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.
Holly dear, you are such a blessing to your mom and dad..as well as we who share the chaos with you.
Ever since we changed my Dear One’s night medications to 25mg Seroquel and 10mg Celexa, plus 3mg Melatonin, he is sleeping more peacefully. As you know, each LBD victim is a different animal..lions, tigers, bears, kittens, puppies..each bringing the characteristics of its species.
Music, candles, aromas, seem to ease the chaos here.
May you continue to find solace by sharing your story..
blessings, Marjorie Carmen
Hi Holly, I hope today is a better day for your mom.I continue to be sadder and sadder as I read your blog. This Lewy Disease really has taken your Dad from you all. It is sad.We are always keeping you all in our thoughts and the kids are saying special prayers.Your outlook does not look good and I am sure you all are going to have even tougher decisions down the road. Keep your spirits up and get the rest when you all can.All my love Rick
Hello
I have come across your blog through your link on FB.
I hope you don’t mind me intruding. I currently have a relative suffering from Demintia with Lewy Bodies.
From reading through your blog you sound a tower of strenght to your mum and your dad. It must be very difficult to live with I hope things go the best they can for you.
Hi Lins,
I’m glad you found my blog! You are certainly not intruding. I originally started the blog to start as another place for LBD information and in hopes of raising awareness about this disease. As you may know, there is very little known about Lewy Body Dementia. I’m sorry to hear your relative has LBD but sincerely hope he/she is doing okay. Feel free to continue along with our journey.
Oh Holly, I had hoped for better news. You and your family are so strong to go through this. It is the loss of a loved one, but as you said, there is no time to grieve. I hope that there is somebody out there that can help provide some relief for your dad and his hallucinations.
I wish I could say something that would make it all better, but I know that’s not possible.
I am keeping you, your dad, and the rest of your family in my thoughts and prayers. As I said, maybe there is someone out there who will be able to help.
Hi Holly,
I’m hoping you and your family is ok. I recently came across your blog. My Dad has LBD but not as advanced as your Fathers.
I just wanted to say; you and your family are in my thoughts.
Hi no1daughteroflewydad,
Glad you found my blog and I thank you for your well wishes. I hope things are going okay with your family.
Thanks,
Holly