I wish I had better news to report but unfortunately things are still really terrible with Dad. He is experiencing constant delusions and hallucinations- both visual and auditory. I can only imagine what he must be thinking and feeling- he has to be so scared. There’s no other way to describe what’s going on with Dad other than he’s just acting completely out of his mind. There’s just no getting through to him in order to manage his behavior.
Dad thinks the ‘Shards’ are still attacking, the Gardener and his people are in the house, his doctors and their families are dead or God is commanding him to do certain things. He’s consumed with the fact that he has a blood clot, which he believes is in his head instead of in his lung where it really is, and that he’s going to die from it if he doesn’t get a special surgery to save him. Dad is still extremely OCD when he’s a little clearer and when he is a little more manageable, he paces back and forth for hours talking to people- we don’t know who? He seems to be afraid of anything electrical like the TV, the trash compactor, the lights on the Christmas tree, etc.
Despite Dad being so over-exhausted, he is still fighting strong and we are definitely on guard. As a result we don’t sleep much for fear he’ll try to run out of the house not to mention that he’s up at all hours of the night. The other evening, he had Mom in a choke hold for a few seconds and then relented when we tried to prevent him from fleeing the house. When we work to get him in the shower or to take his pills, he fights us something terrible. Sometimes we just let it go and walk away but there are times when it’s just not possible.
Dad is refusing to take his medication, he’s not eating and not sleeping very much. I’m sure all of these things are adding his condition. Every now and then we can get some pills and food in to him, but it’s not consistent and stable enough to make a difference to his current state.
We feel like we’re fighting a losing battle. We just don’t know how to get Dad back to reality, back to us. No matter what we try, nothing works. It’s so sad and yet such a tiring handful to deal with constantly. We’re all completely exhausted, emotionally and physically drained.
Mom is deeply saddened and I feel absolutely awful for her. It’s extremely difficult watching Dad succumb to this terrible disease but I would think it’s even harder for Mom to face. I can only imagine what it’s like to watch your spouse disappear into Lewy land. To know your life partner, your best friend of 34 years is no longer with you in mind and spirit- that has got to be the worst feeling. The emptiness, the loneliness, the loss and sorrow, the feeling of an uncertain future without your beloved- it has to be completely gutting. We all grieve for Dad but more times than not I feel like we don’t even have time to grieve as we’re too busy trying to keep up with the Lewy rollercoaster. I could delve in to our own emotional rollercoaster but I think that’s a topic for a different time.
As for our recent doctor’s visit, the neurologist wasn’t able to help us that much. Dad wasn’t able to make the appointment but Mom still went in hopes of being able to see the doctor to get some much needed help. Unfortunately he was basically only able to offer up a few nursing home suggestions. We have a call in to Dad’s psychiatrist and we’re waiting to hear back on her opinion.
So for now, please keep us in your thoughts or say a prayer. Thanks to all who continue to offer us kind words of love and support.
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