Right now I am reading 3 books, well actually reading two and using one more as a reference. One of the books is entitled "The 36 hour day" and I use it more as a reference. I started reading it as it was recommended to me by some friends who have just been through this journey with his father and his mom said it was helpful to her. I am actually reading "Staying afloat in the sea of forgetfulness" and "Creating moments of Joy". I have to say that my favorite book is the Creating moments of Joy. It has given me the kind of tools that I have been looking for in making this journey not so awful and sad. I remember when Dave received his diagnosis that we were told that Alzheimer's was also called the long good-bye. How awful! Unfortunately, at the time and for awhile after, I truly felt this was the long good-bye. It was so difficult to see that there could be any joy in our lives especially as Dave seemed to be progressing so fast. All I could see were all the ways I was losing him and the rush to get some things (important things) done. For almost the first year it was so hard to see anything but sad things....Dave's inability to do some everyday small task was so overwhelming! You get this vision in your head that everything is over and then the reality of how all responsibility is now on your shoulders alone hits you and your head just wants to explode.
It is interesting to me, now, that at the beginning there was a whole Alzheimer's "lingo" that we were bombarded with, with no explanation as to what it meant. Now, as time has progressed I am finally learning what some of this "lingo" means! I feel like there needs to be a special dictionary or reference guide that explains what all the "catch phrases" or "Alzheimer's speak" means. I have heard the term "live in their world" so much but had no real clue what that meant. It reminds me of a movie you're watching that has flashback sequences, do you mean I am to act a certain way, dress a certain way, speak a certain way? What does that mean???? Well, I think that I am getting a handle on that one thanks to the book "Creating moments of Joy". It is actually very helpful to live in their world as it gives you a clue as to where they are in the sense of progression. Sometimes Dave will be talking about someone or a memory that has nothing to do with the day, or even this year. I respond now with questions that I feel will encourage him to continue with his memory, which is usually a happy memory, and we get to have a conversation filled with happiness! I like this! The days are long and tiresome but right now they are not so sad and difficult.
We are learning to accept the things that he can no longer do or has difficulty doing. I help him more each day with deciding what kind of clothing he needs for the day and I now remind him that he just wore that shirt the day before and maybe he should try a different one. I do more of his personal care....thank you to whoever invented the electric shaver!!! These moments are so intimate and precious to me. I know that as time progresses I will be doing more and more for him but isn't that what love is about anyway!? When I think of the sacrifice that God made in sending His son to us and the sacrifice Jesus made of Himself for us out of love who am I then to see what I will be doing as a burden? It is nothing and only by the grace of God will we get through this.
Don't get me wrong, there are days when I still get really sad and days when I am frustrated and lose my patience. But those days are fewer and fewer. Living in his world has actually put us living in a world all our own. I forget there is life different than ours past our front door. Even with Gabriella still living with us at home and her coming home and telling us about her day and us talking about her future it is still hard to relate to much outside our world. I am not saying we don't leave our home because we still go out and do things but I feel disconnected from others. It is very hard to describe what I mean and unless you have been a full-time caregiver you may not understand. I am sure if I worked or had continued with ministries at church I wouldn't feel the same because I would be interacting with people in a way that has nothing to do with Alzheimer's. Now that I think about it, I am sure stay at home moms can understand what I mean when I say that you forget how to relate to the rest of the world.
I do get some respite thanks to my care group, but even during those times when I am away from Dave it doesn't feel the same. Acceptance of how our life is doesn't mean that I no longer miss him because I do, or that we are no longer fighting this disease, it just means we are concentrating more on the joyful times no matter where Dave is in his mind and I am willingly going to walk this journey with him. We also continue to encourage Dave to keep doing the task he is capable of doing. As I keep telling him....as long as he can continue to do the dishes I don't care if he can't do anything else! HA!
Every day is the same (routine,routine, routine) yet it is different depending on how clear Dave is. We know that we usually have a small window each day that he has the energy and mindset to go out and do something for fun, and that is okay because we plan accordingly. Acceptance of anything is a good thing. For me it allows me to see the Dave that is still there,the essence of who he is. He still has funny one liners they just take a little longer to be verbalized and may be a couple subjects behind but he is still Dave. Each day is a trial and error kind of day, some days you have a good idea that seems reasonable and doable (making a vlog-video blog) that turns out to be not such a good thing (Dave not feeling he can talk on camera, people not being able to open the video and my refusal to put the video on YouTube), but that is okay because tomorrow is another day.
Monica
disclaimer: the author of the book "creating moments of joy" does not know who i am nor reads this blog. i have not been compensated for the mention of her book or any books mentioned.
