Tired, emotional and lost.

This has been a hard week.  Not only was there a time change this past weekend but also a change in Dave.  I am not sure why some days the progression of this disease is more evident than others.  Sometimes I am not sure if what I see is true or not and I am constantly asking Gabriella during the course of the evening if she notices the same things I do.  


For those of you who have been in our home you will understand my weariness when I say that I am very concerned because Dave lost his way to the laundry room. For others, our house is very small and its a straight shot from the living room to the kitchen then straight through to the laundry room.  There is no turning down a hallway or going down steps just straight through but he kept turning to go into the room we have deemed "the computer room" and would just stand there not sure what to do.  (As I have said in previous post, if Dave is interested in doing something he does it, anything that will keep his mind going and for him to feel that he is contributing to the upkeep of the house.) He didn't just do it once but a few times! Most of the time I find a gentle way to point him in the right direction but I was trying to get other things done and became frustrated. I didn't say anything hurtful, at least I don't think I did, but instead just came right out and said, "the laundry room is through the kitchen" and pointed to where he needed to go. I didn't have an "attitude" when I said it but said it in a flat tone. I was so tired that day but I know that is not an excuse.  

On another day we ran errands and picked up some much needed items at the store. Of course our Target store is rearranging itself to make room for the new produce section so I was just as lost as Dave. I am sure he felt a little bewildered because I am usually the leader and he follows but we were both lost! Anyway when we got home Dave wanted to shave (I think we had some place to be that evening) so he took his new razors into the bathroom then came right back out because he couldn't find the shaving cream. Of course it was in the spot it is always in but he forgot and then he couldn't find the new can we bought. It makes me sad to remember this.


On Sunday Dave was too tired to get up and go to church so he stayed home and Gabriella and I left. I figured he would sleep the entire time we were gone and was surprised to find him up when we got home.  To my dismay he looked terrible! He knew we had gone to church because I woke him up to tell him bye but he looked disoriented or confused. He said he had gotten up just a little before we got home and he tried turning on the tv but couldn't get it to work. He did turn it on but had changed the channel on the wrong remote and turned off the channel that we need the tv on to get the signal and he couldn't figure out how to turn it back so he turned the tv off and just sat on the couch waiting for us to get home. It was easily fixed but still it makes him frustrated with himself. 


What an emotional roller coaster we are on!  The worse part is that Dave knows when he forgets. He says its like a wave that ebbs and flows and he can't do anything to stop it. One thing I noticed when we were shopping was that his hands were really sweaty-I know, that sounds yukky. Dave and I used to hold hands all the time when we went places but when we shop we usually have a shopping cart so I don't usually hold his hand. That has changed and we are holding hands again but mainly so I can guide him through the store without it looking like I am guiding him. I asked if he was feeling okay because his hands were sweaty and he said he was okay, "I know they're sweaty but I don't know why. I don't think I am feeling anything!" Hmmm. Hope that doesn't mean he is losing the ability to identify what he is feeling. 

We spent the best part of the day on  Monday talking about these incidents and others and cried. He said he worries about me and my future and I worry about making life easier for him. I spend a lot of time trying to figure out ways to revamp our house to make things easy. We I have a lot of work to do!


You know that I have stated that I am trying to look for the joy in our journey because it is so easy to always focus on the down side. I don't want to end on such a sad note so I am going to list some things that I am so grateful Dave can continue to do.

1. We can still hold meaningful conversations, we continue to discuss things that need to be done around the house, family issues, and make simple plans.
2. We can still watch simple plotted movies together.
3. Dave continues to still pick out his own clothing. (I have stated that only because we recently had someone ask if he could still dress himself.)
4. He still gets enjoyment from working in the yard! He can continue to plan the gardening - it may end up being in containers but he can still do it!
5.  He knows my name and who I am!

The list can be longer but I don't want it to sound like I am talking about a child because I am not but I am talking about someone with Alzheimer's and things are more simplistic now and we find victory in every small step!

Monica

Alzheimer's Association and how we are doing.

I thought it was probably time to let everyone know how things are going with us. Dave is still taking the last medication the doctor put him on but he is on a very, very low dose one time per day. When we increased it to two times a day as recommended Dave experienced side effects he just couldn't get over so we went back to one time per day.  After reading information from different sites and asking questions it appears this may be the last medication to try.  We pray that this will be enough.

So, how is he doing? Well, since I have nothing to compare his progress by I couldn't say for sure.  I can tell you more of our observations.  I do notice more and more times when he forgets words and has a hard time recalling them.  I can see the struggle on his face, but like any couple who has been together for any length of time I fill in the words and can pretty much respond. I know that he has been talking to some of you on the phone and you may not notice the struggle but we do some prepping before he calls, i.e., I remind him the name of who is calling and the purpose of the call and he can usually carry on from there.  I do have to say if you are calling about something important please send me an email or text so I can write it down and remind him later because he can't always recall your conversation after he gets off the phone.  Dave is not really a phone conversation type person and although he wants to know how you are doing he will not pick up the phone just to say hi especially now when the words are hard to come by so please do not be upset if he does not call to chat, but do know he thinks of everyone often.

When Dave is tired his symptoms are more noticeable.  He forgets where things are (I know that sounds silly because he forgets anyway but it is much worse), drops his conversation in mid-sentence and just can't concentrate.  He continues to do some "art" although he has moved from his painting to coloring. He has gray scale pictures that need color and he works on those periodically. He still doesn't have much motivation to work on things around the house but I think its because he can't remember how to do it.  I worry about him when he climbs the ladder to check the gutters-it has been so windy here and with so many trees our gutters fill quickly, and I worry about what we will do when he can longer do this (I have a fear of  climbing ladders).  We need to scale down to one remote control because when he is tired he forgets which remote does what (we have an old tv so we have one of those boxes that converts the signal so we have a remote for the box and a remote for the tv and then one for the dvd player!) He has totally given up driving, even the short distance driving he was doing.  He naps a lot now too something he never did.

I think we are both bored and finding things to keep him motivated/busy is harder than I thought.  He did come with me when it was our Care Groups time to serve dinner at Kids Club, he appeared a little lost but then busied himself keeping the trash emptied and cleaning up a bit. No one cared and I was glad to have him with me.  I do have to say that he has gotten much better at telling me he can't remember. Of course there are still plenty of things he continues to do-he says he doesn't always feel he should be cooking so he does the dishes, laundry,vacuums, and continues to take care of the cat.  I have to say that I need some motivation also-I miss the way we used to keep each other going. You know how it is when one is weak the other is strong, now its a little lopsided and I become less and less motivated to get things done....we have a long list of things around the house that needs attention. It's not as much fun doing it alone. All I can say is I can't wait for spring when he can be outdoors and busy himself with yard work because he has said that being outside really clears his mind up and he can think much clearer! 

One of the things that I did get accomplished was contacting the Alzheimer's Assoc. I am so happy that I did! We are involved in a program called L.E.A.R.N.. The acronym stands for Listen, Educate, Adjust, Resolve and Navigate. We meet with a care consultant who will help us with any community support there is and she will also meet with the family to answer questions and educate on what to expect. (By family I mean our kids or other family members.) I firmly believe that the more educated you are the less fearful things seem and it would be good to learn how more advance the medical field has come in the treatment of Alzheimer's. Also I think it is important for the family because of the family medical history. The Association also has a program called Memories in the Making-it is a painting "class" held at the Spiva art center. They have a local artist and someone from the Alzheimer's Assoc there to teach and guide the participants with painting. Some of the paintings done are auctioned or sold to raise monies for the association. Dave has been once (he will miss the next one due to a dr. appt.) and enjoyed it!

There is also an Early Stage Education and Support Classes to be held on Thursdays starting April 5 until May 10th. There will be different professionals facilitating the various classes offering support and education. This is open to anyone who is involved with a loved one who has dementia/Alzheimer's. These classes include the "patient" as well so Dave and I can go together and meet other people in our situation! I am also looking forward to a Caregiver conference to be held April 20th. They will be talking about research and treatments, 10 warning signs and legal and financial matters! I may have information overload by the end of April but I am still looking forward to it all. If you are interested in knowing any information go to www.alz.org.

That's it for now - leaving you with some pics from our last walk at wildcat park, it was windy a little chilly but we needed to get out!

self portrait.

we did not do the graffiti. dave just thought it would be funny to look like he was saying "you're amazing".

Together!

A different kind of "love" story

I realize that Valentines Day is over but this is still February and there are always "love" moments to reflect on.  Valentine's Day is not a day that we have really made a big deal about, not even sure why.  One of the "traditions" started by Dave was ordering chocolate covered strawberries!! YUMMY!! That is a favorite of mine so that was my special gift every year but not just any chocolate dipped strawberries they come from the Candy House and they are HUGE!!!  This is our one time per year extravagance, and oh so worth it and you get a dozen, more than enough to share!!

The excitement of Valentine's is actually more of the excitement of the Father-Daughter Ball that takes place at our church!  Every year there is a different theme, different speakers but always there is dancing! There is someone there to teach dad and daughter some kind of dance, which Dave said makes no difference to him because he can never pick it up and all the girls end up dancing with each other.  But Dave and Gabriella look forward to it every year and what girl doesn't enjoy shopping for a special dress! Dave and Gabriella have been attending since she was in 6th grade and hopefully will continue for the next two high school years.(The first father/daughter date nites occurred while she was in Brownie/Girl Scouts!)  Each year they come home with a special keepsake. I have no idea what the themes are, who the speakers are or what they speak about because neither one of them can remember!  All that is important is the time they spent together learning how precious they are to each other and Gabriella will know what type of mate to look for ..... one who sees her as precious as her dad does,treats her with special care and of course a Godly man.

6th grade

7th grade

8th Grade

Learning to dance!

Beautiful table.

10th Grade 

 

 

 

 

 

 

 

 

 

9th Grade

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

One picture from Girl Scout days: Father/Daughter date night.  A princess with her prince!

google changes

I am learning that the Google Friend Connect will be dropped by Google. I am not sure how that will affect our blog because GFC  shows there are only 5 followers (thank you family members!).  Since I am brand new to blogging and not sure how to add other widgets for followers to click on please follow via email. I have read that bloggers using "blogger" will not be affected but not sure so please take notice of the "follow by email" box on the sidebar - place your email address in the box and hit "submit", you should then receive updated notices via your email whenever there is a new post.  If you are experienced with following blogs and can give me some information please pass it on and I will post it so others can learn too! This change from Google should occur March 1st. 

Monica

Our story

I can't remember the exact day that I first met Dave but the feeling in my heart I can never forget! 


I would say that maybe we met at the beginning of 2000.  I was taking a night class at Missouri Southern (biology), as I had decided that I was meant to remain single and I was okay with that. I decided to make the future better for me and the kids by completing school to become an R.N.. During this time, the school district had started a wellness program for the employees, with volleyball being one of the activities we could participate in.  During my career as a school nurse I was always traveling from school to school-usually I was assigned to 3 schools (I think at first I may have had 4 schools). Because of all the traveling and not necessarily having the opportunity to become close to very many of the staff I didn't usually participate in many activities. There was one school I worked at that I did get to know the teachers, and they needed another volleyball player so I joined. I thought it would be fun and growing up volleyball was our family picnic game! So on the nights I didn't have class, the girls (Stephanie & Gabriella) and I would join the rest of the staff from Irving (the school building is no longer standing as it was destroyed by the tornado) and play volleyball. Now, believe me when I say that it never crossed my mind that I would ever meet anyone interesting especially since I planned on remaining single and made plans for my future. God had other plans!


At one of the very first games there he was, playing for the opposite team. I had no clue who he was or what department he worked for, BUT, the principle I worked for and who was on my team knew him and was talking to him like old friends! Of course I didn't think too much about it as we did have a game to play then I had to leave so I could study and get Gabriella ready for bed (she was only 4).  On the way home I told Stephanie "Did you see that cute guy?" Of course what teenager would notice-silly me! The next time I was back at Irving I asked the principle about Dave. I didn't even know his name so I just asked her about the guy she was talking to that night. She told me what she knew about Dave, they knew each other from her days working at the high school the same time he was there. She thought he was still single, had two sons and had been working for the school district a really long time. She realized that I was just a little interested and she said she would find out more! My first question was to ask if he was christian and believed that salvation came from Jesus Christ. He had to be a believer or forget it! She didn't know and said she would find out. Now I know this all sounds school girlish but like I said I traveled all the time and didn't come into contact with some people at all.  Dave's job usually kept him in the warehouse but once in awhile he would have to fill in for the guy who did the mail route but I never ran into him. I didn't always see him when we played volleyball because we played different teams, eventually we would have a rematch.


During this time I continued spending time studying and doing my job and didn't give anything much thought. Debbie (the principle) did tell me she found out that Dave was indeed a believer in Christ but that he was dating someone else.  Well, believe it or not all I was thinking was that was okay (about him dating someone else) but that one day he wouldn't be and I will be here! Why in the world was I thinking that? I surprised myself with that thought but then maybe it was God putting it on my heart.  I would see Dave once in awhile at the games, he said he was checking out the teams they would be playing against, hmmm, I will never know if that is true but I am pretty sure it probably was. I started running into him at various schools and would small talk about our respective teams. I was usually very busy, there is a lot to squeeze into a half day at school when you have lots of hearing and vision testing and phone calls to make so we didn't really get a chance to talk much, besides he had a delivery schedule to stick to.


Eventually the volleyball games ended and so did Dave's relationship. During this time I guess, Debbie kept asking him questions about himself and how his relationship was going. Eventually he realized that something was up, not sure how it all came about but he found out that I was interested. So now it was May and school was coming to an end. One day, at Irving, there was a concert or awards assembly and I was standing in the hallway watching and here comes Dave around the corner with a delivery. At the same time one of the students got sick so I was busy. Funny how Dave stood around chatting then the next thing I knew everyone in the office was gone! But I had a sick student, a phone call to make then a parent to talk with so we didn't have time to talk. Eventually he did ask me for my phone number! (later in our relationship he said he had to ask for my number then because he knew school would be out and he wouldn't see me all summer!)


I won't bore you with all the details but I do want to say that when you are faithful God is faithful to you! Dave and I started dating in May. We had an "old fashion" kind of courtship, we sat on my porch swing and talked a lot , lots of phone conversations, and long walks. Early on I talked to Dave about my faith and my desire to have a Godly man and if God couldn't be part of any relationship I was in then there would be no relationship. God had been so faithful to me and I was going to be faithful in Him. Dave had a desire to grow his relationship in Christ and I invited him to church. He was open about his lack of understanding and his wavering faith but I knew in my heart that this was right and God would be in the center.  


June 28, 2000 is one date that won't be forgotten-for one that is Gabriella's birthday and she turned 5.  It was just a family party with the kids and I, Dave came and a close friend dropped by. Later while Gabriella was playing outside Dave and I were sitting on the porch and he said he was going to have to find a new place to live. I said I would be happy to help him find a place, I love house/apartment hunting! He said something like, well I was figuring you would help because it would be a place for both of us. "Are you asking me to marry you because that is the only way I would live with anyone!", he said "yes". I thought I was supposed to say yes after he did the asking but I think he must have been nervous! :-) 


So that's it. That is how we began. I know it may not be the sweet story of a young couple starting off for the first time. But for Dave and I it was like a first time as we made a conscious effort to be more Godly in our relationship.  We knew we each had lots of "stuff" we were bringing into this relationship but we knew that as long as we were prayerful, and faithful God would get us through. As Dave and I look back and reflect we each have our own ideas as to why at that particular time in our lives we became a couple. Dave said he felt that God saved him with this relationship.  I have always stated that Dave was God sent. I believe that when I started to live out the Christian life that I professed and became more faithful that God blessed me with Dave.  We are not perfect, we still have problems and obstacles to over come and still have relationships that we need to work on with kids, and family but on this Valentine's Day we celebrate our love that is heavenly blessed. 

Monica

catching up on news

Wow! didn't realize it had been so long since I last posted. So now, do I start with the fun stuff or the not so fun stuff? If you have looked at my profile you will see that I follow a lot of blogs and although I don't read them on a daily basis I do take a peek now and then. Somewhere on one of them I saw a hand stamped necklace with the phrase "There is joy in the journey" and it was discounted! (yippee!)  I really liked it and knew that that was the attitude I wanted to have about the journey we are on, so I purchased it to remind myself to look for joy everyday. Now, I have to say that is the hardest thing to do! The necklace came with two beads dangling from it and they are always clicking against the stamped tag, its almost as if they purposely make the noise to remind me to look for the joy. So based on that I will give the not so fun news first to move on to the good stuff!


To recap: Dave has had some difficulty with the medications that are meant to help with the dementia.  The first medication made him really sick, the second med was doing well while he was on the low dosage, but when he was placed on the maintenance dose, which is a higher mg., he started to experience some bad side effects. The third medication just didn't work at all. Even Dave voiced how he didn't feel motivated to do anything, (on the previous med he was painting and reading again) and I noticed he was having a harder time putting sentences together and forgetting more than usual. So now we are on his fourth medication. We are to give it at least 2 weeks and according to the dr we will know if it is doing the job or not. Where is the joy? Well, we look at it this way, there is now a medication that can slow down the progress of the dementia. This gives us more time together. Where would we be if there was no such medication?? I am not saying we don't worry about what could happen if none of the medication works but we choose not to dwell on it and concentrate on the good stuff. We ask that you pray for us to find the right medication and that Dave doesn't experience any more side effects.


Okay, so now to some good stuff! A few weeks ago, (or maybe longer) Linda (my sister) and Fran came down for a visit. They were only here for the day but it was a lot of fun! The weather cooperated and although it was a little cold the sun was shining!!! We didn't do anything but talk and eat! We caught up on other family news, and discussed how much roomier the house looked without the chairs (see earlier post) and talked about who knows what else! I made some chicken soup, salad, and chocolate cake! Then it was time for them to leave. That was a happy/sad time....hated to see my sister leave! Hopefully things will work out and she can come back in the spring/ summer and stay much longer! My family doesn't live far (Grandview) but since we all know how unpredictable the weather is (in our part of the country) and how life can be, it can seem like too many miles away. The bad part is I didn't get any pictures! Too busy talking I guess.


Just about a week or so ago, Pam and Roberta (Dave's sisters) came for a visit. They were here for a few days and it was so good to have them here. It really lifts Dave's spirits when family comes.  I hope that coming out here, they live in California, helps them put into perspective how Dave is doing. Unfortunately for me I was a little under the weather and don't feel as though I was on top of being prepared. Adam, Michelle and girls came to visit also. It has been a long time since Adam has had the opportunity to visit with his aunts. 

Michelle, baby Izzy, Roberta, Adam, Pam, Autumn, Dave

Unfortunately, Dustin and Brittney were unable to come down....hopefully the next time. Dustin did talk with them on the phone and I will put Skype back on the computer,(hopefully it won't crash my computer again) so if need be they can at least skype each other.  Thanks again Michelle for helping me get dinner on the table. I have been blessed with three wonderful daughter-in-laws. Dave will be having the big 6-0 birthday this year so maybe they can all come back in October and help us celebrate!! Since we all know that all good things must come to an end, it seemed too soon for Pam and Roberta to go back home.  Dave rides a roller coaster when we have visitors. He is anxious for the visit (a good type of anxiousness) and then has a big let down when its over.  The emotions seem grander, almost like a child's.


It seems that for a few weeks we were living our "before" life....you know "before the diagnosis"......then all of a sudden reality sets back in and we have to get busy again putting our lives in order to prepare for the future. I do have to say that there is no more procrastination going on! I have been organizing and purging like crazy. These are task that I was supposed to do when I became a "stay at home mom" but lets not discuss how long ago that occurred! (see the joy in that statement?!)  


We have all heard the phrase,"it takes a village",well, for me it is not a village but a small "community" known better to us as our care group.  It is so hard to put into words what a wonderful blessing these people are. When I have a melt down from the over whelming feelings they are so sweet to listen,encourage,love and pray for us. They give us a helping hand by brain storming with me and connecting us with names of people who can help. They have helped in so many other ways; there is someone who I am sure would prefer for me to not mention it but she has brought us a couple of meals and were they delicious! She brought them at just the right time unbeknownst to her on days when I had not put any thought into dinner. We are grateful that Dave has a group of people whom he is relaxed around and he can enjoy himself and not feel conspicuous around when he has moments of forgetfulness.  Some time when our families come to visit I want them to meet our Godly family, I want our families to see that God is taking care of us,when they are so far away, through these wonderful people. What better joy can there be!

Monica

quick update

I have been asked about Dave's EEG results which means I forgot to let everyone know that they were "normal". The Dr was looking for any kind of seizure activity but guess there were none! I posted before that the Dr increased the dosage of his Galantamine and he started that this week, so far so good! Have a good weekend!

Monica