History of denial of condition, specifically dementia issues, may complicate this. Low safety awareness, wandering history, aphasia/dysphasia, high fall risk, diabetes/high BP and other medical issues not likely to be objected to as well. We have been repeatedly told we have to stick to the do's and don'ts of dementia with him, so how do we address real concerns when there is an insistence of his inclusion? He is incapacitated and in memory care but because he is getting ideal services for his needs, he is functioning exceptionally high there as a result of all those needs met and only having good choices really. Still he is very angry, and mean, over his losses because he is 100% sure he is fine so we are the devil.... The center sees how he is while getting optimal care, what they can't see or even seem to grasp is alone he could not do those things because he doesn't see the need for safety again because he is "perfectly fine." It's not clear they get that those resources as is are WHY he is doing so well. It actually quite frustrating because if he could recognize the need to do all they are doing for himself he'd probably still be able to be home :( and we wouldn't be so hated. This feels like a catch 22, we are just not sure again how to deal with it and this is always my best source! Just trying to get ahead of this, it feels like another trap.
My mother, with Dementia in a NH setting was not included. They would have agitated her.
I would tell the MC that they are free to reduce his supports if they will take financial responsibility for any injuries that occur, including ambulance, hospital, rehab and LTC charges that are not covered by insurance.
Your LO is in the throes of dementia, incapacitated, and where he belongs. He's doing well because he's being cared for properly, and that's what's important. If he cannot act civilized toward you when you visit, tell him you'll come back when he's in a better mood. Then leave.
Do what's best for you at this point and stop catering to someone who's dealing with anosognosia and will never likely believe there's anything wrong with him. The goal is to keep him safe and well cared for....if you're the enemy for making that happen, so be it. I was the bad guy for years in my mother's eyes, which didn't stop me from getting her the dementia care she needed. There's nothing logical or sensible about the condition so try not to internalize the angst you're being shown. It's hard, I know. Dementia sucks in every possible way.
Best of luck
Sounds like your afraid they will send him home. You don't think MC realizes that because of their help he is doing well and if it doesn't continue, he will decline because he can't do it alone? I think ur FIL has enough wrong with him he could be placed in LTC if needed. Doubt if he is the only person who has improved. He gets 3 meals a day. Someone bathes and helps dress him. Probably gets some form of therapy too.
I would tell the SW (or whoever is in charge of the meeting) that you have concerns you'd like addressed. That you don't want him there as you talk about him. You need the staff to be upfront and honest with you and your not sure if they will with Dad sitting there who is in denial of his health problems and Dementia.
This is a stage and as his Dementia worsens he really will have no idea what is going on.
My brother, when he was in rehab, was very engaged and engaging, very concerned in his own care, working out whether he should go into ALF or remain in home, wanted information and input and wanted to weigh it all and was engaged, and mentally quite able to participate. He was great at attending the care conference where everyone from PT, OT and dietary were there as well as the discharge planner and social worker. So for him, yes.
You know your FIL best. In this instance you are the expert. You will know if this would be comforting and informative for him or disturbing and anxiety triggering. I leave it to your best expert judgement.
My mom has dementia and a host of other conditions, in total denial too. She has been at her facility for over 1.5 years and still believes "she is fine," that "the NH folks do nothing for her," that she "can take care of herself." None of which is true.
She is included on the every 90-day care plan calls as her facility wants to give them as much respect as possible. My mom typically tells them NOT to include me, as I am the devil for "not taking her into my house and providing the 24/7 care she needs." Fine. For the most part when I was allowed to participate in those calls, she could not understand much of anything that was discussed and mostly would just be disruptive.
But certainly if I have any concerns, I call her assigned physician at the facility. The MD will respond to texts too if there is something pressing I need to convey. Ditto for the lead unit nurse, her floor nurse or my mom's assigned social worker. All to say, the care plan meetings/calls can be "pro forma" but just call her assigned/lead physician (not like one calls weekly of course, you get it). But assuming you are "the health agent" or "representative," someone on the outside is the "point of contact" they will speak with you.
And these facilities have seen it all before, especially the loved one saying they "are fine," "they do not need to be there," that they want to go home," etc.
All of this is an aganozing journey. God bless all dealing with this. It just is what it is. Practice self care and if the LO becomes verbally abuse/toxic; as others have said leave, say you'll call later, take a break from the visits/calls, go no or limited contact if that helps. They are in their own reality, if they have made you the devil, then there is no convincing them of your reality, the reality they need to be where they are. I am the devil for my mom, nothing will change that.
You could call or email the Admin. and explain how you'd like to have a meeting without your l/o present and explain why. You may be able to either have a phone conference or F/T meeting.
You need to make sure everyone, admin, nursing supervisor and anyone else except the aides, involved in his care are present. If you have any notes that has a record of his behavior bring it to the meeting. Also, if they insist that he be there, contact either the social worker at the facility or make an appointment with an APS agent explain your concern and ask them to be part of the meeting.
They'll probably want to meet with him first to get a handle on the situation. After that, they shouldn't have any trouble backing you up. When the rep goes to visit your l/o, don't mention from APS. Your more likely to get a more honest response that way.
It's a sneaky way to go about things, but, I think you'll get the best results this way.
Good Luck.
My Loved One , “IN THE REALITY” he lives in , truly believes there is nothing wrong with him … I am so lucky that he is not hateful . He was angry in the beginning, very upset but never ugly .. He is still home with me and I am still able to tend to things and keep him safe . We are 5 years into to it at this time. He also has a bunch of medical problems. I have
2 1/2 years of Caretakers meetings behind me and I have learned so much . I was truly worried about my own sanity . I realize every patient travels their own path and no 2 paths are the same . My man has lost the ability to comprehend what is happening around him . In the beginning the hurtful things that came out of him mouth were because he was having a rough time dealing with the thing he was loosing . His ability to drive , carry a wallet and credit cards , pay his bills and the biggest thing was playing golf. I took those hurtful things to heart until I know where they were coming from . I related myself to the losses I would feel if it happened to me. . Living in this house is easier now than it was then . When I am no longer able to keep him safe he will also end up in a care center . I fudge the truth when I know it would upset him , change the subject when he gets upset and keep things light . We even laugh at times. I have a DPOA already and would not include him in conversation with the staff when the time comes. If you are not involved with a CareTakers group I strongly suggest you look into it . It showed me that I was not alone and that there was help out there . All I had to do was look for it . , prayers are with you …
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