The first day of a new job.

Do you remember that feeling you get the first day of a new job? There is always some excitement mixed with anxiety. Sometimes you might question your decision about accepting the job. Despite the experience you know you have you wonder can I really do the job?  What if I do something wrong or the ideas I have don't pan out? What if, what if, what if......!

Well, I haven't started a new job, at least not in the traditional way. I didn't apply, or have interviews. I didn't have to sit by the phone hoping to hear good news. But I can tell you that every single day feels like the first day of a new job. No two days are ever the same. One day Dave has no problem carrying on a conversation, his recall is good and he can carry through a task without hesitation. The very next day it could be the complete opposite, (actually it can all happen in the same day)!  Maybe he can complete a task without problems but unable to complete a sentence because he can't think of the words.  Then there are the days when he is unable to complete a task, can't finish a whole sentence and will even get turned around in our little house.  There are also days when he has no interest in anything and it can be difficult to coax him into doing an activity. I am never sure what to do on some of those days. Every single day is different and every single day feels like the first day of a new job. What works on one day doesn't work on another day.

What I hate the most about this "new job" is that for Dave I am sure the feeling is multiplied to a degree I will never know. Right now this past week I have noticed that Dave is having more and more difficulty with his words...he can't remember the words and so he only completes half a sentence. He is needing more coaxing to participate in functions that he did before, painting at Spiva and the Memory Buffet (social group for dementia patients through the Alz. Assoc).  He has even lost the interest in painting (pictures) at home and working in the yard. His sleeping pattern has really changed, he had always been an early riser, even after his diagnosis he was still getting up early, now he sleeps in until 9:30 or 10:00 no matter what time he goes to bed.  Our mornings are really slow and I have only about 2-3 hours of afternoon time that he is feeling clear and we can get "chores" done or errands ran.  He also takes afternoon naps, something he never did. Physically you can see that he has lost weight.

In regards to his weight, it is a concern that will be brought up to the Dr in December. He has gone from 150ish to 140 lbs. It is not just the numbers that are concerning but the way his cloths fit. No longer does he fill them "out" but some of his shirts now just hang on him and his jeans, he pulls his belt so tight to keep them up that they bunch in the back. I was going to buy him a new pair of jeans the other day when we were at Target but he refused. I am sure he is having difficulty seeing how much his own body is changing, its just a reminder of what is going on.  Dave will eat 3 main meals everyday but some days he will snack a lot. Coming up with some healthy snacks that he will eat has been a trial and error.  Right now he has been snacking on nuts, seasonal fruit, pudding, apple sauce, and I try to keep hard boiled eggs in the refrigerator. If he doesn't eat them we make tuna salad. I can't get him to completely break his cereal habit in the morning but I can convince him some days to eat some oatmeal or eggs.  Some of these changes I knew to expect I just wasn't expecting them so quickly.  I was concerned that maybe there was a problem with his blood sugar but from past lab work everything was normal, even the doctor indicated that his blood work was "perfect".

Like any good employee who desires to learn about their job I am researching,attending "trainings", making connections with agencies and even with other caregivers through social networking. I am  trying to keep one step ahead of this disease as best I can to help Dave stay as independent as long as he can.  One of the things I am striving for is to learn to live in the moment more often. We still share fun times and laughs so I am trying to relish those moments. This week, I hope will be filled with lots of fun for this is Dave's birthday week and ALL of his sisters are coming to town to celebrate!! Looking forward to fun, laughs and of course birthday cake!!!

Monica

October 7th

October is over. The highlight of the month is October 7th, our anniversary! This year was our 12th wedding anniversary.  Wow! I mean WOW! I am not even sure of what that means. I guess it depends on what I want to concetrate on.  It has been a crazy 12 years. When I look back at our wedding pictures I know we had no clue what kind of journey our life would be like together.  There are sooo many good times and of course there were not so many fun good times, but I am glad that we're going through all of them together. I know you all are probably tired of hearing me say how much I feel that Dave was a blessing to me but he is a blessing! Yes, I know he has Alzheimer's and many of you have listened to or read my melt downs but I have them because I love him so.  But! any who this post is not about that it is about that day our lives began together! ( I know so hokey mushy!)

 

 

I remember that day....excitement mixed with nervousness! I knew from the very first date that Dave was the one! I can't even say exactly what it was! He was such a kind, laid back kind of person, the total opposite of me! I admired the man he was, he was respected at work because no matter what his job was he did it with such integrity you had to respect him.  He is exactly the same way today! If I was to just meet him now I would have the exact same feelings...this is a man I will love forever! The added bonus is that he is a man of God! Well, I will quit with all that because this was to be a short post filled with pictures. I need to apologize now for the pictures. I am working on a laptop now and had no way of scanning the pictures so they are going to be pictures of pictures. 

 











Mr and Mrs Thomas! So happy!!


 





The Thomas men. So very handsome!





 

Our family (minus one bridesmaid who is an old friend)



This is my favorite picture of Dave.  It is from our honeymoon. We had rented a cabin at a small lake and we went canoeing (not sure if that is spelled correctly but spell check didn't catch it so I guess its okay). I was sitting in the front of the canoe and at one point I stopped paddling, turned around and quickly snapped this picture. Of course here you can't catch the feeling but it was a beautiful and cool day....perfect!

 

 

Monica

Anniversaries

September 17th was the one year anniversary of the death of my dad. I was sad but I am not sure what I was sad about. There was so much turmoil that surrounded my dad's death and for me it was really just beginning.

I was more emotional than I really thought I would be.  The past few years have been crazy starting with all the trips I was taking due to my mom then after her passing the trips to see my dad and be there for family get togethers. Then his passing and all the family issues. Usually when I have days like today Dave always knew the things to say, or not to say, and I would find comfort in his hugs and words.  Today it was very different.

First this anniversary was for me the reminder that right after dad died this long journey that Dave and I are on started.  I had a couple of weeks of grief over my dad and all the other issues then BAM! it was all about Dave. Today was no exception. I realized that he has the inability to know how to comfort me. I know he wishes he knew but he has forgotten.

I read some place that a "good" caregiver is not selfish.  Not selfish? What exactly does that mean? Does that mean I give up or no longer acknowledge my needs? If so then I have a lot to learn! You see today I just wanted to wallow in my feelings and reflect on this past year.  I wanted to cry and not worry that I was not giving Dave what he needed or keeping up a "happy" face to keep him in a "good" place. People with Alzheimer's usually reflect what emotions are surrounding them so it is suggested that you keep your emotions in check. So what does a caregiver do when they are sad or tired? How realistic is it to expect a caregiver not to ever have any kind of emotion other than good ones? To make my day even worse, Dave was having a very emotional day himself and he complained about his back hurting.

My emotions were all over the place! Sad, angry, annoyed.  The day I should have been on my knees asking God to help me I couldn't do it.  I wanted to be left alone to wanting some comfort from someone, I needed a physical hug and there was no one to give it. All Dave could do was feel sorry for himself today and complain about is back and want me to take care of him.  Needless to say I was not in the mood to take care of anyone today.  Usually when Dave has emotional, feeling sorry for himself kind of days we would get some fresh air. We would go take a walk or at least just change our surroundings. Today I didn't want to go anywhere but I did. We drove to Wild Cat park for a walk.  This was also a time for us to talk about things that are on our minds but how do you talk and share with someone who has no clue what to say back.  I find myself sharing less and less of myself and it makes me sad and angry all at once.  Then Dave said, "These are new paths." WHAT!? There is only one path that we walk and it is the same as always! I hate this disease!



The next few months are filled with anniversaries of various kinds. Next month, Oct 7th is our 12th wedding anniversary.  I want us to take a little trip. I truly feel deep inside that this will be the last wedding anniversary Dave will remember.  October is also when we had our first doctor visit. Then some time between October and December Dave had all his testing then December will mark his one year anniversary of his diagnosis.

The next few months are going to once again be a roller coaster of emotions. All I can say is thank you to all the prayer warriors out there.  I know I can't get through these days without you!  Of course I know that it is God's comfort that will get me through.

 

Monica

 



I remember.....

The other day Dave and I were talking about kids and swimming.  On occasion our conversation will bring to mind a memory he has never talked about before.

"One time we were in Kansas City.  We had gone to Worlds of Fun.  We were at the hotel swimming. Adam got into the pool and sank straight down. It scared me terribly, I reached down and grabbed him and pulled him out of the water. He sat out for awhile. He did get back in, and I think I helped him. All I remember is that he was okay after that."
 

That is all that he said, I don't know anything more about the story so I have no idea the ages of the boys. I hope to write the few memories Dave talks about whether they are good or bad.  It is important to me to record as much as I can for future conversations. Of course I will only want to talk to him about the good stuff, stuff that will give him good feelings and make him happy.  Many of these memories will be before my time so if you can add to this story please leave a comment below so it can be recorded.

Monica 

 

    

                    

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

Dave on the news!

One of the local TV stations did a story on the new program sponsored by the Alzheimer's Assoc.. It is called Memory Buffet, it is a scheduled social activity for people with early stage Alzheimer's.  Following is the link, just highlight the address, right click and open. It should take you to the video.  Dave did a good job, very proud of him!!


http://fourstateshomepage.com/fulltext/?nxd_id=299042

Monica