Alzheimer's marches on

It seems that for awhile Dave had been pretty stable in his progression. With the increase of his medication the doctor was careful to inform us that Dave would not regain any of which he lost but the progression would slow down. SLOW DOWN. We heard that and yet we knew that one day Alzheimer's would rear its awful head and once again take another piece of Dave.

Dave has now progressed to having the hallucinations. These are not what most people would consider "bad" hallucinations but enough to cause slight fear and confusion.  Dave had described them to be more like "shadows", a quick "flitter" of a shadow that makes him take a look but realize that nothing is there. At first he wasn't even sure if it was happening, a few times he thought it was just the cat walking across the floor but then realized that the cat was in the back room or in the garage or sleeping curled up on the couch. I am not sure how long he has been having them because he didn't tell me about them until we happened to see something on tv about dementia and as usual our conversation turned to what he was experiencing.

He has also been experiencing some muscle problems. I have noticed for awhile that his gait had become slower and stiff. I am not even sure other people notice the difference in his walking. I wasn't even sure I was actually seeing what I was seeing. Do you know what I mean? You know you think you are seeing something that isn't right but then you wonder if you are just imagining it or thinking the worst when its really just something minor. I finally asked him if he felt "different" when he walked. He said "my muscle's feel like someone has a tight grip on them while I am trying to walk" and "sometimes I feel like I am not sure I am walking right, like I have forgotten how to walk".  I asked him if it gets better when we go on walks, do his legs begin to relax and move better. He said "no".   He has difficulty concentrating on his walking when in a crowd. He has the inability to do more than one thing at a time.  His tremors are more pronounced on occasion and sometimes even if you can't see his tremors, when I hold his hand or hug him I can feel his body tremor.

We are now sleeping with a night light on in the bedroom as he says that for an instant when the light goes out and it is dark he gets fearful. It takes him a moment to remember where he is at then when he remembers he can fall asleep.

Last Thursday we went to the doctors. I really like our neurologist. I feel he is educated and informative in regards to Alzheimer's and always tries to be positive with us. I like that he takes his time with us, address Dave directly, and is assuring in his explanations. He gave Dave two choices, (after many questions and examining him) one-take a calcium supplement 1x/day or two-take a very small dose of a muscle relaxant. Dave immediately said "I'll take the supplement." The doctor said "Very good." but did say if he did not feel any difference in his muscles after a few weeks to call and he will need to be on the relaxant.  The positive things he said: "Your communication is much better." and "See it is just a minor problem, easily taken care of." You know he is probably right but to us, especially for Dave, it feels like a HUGE deal. Its huge because we know there is no turning back, the progression is starting again and we know nothing can truly stop it.

Dave has quit attending church. The people and noise seem chaotic to him. He doesn't know where to look and can't concentrate on the lesson. For now Gabriella and I continue to attend and like Dave says, "I sleep the entire time you are gone anyway."  (He sleeps more now and gets up later than he used to.) It worries me when I leave him alone but not because I fear that he will wonder off but I fear that he will forget where we are and become scared or that he will do something and get hurt or that he will take the wrong set of pills. That is how I felt for sure last Sunday and when service was over I was out of there as quick as I could get out. And sure enough, Dave was already up and showered then told me he had taken the wrong pills, (his pills are in one of those am/pm pill containers) but the good thing was, as soon as he put them in his mouth he knew it wasn't right so he spit them out and threw them away! So now the plan is to put away the container and I will only leave out the morning pills so no more worries.

Once again our house is in a state of transition. I thought I had thought through enough of what could be happening and had prepared and organized that I wouldn't have to do much more but I was wrong.  I am learning that each time I see Dave having difficulties it will require some new way of doing things. You have to think outside of the box on occasion.  Eventually our house will be down to bare minimum in furniture as it will become harder for Dave to maneuver around.  Whatever needs to be done to keep him around, safe and happy I will do. I hear being a minimalist can be very freeing!!

Monica

summer recap

I can't believe that summer is considered over already. With the start of the school year I feel that those leisure days are over and we are now in our more structured mode of life. Structure-this is how our life needs to be lived from now on. Structure makes the days for Dave more predictable and much easier to get through, but for the last couple of months we have been anything but structured! 

So, what have we been up to?  Well, first we had visitors from all kinds of places. From the past post you know we had our sisters here (one from Grandview and one from Virginia) and a group from Louisiana. A couple weeks after our Louisiana "friends" were here we had a youth group from a town down by Lake of Ozarks come by.  They cleaned up from behind our shed and took away the brush that was not hauled off by our local trash company. It was a "small" job but really kinda big for me as I no longer have to worry about cleaning and hauling away "creepy" things from behind the shed and with each job that is getting done more and more of the clutter is cleared out and the less Dave worries about what and how things will get done.  

I feel like we did a lot of traveling. Our "big" trip was driving up to Illinois to check out a college that Gabriella is interested in. I am trying to keep things as close to normal as possible and one of those things is checking out colleges, life goes on and I am determined to keep us moving with it as long as possible. I knew that this was going to be HUGE for Dave so I asked Linda to come along with us. The trip was really just a 6 hour drive but it was a 5 day trip for us!

"Old Main" the site of Lincoln and Douglas debate.

Gabriella sitting in the chair Abraham Lincoln sat in!

The college had open house on Friday July 27th.  To try and make this trip easy I knew we would have to do it in steps so Dave wouldn't become too tired.  We drove up to KC on Wednesday and stayed at Linda's (my sister) then we were driving up on Thursday so we could all rest before the open house on Friday.  We stayed over Friday then drove back to KC on Saturday where we stayed the night then made the trip back home on Sunday! Whew! What a trip! But it was exciting,especially for Gabriella! 

Sandra, Manuel, (proud parents), Damian

 Just 2 weeks later we were back up in Kansas City! My sister (Sandra) had a reception for my nephew who is preparing for the Jesuit Novitiate. He will be leaving for St. Paul, MN and entering on Aug. 25th!

Gabriella, Damian, Me, Dave

So very exciting! I love my nephew so much and I know that God has wonderful plans for him.  This is not something that is taken lightly, it was a long process that my nephew prayed about and listened for God's direction. He did his own type of sojourn until his final decision was made! There is still a long journey ahead but what a glorious journey it will be!

I am not sure what we did between trips. Gabriella started volunteering at the Ronald McDonald House, started getting ready for school and took violin lessons.  I would like to believe that Dave did fairly well on the trips but it was at home that I saw the effect the traveling had.  It took a few days of rest for him to recuperate. He was a "little lost" when we would come back until he rested well enough to feel reoriented to the house again.

He became more "lost" at my sister's, he said there were too many doors when it was time for bed so on our second trip there I tied a scarf on the door knob so he knew which bedroom we were in. He also kept taking things from the bathroom counter that he thought were ours (it was actually Alyana's toothpaste).  The scarf on the door knob and leaving the hall light on were tools that easily fixed a couple of problems but I know that eventually we will be staying in a hotel where there will be less confusion and I can set up all of Dave's personal items on the counter like at home so he can easily find what he needs. Our trips will become fewer as his need for familiarity and security will be important for his mental and emotional well being.

In Illinois the large crowd we encountered when we first entered the building for orientation became too much for Dave and he had a wave of anxiety. He became light headed, cold and clammy.  Linda sat with him in the hall while Gabriella and I went to the first session.  Linda said he did a lot of talking about what he is going through, how he feels this is effecting us (the family as a whole) and was "emotional" (she said he teared up).  I have noticed he is very emotional now. I feel that I made the best plan having my sister come along, she not only helped by staying with Dave but helped with the driving and my confidence. Eventually Gabriella and I know that we will be making college trips by ourselves but at least Dave has been to a couple of colleges and we plan another trip to College of the Ozarks which will be close enough that Dave can come along.  I want Dave to continue being part of the Gabriella's last couple of years in high school so we are trying to do everything possible to maintain a schedule that allows for rest and yet stimulating enough to keep his mind going.  

I feel like we are in a race that just becomes slower and slower with each passing day. There is grief every single day as it becomes more and more apparent that he is struggling with more things and we are constantly adjusting our lives.  Exhaustion is a normal state of being for me.  My mind is constantly going and in between the worries are prayers. I pray not just for Dave but for everyone I know. I feel that is the one thing that I can continue to do as I have had to resign from the board of directors to The Neighborhood Life House.  It has broken my heart as the ministries that are going on there are so dear to me. That season is over for me. 

One day a sweet little package came in the mail. It was a book and a cd and a note from the leader of the group that came from Louisiana! The book was written by his wife, it chronicled the journey they went through after suffering a family tragedy. (the name of the book is "God Enough 'trusting God when life doesn't make sense' ") It is filled with scripture that has also spoken to me! It is the first time I have actually read something that spoke to everything that I am feeling right now every single day! The cd contains music that is written and performed by Brad (Ewing).  The songs were Brad's way of dealing with his grief and his reliance on God.  Just last week we received another note from one of other members of that same group. So i guess later today it is time for me to write them both back.  How wonderful God is! He brings in just the right people at the right time to let us know that He is ALWAYS taking care of us!

Monica