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