trying something new.

Once again we are going to try something new with our blog! There are a couple things, first we are going to change the name of the blog. Not sure yet what it will be so I will keep the same name until we can come up with something that better suits what this blog is supposed to be about.  We are wanting the name to be more positive as I am trying to make a change in my attitude about Alzheimer's and focus more on the joyful, happier times I hope to establish instead of the usual sad feelings. This does not mean you won't sometimes read about my frustrations about what is going on but hopefully it will be fewer.

The second change will be the addition of a short video clip of either Dave and I talking or just Dave!  We want him to participate more in the blog. I think there are probably only a couple of post where you got to read what Dave had to "say" about things early on. I really want more input from Dave so you can understand Dave and how things are going and maybe it will be helpful to someone else. (Even if it is only family reading this blog maybe you can pass it on or understand what someone else is going through.)  Any who! here is our first attempt at the video. Sorry it is so dark we did this on a whim next time we will sit at the dining table with better lighting.

 

 

 

 

So there you go.  Not the best but we are new at this so we can only improve right?!  Love to you all!

 

Dave & Monica

Lessons learned and another new wedding ring.

One of the "normal routine" task that Dave has continued to do is making us coffee in the morning and in the evening.  No matter how much earlier I get up than him and even if I am fully capable of making coffee myself I never do.  It is the one thing that Dave feels he can still do for me as my husband and so as long as he doesn't do anything to hurt himself or cause a fire he will continue to make coffee.  Most of the time it is so strong that my cup is only filled half way then I add water to make it more palatable for me and Dave just adds his usual sugar.  So far things have been going pretty well, there were a few times when he may have forgotten to put the coffee filter in the basket and we had coffee all over the place and of course he has forgotten to put the carafe in and once again coffee went all over.  These really are not a big deal, it doesn't take much to wipe up coffee and then make another pot but one day Dave had decided that he wanted more coffee after we had turned the pot off so it had to be reheated in the microwave.  Not a big deal, its something he has done before but I didn't realize the degree of his confusion and instead of pouring the coffee in his mug he put the whole carafe in the microwave!

OH MY GOSH! God was truly watching over us that day! I am so thankful that Dave doesn't ever put anything in the microwave longer than a minute or else we would have had a fire or something more disastrous! I am so thankful that he was not hurt!! I have to say that that is the first time I was really fearful of Dave using an appliance! He has not used the stove or washer since we purchased new ones as they do not look anything like our old ones to him and he is confused when he looks at them-probably another blessing in disguise! So lesson learned-if the coffee pot has been turned off and Dave is wanting more I try to be in the kitchen to make sure he pours his coffee in his mug first!

During the holiday time there was stuff in the back room that needed to be put in the shed. Of course Dave said he would go and put it away because it was cold and he didn't want Gabriella or I going out. I know it only takes a few seconds to unlock the shed and put whatever it was away and come back. Well I felt Dave was taking way too long and since I was in the middle of something I told Gabriella to take a look out the window to check on him.  She said he was fine and she could see him coming out of the shed. Well once again I kept thinking it was taking him a long time so I opened the door to check on him, the shed was locked up and he was walking toward the house then turned around to go back to the shed, when I called out to him he started back to the house and headed for the basement door and when I questioned him he said he needed to check the water in the basement. I had to inform him that it has not rained in a really long time and there would be no water and had him come back into the house.  After sitting on the couch awhile he said, "I think I forgot why I was outside." I said "I think you did too!"  So second lesson learned....go out with Dave when has to go to the shed or the basement. I have also requested he no longer take the trash to the curb on trash day after it has become dark...he has to take it out early. (Taking the trash is the other household task he continues to do to contribute to the care of the house along with doing the dishes since I do the cooking!)

Well, after reading what I just wrote it sounds as if I just let Dave go off on his own all the time but it has only been a little over a year since his diagnosis and I would not have thought that this soon I would have to be watching him so close. As I have said in past post some days he has such clarity that his offer to take something to the shed or reheat his own coffee never triggered a warning to me.  I have said that I want him to continue to be as independent for as long as possible and he still will be I will just need to monitor more closely without doing the task for him.  Even though it has been obvious that Dave is losing more of his words I have felt that he was at a "plateau" so to speak but the past couple of weeks has just shown me that I was wrong and this terrible disease just keeps on marching and that I need to stay on "my toes". 

I know that in one of my past post I have mentioned that Dave has lost A LOT of weight. It may not be noticeable to some but today we went shopping for another new "wedding" band.  This makes the third ring we have bought for him. The first ring he lost shortly after we were married, it is probable in the warehouse he worked at. The second ring he lost in the yard so he said we were not going to replace it with another "real wedding band" so we found one at Romancing the Stone he liked.  On New Years Eve his band fell right off his finger! I mean he was moving his hand and it just fell off!! He said his ring has been very loose for awhile now and that was not the first time it fell off so today we went out and purchased a new one. I had no problem with him not wearing one...I mean I know we are married and everyone we know knows we're married but it really bothered him to not have a ring on his finger! So off to Romancing the Stone again to buy another ring! He decided that it was not the amount of money it cost but what it means so he didn't care where we bought it...so now he has another ring.  Hopefully this one will last a really long time!

The end of 2012 and the start of 2013 have been very interesting and I hope any lessons I need to learn will not be because something scary happened!

Monica

another new year

It is amazing to me that 2012 is gone.  It was a whirlwind of new things in our life. Looking back I can see a huge change in our lives. I am trying very hard to see the glass as half full, usually i am a "half empty" kinda gal and unfortunately Dave can be too.  Man, life can be tough for two "glass half empty" kind of people. I have not made a new year resolution since i was very young because I know that I can't live up to them, so why set myself up?! Okay, so I imagine everyone is thinking "This is different, you're going to make a resolution." Sorry to disappoint you but no, I am not. What I am going to try is to look for the positive in our situation. I will not promise not to get on here and vent because I am sure I will but I will try to keep it down.

Looking back on how things have changed I will say that there are days that I feel that Dave has progressed so much faster than expected.  We still have days when sometimes we can almost forget about the disease because there is so much clarity in Dave. Some days he has such get up and go and I can see him actually enjoying life, but then there are days that sentences are only half finished, he can't find the trash can, laundry room etc and all he wants to do is sit on the couch and watch tv because he is so tired. At the last dr. visit he was given the muscle relaxant for the tremors, muscle stiffness and the body jerks and, unfortunately, one of the side effects is tiredness. This just adds to the already tired feeling Dave has all the time so it is something he fights daily. (There has been improvement in his tremors but only slight improvement in his stiffness when he walks and the body jerks.)  It is hard to get him to want to go when it is so cold outside and dark so early and on top of all that living in a home that is heated with just a floor furnace (which leaves only the living room heated and the rest of the house COLD).  With all the weight Dave has lost it is very hard for him to get and stay warm so why go out in the cold when you are already cold, (Dave's words). Just to get him out of the house once in awhile I can get him to the mall and walk around or sit and people watch, some days it goes well and others he can't walk but maybe a quarter of the way in the mall and then he is ready to go home and take a nap on the couch.

On Christmas day we were invited to Jay St. Clair's (he is the Out Reach Minister at our church) for dinner. It was so nice to get out and enjoy the evening with such a sweet family.  We enjoyed hearing Jay's and Julie's story. We had such a good time! I did mess up by not helping Dave with zipping his coat. It is something we struggle with-do I help him/does he want help, usually when we are out he prefers not to have help, still struggling with pride I guess.  The next day Dave was tired and had more confusion than normal and napped on the couch.

Just last saturday we went to Adam and Michelle's to celebrate Christmas. That was a fun day, taking a drive in the "country" and seeing the granddaughters!! We were there a few hours and I could see that Dave was very tired so home we went and Dave napped and went to bed early and the next day he was really having problems.  Things are different indeed. Now we decide if the activity is worth a couple of days of napping and being tired and increased confusion before we do them. Family is always worth sacrifing for and we do it now because we know one day the only outings will be dr visits.

Even celebrating the start of the new year was different and forever will be.  Last year we were at DeGee and Mark's and this year Dave was in bed early and kept apoligizing for his inability to stay up with Gabriella and I. We knew these days were coming and I guess they are here already.

So what is in store for us in 2013? Well, we will keep monitoring Dave's progress and try to anticipate the changes so we can be prepared. I will continue to find support. There is a facebook "support" site called Memory People. It is a closed group so whatever is posted is only seen by its members. It was started by two people who have been affected by Alzheimer's-one is struggling with the disease and one was the caregiver to his father for many years. It has been the best support and informational site!! I have learned a lot about what to expect and get lots of helpful tips but mostly it is so good to have other people who can understand and identify with our struggles and frustrations, and to know you are not judged and they believe me and give me the courage and support. I know there is a lot of controversy about virtual support and how things are not real but these people are and although there was no way we could attend they had their first convention in New York city and from all the postings it was like one big family reunion! (the group members are from all over the world!)Maybe some day Dave and I can attend.  Since I can't find a support group in town that is informational and positive this group on facebook will have to be my support!

I will also try to learn how to take care of household problems myself. It is hard because Dave wants to help or fix whatever the problem is but he can't remember or can't put into words what I need to do nor can he find the tools I need to complete a project. I know there are people out there who are more than willing to come and help us but I am getting tired of having to ask for help and would like to learn what I need to do....sometimes this makes me sad because Dave and I were looking forward to fixing the house together but now it is just me trying to figure it out but maybe it will be a good lesson for Gabriella, learning to be independent and learn some new skills.  It has crossed our minds that we may just have to give up learning these lessons and move on.

In terms of Gabriella, we will continue to try and prepare her for her next step and hopefully visit more colleges.  When the 2013-2014 school year starts it will be her last year of high school. That is going to be so hard for me but thankfully we have another year to wait!!!!  Never would I have thought that Gabriella growing up would be hard for Dave to accept. More often now when Gabriella goes out on a date Dave is setting a curfew.  We never saw a need to set a curfew on a date that was in the middle of the afternoon and ended when the movie ended! For whatever reason Dave is unable to deal with her growing up, I have no idea what he is thinking, maybe he is has forgotten how old she is getting and that it is time for her to start getting out in the world.

I am just happy that we made it through another year and praying that God will continue to bless us with His grace.

 

Monica

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