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

A really, really bad joke.

So, how long does it take a couple of 50 somethings to scrape paint off a wall, when one has early onset Alzheimer's?   (That's the really bad joke.)  So far 3 days!  The really sad part is that it is only half a wall....the upper part of the wall in our bathroom! 

It has really bothered me to see that some of the paint was starting to chip and peel which is not an unusual phenomena so we decided it was time to repaint. I figured that it would be an easy task and something Dave could continue to do. Well, was I wrong! I figured that all we would have to do was scrape the chipped areas, smooth them out then paint. I knew it would take a couple of days as Dave tires easily and has trouble staying on task, but wow it has become this huge growing monster. We have discovered that Dave is capable of doing some of the work but it just doesn't get done quite the same as before. 


Of course it is a little discouraging to Dave but at least he is still capable of doing some of it. I can't really pinpoint the problem because I know that he did get huge chunks of paint off the wall but then he would have a hard time figuring out how to get the tip of the scraper under the paint and ended up just making lots of black marks over the wall.  I tried not to interfere and allow him to work on his own but the job is getting longer and longer and we have only worked on the area around the tub not the area on the side of the sink! So here we are 3 days later and I am sore and exhausted.  (In between job hunting, Gabriella came and helped with the scraping and Dave went outside to mow the grass.)  No one tells you how hard it is going to be when you try to continue doing things that were such a breeze before. And that it is done in silence to help him stay on task, that means no music no background noise of any kind. It is hard to know what Dave can still do and what he maybe shouldn't be doing at all. Part of me doesn't care that it is taking so long but another part of me just sees it as one more thing to check off my list of "things we used to do together that brought us joy and satisfaction" and now will have to start finding other people to do.   What do other people of a certain age do?  Do you always find someone else to do the work?  How much fun is that? This was something Dave and I used to do a lot, see something that needed fixing, make plans executed the plan than sat back and enjoyed the results.  Now for me it is just a "Oh no! something needs fixed now what????"  We are at a funny time now (not a ha! ha! funny) because I am ready to throw my hands up and quit and Dave feels the need to continue. I think to prove he can still do it!  So now what??? I guess I am making an executive decision, we will sand and fill in the areas then paint.  It will probably look really bad but I am tired and I don't want Dave discouraged any more. Can someone tell me....can I just fill in the edges around the paint I can't get off or do I have to do the whole wall to make it even?? (Please give me the answer I want even if it means the wall will look tacky!)

There has been some progression in Dave's cognitive abilities. He continues to have problems with multi-step task, even if you verbally give him the steps you have to give one at a time and wait for him to process what it means and how to do it.  I am not sure how to explain the problem he is having with going down steps.  He can still go down them but it is much, much slower and he has to hold on to the handrail and do not talk to him or distract him because he will lose his footing. We do not want him falling! We have also noticed that when he needs to turn the light on, or push a button on the microwave or lock/unlock the windows he spends a lot of time running his hand over the area to figure out where the switches, locks or buttons are. I am not sure if it is a vision problem or just progression of him not remembering how to do something, so I will be making an eye dr. appointment.  When he is tired his inabilities become more pronounced so we try to keep work to only the morning hours when he is more alert and can think more clearly.


Monday is Memorial Day and we will be taking our usual trip to KC for a picnic at my sisters.  This will be our first extended away trip.  We will be spending the night at my sister's where we have stayed at many times before but this is our first time since Dave's "official" diagnosis.  Needless to say I am a little anxious but after talking with my sister plans were made to make sure that Dave would not become too disoriented if he gets up in the middle of the night.  I also know that Dave can become anxious and have difficulty thinking clearly when around a crowd with lots of conversations and noise but we can retreat inside and find a quiet place until he is ready to be with the crowd again.

The changes are coming faster than I thought they would yet there are so many things that are still the same! Dave still does his own activities of daily living and there is no personality change. Dave is a pretty laid back quiet kinda person and I truly believe he will continue to be so even in the later stages.

Monica

A reflection back and the love of Christ.

Tuesday, May 22 is the one year anniversary of the tornado that struck Joplin.  It was a disaster that changed so many lives and our community.  You didn't have to experience a personal loss, just living here meant you were effected.

Everyone has seen the news stories or read the articles about all the devastation and loss and now there are stories of  rebuilding of not only our town but of individual lives.  This morning in church we heard from many who were directly affected.  There were also many more who sat in their seats unable to share as they found it difficult to speak about the wounds (not necessarily physical wounds) that are still healing.  Although we were not in the direct path of the tornado just listening to the stories of survival brought back the memories of what we heard outside as the tornado blew past while we took shelter in our basement. I cannot imagine what it must have been like to have your home blown away while you sat huddled in the bathroom, hallway or crawl space then to emerge to find everything you owned gone.  

For many today, when they reflected back they had glorious stories of God's hands on them protecting them and their families.  One woman shared how she huddled over her son protecting him and singing to him to keep him calm and sometime later when the memory of that day was triggered by a song at church camp she realized that God had been singing to her that day and she could see that He was laying over all of them protecting them from the storm. I could not stop the tears and even now I get goosebumps from her story.  There were so many testimonies of God's protection that day and even more testimony of how God came in the form of all the people who have come to help.

I have never been involved in a disaster before and I have presumed through this entire process that all communities found a way to come together and help. We had churches pull together and coordinate assistance along with other outside agencies.  People gave up vacation plans to come here, donated food, water, clothing and time. Some came in groups but some came alone and joined other larger groups to do what they could.  Did we have people who came and took advantage of the situation? Yes.  And unfortunately some were from our own community.  But the love of Christ over shadows all of that, at least for me, and we need to pray for those who were opportunist. 


So, how do we make this more personal? What if we are not involved in a major disaster,does that mean that we have to wait for one to show the love of Christ to others; to be a community in Christ?  No it does not.  We can reflect Christ's love and be part of "community" by taking care of each other in everyday matters.  This doesn't necessarily mean giving them something materially or monetarily but giving of yourself by listening to them, praying with them and just loving them. This also means we accept those gifts because I am learning that when we turn away those gifts it is like turning away God.  I, for one do not ever want to turn Him away! 


I remember a song we sang in the church I grew up in:

"We are one in the Spirit, we are one in the Lord
We are one in the Spirit, we are one in the Lord
And we pray that all unity may one day be restored
And they'll know we are Christians by our love, by our love
They will know we are Christians by our love



We will work with each other, we will work side by side
We will work with each other, we will work side by side
And we'll guard each one's dignity and save each one's pride
And they'll know we are Christians by our love, by our love
They will know we are Christians by our love   

And they'll know we are Christians by our love, by our love
They will know we are Christians by our love"

I pray that our community reflects this song and is seen as such to others in the world.  I pray that I, in my own personal life, and still learning how to love and forgive can reflect this same kind of love no matter what our situation is in our home. 

Monica