I don't understand where's the advocacy for the caregivers trying to keep their LOs safe?
Good morning, long time lurker here and first time venter. I apologize this may be long... My 85 yo Dad has been living alone since my Mom's death in '94. Dad has been slipping for a few years but managing pretty well. He had a MRI in '10-'11 after a small stroke, that showed brain shrinkage. I have been on high alert since, as I am an only child. He was doing pretty well until he developed macular degeneration. His driving was scary but after he totalled his car in '17 the state took his DL, of course this was my fault. He had several stress related, undocumented TIAs (according to him) following this loss of his license.
Since this time, I take him to all his Dr's appts, run errands, banking, etc. His GP sent us to a Senior Health specialist and they diagnosed vascular dementia and mixed dementia with behavioral and delusional disturbances. This was my fault as well, making stories and stuff up to make them think he is crazy. I have a journal of things he has done and said, so no inventions are/were necessary, in fact the Drs' never even asked, it is obvious to everyone but him, this is pretty routine I have learned here. Upon cleaning out some of his drawers he asked to be emptied out I found paperwork where his GP tried to send him 2 years prior and he had hidden the paperwork.
Fast forward, his GP, neuros, senior psychiatrists have all recommended AL or MC. His inital MOCA score was a 15. We retested in June, 6 months later and his score was the same. He told me when he came out of testing that he did better this time and this little nurse was more helpful than the first one. So everyone talked to him (health professionals) about the benefits and safety concerns of moving to an AL. We actually went and visited one, very nice. I've already told my kids to sign me up when I'm not safe anymore. Just put me somewhere you'd be happy living. At the end of each conversation, the Drs would explain, we can't make you leave your home but we are very concerned for your safety. He acts like he's listening, soaking in all the concerns and considerations but he's just chewing his tongue waiting to get in the car to let me have it both barrels.
He didn't allow his Father to live alone once he started falling and had a stroke but I am supposed to sit by and watch him do whatever he wants, how he wants. Oh, forgot to mention his group of "friends", all the same age, support him getting a scooter/moped to run errands on around town. Our town of 75,000, 9 falls in past 9 months, legally blind and these "friends" are encouraging him. It is a constant battle and I'm holding him prisoner, his words.
I understand that we have rights to live how and where we want, even if we make poor decisions. His GP did tell me, in front of Dad at his last appointment that I am to be free of guilt *when* he falls and lays there waiting on assistance or dies because that is his wishes. How on God's green earth am I supposed to accept this? Where we live the court's have ruled if a person has a clear moment of clarity in their mind they (the court) will not rule them incompetent. I am at a total loss. Yes, I have DPOA and Healthcare Proxy but these do not allow me to make decisions on his personal safety. I have met with an Elder Attorney but received the same information. At this point, I'm afraid someone will turn me in for elder abuse or neglect.
If you have made it this far, thank you for reading and I look forward to any and all advice. I fell like I'm beating my head against a wall and the wall is winning.
IF the doctors assure you that his dementia is not so bad that he cannot manage alone, then I would allow him to manage alone. He clearly doesn't wish to have your help.
And in answer to your question "Where's the advocacy?" I have not a CLUE, in this case. You have done what you can.
Either you have power to help here or you do not. If you do not there is simply not one reason on earth to witness the outcome. For outcome there will be. Sorry that the legal and medical system seems to be letting your Dad down.
As to his actions about and toward you, that of course is not your Dad, but the disease. Unless he has ALWAYS been that way. In which case, "that's Dad" and his actions will lead where they will lead.
I have always been one to admit that not everyone wants our care, and not everyone is deserving of our care. As to guilt? Did you kill someone recently? If so, then you should feel guilty. Otherwise, I absolve you. Hee hee.
I ran into this a bit when the state was required to check on his driving due to his accident. His Gp and his Optometrist refused to say his vision was too bad for him to continue driving, they signed affidavits, honest! Luckily, when I took him to the DL's testing office he read letters instead of numbers on their eyesight examine, failing him immediately with no recourse.
My Husband and I even offered to build and pay for a small house on the back of his property to be close and available. At this point, I think his refusal was a blessing because I would surely be off my rocker by this point.
Thank you again, AlvaDeer
His own doctor has absolved you of responsibility.
The sooner you let go, the sooner he will fall and end up either dead or in care.
I know that sounds awful. But he doesn't WANT to be safe.
Read Atul Gawande's On Being Mortal.
I read a summary on Being Mortal, very interesting, I'll have to order or download it. How far does that train of thought go? Does this include medications and treatments to prolong life as well or just to do what they want, when they want? I would refuse to let him not go to the Dr if he were sick or in pain, but if those are his wishes.....Dad wants me to check him into the Mayo Clinic to have eye transplants and a spine transplant. They can do all of that now ya know says my Dad. I've had 3 Neurosurgeons all tell us absolutely not on a fusion for his spine and taken him to numerous macular degeneration specialists without any results due to the excessive loss of sight.
He wants me there at his beck and call to run and do everything but doesn't have the capacity to understand all that he is demanding and the cost of it on me, my family, home, work, etc.
I'm sorry, I don't mean to sound as if I'm discounting your advice. I'm just sinking in all this quicksand.
I also got them to accept wearing an alert necklace that automatically will call the response center if they have an emergency. Very recently one of them fell (but did not get injured) and the other couldn't help her up so they used the button and it worked like a charm. The EMTs were behind the door in no time and the response center also called the family contact person at the same time. This service is for my benefit as well as theirs. Maybe you can get your dad to put some of these useful "helps" into place for *your* peace of mind, which may be an easier sell to him. Not much you can do if he's got most of his mind but is uncooperative. Good luck!
He really doesn't have most of his mind but no one is willing to make that next step in helping me, help him be safe. He currently has home health coming in almost everyday. He tells them what they want to hear, then complains to me and does what and however he pleases because nobody knows better than him. They're just wasting the Gov't's money and getting all they can of it.
Best of luck