Last Night

Moaning, coughing, congestion. Nebulizer, cold cloth for forehead, tylenol. Change Mike, re-position him. More tylenol...then he had a "S".
I decided not to take Mike to the ER today to have his shoulder re-set. I was concerned about taking him with the fever and the fact that they would never let him go. He's been coughing on and off all day, yet still sounds congested. His aide thought Mike had another "S" when he woke up from his nap, he's out of it right now.
Hopefully tonight will be quiet and uneventful.

What else....

I called Hospice last Monday and they agreed to put Mike on Cipro. I told the nurse that I needed them to do this. I know they believed that the fevers were not from an infection but just "part of the process", but I needed to know that I did everything I could for Mike. If the antibiotic didn't work, then so be it....I would have known that I did all I could.
By last Wednesday, Mike was completely different. No coughing, no fever. He actually even gave us a smile twice within the last week. Now I'm not completely oblivious to the reality of this disease and the course it will take, but for now, the Cipro helped Mike and I'm glad that I insisted on it. He's MUCH MORE comfortable and not struggling at all.
Mike still has the 4 pressure sores AND just yesterday we realized that his shoulder was dislocated again. It happened once, years ago while he was in the hospital and they re-set it there. I called Hospice and his nurse came to check it out. Yes, it was dislocated, but they couldn't do anything to fix it. I will have to take Mike to the ER to have it put back in place. Right now, he has it in a sling, and surprisingly, he doesn't seem to be uncomfortable. I DREAD taking him to the ER - with his compromised immune system, who knows what he will pick up in the hours it will take for them to see and treat him??? I tried finding an orthopedist who knew one of his doctors, who maybe could take him quickly in their office, but that didn't work. So tomorrow morning, after he has his breakfast, I will call an ambulette to pick him up and take him to the ER. Ughhhhhhhhhhh.

Tough Weekend

This past weekend was tough. Mike ran a fever of approx. 103 degrees on Fri, Sat., and Sun., nights. It's only been at night though, which is odd. Saturday we had a substitute aide and he did NOT do well at all. He only had a few bites to eat in the morning and evening and just about 4 cups of Gatorade instead of the normal 5-6. It's no wonder when the agency's nurse came for a visit Mike's blood pressure was 70/60. Normally, it would have freaked me out, BUT this particular nurse always gets low readings AND Mike was not very hydrated. I'll see what happens tomorrow when his regular hospice nurse comes. The doctor who had treated Mike for years after he was diagnosed, came over to visit on her own time, on Friday afternoon. Overall, she was pleased with what she saw, bearing in mind that she had not seen Mike in 6 years! She looked at his 4 pressure sores and surprisingly, she was not nervous about them. I HATE THEM and I think they're getting worse. I guess because she has seen so much worse over the years, she told me that they were "nothing". She also said that they look bad to me because for 10 years, Mike had never had a sore from his care at home. His skin has always been so well taken care of, now that it seems to be covered in pressure sores, I am beside myself. Each of the last four nights, we would get Mike into bed around 7-7:30 and he would start out OK. Then shortly thereafter he would start coughing - sometimes lasting for about an hour. Then because he was coughing so much, he would be breathing more rapidly. This is frightening and Brandon had a difficult time with it on Saturday night. Mike eventually calmed down, but the reality of what the kids are going through really hit home for me that night. I lost my dad when I was 44 - they have been losing their dad each and ever day since they were 7 & 9. They suffer losses each and very time something different happens with Mike and my heart breaks for them.

A True Test of Faith

My faith has been tested MANY times over the last 10 years, and I am honored to say that Mike was the one who has taught me the true meaning of FAITH. The life he has lived has been terribly unfair, yet he ALWAYS kept his positive thoughts and faith that God would always guide him. Mike and I met in July of 1985 when we worked together. I had met his mom only once, but immediately I realized there was a problem. He told me that they were taking her to be tested because she was having alot of problems with her memory. They originally thought it was menopause. One day, Mike got a call from her saying she was at the supermarket and "couldn't get the car to start". When he got there, she was sitting in the driver's seat with the keys in the ignition. Mike started the car with no problem. She forgot what to do with the keys. His dad hired an aide to stay with her during the day and that worked well until his mom fell and the aide couldn't pick her up. I forget the actual reason for it, but one fateful day in December of 1985, they decided to take her to the hospital. Once there, it took 4 orderlies to hold this 5 foot nothing, 95 pound woman down. Mike was only 20 when he witnessed this life changing event. His mother remained hospitalized until they performed a brain biopsy, where they determined she had Alzheimer's Disease. We knew nothing about this disease or what it was capable of. Since Mike's dad worked full time in NYC and he and his brothers were in school, they decided to have her placed in a nursing home (NH). The NH happened to be a few blocks from St. John's University where Mike attended college. He would visit his mom almost every day after school and we went together every weekend. It was extremely difficult for me to see her this way and Mike was very sad that I never knew his mom when she was "well". He had an extremely close realtionship with his mom and her illness affected him terribly. At that time they were very lucky to even get her into a NH and it was only because of his Uncle's connections and the fact that his mom was a nurse. No one wanted to take a 45 year old woman with Alzheimer's Disease. The bond between nurses was very strong and she was always well taken care of. Mike and I were engaged in 1987. We would visit his mom, show her the ring and talk about our wedding plans. Mike was heartbroken that his mom was alive, but not really able to fully enjoy the happiest day of his life. Mike and I were married in October, 1988. In February of 1989, his dad got sick. We all thought he had a rough case of the flu. Nothing was staying down and he was losing weight. His doctor ordered an endoscopy which showed a mass on his esophogus. He ordered surgery to remove and biopsy the mass. Mike never got over the guilt he felt when he and his brothers went to visit his dad in the recovery room and they all gave him the thumbs up. They did this to keep him strong, when in fact it WAS cancer and it spread to his stomach, liver and pancreas. Mike now had his mom in a NH with Alzheimer's Disease and his father at home dying of cancer, and he was only 24 years old. I could not believe how strong he was. His faith was undeniable and I was in awe of his positive attitude. His dad lasted 10 months. Both Mike and his oldest brother had been married and were out of the house. Only his middle brother still lived at home. Very early on the brothers decided it wasn't fair for Bob (the middle brother) to have to care for his father all by himself every weekend, so they set up a calendar to share responsibilities. I remember quite vividly the one weekend Mike was supposed to care for his dad, but he had to be away for work. We were married less than 6 months, but I offered to stay with his dad for him. It was a night that I will never forget as I sat with my father-in-law as he threw up constantly into a basin. Nothing stayed in and the pain I saw him go through was unbearable. I was relieved when Mike's Aunt came early to relieve me. I quickly realized that in the short time I knew Mike, I never really got to know either one of his parents when they were well. Over the next three years or so, Mike lost three grandparents and a favorite Aunt. It seemed like we lived at the funeral home and to this day the smell of fresh flowers only reminds me of funerals. Despite all this, Mike soldiered on, his faith carrying him forward. In 1991 Courtney was born and it was probably the ONLY TIME I saw Mike really heartbroken. As he saw my entire family there celebrating with us, there was no one there from his side of the family. His dad had passed away and his mother was in the later stages of Alzheimer's. The fact that neither parent got to meet his children was Mike's deepest sadness. (Mike's mom passed away in August, 1992. By that time she had Alzheimer's for 7 years...she was 52) Still, Mike moved forward, deep in the belief that everything happens for a reason and we will all be OK. In 2001, Mike was diagnosed with Young Onset Alzheimer's Disease and the rest is history. I never had the heart to actually tell him that since he was diagnosed, both his oldest brother and his grandmother, along with my dad, had also passed away. I'm sure he was aware of the additional losses, but I could never bring myself to actually tell him. He has suffered so much already. And he's still suffering to this day. The bed sores and fever and some water retention have been coming and going for weeks now. I cannot help but ask myself, "WHY"? Why should this happen to someone as good as Mike, someone who has been through so much already? It just doesn't seem fair. I imagine Mike telling me "not to worry, everything will be OK". When I would ask him how he knew, he would say to me, "I have connections". I often lay next to him at night and ask if he still has those "connections". Then I realize that if Mike was able to get up each and every day with renewed strength and faith, despite all his loss and suffering, then so can I. I do this for Mike and hope he is proud of me. He taught me well.

10 Years of Alzheimer's

It's been a while, but nothing much has changed. Mike still had 4 pressure sores (one on each side, one on his shoulder and one on his bottom). They get better, then worse, depending on the day. It's difficult to keep him off of them because no matter how we position him, he's lying on one of them. He's still getting fever now and then - yesterday he had a 103.5. He had been coughing again before it shot up, yet the hospice nurse doesn't think the fever is from an infection. I'm concerned about the sore on his shoulder because it looks like it's scabbed over, but it's all red and inflamed around it. When I researched bed sores on line, they said that dead skin (which often looks like a scab) should be removed, otherwise an infection could form underneath (the pus will have no place to go). I will have his nurse check it out tomorrow. Brandon is still contemplating where he will be going to college in September and Courtney is still steadfast in her thought that she will be commuting in September so she can stay home and help me with Mike. I don't believe this will be a good choice for her because her commute takes two hours each way AND next year she will begin her "hands on" film classes which will require alot of time shooting and editing. What she doesn' realize is that if she has to stay late to work on projects, she won't be home to help me anyway! I'm hoping she will come to her senses before September! The Alzheimer's Association arranged for a wonderful attorney to help us with the issue regarding social services and Mike's overage. Of course, it wouldn't be easy. I now have to file for "limited guardianship" so I can form the Trust for Mike. The hearing is set for Surpreme Court on April 14th. This week will mark the 10th YEAR of Mike's diagnosis. It's been a long and difficult road.