I had no idea, when I started this blog, that I’d be writing about my dad and his journey through LBD. In some ways it feels disloyal, and being a pretty private person, it feels like I shouldn’t be telling whoever may be reading this, details of his struggle or my heartbreak in walking this road beside him. In another way, writing is therapeutic for me and it helps to ‘write it out’. Also, I think that if anything in dad’s journey can help any who come behind, it would be worth it. The world of LBD is full of uncertainty and second guessing. It feels very lonely sometimes. There are few doctors who really understand the differences in an LBD patient versus an ordinary Alzheimer’s or dementia patient. Then too, there are so many, many variables with dad and all the other physical ‘issues’ he has. It’s so very hard to sort it all out. What is what? What is causing what? Writing on a blog certainly isn’t going to clear up any of these problems but I can’t begin to tell you how comforting all the thoughts and prayers, that came from my last post, were. So, I will continue to ‘write it out’ and thank all of you, from the bottom of my heart, for any thoughts and prayers you send dad’s way.
Since I wrote Heart Broken, we’ve had to reevaluate the way we were helping dad. It began as helping him through augmentation but soon became apparent that things weren’t going to go back to normal once we got through that time. Since before Christmas, there’s been no ‘normal’ in dad’s world. Every day is different. Lots of times every 1/2 hour was different. We were all wearing out. Our families were wearing out but, most especially, mom was wearing out. THAT would be a total, complete disaster. I can’t even begin to imagine what would happen if mom collapsed. Something different needed to be tried. So, on Wednesday, we started bringing dad to our house for the day. So far, it seems to be going okay. He comes and can watch TV, sleep, take a bath (which helps so much with the tension) sometimes he takes 4, 5, 6, in a day.
It’s a painful experience when the parent-child relationship shifts. I can’t even begin to put into words what my dad’s been to me. No parent is perfect but I was a grown woman, with children of my own, before I was able to see that my dad wasn’t. He was such a great dad for me. He could fix any problem, fix any thing. He was a jack of all trades. There wasn’t anything he couldn’t do. It’s more than hard to watch all those abilities disappear. To watch him struggle to put on a shirt and button it up. To watch him struggle through the process of washing dishes. To watch him labor over my broken cheese slicer, trying to restring it. Dad would have made a fantastic engineer. You can see his engineering mind working so hard but not quite reaching what it’s striving for. It seems so wrong. It IS so wrong! To have him engaged and active in a conversation one hour and confused about a simple thing the following hour. These are all things that are hard to accept, hard to ‘get use to’. Hard to not weep about. I’ve done a lot of weeping this past month. I’m sure I’ll do a lot more. It isn’t easy to adjust to the role of problem solver and caretaker for your parent. All your growing up years these were the people you relied upon to problem solve and care for you. These are all things that are shifting in my world, in his world. I wasn’t ready for this. Who ever is?
I’m thankful that, for now it seems, we’ve been able to get the out of control thrashing managed. His body still moves, his legs still jerk but that horrible, horrible thrashing seems to be gone for now. This is a major victory although I’m smart enough to know that we certainly haven’t won the war. I’m just grateful for whatever reprieve we get on that front. So, although things are certainly not what I would wish in regards to dad’s health, they haven’t been as bad these past days either. I doubt dad would agree with me. He’s the one who doesn’t ever get a complete break. Always, there’s some little thing he has to be dealing with but in the overall scope of things, I’d give these past few days a B.