On the Mend

I am happy to report that after 4 days of fever, and terrible chest congestion, Mike seems to be on the mend. He was started on Cipro last Thursday and he has FINALLY been able to get some "gunk" out. He still doesn't seem 100% to me, because I have a good feeling he might have had pneumonia or close to it. He sounded TERRIBLE.
Yesterday Mike and I celebrated 25 years together. Although it wasn't out wedding anniversary, but the anniversary of our first date. As expected, I was a bit emotional. When you're that young, you don't even know if you'll have another date with the person, let alone get married, have children and eventually have to deal with a disease like Alzheimer's.
When I woke him up, I told him what day it was and gave him a big kiss (as usual). I asked him for a smile and guess what....he gave me a BIG SMILE. He's been very stingy with those lately, only giving them to Courtney, but it made my day when he lovingly gave one to me. Was it a reflex or did he understand? I don't know, but I will ALWAYS believe that Mike is in there and he knows everything going on around him.

I'm tired of Alzheimer's

Mike has been sick with fever and chest congestion since Tuesday evening.
He started with the "gurgle" on Tuesday night and by the time we got him into bed, his fever was 102.3. He woke up Wednesday with no fever (it appeared to have "broken" in the middle of the night). He ate and drank his usual on Wednesday, but by bedtime, his "gurgle" came back as well as his fever. Overnight, his breathing was very loud and he sounded very congested. I didn't sleep much - as I was checking on him all night: I turned him to try to losen stuff up, gave him tylenol, cleaned him etc. I didn't go into work yesterday and called hospice. Instead of sending someone, they prescribed an antibiotic, which is fine - but I still think they should have had someone come by to check.
I was up again all last night. We put Mike in the hospital bed in the living room because we can raise his head better there (we have the wedges in the other room, but the hospital bed allows us more incline), and I "slept" on the couch. I am even more exhausted from not sleeping again last night and today I had to come into work (my boss is out playing golf).
Lying there last night I started thinking about all the other sleepless nights that I've had the past 9 years taking care of Mike and the various illnesses and maladies he's had to deal with. Whether it be at home or in the hospital, there have been quite a few times I watched the clock as minutes turned to hours, and hours into days.
I recently bought a bracelet (a portion of the proceeds go to Alzheimer research) that sums it all up.... I'M TIRED OF ALZHEIMER'S !!!!!

Mike & Kids

The picture with Mike and Brandon is at Shea Stadium and was taken when Brandon's Cub Scout Troop was invited to walk on the field with the "flag quilt" they made in memory of all those who died on 9/11 (I believe in 2002 - one year after diagnosis). The picture of Mike giving Courtney a ride on his bike was taken in 1992.

I wanted everyone to see pics of Mike before the disease took over.

Anniversary

Today is the fifth anniversary of my dad's death, but I feel the pain like it was yesterday. I miss him EVERY DAY. In fact I keep his outgoing answering machine message on my voice mail so when I'm having a really bad day, I can listen to his voice. He was my rock, my strength and my "go to" person. I don't feel like I have ever fully mourned his loss - I never had time to break down because I had to be there for Mike. I didn't want to be too upset around Mike (never did, never will) or the kids, so it left me with very little time to grieve. I am having a very difficult time this year because a very dear friend is losing her dad as we speak. He had been ill, but took a bad turn on Monday and hospice was called in. They are keeping vigil around him, but it's only a matter of time. I feel she is blessed that she will be with her dad when he passes and it hurts me more than anything to know that my dad was by himself. I worry - was he scared? Did he know what was happening? Did he feel pain? My faith tells me that whatever pain he felt, passed quickly as he met up with his brother and sister and parents on the other side. I still wish he had not been alone.
Even though my friend is in the process of losing her own dad, she found the right words to comfort me...
"I find a lot of consolation in the fact that we are with him around the clock, but I will tell you as I watch him resting that even with us there in the room he is disconnected from us, because he like I am sure your dad was is being called by God, and although you were not with your dad, he was not alone, god and the angels that came to take him were with him".
Death is a part of life, and like life, it hurts sometimes.
Dad, I miss you each and every day. God bless you. I love you.

Up & Down

I have been very concerned about Mike lately because of the HEAT. Even with a/c in the living room, you can still feel the heat and humidity. We have been focusing alot of keeping him hydrated. Yesterday he was OK, but last night, as we began to move him into bed, he started making moaning sounds. The mere sound of them get Courtney and Brandon upset. It brings them back to a place when Mike was REALLY sick (and was given Last Rites). Last night, when Courtney helped me with Mike, she burrowed her head in the pillow so she wouldn't hear him. I checked his temp. and he was OK, but I knew he was uncomfortable, so I gave him a Tylenol suppository. He kept burping, then coughing. I was concerned his burps would lead him to aspirate when he swallowed. At 11:00 last night he had a 101.2 temperature. I gave him Tylenol once again and at 6:30 this morning, his fever finally broke. When the hospice nurse came for her weekly visit, she said he had no fever and appeared OK. No one can give me an answer as to why he ocassionally gets these fevers. I assume it can be one of two things: the area of the brain that controls temperature is affected -OR - he does aspirate, but then coughs up whatever went down. As always, I worry about the day he will not be able to "cough up". He seems to be having more trouble swallowing also. He keeps things in his mouth longer and makes the "chewing" motion, as if he knows what he should do, but has a difficult time making it happen.
What's got me a little "uneasy" is a call I got from Mike's Aunt and Uncle in Mississipi. They called to tell me that they were going to Scandanavia for 2 weeks and wanted to give me a phone number where I can reach them "if we needed them for anything". They have been away alot, but they've never done that. I'm trying not to dwell on the uneasiness.
On a more positive note, I was able to FINALLY repay a portion of the generosity given to us. A dear friend was diagnosed with PLS (a "relative" of ALS) and she has started having difficulties getting around and speaking. She set up a system where people can volunteer to help them out - making dinner, gardening, cleaning - and Courtney and I made and brought dinner to her on Friday night. It was something so small, but I finally felt like I was giving back. Lord knows this woman and her family deserve SO MUCH... they have given to so many others and helped so many people throughout the years. I have alot of help to give before I will feel completely satisfied, but this was a start.

Belated Father's Day

Father's Day 2010.


These pictures say it all.

Thankful

Since Mike has not been able to negotiate the stairs, we have not been able to use our bedroom. Our bedroom, is the room my brother moved in to. Mike and sleep in the front room of our house that was once a porch, which had been converted to an extension of the house before we moved in. It's big enough only for our bed....I have no bedroom per se. I sleep between Mike and the wall and I have to slither in and out . I cannot get out on my side of the bed. My clothes hang in a canvas "wardrobe" that is strategically placed in our DR. My shoes gather at the bottom of our stairs. I don't have a nighstand, dresser or closet. My "stuff" is scattered throughout the house and it drives me CRAZY. I'm jealous when Courtney, Brandon and my brother have a room to retreat to when they want to be alone. It's difficult for me, because the room Mike and I sleep in, is off the living room and has very little privacy. I have no place of my own to go to. This bothers me alot sometimes, but at other times......

.....I'm thankful that I can lay next to Mike in OUR bed in OUR home. There are others that don't have a home, or a bed next to a wall that they have to slither away from. They don't have the luxury of heat in the winter or a/c in the summer. Whenever I find myself feeling bad for all that I don't have, I do my best to remind myself of how blessed I am, and I am so thankful for all that I DO have. I know I've written about this before, but this lesson bears repeating.