Wednesday, October 31, 2007

12 Down....

Well, this is the third and final week of Nathan's vacation. I can honestly say, it wasn't so bad. The agency FINALLY pulled through and sent a VERY capable, friendly and hardworking aide. I will actually be sorry to see her go.

Today Mike is not having a good day though. The guessing game begins....His blood pressure seemed good (to rule out dehydration), his breathing seemed "normal", no fever, good color...BUT his head is drooping and he's not eating or drinking as much as he should. He has had a problem with his toe for the last 2 1/2 weeks. The podiatrist is scheduled to come back tomorrow. It had been infected and he was given an antibiotic. It seemed to be doing OK. Then Saturday night, it got REALLY red and swollen again. The podiatrist came back on Tues. and said she didn't believe it was infected again, but that it did NOT look good. Could this be causing Mike discomfort? Could there be a deeper infection? Things would be so much easier if he could talk and explain what is bothering him. But then, life is not easy. So the guessing game continues and we try to rule things out. I am praying that he will wake up from his nap with more energy to make up for his lack of eating and drinking so far today. But until then, I worry that it will not get better, and he will be back in the hospital.

Sunday, October 28, 2007

Happy Anniversary

19 years ago today, Mike and I were married. Our wedding song was "Follow You, Follow Me", by Genesis. This was one of the only things in all the wedding planning that Mike really requested. I was showing Mike's aide our wedding album today and how sad is it that all my friends in the wedding party are no longer in contact with me. This wasn't the typical, we grew apart and went seperate ways. It was more of an example of Alzheimer's Disease Alienation. I wonder how different things would be if I had that much more support from friends.

Of course, the sadness is also there from imagining what might have been. All our hopes and dreams are no longer. I always wonder what Mike would think of Courtney and Brandon and the young adults they have become. Knowing how proud he was of them when they were younger, I can't even imagine what he would think of them today. I wonder how Mike would have aged and whether he would have kept his sense of humor. I wonder what we would have done to celebrate our day. Instead, I sit quietly at home with Mike and the kids. I am thankful we are all here and happy and healthy.

Happy Anniversary Mike. Love Karen.

Thursday, October 25, 2007

8 Down.....7 to Go

Not much going on, although today Mike seems to be a little off. I ALWAYS get concerned about these days, because I never know whether it's just the day, or something else. He didn't eat or drink as much as the last few days, but he DID eat and drink. He smiled a few times, but not laugh hardily like he has in the past. I guess I need to listen to my children. They always say that everyone is entitled to a bad day. I know better though and pray that that's all it is. With his health as fragile as it is, I get concerned that he can't afford to have a bad day. He needs all the nutrition and hydration he can get.

Tuesday, October 23, 2007

6 Down, 9 to go..........

Everything is still "status quo" and we're liking it. Last night Mike slept without hardly any jerky movements, so I actually got some rest. I can only hope that tonight is the same.

How weird is it that I was contacted yesterday by a Japanese production company. It appears they may be interested in including us in a documentary they produce twice a year showing people with rare medical problems and how they deal with them. Even if nothing comes of this, how weird is it that a Japanese company is aware of us and our situation??? Maybe what we are doing actually IS raising awareness. I feel like our efforts are being noticed.

Monday, October 22, 2007

Week #2

Well, this is week 2 without Nathan. God has sent an angel named Sandra to care for Mike, I just hope she can come back for week #3. All is status quo there and for that I am thankful.

Last night, Mike had MANY more jerky movements, in fact it was practically non-stop from 8-12:00 a.m. I actually gave him additional medication at that time, which made me more concerned because I am so afraid to give him anything while he is sleepy for fear that he will choke. I just could not get to sleep and needed to do something. It's at those times that I feel most vulnerable. It's then that I realize just how alone I am. If I was caring for a parent, I would most likely have a spouse to help keep me strong, but because my spouse is the sick one, I am all by myself. I get scared and have no one to lean on, no one to hold me. Sometimes I just want to "step away" from the situation and I realize that I can't because there would be no one else to "step in". There is no one to share responsibilities with, nor anyone to comfort me. Last night was rough and I can only hope that this cycle will end soon. I guess most people would perceive me as the strong type, but the reality is, that inside I am as scared and frightened as anyone else. Nightime is the time of day I dread the most.

Saturday, October 20, 2007

1 Week Down, 2 to Go......

Well, thankfully we made it through the 1st week. The aide that started on Tuesday is wonderful. She's great with Mike and seems to know exactly how to handle him. When the agency told me she would work this week, I asked if she would work the next 2. They said that they would let me know. When I got home on Fri. I asked her if the agency called her, she said no. Meanwhile, they hadn't called me either. So, I am up in the air as to whether Sandra will be coming back next week. Nothing new with this agency.

The repairman came today and thankfully, the dryer WAS repairable. It was much cheaper than a new machine.

Mike is doing well and we can only pray it stays this way.

Thursday, October 18, 2007

4 Down, 11 to go.....

Obviously it's a countdown to the number of days before Nathan returns.

Today went better than yesterday. We still have no dryer and my car is still not inspected, but Mike did better. He ate all his meals and drank all his drinks. When I got home from work though, he was coughing alot. It made me nervous. I checked his BP and lungs. All seemed OK, but he kept coughing. Of course, I was concerned. Then Brandon and I got Mike into bed and as we were moving him around, he let out a few good burps. I believe that was the problem. I remembered that Nathan always said that many times Mike would cough when he was trying to burp.

Tomorrow we will be meeting the Newsday reporter to talk more about our life. No matter how much or how little we are in the article, we will be glad that attention is being brought to the realities of Alzheimer's Disease and the obstacles caregivers face.

Wednesday, October 17, 2007

3 Down, 12 to go.........

We survived another day.

The podiatrist prescribed an antibiotic for Mike's toe yesterday. It was delivered last night and strangely, I took a moment to read the instructions etc. I noticed it said that we should tell the doctor if the patient has seizure disorders. Well, of course, my eyes popped, as that is the thing I HATE THE MOST. I called his regular doctor this morning and he agreed the antibiotic should be changed. The podiatrist had no idea of Mike's medical history and I am so glad that I read the instructions.

The substitute aide is doing well, although I am nervous that she is not getting Mike to eat and drink as much as he should. This is a REAL concern for me, as he has been dehydrated in the past. As much as I tell these aides how important it is to have Mike at least drink, they don't seem to get it. I will continue to push her and hopefully, she will "get it". Otherwise it will be a vicious cycle. If he doesn't drink, he becomes lathargic and it will be even more difficult to get him to drink. Thats' when dehydration settles in. uuuuggggggghhhhhhhhhhhhhhh!!!!!!!!!!!

And oh yeah, I almost forgot. This morning as my mom was helping with the wash, I smelled something burning. Our dryer almost went on fire. The entire inside was all burnt. Now I have to figure out when I will have the time to arrange for a repairman - if it's even possible to fix. My car's inspection also expired on 9/30, I have no right turn signal and my oil is very low. When will this end??????????????????

Tuesday, October 16, 2007

2 down, 13 to go......

Well we got through yesterday unscathed. The aide that came was not good at all, and as I have found to be more common than one would think, she argued with me about things I needed done with and for Mike. I stayed home and wound up doing most of the things on my own. My mother had been ironing the kids clothes for school and the aide actually asked my mom to iron her work shirt. Dumbfounded by her nerve, my mom did it. Later the aide was annoyed when we had no "snacks" that she liked, so she left and went to buy some. She was supposed to work until 7pm and at 4pm she told me she had to leave at 5. By that time, I was more than happy to see her go.

Today's aide seems VERY reliable and knowledgeable. She is only supposed to work for this week, but I am going to try to get her to stay for the 3 weeks. It is so difficult to find someone like her. Today the podiatrist also came and confirmed that Mike's toe is in fact infected. She cleaned it out and ordered an antibiotic for him. She said she hopes it's better within 3 days and also explained that it could have been quite serious - in fact it could have sent him to the hospital. More praying will go out that his toe heals and nothing worse happens.

Saturday, October 13, 2007

Not out of the Woods Yet

Just when Mike came home and began his recovery, we found out that Nathan will be away for 3 weeks instead of the two he had originally planned at the end of October. His Aunt passed away and he extended his vacation so he could attend the funeral. Of course, he deserves a vacation and MUST be able to attend the funeral, it's just that the timing is all wrong. I am worried enough about Mike getting better (he's still moaning a little and has some diarrhea - sorry?!), but now I have to worry that a substitute aide will not know Mike well enough to know if something is wrong. I'm sure I will not be in work alot, which is always a concern for me. The kids just don't understand why I am so on edge, and they get frustrated with me when I show my concern. This worry drains me.

If we make it throught these 3 weeks unscathed, I still have the end of December to look forward to when Nathan again, takes another 2 weeks off to attend his daughter's wedding in England. Mostly good things for him, not so much for us.

Thursday, October 11, 2007

Mike coming home today

Good news, Mike will be coming home today. They treated him with antibiotics for 5 days and he seems to be back to "normal". I never got an answer as to what caused the fever, but I truly believe it was from the flu shot he got on Friday.

We will continue to pray that he does as well as he was doing before and that we make it through Nathan's 2 week vacation at the end of this month. More stress...............

Tuesday, October 9, 2007

Mike had an EEG and CtScan yesterday, but I have not spoken to his doctor. The resident on the floor, of course, keeps talking about possible pneumonia, but we expected that. It seems that whenever an Alzheimer patient is admitted with a fever, that's what they ASSUME. Mike has been eating and drinking well. They have him on 2 antibiotics and a blood thinner, which I assume is preventative because of his history of clotting.

I was in tears when I left last night. As I was giving Mike a kiss and telling him I had to go back to work today, it appeared he said "no". He gave me a frown also. It seemed as though he really understood. Of course, I delayed my leaving, and the kids and I stayed a few more minutes. When I went to leave again, he lifted his hand and appeared to wave. I left with tears in my eyes and prayed that IF he DID understand, he knew I would be back tomorrow.

I hope Mike will be home in a few days and all will be back to "our normal" soon.

Monday, October 8, 2007


Mike is still in the hospital and is scheduled for an EEG today. He appears to be himself again, but as of now, I have been given no answers as to what caused all this. I'm still beginning to believe it was a reaction to the flu shot, since he had been doing so well for so long. They say there's a "spot" on his lower left lung, but they said the same thing when he was in the hospital in January. When they check his lungs, they are clear. His regualr doctor is back today, so I'll see what answers I can get.

Saturday, October 6, 2007

Mike in Hospital

Mike was brought to the hospital last night and was admitted today. He was fine all day yesterday and even went to the Dr. for a regular check-up. All was 100% and the Dr. was thrilled with Mike's condition. Last night, around 7pm, he started to moan and breath heavy. We thought of last Christmas with the collapsed lung, so I called the Ambulette. Courtney and I went, and Brandon stayed at home with my brother.

I was so focused on his moaning and breathing, therefore, so were the doctors. When Mike was brought in, he had a 103 fever. They started him on an antibiotic because they thought they saw something in his lungs (i.e. pneumonia/bronchitis). My mom came to relieve Courtney and I at 8:30 this morning. By then we were both up for more than 24 hours STRAIGHT. We came home, rested and we're heading back there now. Oh yeah, in the ER this morning, Mike had another grand mal seizure. That's when I became hysterical. The hospital staff was EXTREMELY understanding and spent time with me as I was there by myself (Courtney had gone to the waiting room to try and get some sleep, so thankfully she did not witness it). This could have been caused by so many things. As I woke up after my 4 hour rest this morning, it hit me like a ton of bricks and I called the nurse to have them check Mike for a UTI. Since he had NO SIGNS WHATSOEVER of a cold, I couldn't understand why he may have pneumonia. This way they will now check for another source of infection.

The guessing game begins, as I try to once again sort out what is wrong with Mike because he can't tell us himself. Hopefully, he will not be in long this time and we will get back to a regular routine in no time.

Please pray for him.