My father has been having some on going health issues for approximately a year. It ended up around June where he was admitted to the ICU after he was found unresponsive by my mom. He was given a trach, and was on a ventilator. He was moved to a specialized hospital from the ICU where they were to wean him off the ventilator and provide him rehab, when he was strong enough and made enough progress they sent him home. My mom and I learned his trach care, how to hook him up to ventilator when he required it at night time, how to tube feed him, and all other aspects of his care. My dad has been dealing with depression since this whole scenario has taken place, and getting him to find the motivation to do his therapy etc has been very difficult. Fast forward to 3 weeks ago, my mom, myself and my dad all tested positive for COVID, I was taking care of him as my mom was worse than I was with symptoms, but I felt that something was not right so we called the ambulance to come get him. His O2 had dropped to 40, and they said he had pneumonia and a bleed below his trach line that was leaking into his lung. He has been in the ICU midly sedated ever since. When the time came to discuss after care once he was stabilized he was flat out refusing to go anywhere. Unfortunately I work all day, my husband works varying hours due to his job, and my mom is unable to care for him alone in his current state that he is in from being so sick. The hospital is saying they cannot force him to go anywhere which I completely understand, but we cannot physically handle the extensive care that he will need at this point until he gets stronger. He cannot stand, does not have the strength to sit up on his own, has a foley catheter that we were not told that he would be having upon his release until today that we have no experience with. As it stands now his case manager said that we cannot force him, the hospital finally allowed visitors and we went to discuss with him that we cannot handle his care in his current state of condition, he would agree to go, but as soon as the case worker would go in to discuss with him alone he would say no according to her. When he had agreed to go she said he MUST write it down as he is unable to speak with the trach. But when we asked where he wrote it down when he declined to go when we were not there she said he nodded his head and that was acceptable. I feel like we are at our wits end, myself or my mom feel that we cannot care of him currently like this, and they are pushing to have him out of there and they cannot do anything because he said no. But, I spoke with him earlier, and he does not remember the case manager even coming in today. Which proves to me that his mental state is not where it should be to be able to make these decisions for himself. He finally has agreed to go, and his written it down on his notepad, but he was mildly sedated, and I fear that once he comes off his medicine, we will be back to square one. The case manager told my mother that we just don't want to care for him. That is not the case at all, it is just that he requires more care then we both physically are able to handle at this time prior to this current hospital stay. We have been caring for him for months, but this is a whole other level of care he is requiring. I don't want him to think I am turning my back on him, but I feel him coming home is NOT the best choice for him and will lead to my mother getting hurt trying to help him, myself getting hurt, or something happening to my father that he won't be able to bounce back from due to how weak he is.

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As it stands right now, he agreed to go to rehab after some conversations with him. The earliest that they can get a bed at the specialized hospital over an hour away is Tuesday. The case worker informed us that if before Tuesday my dad changes his mind, "THAT'S HIS FINAL ANSWER AND I AM NOT ASKING AGAIN AND HE WILL BE HOME". However, speaking to his nurses today who tried getting him out of bed, they said he is very very weak, unable to support any of his own weight, it took another two nurses to move him to wheelchair this morning, and his doctor agrees that he is too weak to be allowed to go home. I am praying nothing changes by Tuesday and he continues to agree to go. This is the same hospital he was in when this whole situation started, so I am hoping they can get him back to where he was when he was released to come home. Thank you all for the encouraging thoughts and ideas. My mother and myself have felt absolutely horrible that maybe we were the ones that were not doing the right thing for him, and were not being as caring and thoughtful for him that we feel we were...but we know my dad better, and we know who he is and how he is, and what we are being told is just not him from someone that has only known him a handful of minutes.
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I give you and Mom a lot if credit for what you did so far. Some Nursing facilities will not take someone with a trach because of the care needed and then u throw in a feeding tube.

You tell the caseworker that your Mom cannot care for your father and that there is no money to hire people to do his care. That you don't think he realizes how much stress he is putting on your Mom. Mention that you saw it was a 2 person transfer for Dad. How in the h**l do they think Mom is going to do it alone without hurting herself. No, he is more work than an untrained person can give. He needs skilled nursing. Be very firm in that Mom cannot take him home.

If you can get him in Skilled Nursing, then Mom should go to an elder lawyer to have any assets they have split. Dads split will go towards his care and when almost depleted will need to file for Medicaid. Their monthly income of SS and any pension will be split according to how much Mom needs to live on. She remains in the home and has a car. I am just giving u the basics here. Every state is different.
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One more thing. Just keep saying that sending him home would be an "unsafe discharge". Repeat to everyone involved.

If they send him home in a cab, call 911 and you local media outlets.

Every local government/State representative/US congressman/Senator has staff that specialize in eldercare issues like this and can be a great resource for advocacy. Use them.
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Get hold of the patient advocate office this morning. Tell them that you are between a rock and a hard place and want the best for BOTH of your parents.
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PS re Dad being competent right now;

"His O2 had dropped to 40, and they said he had pneumonia".

Low O2 causes confusion.
Pneumonia can cause delerium (confusion).

These are massive flags to NOT being able to make clear decisions. I would say based on this, near impossible.

Also, what was the original reason for being found unresponsive? Stroke? Cardiac arrest? Diabetic coma?
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dianakountouris Feb 2022
HI Beatty,

He was diagnosed with a vocal chord paraylsis about a year ago, he had been perfectly healthy prior to this diagnosis and he just went down hill from there. He was 250lbs and from choking on food and being scared to eat as ot was blocking his passageway he is currently 135lbs. They concluded when he was found unresponsive that his vocal chords were so paralyzed that they were blocking his airway which is why they had to give him the trach as they couldn't keep intubating him. Since he's been home from his last stay at the specialty hospital, his doctors have seen extensive improvement in his vocal chords and said we could start weaning him off trach by using caps. That is one of the most frustrating parts of this, he was making so many improvements before going to the hospital 3 weeks ago. He was being weaned off his ventilator, and only used it at night or every other night, to now being in the hospital on the vent 24/7 without them even really attempting to get him off.
Diana, I found that the social worker was asking my dad questions in a way that he didn't completely understand. Once I explained that, she was willing to ask in a way that I knew he understood. But it took being firm and not being swayed or intimidated by this sw. I actually felt like I was dealing with a little know it all and felt bad I had to be so firm but, it was my dad's health on the line. (Okay, raging biotch was what finally worked. )

I would reassure dad that you all will do everything you can for him but, he needs to go to a facility that can care for his needs. Then I would speak with the social workers boss, even if you have to go straight to the executive director of the hospital to get the point across.

I would make it clear that nobody at home can meet his care needs and the social worker playing mind f games is not going to change that. He can't speak for himself and that activates a DMCPOA, that's the whole point of having one. She doesn't get to say otherwise, he can't advocate for himself and that's that. Yes, he is of sound mind but, he can NOT verbalize his wishes or affirm that he understands the information.

Don't feel bad about standing up for your dads right to competent medical care, raise hell to the highest person if you have to. He needs professional care to rehabilitate and that isn't available at home.

Best of luck getting this SW to stop playing games and get busy doing her job.

I do recommend finding the rehab yourselves and give the information to the discharge planner. This will get him to the facility you choose.
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The Case Manager is not being practical. Maybe is erring on the side of 'law' (ie Dad's rights) *Part 1*without considering the caregivers legal rights *Part 2*.

*Part 1* Yes, even if dementia & other very serious illness it CAN be possible for someone to have ability to make their own medical decisions - IF the person can understand the information being given, IF they can weigh the options & use judgement & IF they can communicate this decision (verbal or otherwise). Must have all 3.

*Part 2* The above does not ever include the power to designate named individuals to provide the hands-on care.

These legal/moral/medical issues need assessment to maintain rights.

But this is a medical emergency & you don't have time to wait.

In your shoes, I would call EMS, get Dad into the nearest hospital. Then those intracacies can be worked out.
**Updated** if still IN hospital. Then you DO NOT accept discharge.

If Dad does indeed understand & wants no further treatment, then palliative care would be the option. Has that already been discussed?
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What a tangle! I am so sorry you and mom are faced with this.

Does your dad have dementia?

Do you think he is understanding what he's being asked?

Would he be considered competent by a court? Would you or mom consider trying to get guardianship?

Does anyone have Power of Attorney?

Painful as it may feel, you may need to tell the hospital that there is no ability for him to be cared for at home and that you are all willing to let the hospital get emergency guardianship.

Does dad understand that his choices are limited to "this bad choice" or "that bad choice"?

You might ask the hospital social worker to turn the question around so that agreeing to go to the specialty hospital requires the opposite response of the one he is giving. That might be a clue to his level of understanding.
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dianakountouris Feb 2022
Hi Barb,

Thank you so much for the answers.
My dad does not have dementia, but I've known him my whole life and his actions and mental state are not anything I've ever seen him be before. He is agreeing when we talk to him that he will go to rehab. But then the case worker when we are not there are speaking to him and he is saying no, but he hasn't declined once to us about not wanting to go.
My mom has POA but they are saying that he is of sound mind and it is not her decision, but everytime we go to the hospital he's been sedated where we cannot have a coherent conversation with him. It's frustrating because he says yes to us, no to her, and the hospital is acting like we are just turning our back on him which is something I would never ever want him to think. The case manager is saying that my father doesn't want to say no to us, but when I spoke with my dad today he has no recollection of speaking with the case manager today, so clearly he isn't in a mindset to remember a conversation from 2 hours before due to being sedated. I feel helpless. I know we cannot care for him in this state, he is worse off now being in the hospital 2 weeks then he was when I called 911 to send him there. He could walk, communicate, eat with his trach. We've been getting updates daily when we couldn't visit that he's getting stronger everyday, and doing amazing, only to show up and see that he cannot even sit up on his own. And it took two grown men to get him into the wheel chair. I just dont know. I've never been more scared in my life, I cannot imagine how he feels. But he can't possibly be in a right frame of mind to know that in his current state that he's in that we could care for him alone. That is not my dad. He didnt even want us doting on him when he had back surgery 6 years ago.
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