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
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