Tuesday, December 30, 2008

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.

Friday, December 26, 2008

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!

Thursday, December 25, 2008

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.

Wednesday, December 24, 2008


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.

Sunday, December 21, 2008

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.

Saturday, December 20, 2008

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.

Friday, December 19, 2008

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.

Thursday, December 18, 2008

Good Day

I am relieved to say that today Mike did much better. His fever is gone and he doesn't seem to be in pain anymore. He even had some lunch and dinner today which made me very happy.

When I walked in his room this morning, we was still sleeping. His lips we SO dry and I felt so bad for him. I gave him a kiss and he opened his eyes and gave me a smile. I was set - that was all I needed to see. I cleaned up his mouth and mixed up his Gatorade (with the "Thick'It") and he seemed genuinely happy to get something to drink. Once again, it's times like these that leave me feeling so bad for him. He's so helpless lying there not able to express his needs. I started off very slow, because I didn't want to give him too much on an empty stomach. After he had some juice, he put his head back and fell asleep. He looked very content, which was a far cry from how he looked when we brought him in. I like his content look MUCH better.

The kids came up later in the day with my mom, after their tests, and they were very happy to see him relaxed and comfortable. They both studied again (they have 2 more tests tomorrow - unless we get all that snow they're calling for, in which case they will be put off until next week).

Oh yeah and one more bit of news.............COURTNEY GOT ACCEPTED INTO FORDHAM UNIVERSITY!!!!!! That's where she's wanted to go since she visted it last year and I was so concerned for her that she wouldn't get in. Now the next HUGE hurdle will be figuring out how to afford it. I hope she will be elligible for merit scholarships and financial aid. Heck, if we're not elligible for financial aid, who would be????? I am just so proud of her and so happy that she got into her first choice school. She will also be applying to Vassar and NYU, and while they are considered her "reach schools" I think she has a good chance to get in. If she does, we will have to seriously reconsider her choice, since those 2 schools may have a better communications/film department. And now the fun begins..............

So all in all, today was a good day. Mike did well and Courtney got into her first choice college. Let's hope that tomorrow is another good day. We could sure use more good days.

Wednesday, December 17, 2008

29 Hours Without Sleep

On Monday, when I came home from work, I knew there was a problem with Mike. He was hunched over and making almost a groaning noise. A short time later I took his temperature and it registered 100.9. We got Mike into bed early Monday night so that I could give him a Tylenol suppository. He continued moaning, which for obvious reasons, gets Courtney and Brandon very upset. Who wants to see someone they love, especially a parent suffer? I laid in bed with Mike until he calmed down. I took his temperature again at 9pm and it was 102.9. I was very nervous and even though Mike is on hospice, my past experience with them has not given me the confidence I needed to call them. IF someone got back to me, what would they be able to do? Needless to say, I got very little sleep Monday night.

At 8:30 yesterday morning, I put a call into hospice. When Mike woke up, he didn't seem to have a fever anymore, but he still seemed to be in discomfort. He ate all his breakfast and drank about 3 glasses of juice and Ensure. The nurse came by around 12:30 to check on him. I had asked if they could perform blood tests, and she was hesitant. I asked if they could check his urine (for a UTI) and they seemed to hesitate with that also. They finally conceded and got a urine speciman. They sent a technician over to perform a chest x-ray and when I called for the results, I was told it was "all clear". But by this time (approx. 4pm), Mike was STILL breathing VERY FAST and I was quite concerned. I questioned a possible infection in his bloodstream (sepsis) and it was then that they suggested that I take him to the hospital where they are equipped to do all the testing they needed to. They arranged for an ambulance to get Mike and we got to the hospital by 5:30 last night. The kids decided to stay home for a bit, have dinner and then come up later. Courtney brought me the car so I had a way of getting home and my brother picked them up. They have their tri-mester tests this week and next, and had to get home to study. They left the hospital at about 8:30 p.m.

By this time, Mike's breathing had slowed up alot, yet it still was not "normal". Preliminary tests showed "possible pneumonia" in the lower left lung - what a surprise. The same exact shadow they see each and every time Mike is admitted to the hospital - for anything. Alot of his functions were "off" which would indicate an infection, but they could not pinpoint it yet. He did have a sore on his buttocks which they were concerned about. That happened VERY quickly at home over the course of about 3 days.

While in the ER I had asked the doctor to check out Mike's shoulder. Remember, the one that swelled up about 2 weeks ago which when Hospice finally x-rayed for me, showed that is was "normal". Well the doctor was SHOCKED and said it was obviously dislocated. For two weeks Mike has been enduring the pain of a dislocated shoulder and I did not know it. That news put me over the edge. I tried to get answers for him, but no one would listen and when they did, the x-ray was obviously not done right. Well, the ortho Dr. spent almost all last night working with Mike's shoulder to get it back into place. About 7 x-rays later, a shot of morphine and an arm sling, they thought it was fianlly back in place. Well tonight, it looked out again. The doctor explained to me that because it has been out of it's socket for 2 weeks, it will be difficult to get it to stay in place.

Synposis - Mike is in the hospital and he has a dislocated shoulder, 2 bed sores, and an infection somewhere. He is now on 4 very strong antibiotics that would kill "anything" they said and cover all bases since they're not sure where the source is coming from. They do not think he is septic, but his levels are off in different areas.

I woke up at 7am Tuesday morning and here I am now. After 29 hours of no sleep, I came home and slept for 2 1/2 hours while my mom and Walter stayed with Mike. When the kids got home from school, we all went back to the hospital and stayed until about 8:30 p.m. I knew I would have no time tomorrow to Blog, so that's why I am writing now. This has taken me a LONG time because of all the mistakes I was making from my sheer exhaustion.

I pray that they will figure out the source of Mike's infection and that he can be home for Christmas. We spent one Christmas in the hospital, we would rather not do it again. As for shopping, decorating, cleaning etc. Yeah right??!!! 29 hours of no sleep has finally taken it's toll and I'm going to bed.

Wednesday, December 10, 2008

When it Rains...........

I had the day off yesterday to try to get some things done for Christmas. I have been trying desperately to decorate the house (inside and out) since the weekend and only a small portion has been done. Because my boss is going away next week (again) I asked for a few days off so I could get things done. I got two days, and yesterday was my last day off.

It began with me waking up and feeling like "poop" (it's a family Blog -LOL:). I started to not feel well over the weekend and Monday night, I knew it was coming. My scratchy, burning throat, runny nose, pressure in my head and my ear hurt. To top it all off, my asthma was acting up because of this. I had to go to get my yearly thyroid sonogram. Oh yeah, Mike's eyeglasses broke in half on Monday and I had to try to find someplace that could make up another pair without him being there. After my sonogram, I set out to the vision place. They could not make another pair without Mike's written prescription (I doubt he ever had one) because he had too many stigmatisms (is that the word?!) and they couldn't get an accurate reading from his lenses. I was so upset, but I didn't have time to think because my mom called from home to tell me that the x-ray tech was on his way over to x-ray Mike's shoulder, finally. I ran home to help them get Mike ready for that. After that was done, I had to go to the pharmacy to get a cream for Mike for a rash he's had since Monday (I get panicked because of his MRSA past). Oh yeah, and Mike's aid had hurt her wrist in the morning, so I had to make sure I was home when he had to be transferred because she couldn't do it herself. I did all this while not feeling well.

Final results: I still have not been able to find a place that will make Mike's glasses, his x-ray showed no break, dislocation or fracture (YEAH), I have a sinus infection and an ear infection and Mike' aide will most likely be going to the doctor to have her wrist looked at. I went to the pharmacy to frop off my medication and they called to tell me that my insurance listed my policy as "expired". I wanted to start the antibiotic tonight, but now I will have to look forward to arguing with HIP tomorrow morning.

I told God that I'm not particularly enjoying his sense of humor right now.

Sunday, December 7, 2008

'Tis the Season

Mike's shoulder is a mystery to us. Some days it seems to be OK, other days it seems to be swollen. I give him Tylenol every now and then, because he does appear to be favoring it (he keeps it bent at the elbow folded in against his stomach). When I touch it and move his arm though, he doesn't appear to be in pain. I'm not sure what to do. If it continues to be swollen on and off, I may check into what I would have to do to get it x-rayed.

Christmas preparation is keeping me busy. Putting up the tree and decorating is so much extra work, on top of everything else that I need to do on a daily basis. This holiday was Mike's favorite, so for that reason, I try to make everything look festive. Courtney and Brandon also like to have everything decorated, I just really don't think they "get it" though. My days are swamped normally, but now factor in all this extra work, and I am more overwhelmed than normal.

We had a nice surprise today. Our friends knocked on the door and delivered a beautiful poinsetta plant. Their son was selling them for Boy Scouts and our other friends (Mary and Chris - you remember the friends who "flocked us") bought a plant from their son - FOR US. It is beautiful and a nice surprise. It's always the small things that make our day. Thank you Mary Chris (for the gift) and Norma and Andrew (for the delivery).

Saturday, December 6, 2008

A Good Book

I've mentioned before that a group of EOAD spouses go out once a month. We have been able to do so through the goodness of one of our members, Pat Moffett. He wrote Ice Cream in the Cupboard, the story of him and his wife and their life as they navigate through the craziness of diagnosis and realization of life with Alzheimer's Disease. If anyone wants to read a really TRUE story, this one would be it.

A small world story - I mentioned to my brother that Pat's wife had worked in the same school district that my brother works. I told him the name of the school and sure enough, he knew her. He said she was one of his favorite people. He had heard that she was sick, but he never knew what happened to her. He started reading the book with a whole new outlook, this time through familiar eyes. He was so saddened that he now knows another person with Early Onset Alzheimer's.

Wednesday, December 3, 2008

Swollen Shoulder

Thanksgiving weekend proved to be uneventful, just the way we like it. Mike's aide was not in alot (due to the holiday and the death of a friend), so I got to spend more time with Mike. It was hard to do when so much other work had to get done, but true to form, I looked at it as a gift. I would probably have been running all over, taking time here and there to be with Mike, but this situation "forced" (I say that in the most special of ways) me to spend much more time with him. Special time that I will never get back, so for that I am thankful.

Last night though, our uneventfulness came to an end. As I always do when I get home, I go over to Mike and hug and kiss him. He's lost enough weight that his shoulders and back are very boney. Last night though, I noticed that his one shoulder was swollen. Right in front of his left shoulder blade, it looked as though someone cut a tennis ball in half and placed it under his skin.

Today I will be trying to get an answer as to what that is about. Is it an infection? Could we have pulled his shoulder out of it's socket when maneuvering him? (a thought I don't even want to imagine) Could it be arthritis? All I know is that he didn't move his arm at all last night and he seems to be uncomfortable. I will be calling my "friends" at hospice to see what they recommend. My fear is that they will tell me to take him to the hospital. He would most likely be there ALL DAY which would mean, no drinking, no medicine, no food. If Mike goes one day without his allotted nutrition, it could be a disaster - that's how fragile he is. I hope they will be able to send a doctor over first to evaluate it. We'll see what happens and I will let everyone know.

UPDATE: The hospice nurse came this morning, but as I expected, Mike's shoulder was no longer "as swollen". I took pictures last night because I had a feeling that would happen. Quite often, something will be amiss with Mike, then as fast as it came, it's gone. She said that maybe his shoulder was dislocated -the ligaments and tendons are fragile and since he's not mobile, they become atrophied. Maybe sometime during the night, it "went back into place", but he didn't move an inch last night, so I'm not sure how that could happen. She told me what to look for in case of an infection. Otherwise, he seems to be doing OK.