My older brother has dementia and is bedbound. He lives in CA and I live in MA. I am his DPOA, Trustee, and Rep Payee because he has never married and has no children. I am also his medical decision maker. He had a leg amputated a couple years ago and although we tried several courses of PT and OT he was resistant, and made no progress. He lives in a RCFE and they do a wonderful job of keeping him clean and free of bedsores. He has a private room and there are only 5 other residents in the house. I have paid extra for wheelchair transfers so he can get out of bed 6 days a week and potentially be taken outside for short strolls in good weather. Lately he has been refusing these transfers and prefers to stay in bed. A couple years ago I hired a Geriatric Care Manager to help with his doctor visits, mail, and arranging things like haircuts and nail care and finding specialists like mobile dentists. She has been invaluable. He and I used to have frequent Facetime visits, but as his condition deteriorated he lost the ability to turn on or answer his phone or tablet. Our GCM helped me set up an Alexa Echo Show in his room, so I can "drop in" on him and we can see each other as we talk. He COULD use that device to play music or shows or answer questions like what day/time is it or what is the weather (I printed out a sheet of commands and laminated it; it's hanging on the wall) but he has no interest in trying. Recently he has started complaining that he doesn't like "this setup that you arranged for me." He wants "his money" (he can't write checks anymore, he cannot manage his finances) and thinks he is "in prison" and this is something I have arranged for him. He often asks whether I know if Mom and Dad are alive (they passed 20 years ago; he lived with them until they died and he arranged for their cremations). I am just not sure what to tell him anymore when he asks for control of his money, or says he is unhappy where he is and that I am to blame. It's as if seeing me triggers this response like Pavlov's dog. I try steering the conversation to other topics, but it isn't working very well. I am calling him less and less. He can be quite pleasant with other people. He can also be abrasive and inappropriate. I guess I'm asking for tips on steering conversation to safe topics. Maybe it would help if I had an agenda or script prepared. Thoughts?
The reality is his health is failing, BUT you did not cause that. He is not in prison, he is just feeling sorry for himself. Nobody wants to face their health decline.
I know it hurts to hear his comments, but it's not your fault and cannot be fixed. You can try saying you are doing your best, his health issues are not your fault, you didn't cause them. You love him, feel bad about what's happening to him, and are doing your best to help him.
I've been taking care of my Ex husband 3 years, a Vietnam Combat Veteran with brain injury and PTSD. I have helped him more than anyone in his life, yet he became so hateful toward me, I had to get him out, and finally got him a new place in November. I'm here at home, enjoying my home again, after busting it 2 weeks to get him moved in. He never shows any appreciation for everything I've done. I know how it feels, believe me. I know deep down I have been a generous and kind-hearted person, so I sleep fine at night. It was a hard 3 years!
If he keeps being negative, you should limit your calls. Who takes care of YOU?
You cannot take what your brother says to heart. If your visits upset him, you may have to cut back. This is no longer the brother you grew up with. His brain is damaged.
Sounds like you've done yeoman's work. I'm wondering if you've considered moving him to a facility close to you? Seems like you are paying a lot of money out of your own funds that you will need for your own future. If so, this really isn't sustainable unless you have really robust savings.
Your brothers brain is permanently broken and he now lives in his own little world and it is there that you have to meet him and not expect him to meet you in yours, as he can't.
To me it sounds like you're doing everything you can to keep him in your world instead of now embracing the world that he now lives in.
You can post signs all over his room as to how to do this or that, but his brain can no longer process the written word(more than likely)and his world is becoming smaller and smaller. But it's his world, and you must meet him there.
There is nothing easy about dementia, and I'm sure it's even harder from many miles away as you can't get a first hand look into your brothers life other than what the staff tells you.
But at this point I would keep your calls to a minimum, and perhaps not even use facetime if seeing you triggers him, and just let him hear your voice to see if that helps.
And if he gets upset over anything during your conversations just tell him that you'll talk to him another time when he's not so upset, and that you love him.
Also there is no need for "an agenda or script" as his world is changing constantly and what might work today won't work tomorrow. You are overthinking this whole situation because your brain isn't the one that is broken, and you're still trying to make your brother with his broken brain fit into your world, instead of you now fitting into his.
It's just a matter of changing your thinking and accepting this new reality that your brother now lives in.
I wish you well, as you travel this very difficult road with your brother.
I am uncertain if you have any real specific question for us, but the only answer to "You have me in prison" is "You are where you can be safely taken care of. You have no worries. All will be fine. I am taking care of everything for you. I know you aren't always happy about where you are, but that is life, and we will have to go on making the best of it".
There's really not an answer that will satisfy him as his confusion progresses, nor will he likely be able to continue to use any tech devices. But for now you will just take it a day at a time, and unfortunately, expect the unexpected.