Sleep

It seems like since the beginning of June, I haven't gotten more than 4-5 hours a sleep a night. First it was Mike's "cold". His coughing and raspy gurgles kept me awake and scared. Next came his coughing "spasms". He would cough so hard and for so long, at times it seemed like he couldn't catch his breath. Now, the "twitching" came back. He seems to go through periods of having it bad, then not having it at all. The twitching has begun again. It usually starts around 5:30, then subsides once he gets his medicine. Last night he had episodes at 11:30, 1:00, and 2:30. Each time I lay and wait, I try to calm him down- as if my words and stroking are magic - as if he has control of these movements. They unnerve me and upset me. Does Mike know what's going on? Do they bother him? Is he scared?

Then after I think I have reached my limits, I am given "signs". Just today I read an article indicating that when a person with AD is admitted to a nursing home, the disease appears to progress more quickly. After I read something like this, I realize that all the sleepless nights are worth it. There is no place else I would want Mike to be than at home, with all those that love him, in the place he's most comfortable.

Questioning

Last Thursday Mike fell out of the Hoyer. I was not home when it happened and only Nathan was in the room with Mike. He appeared to be OK that day. Friday he was also "OK". On Saturday though, he started making groaning sounds, but only when he was being transferred, moved around, or when he had to cough. I started thinking that maybe he bruised a bone or hurt a muscle in the fall. In all other aspects (eating, drinking, sleeping etc) he appears to be ok.

One of THE WORST things about this disease is Mike's inability to communicate. Am I assuming he's hurt from the fall, when maybe something else is going on? Is the "groaning" indicative of something more than a bruised muscle or bone? I will be watching and waiting. The down sides of taking him to the hospital to be checked out are so numerous (trust me, we've been that route NUMEROUS times), that I am trying to avoid it. I pray that these sounds of discomfort will slowly disappear and that my worries will be for naught. It's both frustrating and sad that Mike cannot tell us what's wrong. The pressure on me to be able to determine when something is "not right" is so strong, that at times it's overwhelming. What if I'm wrong?

Alzheimer's Disease is indeed a cruel and unforgiving disease.

Summer Begins

The kids are so excited that school is FINALLY over. Brandon finished the school year by taking the 10th grade biology Regents (he just finished 8th grade) and scoring a 93. WOW!!! We haven't gotten Courtney's grades yet, but I have no doubt they will be great. They will be working at their grade school's summer camp again. They really seem to enjoy it since they know all the teachers and students. Courtney will be going to her orienation on July 6th for her volunteer job at the hospital this summer.

Upsetting news - on Wed. Mike fell out of the Hoyer as Nathan was transferring him to the Geri Chair after his nap. Thankfully the kids, my mom & Walter were there to help get him up. I have been watching Mike for any signs of distress, but so far so good. It seems that he didn't so much fall, as he "slid out", according to Nathan. Getting a call from Courtney at work though saying that "dad just fell" made my stomach drop. It's always something :(

Alzheimer's Foundation of America wrote a piece about Mike for a mailing they will be sending out to raise awareness and funds for the "Quilt to Remember". I am thrilled that it will be displayed in Garden City in November so we can go see it again and see how much it has grown (we were at the inaugural viewing last November in Central Park). It is such a wonderful tribute to all those suffering. As AFA says, "it gives a voice for those who can't speak for themselves".

Happy Summer to All..........

Crazy Weeks

The last two weeks have been difficult to say the least. Mike has been battling this cold, which seems to slowly be coming to an end. The whole time though, was very stressful. The "glop" in his throat was what got me concerned. Not being able to spit it out, always concerned me. Thankfully, he has been sneezing alot and that's creating the same outcome (no pun intended). The last 4 nights though have been terrible. Mike has been waking up having horrible coughing fits that sometimes make him seem like he cannot breath. They often last up to an hour. It's EXTREMELY unnerving and scary, especially when I am all alone at night trying to calm HIM down. Without jinxing the situation, they seem to not be lasting as long, but every night I go to bed afraid and pray they will not happen again. I'm not sure if Mike understands what's happening or whether he can control them.

Brandon graduated Sat. from 8th grade which was, of course, bittersweet. He was Solutitorian and had to give a speech, which he wouldn't let anyone of us read or review. I was nervous for him, but once again, he came through with flying colors and made me very proud. I couldn't believe he wrote and presented such a beautiful speech. Of course, all I kept thinking that day was how proud Mike would be of him and how much I missed having him there with us. When Brandon started that school at age 3, our lives were so different and we held so much promise. How things have changed.

I always pray that I have not taken too much time away from Courtney and Brandon by keeping Mike at home. While they have consistantly told me that they would NOT want him anyplace else, only time will tell if I made the right decision. I pray that they have learned unconditional love, compassion and patience - all of which Mike had in abundance. This is apparant by the love and support we have gotten over the years from Mike's co-workers and friends that knew him well. I am always thankful when the kids get to hear stories of Mike from others, of how much he did for people and what a wonderful person he is. Their kind words are a testament to Mike and all that he is.

Loneliness

I'm not sure if it's the rain today, the lack of sleep, caring for Mike as he battles this bad cold or Brandon's upcoming graduation, but I am feeling terribly sad these days. I guess I realized how very difficult it is to care for a spouse with AD. When someone is caring for a parent, grandparent etc., they usually have their own spouse to help them through the difficult days. They have someone to lean one, to count on, to cry with, to get a hug from. When your spouse with AD is the person you would normally get all this support from, it's a very lonely world. When things happen with Mike, everyone turns to me to ask "Will he be OK"? When the kids are scared, they turn to me for encouraging words.....who do I turn to?

It is very different caring for a spouse. I'm sure (I hope) this sadness with fade, but for now it's here and I needed to vent.

Running on Empty

For the last 4 nights I have gotten little, if any, sleep. Mike developed a cold last week and the nighttime has been very tense. He had originally slept in our bed, but he had a few bad coughing spells, so I decided to let him sleep in the hospital bed in the LR. (Even though he sleeps on "wedges" in our bed, I felt they didn't give him the height he needed to be raised up). I needed to be near him, so one night I slept next to him on a cot, the next on his geri chair. Neither night I slept. He slept much better in the hospital bed, but I was NOT comfortable and very much on "alert". His cough is very lose, and for most people they may have been over it, but unfortunately Mike does not have the ability to cough anything up. I decided to take him to the doctor today (Last week a nurse came by twice to check his lungs - which were OK), but the only appointment I could get was 6:30 tonight. I had to quickly arrange for ambulette transportation which is hard to do, for an appointment after hours and on such short notice, but the insurance company found one. I will feel much better after he sees the doctor, and I only hope it hasn't become anything bad. Please pray.

After a few tense days, my BIL is being discharged from the hospital today. Imagine, quadruple bypass surgery on Fri. and being discharged 6 days later, it amazes me. We're all very glad he seems to be on a quick road to recovery.

Mike still has his cough. Not so much during the day, but always when he wakes up and sometimes at night. I asked his doctor to prescribe an antibiotic for "preventative" reasons and he agreed to. I just don't want this simple "cold" to turn into something much more serious. Even with the antibiotic, there's always a possibility of it turning because of Mike's low immune system, but hopefully, it will keep this illness at bay. All prayers are welcome.

What We Take for Granted

The nurse came yesterday and thankfully said Mike's lungs are clear. His BP and Temp were also OK. I am always concerned and never take anything for granted. Yesterday was a good day, so we'll see what today brings. Things can change on a dime.

This morning I got the BEST gift from Mike. Each morning as I leave for work, I bend down to give him a kiss. Today, HE GAVE ME A KISS, lip puckering and lip smack included. He hasn't done this in I can't remember how long and it made my day :) I felt lighter as I headed into work.

My BIL seems to be on the mend, so far so good. We're all very relieved to hear this and we are updated daily with my sister.

Today, Mike started a cough that I didn't like. I'm waiting for the nurse to come over and listen to his lungs, and depending on what she says, will depend on what I do. I'm not sure if he has congestion, or just "glop" in his throat. If congested, I will be checking with his doctor on treatment because I DO NOT want him in the hospital with pneumonia. I know I don't have a say, but I'm just praying that everything is OK. He's been doing so well, I would hate for him to have another set back.

BIL update

I was just told that my BIL is out of surgery (5 1/2 hours) and is doing fine. He had a quadruple bypass. I truly believe that his stress test was a gift from God, without it, who knows what would have happened. He is in his ICU room and they are trying to get him to take deep breaths and cough. It will be a long road, but one I'm sure he will be thankful for after all is said and done. We are so thankful that all went well.

Nathan should be back on Monday and Mike's been more cooperative in opening his mouth for food. Hopefully the medicine for the thrush is working. He's coughed a few times though and as many of you may know, I'm such a "worry wart". I just hope this was a passing cough and nothing will come of it.