Hi everyone - My Dad (78) had a major stroke 4 months ago. He was diagnosed with global aphasia while in the hospital and was transferred to a rehab facility for PT, OT and Speech Therapies. He refused all therapy while in rehab and decided that he wasn't going to take any of his medications for his heart failure and blood pressure anymore. He said he would think about it once he got discharged.
He and I agreed that he would transfer from the rehab facility to assisted living where he could do therapy there with the hopes of eventually going home. His house is in NY and I moved to GA four years ago for husband's job, so I had flown my Dad out to be in a rehab and AL facility close to me. My Dad was involved in the AL decision, and met with the head nurse and everything seemed fine. The rehab would not release him back home alone (he can also no longer drive), and living with me is not possible due to work and associated travel.
Jump over to now, my Dad is still refusing all therapy, all medication and does not want to be in assisted living. He can dress himself and eat, but he has issues bathing and cannot read, write, or speak 90% of the time so people can understand him. He wants very much to be in his own apartment, but he has already said that he will refuse any help of caregivers coming to his home to assist and that it has to be me. Unfortunately, i can't be there daily and see him a few times a week in AL.
My question is - how do i go about seeing if he if he has capacity and getting that formally documented, when he refuses all medical care? I believe that AL is safest for him, but i know he has rights in all of this and i am trying to be respectful and give him as much independence as possible. He has tried to escape AL previously (but didn't succeed), but even if he did escape he has no way of going anywhere since he cannot speak or read. He is also showing signs of dementia (from the stroke i believe), where he is starting to put odd things in the refrigerator, is not remembering recent events, etc.
I do not know if legally in GA he can sign himself out, but my concern is that in his own apartment he could be a danger to himself and others. For example, he cannot use the phone or call 911 - or even communicate if he did reach someone.
I am his POA and medical advocate, but i do not have guardianship. Sorry this is so long-winded. Totally confused about best thing to do here and looking for any advice. Thanks!!
For AL, i have gotten the visits decreased to 3 times a day and i have gotten his meals delivered to his room so he doesn't have to interact with others. He is very much a loner and this was stressing him out, but now even that is not good enough.
Regarding the depression, I did reach out twice for a psych evaluation since he has been in AL and my Dad kicked the doctor out of his room. He was diagnosed with depression while in rehab, and we did start anti-depressants then, but when he refused all meds only after about a week - that was one of them. I tried talking to my Dad about restarting the medication again (even the anti-depressants only), and he doesn't want any part of it, so i have worked with AL to remove all medications order from his chart.
I also have him under Hospice care now, which AL recommended because he will face complications from not taking meds. His BP is already around 190/95 ish, and i know it's just a matter of time unfortunately before he faces another stroke. I have had the heart to heart with him, and i understand he doesn't want anything to prolong his life and i am not going to fight him on that - his decision and right. But during the meantime, he is being very difficult at the AL facility where i can't even visit him without him demanding i take him out, and attempting to follow me out of the building, etc. He is also getting the nurses to call me everyday so he can ask when he is leaving, etc.
I am starting to think i should take a brake from visits, but i don't want him to think i am abandoning him.
I appreciate all the advice and for letting me vent a bit :)
I think you will probably find that what you need to do is nothing at all. Your father is in an ALF that you're happy with, yes? So he is safe and comfortable, just miserable about being there and wishing he could retreat to his own little place and not be bothered by people, is that about it?
1. If you haven't already, read "Being Mortal" by Atul Gawande. You will feel better about how complex and fluid the ethics are!
2. Work with the ALF team to fine-tune his care plan so that he receives the maximum support balanced with the minimum intrusion. It won't be perfect, it will just be the best everyone can do, but that is all anyone can do.
It seems very unlikely, would you agree, that your father would be able in fact to go ahead, plan his discharge, and carry out a move into an independent apartment? If he made any serious moves towards doing that, he couldn't do it without a detailed discharge plan and at *that* meeting the ALF team and you and your father's doctors together would raise the issue of determining his legal status. But God willing there'll be no need.
In any case, before you move on to the mental capacity assessment, I think if I were you I would ask for a psychiatric assessment. Depression after stroke is very, very common and it could be that he needs treatment for that. It's a whole different issue from his heart meds. Making a considered decision to stop treatment for a chronic illness because you've had enough is one thing. Being plunged into depression by brain changes, and seeing everything from that bleak perspective, is another. It is certainly worth ruling out as a factor first of all.
He is not alone if he wants a quicker death, and there is no reason why you should fight against his wishes if this is what he wants. All of us are going to die. It might help you both to understand the aims of the treatment he is resisting, and whether they are in line with what he wants.
Best wishes in a difficult situation.