The Toughest Challenge Ever
My husband of nearly 35 years was finally diagnosed as dementia with Lewy bodies in March 2013. He is 82 years old, 22 years my senior, and prior to a TIA in Feb 2011 had always been in great physical shape, mentally bright, and healthy! A few months after his TIA he began to decline. An avid reader and crossword puzzle aficionado, he began to have trouble doing either activity. He had always been good with tools and building things, in fact, he built three houses with his own hands since retiring 20 years ago! He began to have difficulty understanding how to use tools, how to drive, how to do much of anything. He loved to garden, fish, travel, go to movies, interact with our friends. In the past two and a half years all of those loves have faded away.
I have witnessed an incredible roller coaster of his behaviors, emotions, limitations since he began to hallucinate and become paranoid during the summer of 2012. He was prescribed seroquel in September 2012 which has helped, but is not perfect. I have had many nights where he is up and wandering, a few times he has fallen, most of the time he is either unfamiliar with his surroundings or is doing busy work - moving things around in the house.
Two of the most difficult aspects of his condition have been capgras syndrome in which he does not recognize who I am and his difficulty in communicating to me in english. His native language is spanish, and although he has been well educated with a college degree and has spoken wonderful english as long as I have known him, he constantly slips into spanish. I have only a rudimentary understanding and often am at a loss as to what he is telling me. This is extremely frustrating for both of us.
The capgras is even harder to deal with, especially when he thinks I am a bad person out to harm him. He has tried to exit the car as I drive down the highway a couple of times. He has left our property and headed to town a few times. We live in a rural area and it is several miles to town! I finally put a lock on the gate, and the property is fenced, so he can't get out. I signed up with medic alert and put a bracelet on him just in case he gets away.
Once the neurologist made his diagnosis of LBD last year I read everything I could about this horrible disease, including finding the LBDA website and this remarkable forum.
I understand that much of what he is going through is beyond his control. There have been times when he is almost himself, as sweet as in the days before this disease took control. But more often then not there are the endless hours of him wanting to "go home", insisting that I am not his wife, mad at me because I won't take him to his "casa". At the early phase of LBD he was overly concerned with finances. Now his only worry is "where is my wallet", taking out the few dollars in it and asking me to count the money for him. He has trouble staying focused on a movie or tv program. Sometimes he talks back at the tv. He has tried to lock me out of the house a few times, has accused me of taking money, or having "friends". He often sees other people around, even talks to them sometimes. The other night he was afraid to go to bed because he saw a donkey laying in it!
I have made sure to get our legal and financial needs in order, and am fortunate that my husband worked in the health care field for many years and has friends that are available to advise and help us, but none of them live near by. Following his retirement we moved about two hours away from the big city, so we do not have a lot of friends or relatives close by. So I am mostly on my own right now. I take care of the house, of him, the huge yard, and try to limit any shopping trips to those few mornings where he is fairly calm. We rarely visit friends anymore because his mood can change so quickly. So it gets a little lonely out here.
Thank you for letting me get some of this out. Although I have a handful of people to call and keep me sane, I hate to bother them too often. They have their own lives and I do not want them to worry for me. Here in this forum though, all of us can relate to what is happening. For us, this has been the most difficult challenge ever in our life together. And I have accepted that our lives will never be the same.