Preparing for doctor visits.

This month is our 6 month "check up" and at the end of the week Dave has an appointment with both his medical Dr and his neurologist.  The visit to the medical doctor is usually pretty quick and "painless" as he just checks how the blood pressure and cholesterol meds are working and checks his general heath.

On Friday we have the neurologist appointment.  this appointment, on the other hand, i am not looking forward to at all.  There have been significant changes in Dave since our last visit, he is having more confusion that is very noticeable.

With the time change causing it to become dark earlier and with Gabriella busy in the evening with school functions Dave is always wanting to make sure the porch light is on but he can never find the light switch.  He constantly goes to the wrong wall in the wrong room and turns on lights in the house instead of the porch and each night I have to try and find an easy way to tell him which wall switch is for the porch.  He gets turned around in the house all the time, going into the "computer room" with his coffee thinking he is in the living room and always wanting to go out the front door thinking he is going into the laundry room.  When he is making coffee i can't talk to him because he forgets what he is doing. 

He is also having more and more problems with his talking and he is forgetting more and more of his words and he is starting to ask the same question over and over. If he doesn't have contact with family and friends he can no longer recall their names, sometimes he can picture their faces when I say their names but sometimes he can't even do that.

So what do we do? Its now time to start making signs.  I have been putting off making signs but to help him to continue to be independent and allow him to continue contributing to the household it is time to make them. Fortunately I am crafty and plan on using maybe some cute chalkboard type signs.

Dave can still do the dishes, he feels like he can still contribute to dinner time but there are more and more dishes he can't remember where they go so he leaves them on the counter or on the table. Tonight he was getting ready to do the dishes and was going to put a stack of plates on top of a pot lid (the handle for the lid was on top of the lid which would make the plates unbalanced). I grabbed them just before they fell to the floor and broke! For safety reasons I am thinking it is time to move to corelle or melamine dishes. We did find some really nice melamine dishes at target but they do not come in sets so we will have to buy a few at a time. i think this will be a good choice as they are lighter and unbreakable.

There is also the issue of his taste.  It is not unusual for people with Alzheimer's to start losing their sense of smell and taste. I am not sure if Dave has lost his sense of smell completely because there are times when i am cooking dinner that he will say "mmm, smells good."   but there have been times when we were outside and i would comment that i could smell wood burning but he could not or that there was a "funny smell" but he couldn't smell anything.  He has noticed himself that he will sometimes not be able to smell certain scents and sometimes can't tell what i am cooking because he can't smell.  Since we know that the sense of smell and taste are connected he is also experiencing a loss of taste.  H can still taste salty food and sweet things although he will sometimes say that he can't taste the sugar in his coffee and will ask me how the coffee taste. 

I will also be asking the doctor about the jerking that Dave is doing. He has always had thrashing at night which continues. When he naps (on the couch) i notice that he has some mild jerking and sometimes it looks like he is talking because his lips are moving and his hands are in constant motion. The jerking he does is more of a concern. I am not sure how to describe what he does, it is not a spasm because it is quick like a jerk of his muscles-have you ever started to fall asleep in a chair or on the couch and you suddenly jerk? Well, that is what Dave does except he is awake and the jerking is getting hard enough that he almost drop his cup out of his hand and once it was so bad it gave him a headache. I have no clue what would cause this jerking. At first i just thought it was a reaction to being tired but Dave said he has them all the time no matter what he is doing.  He continues with tremors which he feels are getting worse.

Lots of changes in the last six months. We know this disease progresses differently for everyone and that the younger the onset the quicker it progresses but you are never prepared no matter how much you educate yourself.

Monica

a birthday celebration

Wednesday, November 7th, was Dave's 60th birthday!   To help him celebrate my sister-in-laws came into town! Dave was very excited about having all his sisters here at the same time, we had not seen them all together since our wedding-12 yrs ago! (They have gotten together plenty of times we just had not been able to join them in the past.)

I was not sure how this get together was going to affect Dave. My goal was to try and maintain the routine that has been established but Dave's goal was to spend as much time as possible with his sisters. I think they were wanting a little bit of both,plenty of time to be with Dave but give him the time to rest.  It was a hard balance. There was some prepping prior to their arrival, like reminding him what their names were. Thankfully I had pictures so the day before they arrived we looked at them and I told him the names of each of his sisters, just to remind him so he wouldn't feel discouraged about his memory while they were visiting. Monday and Tuesday went well. Dave was able to hold conversations without too much trouble but by Wednesday he was having problems coming up with some words and very often was saying "I'll remember soon." or "Give me a minute". 

Maybe the mistake I made was putting on the music he enjoyed so much growing up.  During the morning I played some Crosby, Still, Nash and Young and The Mamma's and the Papa's. Dave was okay at first then Puff the Magic Dragon started and Dave started crying! I felt so horrible! The whole idea of playing his favorite music was to bring back fun happy memories not make him cry. He said he was just feeling sorry for himself because all he could do was think of how the future will be, that this was probably his last big birthday he would be aware of and remember. Well, after that the music was turned off and we left the house for lunch and then met his sister's at Small Cakes to pick out the cupcakes for his party!

dave & kim

As part of the decorations I put up pictures of Dave from the time he was a baby to elementary school time. It was really cute, sorry didn't think of taking a picture. Dave's sisters cooked dinner and cleaned up! It was so nice to have someone else take over! We had fun with some wooden mustache props, all us females posed with the wooden mustaches and Dave posed with a pirate patch or pink lips.

pam & dave

anita

roberta

a sticky mustache unibrow!

It was too funny! Kim had even bought some stick on type of mustaches for Autumn to use when they came but I think the grownups had more fun with them!   




As part of the celebration and gifts I had requested written memories with pictures if possible. These would be used later as a tool to spark a memory for Dave. Kim wrote about a time they went camping and Dave's nephews told him they saw a rattle snake, Dave said they didn't live so high up in that area and wanted them to prove they saw one. His nephews went back and killed the snake and brought it to Dave! There were pictures to go along with this memory. I loved it! I loved it even more because it did spark a memory in Dave and he was able to fill in the story and have a laugh! I am putting together a notebook that I learned about that consist of memories and pictures...not exactly a scrapbook because you only place one picture on the page and the opposite page contains the written memory. Gabriella's memory was about Dave pulling her teeth out when they were just dangling. She hated this ordeal at first but then she hated the feeling of a dangling tooth more and would ask Dave to pull the tooth! Believe it or not I don't have a picture of him pulling a tooth but I do have a picture of Gabriella with missing teeth! This will go in the notebook too.

Dave loved that his sisters were here and of course disappointed when it was time for them to leave. The after effect of the celebration? Dave had some let down the next couple of days. He did A LOT of sleeping-sleeping 12 hours during the night then napping off and on during the day. He lacked energy to do simple things - depression from his sisters leaving or just plain tired, I think some of both.  I didn't realize that Alzheimer's made the most simplest occasions so tiring. We had some errands to run the days after and Dave would come along but was really slow. I noticed he had his "Herman Munster" walk back and he stated he felt like he was not able to lift his feet right to walk. He also informed me that he thinks he is losing his taste. I know that we have a morning discussion just about everyday about the coffee-i think it is terribly strong and Dave will say he can't taste the coffee itself just the sweet taste of the sugar he puts in it. Concerned that he is using too much sugar in his coffee we made a change from just a sugar bowl to small packets now he says the coffee is not sweet enough but he still cannot taste the coffee itself. He says this is not the first time this has occurred to him.

Well, I really meant for this post to be just about Dave's birthday but some of this other stuff kinda goes along with it. Despite how devestating this disease is there is still some fun, good times to be had (just make plans and be prepared for the aftermath).

Roberta, Anita, Dave, Kim, Pam





Monica

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

An emotional day.

Today has been one of those days, maybe its the change in the weather or maybe its the medication change or maybe its just the progression of the disease but whatever the cause its been just one of those days.  I was going to just write things down in my journal but decided to write things down here.

I have read that one of the changes or characteristics of someone with AD is how they become very emotional.  Well I can attest to that. I have seen Dave become so emotional over things that never bothered him before, tears well up in eyes and he looks sad.  Usually its no big deal if we are at home or even in the car because if he cries, he cries its only us around. Sometimes he gets this way in the middle of the store.  Today that happened and I couldn't help but feel sad too.  Dave always says "Don't feel sorry for me. Don't cry."  This just makes me more sad and I want to cry even more but in the middle of the store you learn to become distracted so you  both don't look foolish. What happens to those emotions? I think usually for Dave they pass because he can't remember what made him emotional, for me I sit up into the late hours of the night and cry.  Tonight I am crying, blogging and listening to one of my favorite videos, When I Call on Jesus by Nicole C.  Mullen.

We know there will be days like this and of course they seem worse when there is a weather change.  I also notice this more when Dave is tired and he seems tired all the time. With the increase in his medication he wakes up bright eyed but he said he fights the tiredness all day. He said its always just under the "surface".  I try to find things for us to do everyday to keep him from spending all day napping on the couch but I still need to take the time to complete household chores.  One of the reasons I feel so emotional tonight is because he lost the memory of his mom and dad. Of course on days like this Dave becomes melancholy and we talk about his progression.  He worries a lot about whats happening or going to happen, today it was about his appetite. We actually went out for a hamburger today and he talked about it like he had never tasted something that good before. Its a place we have gone to before so I just passed it off as him just being hungry so the conversation led to us being happy that his meds haven't taken away his appetite or that he hasn't progressed so much that he doesn't eat.  Then the conversation turned to his mom and dad and he said, "I don't know what happened. I had already left."  He forgot his parents moved to Missouri to be close to him and that they were here when they passed away.  It took me a minute then I said "Well, they were in a nursing home at the end so maybe you didn't realize." Then I saw the look on his face when he realized he had forgotten.   He forgot all those years that his parents were living so close to him. I wanted to cry for him but instead changed the subject and watched him get a far away look in his eyes.

Even now writing about this incident in the restaurant then again later in the store picking up his refills when he became emotional all I can do is cry.  I cry not just because Dave has forgotten but because I can't tell him anything about those times because that was before me. At some point those things from the years before me will be gone for good and I can't do anything to remind him. All I can think is how much I want the old Dave back. How much I miss the man I fell in love with and married.  Even with some changes that seem better with the medication change I can see him slipping away. Its slow and some days I don't notice at all and then there are days when you can't ignore it. I feel an urgency to record as many things as possible to keep him here with us, to keep him from being lost.

I know how important it is to be positive, look for the good, joyful times but some days I need to just look at all this straight in face and let the emotions go.  I cry, become angry and even have to admit how envious I am of others who can continue on their planned future and living the kind of life I had envisioned but has now been taken away. 

Tomorrow will be a new day and I know that God will take care of it all. I trust in Him and have faith. I know He is walking besides us and carries us when we can no longer walk on our own.

                                                       

                                                                 

 Monica

Art Show

It is finally time for those paintings that everyone was doing in the Memories in the Making painting class through the Alzheimer's Assoc to be on display!! They are located on the second floor at Spiva Center of the Arts. We are very excited to see Dave's paintings in frames and on the walls. For a minimum donation of $50 one of the many paintings can be yours! If you're in town go and take a look you might find some awesome art work for your home or office (doesn't even have to be one of Dave's). All monies go to the Southwest Missouri Alzheimer's Assoc.

"Rainbow Sky"

"Tropical Ocean"

"Canyon River"

"Dark Mountains"

"Desert Canyon"

The history of Memories in the Making

Who to contact if interested in purchasing any of the paintings.

We appreciate everyone's support for not just us personally but supporting the Alzheimer's Association. 

Monica

Happy Fourth of July!

The 4th of July has always been Dave's most favorite holiday.   He states that growing up in California, fireworks were banned so when he moved to Missouri many years ago he celebrated the 4th with lots and lots of fireworks!

The first 4th I spent with Dave, Adam and Dustin was crazy!! I never saw so many fireworks. Dave was like a kid, it was so much fun watching the three of them. Every year up to last year was the same. We spent the fourth with various friends/family but Dave's excitement and joy was the same.  We had fun walking up and down all the aisles at the stores/tents picking and choosing which fireworks would give us the biggest bang and the best show of bright colors. FUN!!!

This year we spent with our good friends Mark & DeGee and their kids along with Mark's parents and another set of their friends.  The girls played games on the Wii or outside doing whatever teenage girls do! The grown ups talked. We had some delicious food and homemade ice cream!! Mmmm!!!

Gabriella with Alyssa and Lauren "dancing".

Hmmm! Aren't they all supposed to be doing the same move???

Later when it was dark it was time for the fireworks!! Last year Dave set off a few but this year he sat and watched with the rest of us.

Getting ready to set off the lantern!

Fountain

Dave thought this one looked like a palm tree!

Asking with a believing heart and blessings occur.

Man oh man is it hot! Wish we could get some rain so the few plants we have around would perk up. Not much fun staying indoors when you feel you should be out getting some sun. Funny how the sun can help you perk up but too much is really bad (plants burn up along with your skin if you're not careful).

Well we didn't get any rain but we sure have perked up around here.  A few post back I stated that there was so much to get done around the house and how over whelmed I have been feeling because of it all. Its always the small stuff that can bring a person down the hardest. I plugged along and prayed for God to get me through each project. My prayers have been answered over and over again. First, my sister Linda came down and helped me purge out so much stuff freeing not only valuable space in our home but in our mental state as well. Second, my sister-in-law Anita, came in to town and worked at helping me get some meals in the freezer and gave me some respite!

This last week we had more blessings from Louisiana! I had been talking to our church about needing some help and sent in a request on our "flap" from the bulletin. The church has been helping to coordinate volunteers who have been coming into town to help in the tornado damaged areas but have also been working in other areas. We were blessed to be a family that they worked with. You know that I have had a long list of little things that needed to be taken care of, those small things that made me feel weary because I couldn't figure out what or how to fix them.  Well, that list has become so very small thanks to the group from Louisiana.  They are from First Baptist Bossier in Bossier, Louisiana. (I know that the women's names are correct and a couple of the men's names as well but some are mixed up, sorry I can't remember for sure.)

Brad,Mary,Jeff,Phyllis,Gary,Steve,Jennifer,Jerry,Walter,Peggy,Don

 In the sweltering heat they worked on our yard,cleaned out the gutters,went up to the attic (twice) to cover the vent so the racoons and squirrels could no longer enter, they replaced the mailbox, textured the walls in our bathroom and replaced the faucet in the kitchen that would be easier for Dave to use. I pray they understand what a huge blessing this was for us.  That weariness and overwhelming feeling is gone. It will be so much easier to maintain because the "ground" work has been done. It is so hard to put into words how I feel except that I know that God has promised that when we lean on Him he will take care of us. He has answered so many of our prayers; Dave is not getting as sick as we were worried about with the increase of his medication, another HUGE blessing!

It has always been hard to ask for help but as I have been reminded: when you deny help you deny some one else their blessing from God. I for one do not ever want to deny anyone of a blessing! So humbly we accepted and I pray they are all blessed 20 fold.

Monica

Father's Day and another busy week

HAPPY FATHER'S DAY!! I know I am super late with this part of the post but I have been a bit busy and to be honest it takes me awhile to process in my head what to write in my post. Dave had a quiet Father's Day. The whole day, as it should be, was do whatever Dave wanted to kinda day.  So after church we had lunch at Cheddar's! Since it was so early we didn't have to wait a long time for a table a big plus because we are always so hungry after church!

Dave & Gabriella at Cheddar's

After lunch we went to the movies and saw Men in Black 3. It was a good movie! You never know with each sequel how good the movie is really going to be. Then we were off to have ice cream at Braum's. Yum!! That was all the excitement for the day....quiet and filled with what Dave wanted to do and was excited about and able to remember later!

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Just this last week, Anita (Dave's sister) came to visit for the week!  The days after Father's Day Dave was constantly checking the calendar and asking for sure when Anita was coming, he was so excited! It was also a week since Dave's med changes and he even remembered that the last time Anita was in town he had become sick from his medication and hoped this would not be repeated. (No severe problems with his meds)

As stated in my last post my sister had come down for a few days and it was a whirlwind of cleaning and organizing! (An update later)  This week  Anita was going to help out with cooking and freezing meals. This was going to be wonderful for me! There are so many days that things just don't seem to go right and the next thing I know its almost dinner time and I have no clue what I am fixing so I was looking forward to having someone to help plan out some meals and help with cooking and freezing.  The plan for the week was set up for a visit to Bass Pro and respite for me!!!

It was another whirlwind of business! We shopped and planned, prepped and froze a few meals! I was given a break with Anita cooking dinner for us! Yippee!!!!  We had a lot of fun working in the kitchen together and getting some new ideas.

Anita prepping.

Gabriella chopping veggies.

Dave continued on his regular schedule and attended his Memories in the Making class. I feel it is important to maintain as much of our normal routine as possible as it helps Dave stay on track; he continues to have some confusion when things are changed too much and it helps to keep the anxiety down. We also attended a new social function for people with early onset Alzheimer's and other dementia's.  It is called Memory Buffet and it is to help those with Alzheimer's/dementia to become more comfortable in social gatherings. There were only a few people there but we pray for it to grow just like the one in Springfield. Dave had a good time and is looking forward to more activities and since this is not for caregivers I am looking forward to some respite time and hopefully getting to know other caregivers.

Anita and Dave went to Bass Pro with Adam meeting them there and then driving out to their farm.  Dave said he had a good time at Bass Pro but that he did get tired.  He made sure to tell Anita that he continues to have problems feeling lost if he doesn't know where the person he is with walks away and he is not aware of it.  He also stated that he did have some difficulty descending the stairs. If we go back again I will look for an elevator!                                                    

Adam & Dave at Bass Pro.

Dave truly had a good time with Autumn and Izzy, or as he calls them "the girls".  He played with Autumn in her room and said it really hit him hard how much he is going to miss and wants to spend as much time with them as possible. He became a little sad later when he was talking about it. Everyday we have moments of sudden realization.

Grandpa and Izzy

Autumn and Izzy

Dave, Adam, Izzy, Michelle, Autumn

Although we had a good visit with Anita its once again time to get back to reality. It didn't take long for me to see the effect the busy week had on Dave, he thinks he is fine but I can see he is tired especially when he took the wrong sets of medications. I prep Dave's meds, place the pills in his pill container that is marked AM and PM for each day. He took his PM meds before church and I never thought to double check as he doesn't normally have problems but today he did. I am hoping it is because he is tired from the busy week. Too much excitement and activity has an adverse reaction but he doesn't want to see it so the next few days will be quiet to get him back on track.

                                                              Monica

                             

6 Month follow-ups and some changes.

These 2 weeks have been busy.  The week after Memorial Day was, for some reason, very emotional for me. Maybe it was the let down that Linda was not coming down as planned for the week or the realization that we live in semi-isolation, our own little world with very little socialization and after leaving the family I felt lonely. 


I have been praying for God to guide us in the way we should go.  I love my church family and especially our care group but I also love being close to my sister. At this time in our lives we are caregivers to someone special in our lives and we have been calling and giving each other the best support we can - the short distance we live from one another seems like a million miles.  Its not just the support for the caregiving but the support about life in general that we do for each other, no one can understand the hows or whys of our decisions except someone who has traveled the same journey growing up. There are lots of things to consider for the future and so I continue to pray and I try to remain silent so I can hear what God is saying.  I continue to wait.


Linda did come down last Thursday afternoon and left Sunday afternoon. It was a quick very busy weekend. As you know I have been needing to purge and organize our home. It is important to simplify our home to make life less cluttered and easier for Dave.  Gabriella and I did get a start but it was a job bigger than the two of us so I was so happy to have Linda come down and help as much as possible. To me the jobs seemed overwhelming but Linda was determined to get it done. Trying to prioritize was even difficult so I just put out there the jobs I wanted done and we decided to start with the smallest and work our way up and what got done got done.  Well, the laundry room and back closet is completely done! We have so much more room and storage space now I can't believe it! We moved things down on shelves I can reach and Dave could find much more quickly. Our next really big job was the garage. UGH!! I would look at it and become so overwhelmed! This is where Gabriella and I had already started cleaning and I am so glad we did because it had given us some room to work in. Believe it or not we got the garage done too! Well, there is still some things that need to be completed, Dave has boxes of stuff in the "loft" that need to be brought down and gone through and there are still a couple of small areas I need to work on in the main area of the garage but now you can walk in there and find things. Dave and I made so many trips to Good Will I have lost count! I am pretty sure our neighbors think we will be moving and probably can't believe all the stuff we had stored in our home!! There is still a lot that needs to get done but I feel like I can take a breather and have a couple of relaxing days once in awhile! I know that I am probably missing out on some days that Dave and I could be out having fun but the summer time is the best time for me to get this all done while I can put things outside and sort them out so I am trying to get things done as quickly as possible. 

This week was the 6 month follow up with the doctors. Dave has been experiencing some light headiness when rising from a sitting position and I felt his blood pressure was running too low.  The doctor agreed and decreased his blood pressure medication. Dave's lab work came back with great results, according to the doctor they were "perfect"! His cholesterol is low and everything else was looking great! That was a very good visit! 

The next day (Thursday) was the visit to the neurologist. This is the visit that was dreaded the most.  This visit, for Dave, was not all that good.  The doctor started just having a conversation with Dave asking him how things were going and Dave did the best he could but it was obvious that he was having difficulty coming up with the words. Then the questions started: who is the president, what is the name of the street you live on, who are the current candidates in the political race.  Dave did not know the answers. He stated his mind was a complete blank. So the Dr turned to me and asked me how he was doing so I gave the report-loses his words, gets turned around when we are out and even in our own home, having difficulty with stairs, walks slower than normal, cannot recall names of our daughter-in-laws, his grandchildren or his sisters. His sleep is disruptive, sometimes he wakes up in the middle of the night or has difficulty falling asleep.  The look on the dr's face was all I needed to see to know what I suspected, Dave is progressing faster than he should be and the medication was not working. We are to increase his medication but also adding some medication that will ease the queasiness - the increase of dosage makes Dave sick to his stomach. So we are slowly increasing his medication and hopefully he will not have problems. I asked the Dr what should we expect and he said that there will be a slowing down of the progression and he will be attentive to task.  The Dr also gave an order for a B12 shot.

While we waited for the nurse Dave cried.  He said he knew things were getting worse and moving fast but to hear it out loud and to see the look on the dr's face made it all so real and scary.  The realization that he never could recall the name of the street we live on or even what numbers are part of our address made him cry even more. (Not even today, Friday, can he recall the name of the street, he has lost it forever.)  He cried later because he said "I told Gabriella I will always be around."  I told him that is why the medication was increased, so he can see Izzy grow. (I stated her specifically because she is the youngest grandchild and it would make the biggest impact.) I told him he needed to do what he had to to tolerate the medication so he can be "around" for as long as possible.  And so we will see, we have started with 5 mg of medication 2x per day then will go to 10mg in the morning and 5 mg in the evening then move to 10mg 2x/day. He will not gain back what he lost but slowing down the progression sounds good to me.


Next week Anita is coming to town and we are so looking forward to her visit! Dave loves seeing his sisters and the socialization does him,us, some good.  We are planning on another week of getting organized. How blessed are we to have sisters willing to come and help in ways I never would have thought I would ever need! How much better can God be? He knows all our needs and takes care of them.

Monica

Memorial Day Fun

I was going to write this post sooner but had computer problems along with some emotional stuff going.

First it was so great getting a "mini" vacation! We have been staying close to home and it was so nice to get to KC to see family! We didn't get to leave until Saturday since we have the cat to contend with and I wasn't sure about too many nights away from home.  I did a quick reorientation with Dave around Linda's (my sister) house.  We stay with her whenever we are in town.  It is nice being some place where everyone already knows about Dave's diagnosis then I don't feel that I need to watch him as much because there are lots of other people keeping an eye on him and helping if necessary. 

Gabriella and Dave

My sister Linda and my niece, Lisa (acting silly)

I feel Dave did well for being in such a large gathering. (Our picnic was Sunday.)  I just let everyone know that you need to call his name and make sure he is looking at them when they talk with him so he can stay focused and concentrate.  He can become easily distracted when there is a lot of commotion. Talking one on one with people helped him feel like he was part of the activities.  There were times when I would watch Dave and could see a blank look, maybe because he wasn't sure where to keep his attention. He did say he had fun! We ALL needed to get away and Dave said that although he didn't participate in much he was happy to see me having fun!  Since there really wasn't any demands on him trying to remember anything in particular he was pretty relaxed! He didn't play any games but sat and watched everyone else.  I expected him to go inside for some quiet time but he never did and later said that he was okay. Later he did have a hard time remembering my great nieces name-Alyana. He kept saying "That little girl."  What I find ironic was Alyana's response to Linda when she was explaining to her about Dave, she said (I will have to paraphrase because I don't remember exactly what she said) "Do I need to say, Hi Uncle Dave, remember me I am Alyana?" She is just a first grader and very smart and kind and very funny! Linda said she thought Uncle Dave would remember who she was and she was right, sort of - Dave says that when he looks at people he knows they are familiar to him but does not recall names or how he knows them.

Alyana celebrating her birthday.

There were a couple of times when getting ready for bed Dave had to be redirected to where the bedroom and bathrooms were.  A few more doors to deal with than what we have at home but he did better than expected. We took other precautions as well such as leaving the hall light on, bathroom light and a light on downstairs so if he got up in the middle of night he wouldn't fall down the stairs and could find his way around. I will say that I am afraid that eventually we will not be able to travel or that we will need to stay in a hotel where everything is all in one room and I can arrange his personal care items out on the counter for him to find, but for right now he is doing okay. 

On Memorial Day we left KC early as we were heading over to see Adam, Michelle and the girls for a cookout! Dave was, of course, super excited to see them all! We know that Adam is having a hard time accepting what is going on with his dad but I could see that day that he is trying very hard.  Dave and Adam sat outside by the grill and talked, not sure what their conversation was about as Dave couldn't recall much but he was pleased that Adam asked about his meds and how he was doing overall. It really helps Dave to talk about what is going on and he feels that the more he can explain it the better Adam will understand and try to accept. Of course Dave has no problem knowing that Autumn and Izzy are his granddaughters and that he loves them very much and he is very proud of Adam and his family.  I wish there was more I could do for Dave and Adam & Dustin. I wish I could get them to understand how important it is for Dave to spend time with them and his grandchildren to make memories so later everyone can recall all the fun instead of what we know will be harder times. Time is going by quickly.  I hate that I didn't get out to get pictures and will need to be better at that. 

I was so tired by the end of the weekend. I am used to being up late but all that extra driving really wore me out and made me very emotional. Dave had a good time, maybe he can't remember details of the weekend but he remembers the parts that were most important to him and we can sit and talk about those times over and over.  This past week has been trying for me but will leave that for another post as I just want to relish the good times and good feelings from Memorial Day.

Monica