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

Our small (attempt) contribution for fund raising

Yesterday, Tuesday, April 24th, Dave and I took a trip to Springfield to participate in a video that the Alzheimer's Assoc is putting together for their fund raising gala. When we were first approached about it Dave was not too sure about sharing our story. I know Dave enough to know that he likes to think things over, to determine if what he is asked to do has any benefit to others, and he prays about decisions. Well, when we received another phone call and request he said yes!


We were encouraged to bring pictures that reflect Dave's personality, his hobbies, his family etc. The mistake they made was telling me, "You can't bring too many photos!", WOW!! I was super excited about this part, have you seen all the pictures I have?? We had such a hard time picking out just the right pictures, how many is not too many and how many are just enough for them to pick and choose which to include in the video? We did have fun and even though we had tons of printed pics we ended up going to the computer where the rest of the pictures are and ordering what we hoped were the best. It turned out that picking out the pictures was the easy part!


I know that part of the request for us to participate in the video had to do with Gabriella. The idea was to show that Alzheimer's is not just a disease of the elderly but that it reaches out its long slow arm and grabs the young "I have my whole life in front of me" kind of person. The person that still has young kids at home and who have very young grandchildren and young adult children. And you think you have your whole life to enjoy each and everyone of them. This disease doesn't care about any of that, it doesn't care that you have young kids at home who still need your guidance, adult children getting their start on life, nor does it care that you have grandchildren that you want to make memories with so when they grow up they fondly remember that fishing trip, the camping, the bar-b-ques, or the daughters who hope that you will still be "there" to walk them down the aisle and see them take their next step in life and most important that you will REMEMBER!!


There is so much that people need to understand about this disease so yes they will donate the money for research. Dave and I were very disappointed with ourselves after the taping of the video. We wanted to say so much about how we have been affected and how Gabriella (since she is the only child still living at home) felt. I don't know if we were nervous but I felt a little rushed, couldn't get my thoughts together, even though we had all day Monday to think about it, or if it had to do with the fact that I, as usual, got us lost!


So what would I have said? The person taping the "interview" sat off camera asking us questions like how we first met and why pick this person. (strange question i thought but i guess it was to speak about the personality). I only said a small portion of what I would have said, (since I am long winded I kept the answer short, probably too short). I saw Dave as a man of integrity, kind hearted, hard worker, someone who loved his sons, a man that didn't have a bad word for anyone,he accepts people for who they are, a man with a servants heart, and a heart for God! Of course I didn't say any of that except that he had integrity and I knew how much he loved his sons,ugh! why couldn't I say more than that? 


Of course the big questions were next...how did you feel the day you received the diagnosis, how has our relationship changed and how has the Alzheimer's Assoc helped us?  To go back and think of that day was surreal. How do you put into words all those feelings? With his family history we knew that it was inevitable  Dave would some day receive the Alzheimer's diagnosis but we had no clue it would be when we were still so young. It was expected and unexpected all at the same time. All Dave could think about were what his parents were like at their end stage. I spent a lot of time reminding him how much the medical field as changed and that now there is medication to slow the progress, I tried my best to comfort him and didn't take the time to process my feelings. I just knew that this strong, smart, fun man would change. I had a panicky feeling because I didn't really know as much about Alzheimer's as I would like to have thought I did and all I could think about was "how long do we have before his mind is gone?" "how quick is the progress?" and on, and on. Nor did I say that Gabriella's first question was "will he still be around when I get married, will he be able to walk me down the aisle?" nor did I get a chance to tell them what my daughter-in-law said that my step-son said.."I feel like I just got my dad back and now this."  How do people who have been mending broken bridges together side by side then move to only mending one side at a time while the other side can only do it part way?  How do you put into words all the feelings that you feel, its like when people say, "my whole life flashed before my eyes", not only is it the life you lived already but the life you know you won't get to see or if you do will you remember?

How has our relationship changed? We all know how good it feels to have someone beside you to help carry burdens, and bask in the enjoyment of life. Well for us it is now lopsided. I don't believe that relationships are truly 50/50, there is a shift depending on who is stronger for whatever comes up or where your "talents" lay. I believe our relationship has been that way but now more and more of the responsibilities are on my lap all the time not just when I think that I am more capable. This disease takes away all of that relationship sharing and doesn't care that you may feel incapable. It doesn't care that you move from being partners in life to the nurse, activities director, financial wizard, in other words the caretaker plus on top of that you are still mom (or dad) to the children at home. You take care of schedules, screen phone calls so you tell your spouse who is calling so they can remember their name and who they are and still plan dinner and attend school functions and yet you have children who don't live at home and you can't figure out how to balance everything. I had a friend say to me " I bet your mind is always going." and she is right. It goes alone because even if you share the task with your partner they are incapable of coming up with the words to help make decisions and then they carry the burden of feeling like they are of no use, which is untrue. But this disease could care less it just keeps slowly moving on and on knowing that no one at this time can stop its growth.

There have been times in most people's lives when they are going through some tough times either because of illness, financial burdens, or just life stuff and we are told "there is a light at the end of the tunnel". Well for people with Alzheimer's and their families there isn't really a light at the end of the tunnel (except the light of our Heavenly Father calling).  But with the support of  the Alzheimer's Assoc we are at least seeing that there are lights you can turn on IN the tunnel. The journey will be lit with areas of peace and joy as you learn new skills and the partner with the disease can see how important they still are and how they can still contribute to their family. We know that we are not alone because we have family, and friends to support us and we have the Alzheimer's Assoc to advocate for people like us.

That is what I would have said yesterday if I had taken a deep breath and just talked.

Monica

Dave- "When we first got married we knew this would be forever. One of the things we dreamed about when  the last of our children moved on to a life of their own was that we could do stuff we loved doing on our own.  We sat and dreamed of all the places we were going to go and the things we were going to do. We knew we loved all our kids but we were looking forward to our time, this was going to be for us. When this disease hit us it most likely stopped all that for us. 

You have heard from Monica how awful this disease is and what it is capable of, at the drs office we found out all this has changed. This disease takes away everybody and everything, leaves no one behind, it is a disease that will kill 100 percent! Everything is changed. How do you tell your kids that this will take away their father when they don't want to know that this is happening. They want to deny it as much I did at the first. We all know that there is a day coming so much sooner than we thought. How do you tell your wife how much you love her, you try to tell her that all her dreams are gone. It will be an empty house instead of being together. 

This disease is a killer, it doesn't care who it kills or when it kills. She is a strong woman who can take care of herself, I have seen it in her and still see it, she will be by herself some day. Its not fair, the disease doesn't care. All the people will be gone that it touches. How do I tell my sisters, all our friends, all the people we know. What do we do knowing that my end is coming, I know that sounds gruesome but that is how I feel. How many more years will it give me, will it be 1 year, 2 years, 10 years?  I know this and I accept this knowing this is how life is for me now. I have to prepare knowing this, how do you prepare care of the house, cars, the family and prepare Monica for single-hood again? I know this is God's plan for me, I don't always understand but I know its His plan and I know that who is left behind will be okay. 

I can't say enough about how strong Monica will be. As my wife she has been there for me since step one, she couldn't be a better wife. She immediately took on the additional role of caretaker. How do I put into words how much it means to me all the things she has done, is doing for me. I love my wife, sometimes I just can't find the words. I pray that when I am gone that she will have a long carefree life. How do you say thank you to your sisters, friends, church, care group, family for all the love, support and care! I do plan on staying a long time and fight this disease the best we can. 

I pray that everyone I leave behind knows how much I care and love them. I know that this sounds like I am dying tomorrow but I wanted to say this while the words are there for me to say." 

Becoming educated and moving on.

Wow! I hadn't realized it had been so long since I last posted. I apologize for not keeping everyone up to date. I guess the old saying of "No news is good news" could sum up the past month. I will try to keep the news in some sort of order but I can't guarantee it!


This month has been a bit busier, Dave has been attending the Memories in the Making on Thursday mornings at the Spiva Art Gallery in town. It is a painting "class" for people with dementia/Alzheimer's. It is sponsored by the Alzheimer's Assoc., they supply all the paints and canvases. The paintings will be put up for auction and for sale to help raise funds for the association. There is a local artist that attends the class and guides the participants with their paintings. Dave is enjoying it. I am grateful for the class as he has quit painting at home. The atmosphere is very positive and there are no expectations. There is starting to be some bonding with everyone in the class and Dave said that since they are all the "same" it is very relaxing and they encourage each other in more ways than just with painting. I feel that this class is giving him more confidence and courage to try and step out again!

Dave's first painting.

 

painting #2

The association will frame the pictures before they are auctioned. Such a contrast between the two paintings, I think they are a reflection of how he is feeling.
 I prefer the second painting as it much lighter in color. 
One of the local tv stations did a story on the class, Dave opted to leave the room during the filming as he was uncomfortable with the cameras. The class will go until November and I am very anxious to see how his paintings evolve.

We have also been attending Early Stage Education & Support classes on Thursday afternoons. The first class was a general introduction explaining about dementia/Alzheimer's and how the brain works. The second class talked about effective communication with your doctor and stressed the importance of being honest with your doctor about what is going on along with some general tips. After listening to the other participants in class all I can say is how blessed we feel to have doctors that take their time explaining what is going on and actually listen to our concerns and questions. We never feel rushed and feel that the drs really care about Dave. I am also armed with my notebook that I keep Dave's medical information in from medications, blood pressure and anything that we notice that is different from the last visit. Dave did have a problem that we are not sure about. He has been experiencing some light headed/dizziness problems when rising from a sitting position, along with slight hand tremors and clammy hands. His blood pressure has been normal so we called the dr who requested we head to the ER.  So after blood work, EEG, chest x-rays, heart monitors and a UA nothing was conclusive as everything came back normal! I am not sure how long Dave had been experiencing problems as he still does not tell me right away when he is not feeling right. We were told it could be side effects of the Namenda (the medication for his dementia) or it could be from a problem with his inner ear.  They suggested an OTC medication which he tried and said he felt slight relief.  Still not sure about this problem.

Back to the classes-we still have a few more to take.  They will be discussing legal/financial matters, daily strategies/coping with changes and the last one will be about opportunities supporting research. One of the things I enjoy the most is the small groups. At the end of the class we break up into groups with caregivers making up the one group. Its nice to share with other people who are going through the same thing and have the same feelings, fears, hopes, disappointments and even some funny moments! I am very happy to also say that our care group attended one of the classes in our support and plan on attending others!  I can never say enough about how much it means to Dave and I  to have so many people who love  us, care for us and supports us!

There are still many things Dave and I need to face but I hope that the more we educate ourselves the less scary some of these things will become.  I am slowly learning to accept the "new" Dave and try to focus more on what he can still do and try to get him to not "sweat the small stuff".   Last weekend my sister and niece came into town and we sat around the table talking and laughing. In the past Dave would be sitting around the table talking and laughing along with us but now he sits on the couch and listens. I know that he has a hard time keeping up with the conversations and he has said numerous times that he can't always find the words to say.  He told me later that he enjoyed listening to us talk and seeing us laugh and watching my sister come and go out of the kitchen making herself at home.  So this is the "new" Dave, the one who can't find the words to participate but can still get enjoyment from watching and listening.  

It still makes me a little sad to not have the Dave that talks and jokes with his quick wit but I can accept that he still gets enjoyment from listening and watching and he can still sometimes find that wit, its just a little slower now.  We have given up on participating in a lot of activities, even family functions, but my hope is that we can find a way to control the anxiety Dave experiences when in a large group setting in environments that he is not familiar with (and even in settings he is familiar with), so we can together attend gatherings. (Dave is okay going places if he does not have to converse with others so he still attends Gabriella's concerts and other school programs.)

Induction to National Honor Society

How proud we are!

  

Strolling Strings,Gabriella is the 4th Violinist.
All school orchestra concert held early Saturday morning.

Dave continues to have memory lapses, he states that its like turning a light off and on, that is how quickly he can forget then remember again.  The one thing that we have been told over and over again in the classes is to try and overcome denial of the disease.  The longer that we or others stay in the denial stage the longer and harder it will be to move on.  At the same time, we (meaning me) need to allow him to continue to do the activities he is capable of doing so the disease does not take him away too soon. 

Monica

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!