One of my goals for this blog was to offer some tools, tips and lots of candor to those who are embarking on this twisted, ever grotesque and incredibly LONG journey. When it became painfully clear my mom had some kind of dementia, I had no idea where to turn or what to do. Everything just seemed incredibly confusing and overwhelming….. Dad was struggling to cope and I lived 5 hours away in New York City. My visits were frequent, but still…. there was always something to do or something I was forgetting to do. Frankly, figuring out the right move, which pills to give her, finding the right doctor and learning how to deal with your own baggage was frustrating and mostly infuriating…. and to drive home this point, it took me almost three years to find out that the Banner Alzheimer’s Institute was located smack-dab in the middle of Phoenix………………. all this time…. a 10 minute drive away…. were we too late?
Fast Forward…………..After convincing dad that we had to go, we finally got our appointment (and the thumbs up from the insurance company—dementia ain’t cheap folks) 2 days before my big trip to SE Asia. The result: Frontotemporal dementia.
Symptoms include:Increasingly inappropriate actions (BIG CHECK)
Lack of judgment and inhibition (BIG CHECK)
Repetitive compulsive behavior (OH GOD, BIG FAT CHECK)
A decline in personal hygiene (SORTA CHECK)
Lack of awareness of thinking or behavioral changes (UM DUH! CHECK)
So do I feel better knowing that my mother is going to continue to decline and exhibit even more demented behavior? No. But I am relieved to have a new “diagnosis” (can’t really know until she is autopsied) that makes sense and allows me to understand what’s going on… I know this doesn’t change the end game…. but it gives me peace knowing that we are doing what we can to make her life and our lives just a little bit better.