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He takes off his oxygen and gets confused and can’t breathe so calls 911. He’s been in the hospital with pneumonia twice in the last month. Hospital Dr let me make the medical decision and said I could send him to a nursing home but it changed when my dad refused. The Dr said he could go home and could make his own decisions. Now that he’s home he’s confused, weak and is found without his oxygen at times and calling for help. Idk what I can do next bc I’ve been told he’s allowed to say he wants to be home if he’s able to say it. Plus I feel bad for the many calls the EMS gets. I live an hour away, work and have a family so I can’t be there 24/7. Any suggestions?

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I think it might be a good idea to hire (dad pays) a caregiver that will be there most of the day.
The caregiver can monitor and make sure he is using his oxygen as well as do other household chores.
I would also put cameras in so that you can monitor him when he is alone and if you see that he is without oxygen you can call him and remind him.

Has he been diagnosed with dementia? if so that may be an "out" if he refuses to go to a Nursing Home.
Or next time have him sent to rehab first they will evaluate, help him gain strength and it may be that they will not recommend that he return home if he is going to be living alone.
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Contact social services to see if emergency guardianship is a possibility (this is assuming no one is his DPoA).
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I would call Adult Protective Services in your county, and tell them your dad's situation. If they come out to your dad's house to evaluate him it might help get him the services he needs and advise you.
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How is he getting home? Are they being told there is someone at home with him who will look after him? Tell them it is an unsafe discharge.
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You may want to change doctors because if he is confused and weak (in your words) no person is safe by themselves under those conditions. Next time he's in the hospital ask for a psych evaluation. If the psychiatrist says he is competent, consider DNR/Hospice.

If he is not competent, you may want to also consider a legal guardian which means he can be put in a nursing home even if he objects to it because of a court order. Psychiatric wards usually have a visiting justice, which can rule things like legal guardians.
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Sadly, I guess the loop gets repeated : panic, ER, hospital, rehab, home, panic, ER.. until the person gives in, their health forces it, some sneakery... or the end happens.

I've personally seen when acceptance financially comes (after countless loops) to move to permanent care. Tears, sadness, grief 😞

Seen elders accepting permanent care as after-rehab option that was *sold* as 'respite until you are stronger/better'. (Just a teeny weeny little white lie).

Heard of stubborn elders locking out home visiting help so often it results in their demise.

Maybe time to have an honest chat with Dad. What does he really want as he ages? What does he value?
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You have to realize that roles are reversed when a parent gets to this stage. Get him to sign a durable POA then admit him to a nursing facility. Otherwise, you will be a perpetual victim in this.
Or… do as others have and admit him on a “trial basis” and he will see how much better it is, hopefully.
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Install a camera so he can be watched anytime 24 7 from a computer or cell phone.

Have a one button phone set up for him to dial you instead of 911.

You can see on camera his problem and have him put his oxygen back on.
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If Dad is calling 911 because he forgets to wear his oxygen, he needs 24/7 memory care. I agree with cetude - You do need a new doctor who recognizes the need for a nursing home, and doesn’t cave when Dad refuses. If it’s possible, try to get a call report from the EMS - it might be on his Medicare claims - that comes to Dad’s house and give a copy to his doctor.
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It sounds like your Dad is in transition. His dementia may come and go. The situation is not going to get better. He needs help. If you have POAs now is the time to start exercising your authority. If he cannot live with you then he will need a caregiver or Nursing Home or Memory Care. If there is a financial concern start the Medicaid application process now.
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I used to manage an apt complex where I had a resident who was an alcoholic smoker who barely ever left his recliner. At least once every 2 weeks he would call 911 b/c he would get up and fall in the middle of the knight.

Well, one morning I came in to work and found the fire dept there yet again and when I went over and asked them what he did this time, they said this was the last straw. He was occupying too much of their time and they were going to start charging him for the responses as well. This time, he had gotten up, pooped all over himself and the floor, fell in it, and smeared it all over himself and the floor. They told me they were going to report him to social services as not being able to care for himself anymore.

This worked out b/c his son told me they had tried to get him to go to a facility for years but, b/c he could speak for himself and wasn't technically 'crazy' (alz or dementia) they/judge couldn't force him. But now, the family finally had the ammo they needed to force him to go somewhere where he could get help and live.

My advise, get the first responders to file something with social services stating he is over using the service and can't care for himself anymore. It carries weight.

Good luck,
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Isthisrealyreal Aug 2021
That is great to know that 1st responders saying inability to care for self holds more weight then family.
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Please have your dad evaluated for mental competency by his usual primary care doctor. It appears that your dad is not able to understand consequences of his actions -like taking his oxygen off.

If your father is not mentally competent, then you will most likely be able to arrange for him to move to a residential facility.

If your father is adamant he stay home AND mentally competent to do so, it might be time to discuss with his doctor is hospice is an option. Hospice would provide the care and comfort he needs without trying to cure his disease processes. In most cases, the client must be considered terminal with a life expectancy of about 6 months. Most insurance will cover hospice - in a facility or at home.
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Isthisrealyreal Aug 2021
The problem with hospice in a situation like this is all the 911 calls. If dad ends up transported to the ER now there are bills and messes with Medicare to sort out and hospice will not appreciate all the added paperwork that will require to ensure everyone gets paid.

Then you have the issue that many hospice providers require someone to be with the patient 24/7.

These really are no win, no solution situations when an ignorant hospitalist sticks their nose in and asks someone that doesn't have the mental wherewithal to keep there oxygen on if the want to go to a NH. It's kinda like asking a kid if they want a spanking, when was the last time you heard one answer yes?
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First - contact Adult Protective Services with your concerns.

Next - the next time he goes to the hospital advise them that he is an unsafe discharge and you will hold them responsible for anything that happens if he is discharged home.
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DrLokvig Sep 2021
My sons had to through this with their dad. It's tough because you have stand firm, really firm, with the hospital. Refuse to take responsibility for him and make it very clear that he's not safe at home alone. My sons finally told the hospital they could discharge him if they insisted, but the family would hold them liable for any mishaps after his discharge. (And they recorded the conversation)
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Let the EMS handle this. One EMT told me they have regulars and they all know them by name.
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Beware, after a couple of calls, EMS quite possibly will start to charge him for these trips. Constant repeated visits are proof enough. Get the reports from EMS if possible, what was his oxygen saturation level off of his oxygen, what was his mental state when they arrived or any other medical information. As advised by another, contact Elder Services to report an Elder at Risk. He clearly is and is not safe at home.

He needs supervision and his doctor needs to realize it. Another idea is to take him to the doctor with his oxygen, have the oxygen removed and let the doctor see for himself the change in mental status and possible drop in his blood oxygen levels. Then push for him to receive care full time wherever is financially and medically best for him.

I once has an inpatient who was a former professional boxer. He had neck, throat surgery, a trach tube in his throat and was on oxygen. We always knew when his levels were low as he would stand up, put up his fists as though he were in the ring. We ended up putting around the clock nurses on him. One night at midnight I heard a sound no night nurse wants to hear. I RAN to his room, found the bed half way across it, his nurse on her knees gasping for breath. Yet she was still holding on to both of his hands. He had tried to pull out the breathing tube. When she grabbed his hands, he kicked her in the chest, sending the bed and her. (I grabbed him to allow her to curl up to breathe, and another nurse and I cleared his airway). After, with oxygen restored, he apologized as he knew he had 'done something to hurt someone'.

Low oxygen levels need immediate attention. Involve Elder Services.

If you don't have Medical and financial POA, get it ASAP.

Best of all in this very difficult situation.
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What will end up happening is that the paramedics will inform APS and your father will be placed in a care facility whether he refuses or not.
Waterspirit (in the comments) is right and EMS will start charging for his calls if they are responding to so many non-emergencies.
My advice to you would be to not interfere. Let him keep calling 911, then let the state take over and place him in care facility.
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It is frustrating that MDs do not make decisions about 'competence' in situations with elders who may be making poor decisions. They often determine that a patient is 'capable of making choices about health care " while in the hospital. That works as long as the patient is doing what the doctor wants. What happens outside the hospital is NOT the responsibility of treating MDs and they are strongly discouraged from documenting any further information about competence.
The reason is that that they don't care, but the court battles for guardianship that rest on competence (as determined by an MD) can be ferocious, nasty, and expensive for all involved. Loss of wages due to repeated court appearances are a big reason MDs avoid this area.
A health care POA is either 'durable' -takes effect immediately OR 'springing' -takes effect when the person voluntarily gives up the responsibility of making decisions OR when a treating MD determines that the patient lacks capacity to understand complex information needed for decision making about health care choices.
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Frances73 Aug 2021
This is true. On my father's last ER trip, after a fall, he refused to get out of the bed when they tried to discharge him. He would not budge even when several people tried to help him stand. He finally admitted he was afraid of falling. I couldn’t help move him as he was tall and out weighed me! It seemed like all their urgency was just getting him off their hands.
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Sounds like he needs some help at home. Does he have a living will with somebody designated as his medical representative?
He may qualify for a home health order, which would bring nursing staff to him at home to help him out a bit. They can assist and educate him so he's not calling 911 all the time.
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Make sure Dad knows that EMS can start charging him for the visits to his home and his insurance may or may not pay if they decide this isn't medically necessary. Can he afford this? If not, tell him he needs to make another choice. Bring in a social worker to discuss his options. If he makes the decision instead of being told what he has to do he might be able to move forward.
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Ask ems to provide you with the number of calls they have received for his address and, if possible, the complaint issue. Next time he goes to ER, show them the document and request transfer to NH because he is no longer SAFE in his home. The documented visits to ER plus the EMS calls should show he is not safe and trump dad saying he wants to be at home. Get his doctor involved too, to address the safety issue.
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Isthisrealyreal Nov 2021
Caroli, it is actually 3 midnights. It is 3 days but the day of discharge doesn't count. So it must be 3 midnights to meet Medicare requirements.
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Imho, EMS may start to realize that he is a frequent caller.
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EMS will report him to APS as someone who living without enough support.
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Clairesmum Nov 2021
yes, as a self neglecting elder. NOT with allegations that family is abusing or neglecting.
APS can be very helpful in sorting out the muddle.
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I had the same problem with my Mom when she first began to exhibit beginning Altzheimers. She became unreasonable making up things in her mind that certain family members were stealing things from her. She would call me and I'd find them where she had hid them. Sometimes before I left she has hid them again when I left the room and it started all over. After a few times she started calling the police. It only took two times for the police to call me asking if there was any truth to what she was saying. I assured them there was no truth to it and explained what has been going on. I had already made an appointment to see her MD on Monday and advised him of that.

At that time she had just been argumentative but her memory was fine. doctors would ask her a few questions like her DOB, her age, her phone number, who the president was etc. Then they deem she was ok. On that visit the same thing happened. The doctor left the room and I excused myself and talked to him in the hospital hallway explaining what was happening and showing him notes she had written that various family members might be trying to poison her or stealing things. With that he said he would try to get her in the hospital. To get her in the nursing home we had to refuse to pick her up due to not being able to take care of her. After a 3 day stay we were able to get her to sign herself in to a nursing home which was supposed to be for 2 weeks but was for 6 years till her death.

These things happen, sad as they are, we have to sometimes do things that seem unfair and unpleasant. I hope this helps you in whatever decisions you have to make or have made already. God Bless.
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Seek the help of an eldercare attorney and get a Power of Attorney. And if need be, you may have to find a more "cooperative" doctor - he obviously has dementia and they do NOT get to control what they do or don't do - their needs and behaviors are impossible to deal with and they can't make sensible decisions. This creates havoc and hell for those responsible for them. Seek the input of a social worker in the Office of Aging for a full evaluation and please check out how to place him. You can't continue to put up with this behavior and he needs safety.
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Riley2166 Sep 2021
Also please talk to the emergency services people to alert them of what is going on. Ask them for their input and help.
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