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