What wasn’t explained was the financial, emotional and physical cost from multiple disabilities that so often go hand in hand with growing old, or the fraud and exploitation by the Professionals in the industry that I would encounter Dad’s inability to handle his clothing or take care of his personal hygiene limited his independence and my own independence in ways I never imagined. The on going deterioration taking place elsewhere in his brain that caused him to revoke the family trust, give away his home and monetary assets, and then become engaged to marry a care giver I had hired, compounded that task exponentially. I was then ordered by the state’s conservator office to become Dad’s Legal Guardian and Conservator. That was my opening to a world of fraud and corruption that was foreign to me, and one which I was not prepared to encounter.
Dad’s body language translates as desperate, humiliated and at times, angry and my attempts to help, reflects more often than not as frustration, horror and anger at a system that ignores the need for education with this level of care for our elderly. The insults and verbal attacks that I have dealt with from care givers and Administrators who were young enough to be my children, has been devastating.
I have come to realize that Dad is not the only victim, but I have become a secondary victim of the Elder Care system myself. Not only have I become a secondary victim, but I have also become a secondary perpetrator. I hired the ‘Professionals’ that took away his right to ever stand again, I hired the facility that sent him to the hospital in congestive heart failure, and yes, I hired the care giver that became engaged to marry Dad and ultimately drugged him and assisted in kidnapping him which resulted in me making end-of-life decisions on his behalf. I even hired the facility that attempted to over-drug him with off-label psychotropic meds, in an attempt to turn him into a lifeless piece of celery lying in a hospital bed - all for staffing convenience. Dad has been referred to as a “Walker, Wheelchair & Slobberer” while we were sharing dinner, by the director of The Terraces, one of the most exclusive Senior Care Facilities in Phoenix, and, where I again had placed him.
Dad’s every move has been charted by mostly unethical and untrained care givers who can’t even spell, much less write a complete paragraph, and most of the time fraudulently, to justify or cover up their own incompetence. There is as much documentation in Dad’s charts about me as there is about him. We are both watched and documented by care givers, who are younger than my own grown children, who have no formal training, but are proud to dispense their new found power and control over those unable to fend for themselves. And………..we are informed that we are supposed to feel comforted in this restrictive setting?
Too often there is confusion as to the concept of dignity, with care facilities insisting on Dad performing task that are no longer possible for him to perform. There is no dignity in forcing someone to eat unaided, or take care of his own personal hygiene when it is clearly impossible for him to manage this part of his life independently. I have cried after observing Dad sitting by the window in his room, staring aimlessly out the window, while an activity, that I knew Dad would have enjoyed participating in, was taking place in another part of the facility, and being informed by the social director that the activities are ‘posted on the white board, that he can read’. Make no mistake about this, Alzheimer’s Disease isn’t about ‘forgetting,’ it’s about ‘progressive brain deterioration’ that will end in the death of the brain. When the brain dies, the body dies.
There is very little that makes any sense in Dad’s world, except to allow him to live unencumbered by thoughts of how it should be and to accept that myreality is no longer his reality. I continue to monitor his care, and I must admit it is upsetting when I find him sitting in a puddle of urine, his teeth nasty from days of not being brushed, and his hair greasy, when it was documented that he just had a shower that morning. I have learned that fraud and corruption go hand in hand with Elder Care. Where there is both opportunity and availability, there will always be those who take advantage.
Dad used to be a Somebody. He was a successful licensed General Contractor and a minister. I was once a Somebody too. Unfortunately, we have both been victimized by a system that has defrauded us, insulted us, and lied about us when we were the most vulnerable. I have now lost most of my financial stability as a result of personally financing Dad’s long term care, at the paid advice of a well known local, Elder Care Attorney. I have earned the respect of those who have dealt with us in an honest and ethical manner, and have become a source of irritation to those who have operated without either integrity or ethics.
At any rate, I continue to be Dad’s voice and his support. I’ve given up multiple times. I’ve cried myself to sleep. I’ve remained in my car in the garage after pushing the button for the door to shut, with the engine still running, wanting to drift off and not wake up. I’ve sworn I was done. We’ve been treated like second class citizens. We have been humiliated and subjected to ridicule by the very “professionals” that I was personally paying to provide and care for Dad’s varied needs. Somehow I always manage to get back up, dust myself off, and pick up where I left off. I’ve learned that the facilities change, the Administration changes, the care giver’s change… but I will remain my Father’s daughter and his advocate until his death.
I most probably can’t remove every bad apple in the bucket, but I can, I will let folks know that there ARE bad apples.
