Preparing for doctor visits.

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

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

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

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

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

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

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

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

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

Monica

a birthday celebration

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

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

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

dave & kim

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

pam & dave

anita

roberta

a sticky mustache unibrow!

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




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

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

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

Roberta, Anita, Dave, Kim, Pam





Monica

The first day of a new job.

Do you remember that feeling you get the first day of a new job? There is always some excitement mixed with anxiety. Sometimes you might question your decision about accepting the job. Despite the experience you know you have you wonder can I really do the job?  What if I do something wrong or the ideas I have don't pan out? What if, what if, what if......!

Well, I haven't started a new job, at least not in the traditional way. I didn't apply, or have interviews. I didn't have to sit by the phone hoping to hear good news. But I can tell you that every single day feels like the first day of a new job. No two days are ever the same. One day Dave has no problem carrying on a conversation, his recall is good and he can carry through a task without hesitation. The very next day it could be the complete opposite, (actually it can all happen in the same day)!  Maybe he can complete a task without problems but unable to complete a sentence because he can't think of the words.  Then there are the days when he is unable to complete a task, can't finish a whole sentence and will even get turned around in our little house.  There are also days when he has no interest in anything and it can be difficult to coax him into doing an activity. I am never sure what to do on some of those days. Every single day is different and every single day feels like the first day of a new job. What works on one day doesn't work on another day.

What I hate the most about this "new job" is that for Dave I am sure the feeling is multiplied to a degree I will never know. Right now this past week I have noticed that Dave is having more and more difficulty with his words...he can't remember the words and so he only completes half a sentence. He is needing more coaxing to participate in functions that he did before, painting at Spiva and the Memory Buffet (social group for dementia patients through the Alz. Assoc).  He has even lost the interest in painting (pictures) at home and working in the yard. His sleeping pattern has really changed, he had always been an early riser, even after his diagnosis he was still getting up early, now he sleeps in until 9:30 or 10:00 no matter what time he goes to bed.  Our mornings are really slow and I have only about 2-3 hours of afternoon time that he is feeling clear and we can get "chores" done or errands ran.  He also takes afternoon naps, something he never did. Physically you can see that he has lost weight.

In regards to his weight, it is a concern that will be brought up to the Dr in December. He has gone from 150ish to 140 lbs. It is not just the numbers that are concerning but the way his cloths fit. No longer does he fill them "out" but some of his shirts now just hang on him and his jeans, he pulls his belt so tight to keep them up that they bunch in the back. I was going to buy him a new pair of jeans the other day when we were at Target but he refused. I am sure he is having difficulty seeing how much his own body is changing, its just a reminder of what is going on.  Dave will eat 3 main meals everyday but some days he will snack a lot. Coming up with some healthy snacks that he will eat has been a trial and error.  Right now he has been snacking on nuts, seasonal fruit, pudding, apple sauce, and I try to keep hard boiled eggs in the refrigerator. If he doesn't eat them we make tuna salad. I can't get him to completely break his cereal habit in the morning but I can convince him some days to eat some oatmeal or eggs.  Some of these changes I knew to expect I just wasn't expecting them so quickly.  I was concerned that maybe there was a problem with his blood sugar but from past lab work everything was normal, even the doctor indicated that his blood work was "perfect".

Like any good employee who desires to learn about their job I am researching,attending "trainings", making connections with agencies and even with other caregivers through social networking. I am  trying to keep one step ahead of this disease as best I can to help Dave stay as independent as long as he can.  One of the things I am striving for is to learn to live in the moment more often. We still share fun times and laughs so I am trying to relish those moments. This week, I hope will be filled with lots of fun for this is Dave's birthday week and ALL of his sisters are coming to town to celebrate!! Looking forward to fun, laughs and of course birthday cake!!!

Monica

October 7th

October is over. The highlight of the month is October 7th, our anniversary! This year was our 12th wedding anniversary.  Wow! I mean WOW! I am not even sure of what that means. I guess it depends on what I want to concetrate on.  It has been a crazy 12 years. When I look back at our wedding pictures I know we had no clue what kind of journey our life would be like together.  There are sooo many good times and of course there were not so many fun good times, but I am glad that we're going through all of them together. I know you all are probably tired of hearing me say how much I feel that Dave was a blessing to me but he is a blessing! Yes, I know he has Alzheimer's and many of you have listened to or read my melt downs but I have them because I love him so.  But! any who this post is not about that it is about that day our lives began together! ( I know so hokey mushy!)

 

 

I remember that day....excitement mixed with nervousness! I knew from the very first date that Dave was the one! I can't even say exactly what it was! He was such a kind, laid back kind of person, the total opposite of me! I admired the man he was, he was respected at work because no matter what his job was he did it with such integrity you had to respect him.  He is exactly the same way today! If I was to just meet him now I would have the exact same feelings...this is a man I will love forever! The added bonus is that he is a man of God! Well, I will quit with all that because this was to be a short post filled with pictures. I need to apologize now for the pictures. I am working on a laptop now and had no way of scanning the pictures so they are going to be pictures of pictures. 

 











Mr and Mrs Thomas! So happy!!


 





The Thomas men. So very handsome!





 

Our family (minus one bridesmaid who is an old friend)



This is my favorite picture of Dave.  It is from our honeymoon. We had rented a cabin at a small lake and we went canoeing (not sure if that is spelled correctly but spell check didn't catch it so I guess its okay). I was sitting in the front of the canoe and at one point I stopped paddling, turned around and quickly snapped this picture. Of course here you can't catch the feeling but it was a beautiful and cool day....perfect!

 

 

Monica

Anniversaries

September 17th was the one year anniversary of the death of my dad. I was sad but I am not sure what I was sad about. There was so much turmoil that surrounded my dad's death and for me it was really just beginning.

I was more emotional than I really thought I would be.  The past few years have been crazy starting with all the trips I was taking due to my mom then after her passing the trips to see my dad and be there for family get togethers. Then his passing and all the family issues. Usually when I have days like today Dave always knew the things to say, or not to say, and I would find comfort in his hugs and words.  Today it was very different.

First this anniversary was for me the reminder that right after dad died this long journey that Dave and I are on started.  I had a couple of weeks of grief over my dad and all the other issues then BAM! it was all about Dave. Today was no exception. I realized that he has the inability to know how to comfort me. I know he wishes he knew but he has forgotten.

I read some place that a "good" caregiver is not selfish.  Not selfish? What exactly does that mean? Does that mean I give up or no longer acknowledge my needs? If so then I have a lot to learn! You see today I just wanted to wallow in my feelings and reflect on this past year.  I wanted to cry and not worry that I was not giving Dave what he needed or keeping up a "happy" face to keep him in a "good" place. People with Alzheimer's usually reflect what emotions are surrounding them so it is suggested that you keep your emotions in check. So what does a caregiver do when they are sad or tired? How realistic is it to expect a caregiver not to ever have any kind of emotion other than good ones? To make my day even worse, Dave was having a very emotional day himself and he complained about his back hurting.

My emotions were all over the place! Sad, angry, annoyed.  The day I should have been on my knees asking God to help me I couldn't do it.  I wanted to be left alone to wanting some comfort from someone, I needed a physical hug and there was no one to give it. All Dave could do was feel sorry for himself today and complain about is back and want me to take care of him.  Needless to say I was not in the mood to take care of anyone today.  Usually when Dave has emotional, feeling sorry for himself kind of days we would get some fresh air. We would go take a walk or at least just change our surroundings. Today I didn't want to go anywhere but I did. We drove to Wild Cat park for a walk.  This was also a time for us to talk about things that are on our minds but how do you talk and share with someone who has no clue what to say back.  I find myself sharing less and less of myself and it makes me sad and angry all at once.  Then Dave said, "These are new paths." WHAT!? There is only one path that we walk and it is the same as always! I hate this disease!



The next few months are filled with anniversaries of various kinds. Next month, Oct 7th is our 12th wedding anniversary.  I want us to take a little trip. I truly feel deep inside that this will be the last wedding anniversary Dave will remember.  October is also when we had our first doctor visit. Then some time between October and December Dave had all his testing then December will mark his one year anniversary of his diagnosis.

The next few months are going to once again be a roller coaster of emotions. All I can say is thank you to all the prayer warriors out there.  I know I can't get through these days without you!  Of course I know that it is God's comfort that will get me through.

 

Monica

 



I remember.....

The other day Dave and I were talking about kids and swimming.  On occasion our conversation will bring to mind a memory he has never talked about before.

"One time we were in Kansas City.  We had gone to Worlds of Fun.  We were at the hotel swimming. Adam got into the pool and sank straight down. It scared me terribly, I reached down and grabbed him and pulled him out of the water. He sat out for awhile. He did get back in, and I think I helped him. All I remember is that he was okay after that."
 

That is all that he said, I don't know anything more about the story so I have no idea the ages of the boys. I hope to write the few memories Dave talks about whether they are good or bad.  It is important to me to record as much as I can for future conversations. Of course I will only want to talk to him about the good stuff, stuff that will give him good feelings and make him happy.  Many of these memories will be before my time so if you can add to this story please leave a comment below so it can be recorded.

Monica 

 

    

                    

Alzheimer's marches on

It seems that for awhile Dave had been pretty stable in his progression. With the increase of his medication the doctor was careful to inform us that Dave would not regain any of which he lost but the progression would slow down. SLOW DOWN. We heard that and yet we knew that one day Alzheimer's would rear its awful head and once again take another piece of Dave.

Dave has now progressed to having the hallucinations. These are not what most people would consider "bad" hallucinations but enough to cause slight fear and confusion.  Dave had described them to be more like "shadows", a quick "flitter" of a shadow that makes him take a look but realize that nothing is there. At first he wasn't even sure if it was happening, a few times he thought it was just the cat walking across the floor but then realized that the cat was in the back room or in the garage or sleeping curled up on the couch. I am not sure how long he has been having them because he didn't tell me about them until we happened to see something on tv about dementia and as usual our conversation turned to what he was experiencing.

He has also been experiencing some muscle problems. I have noticed for awhile that his gait had become slower and stiff. I am not even sure other people notice the difference in his walking. I wasn't even sure I was actually seeing what I was seeing. Do you know what I mean? You know you think you are seeing something that isn't right but then you wonder if you are just imagining it or thinking the worst when its really just something minor. I finally asked him if he felt "different" when he walked. He said "my muscle's feel like someone has a tight grip on them while I am trying to walk" and "sometimes I feel like I am not sure I am walking right, like I have forgotten how to walk".  I asked him if it gets better when we go on walks, do his legs begin to relax and move better. He said "no".   He has difficulty concentrating on his walking when in a crowd. He has the inability to do more than one thing at a time.  His tremors are more pronounced on occasion and sometimes even if you can't see his tremors, when I hold his hand or hug him I can feel his body tremor.

We are now sleeping with a night light on in the bedroom as he says that for an instant when the light goes out and it is dark he gets fearful. It takes him a moment to remember where he is at then when he remembers he can fall asleep.

Last Thursday we went to the doctors. I really like our neurologist. I feel he is educated and informative in regards to Alzheimer's and always tries to be positive with us. I like that he takes his time with us, address Dave directly, and is assuring in his explanations. He gave Dave two choices, (after many questions and examining him) one-take a calcium supplement 1x/day or two-take a very small dose of a muscle relaxant. Dave immediately said "I'll take the supplement." The doctor said "Very good." but did say if he did not feel any difference in his muscles after a few weeks to call and he will need to be on the relaxant.  The positive things he said: "Your communication is much better." and "See it is just a minor problem, easily taken care of." You know he is probably right but to us, especially for Dave, it feels like a HUGE deal. Its huge because we know there is no turning back, the progression is starting again and we know nothing can truly stop it.

Dave has quit attending church. The people and noise seem chaotic to him. He doesn't know where to look and can't concentrate on the lesson. For now Gabriella and I continue to attend and like Dave says, "I sleep the entire time you are gone anyway."  (He sleeps more now and gets up later than he used to.) It worries me when I leave him alone but not because I fear that he will wonder off but I fear that he will forget where we are and become scared or that he will do something and get hurt or that he will take the wrong set of pills. That is how I felt for sure last Sunday and when service was over I was out of there as quick as I could get out. And sure enough, Dave was already up and showered then told me he had taken the wrong pills, (his pills are in one of those am/pm pill containers) but the good thing was, as soon as he put them in his mouth he knew it wasn't right so he spit them out and threw them away! So now the plan is to put away the container and I will only leave out the morning pills so no more worries.

Once again our house is in a state of transition. I thought I had thought through enough of what could be happening and had prepared and organized that I wouldn't have to do much more but I was wrong.  I am learning that each time I see Dave having difficulties it will require some new way of doing things. You have to think outside of the box on occasion.  Eventually our house will be down to bare minimum in furniture as it will become harder for Dave to maneuver around.  Whatever needs to be done to keep him around, safe and happy I will do. I hear being a minimalist can be very freeing!!

Monica