing will get done over the long weekend.

They also gave Mike an enema and he went to the bathroom. His white blood count was back to normal as was his fever.

As ALWAYS, what makes this so darn difficult is the fact that Mike can't speak. I am grasping for any signs of discomfort to explain something that may be going on. I had a meltdown in the hospital room this morning and the nurse came walking in. I didn't care, I am tired. I just want to know what's causing these S's and to know that Mike isn't in any pain.