Mom and Dad went to see her doctor today. We are continually struggling with the fact that there is no one, clear diagnosis for Mom. It is important to understand that there is no definitive pathological test to diagnose Alzheimer’s Disease, Parkinson’s disease or most of the other things that cause dementia. The only way to know for sure what someone has it by looking at the brian postmortem.
Dementia is a very broad category but it looks like Mom falls most into the category of having Lewy Body Dementia (LBD). The Lewy Body Dementia Association says, “LBD is an umbrella term for two related diagnoses. LBD refers to both Parkinson’s disease dementia and dementia with Lewy bodies.” You can see that this is a hard thing to figure out because Lewy Body Dementia symptoms are very much like the symptoms of Alzheimer’s and Parkinson’s.
In the end, what does this realization mean for Mom’s treatment? Not much. It will not change how Mom is treated because there are no different medications for Lewy Body dementia that we can add. The only way it helps is that it gives us greater understanding. For instance, we now know that Mom’s extreme fatigue is not caused by medication or anything we can fix, it is just part of the dementia. It explains why Mom’s cognitive functioning varies day to day and even hour to hour.
We are glad that this helps us understand the fatigue because by far the fatigue has been hardest to deal with. If we got rid of it, we could improve Mom’s quality of life substantially. We have gone bath and fourth trying to change medications and do a number of things to decrease the fatigue. Now we know that this fatigue Mom has been dealing with for seven years, even before the other symptoms started, is part of the dementia. Now we just really need to focus on how to live with it, rather than fight it.
As anyone dealing with dementia knows though, the disease affects everyone differently and you can never really predict tomorrow, but at least this information might help.