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So as I posted, Richard's son is considered next of kin and will be making decisions for him unless he snaps back out of this. Richard's sister is saying she may move back to town to help take care of him, so what happens if she wants him to come stay with her, but the son wants to put him in a facility? Who gets to decide?

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So, he is doing ok at the care home. I have tried to back away as much as possible, but am increasingly irritated by his family. Since thay have NOT been very involved up to now, they keep turning to me for answers, and it really bothers me that they are so awkward at communication. Tyler still does not seem to want to deal directly with me, so he has the girl text me questions. I do not like her at all, but I was raised to be polite. I suppose part of it is my deeply ingrained Baptist upbringing, it seems appalling to me that they have been together ten years, have 3 small children together, and still have not wed. Shame on me I guess for believing in morals....
I have given them all passwords, account information, dates due, and still she has questions.Tonight it was about medications. Supposedly two are nowhere to be found. He has a grey lunchbox type bag that he keeps all his meds in. If the bottles are not in it then I have no idea where else they would be. My first thought was that the two bottles may have fallen out in one or another of the vehicles, ambulance, etc that he has been in over the past two weeks. I do not want to even suggest they ask the autistic son...
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So very sorry to hear this. I hope that Hospice will keep Richard comfortable. Once the swallow reflex becomes this poor almost all fluids go directly into the lungs where they cause aspiration pneumonia. I hope Richard will be medicated to keep him comfortable and below any level of pain, air hunger or anxiety. You have tried to do everything you could for him.
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Ah, I am sorry to hear this. You've been such a good friend and he is lucky to have you in his life. Know that you did your best to honor your friend's wishes in an impossible situation.

Praying for peace and comfort for you all.
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Update for you all: Richard came home after a week in the hospital, was home for just over a week while I tried to talk to doctors, therapists, home health, you name it. We patched together a system of care where I spent most of my waking hours at his apartment, got a nanny cam so I could watch even when I was not there, and had his autistic son stay with him. That lasted until Monday of this week. He had stopped being able to take his pills, so they told me to crush and put in soft food. Monday night I was giving him his pill and pudding slurry and he choked on it, then continued having raspy breathing, He asked for a drink, choked on that too, and started making a liquid gurgling in his chest, as well as his belly moving rapidly and obvious distress. I told him he HAD to let me call 911, he argued and even tried to tell EMT he did not want to go, but failed their orientation questions and they took him. A second swallow test showed he had lost the ability to even handle thickened semi liquids. Today he is being placed in a care home as he refused to go to a rehab, keeps saying "I just want to go home and die in my own bed". He is being stubborn and uncooperative, refuses just about everything. He has been placed on Hospice. I am allowed to visit, within the home's Covid guidelines. Pray for him, and us all, to be at peace.
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LS2234 Oct 2020
Peace has come. The Lord has taken him home. Pray the family has peace as well. I will still be involved with his autistic son and brother.
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Richard does not want to go to a nusing home. "Nursing homes are where you go to die". The home health agency will not come because they have to have a doctor recommendation for insurance to cover their time. Nobody can pay for health aids out of pocket at $25 an hour, 4 hour minimum, unless they are VERY well off. Old poor SS recipients just have to make do with a patchwork of friends and relatives.
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I am unclear as to why the home health agencies are telling you that they can't start paperwork for Richard without a doctor's order. Are you trying to get reimbursement for the agency care? I have needed home healthcare for myself a number of times, and I don't believe it was ever ordered by a doctor, with one exception. That exception was after knee replacement when I had to have periodic injections of an anti-coagulant for a couple of weeks. The person who came took my BP, I think, gave the injection, and left. That was arranged by the doctor. However, the caregivers I had during that time were ones that I hired throgh an agency. I also paid for these caregivers.

Most agencies will require a interview and probably a visit with their nurse before signiing Richard up for service, which probably couldn't be done until Tuesday because of the holiday. I would suggest your contacting some agencies again, unless you are making a different kind of request that the ones with which I'mfamiliar.
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I figure if I can keep him alive and safe until Tuesday, then follow up as instructed with his primary doctor, she will either write up for additional home health aides, or even give a recommendation for a Hoyer lift. If Kaiser will not approve that much home care, she can be the one that tells him he must go to a SNF. Medicare will pay for up to 100 days as rehab. I don't think he really understood that if he went to the place and got better, he would be able to come back. He does not want to give up his apartment nor his independance, what little he has. He still want to be able to watch whatever he wants on tv, play on his computer and Ipad, see his autistic son and hemiplegic brother. He is afraid that once Tyler gets him "put away" then no one will come see him, Tyler will give up the lease on the apartment, sell all his stuff at a yard sale. All his money will go to the facility, aside from the pittance that Medicare/Medicaid allow. The kid does not want to deal with his dad, barely visits now. He did not want to be in charge this time, only took it on because the hospital insisted. If Tyler bars me from visiting in the SNF, then neither the brother nor the disabled son would be able to see him either because I am their transporter as well as Richard's. The only person he would see would be the sister, Jill, and that is IF she continues with the plan to move down once he is in the facility. If she has to stay where she is, then she probably would only be able to visit a few times a year.
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LS2234 Sep 2020
Richard never wanted Tyler to be in charge. He said that from the beginning, but never followed through with naming someone else.
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Richard put me as his primary contact, and took his son Tyler off his Kaiser records when he moved to the apartment two years ago. As I said elsewhere, he had a falling out with Tyler and was not happy living with him. He pulled me in because the situation with Tyler was bordering on abuse/neglect. His exact words two years ago were "Lori, I hate to ask but could you come help me take a shower? I have not bathed in two weeks, Tyler is too embarrassed to see his Dad naked and the home help bath lady was discontinued by Kaiser". Over the next couple of months, he would call me to come help him bathe, get groceries, take him to dr visits - because Tyler and his...girl(unmarried mother of his children) ...were always "too busy" He also complained that they kept moving his things, hiding things from him. It all came to a head when the girl decided from a Google search that one of his medications "was bad for him" and took it away, without his permission NOR his doctor's advice. That was when he decided to move out. He never gave ANYONE POA. Tyler is considered the next of kin. That was the only authority he had to make decisions. The hospital said he was "medically stable" and they could not keep him, especially after he said he was not going any place but home, and then refused to even speak or respond to them until I arrived.
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LS2234 Sep 2020
Basically the hospital kind of blackmailed me, they said if I did not pick him up they would have to call a non emergency transport company to drop him off at home, whether there was someone to take care of him or not. They lied and said he was able to stand. I think it was rotten of them to discharge him late on a Friday of a 3 day weekend, knowing nothing will be open until Tuesday. I called the hospital yesterday and asked what I was supposed to do since he can not even stand or transfer. She told me to call the fire department, that they will come and lift him from his chair to his bed, he does not have to go to ER if they come. I also called a couple of home health agencies, they said they cant even start paperwork without an order from the doctor. The hospital also was supposed to give him a prescription for continuing antibiotics, for the pneumonia, but the pharmacy has nothing.
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LS2234, according to your update the SNF wanted to discharge this gentleman to care, could not reach Tyler, his son, and "sent him home" because he would not go to care, after they spoke to you. If I recall it is his SON who is his POA, not you, and they were wrong to involve you in discharge drama.
If he has the power to decide whether to go home or not, then they cannot deny him, BUT if they talked to you and you agreed to try to provide some care, they thereby sidestep the "Unsafe Discharge" accusations that all SNFs fear (they can lose the licensure).
I tried to tell you some time ago that as a friend you are too deep in the business of this family. That they have now done a discharge that is UNSAFE after speaking with you, and without speaking to his son, has just proven my point.
At present you are going to need to call the EMS to get him back into care. At that point please remove your name from his records. They should now be dealing with patient and with family ONLY. Later, if he returns home you can come by and ask if there are ways you can help that may BE a help. This man sounds way too much care for a Sister who is somehow hoping to move her entire life here to take care of him.
Please step away from the middle of this, and let Tyler, the son, be the person handling this for his Dad.
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LS2234 Sep 2020
It was the hospital that discharged, he never went to the SNF. That is where he refused to go. Tyler did not answer his phone, he turns it off when he is at work. He is a glorified babysitter, employed to supervise teenaged boys in a group home. From what his dad tells me, he basically sits up all night playing xbox with the kids until lights out, then once they are all down continues on the video games. No POA was ever created. When I reached out back in June, trying to tell the kid his dad needed more help, his response was " Yeah dad should have just gone to a nursing home when he decided he did not want to stay in his own house,but did not want to because they would take all his money and he would never go anywhere any more."
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Wellll. Here is a twist. Was told yesterday that he was going to be transferred to skilled nursing today. I had tried to resign myself to him going in, probably not coming out, all plans on hold. 5 pm I get a call from the Kaiser social worker. He refused to go. He said he was not going to any place except home. Told them he did not want them to call the son. They tried anyhow, but Tyler did not answer. So they called me. No medical reason to keep him, basically he was refusing to cooperate at all. They sent him home. He is now asleep in his own bed, and I am on an air mattress on his floor.
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LS2234 Sep 2020
He should not have been sent home. He can not stand at all, not even enough to change clothing. I am able to change him, but it is more of a chore than it should be. He has a dressing on his backside, discharge papers say it is a pressure sore, was not there when he went in. Not eating well, and the papers say he should be on pureed or liquid/semi liquid diet, yesterday he ate a bowl of oatmeal, a few bites of a sandwich, and drank a bit of Boost Glucose Control. Trying to push fluids, reminding him to drink, again not much intake. Went and bought the sugar free all fruit popsicles, he ate one yesterday. Today he asked for scrambled eggs with cheese, ate 3 bites, said they did not taste good, found a hostess cupcake in his mini fridge and ate that.
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LS2234: Thank you for the update that you posted 4 hours ago,
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Some good news. First, Jill has been approved for an apartment IN THE SAME BUILDING, literally right next door, to Richard's. She will move down here as soon as she can get helpers and a truck to transfer her. Second, Richard called me today, from his own cell phone, and sounded quite coherent and aware. The fact he was even able to CALL is big, as even before all of this he was having trouble figuring it out, had just gotten a new phone and was not used to finding his contacts. He said he had eaten breakfast and was headed to physical therapy.
So, if they get him walking again....
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LS2234 Sep 2020
We will get her an intercom/camera system so she can have an eye on him when he is home, possibly a "bed alarm" like my late husband had that alerts when the patient is no longer in the bed. He has a hospital style bed, with safety rails, already, it was donated to us by an organization here locally. The apartment complex he lives in, honestly, should just convert to a skilled nursing or assisted living place, 3/4 of the residents are disabled in some way, most use either walkers, wheelchairs, or electric scooters. The ones that are more mobile, like his son, are there because they have other issues. A very few younger people live there, they are lower income, often single parents trying to just get by and save up to get to a better place. One younger couple that are friends of ours, they are ok but have a 5 year old with multiple issues, she is just this year learning to walk after having been given a special walker.
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Next of kin gets the say. This situation is the reason every person should have a lawyer draw up powers of attorney for financial and medical. Also a good idea to have a will drawn up while you will be at the lawyer anyway.
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Richards son is next of kin and should make the decision.  If I were Richard, I would suggest to his aunt that if she wants to move closer to her brother, that would be great and she can visit him daily in the nursing home if she chooses.  She can keep an eye on him and visit with her brother without giving up her entire life and stressing herself out.
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Richard gets to decide. If he is competent to do so.
If he is not, the son, who you point out is considered next of kin, lives in the area and has been doing duty heretofore.
You are a "friend" of Richard. I think that it is time that you step away from this situation and let Richard and his family decide together what is best for him.
You mention "his sister". I am assuming that is Richard's other child, a sister who does not live in the area and has not been involved in care. And where her move and care of Richard is concerned, I am certain she has made this offer to the other sibling, and the sibling currently doing duty in same town has decided placement would be best.
This is then a matter for the two children to settle with their father. You have offered your services. Now it would be best to step away before you end this family in a court battle which could lead to POA and guardianship given to the state. In that unhappy circumstance Richard will be placed with NO ONE having the slightest say of where and how.
I understand that you feel that Richard is your friend. But you have been accepting some payment for some care, and that takes things into the iffy area of not pure friendship, but of something other.
Please let this family deal now with what is clearly a hard decision.
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LS2234 Sep 2020
The sister I am talking about is Richard's older sister Jill. He is the youngest of 4 children, all are well up in years. Richard has an adopted son, two biological sons, and a stepson. The adopted son and the older of the two biological sons are both special needs, disabled. The younger biological son, Tyler, is the one currently handling his father's affairs, despite their having had the falling out in November of 2018 when Richard moved from that son's home into his current apartment, where I have been taking care of him. Jill called me today, she has been actively looking for a rental that will work. She spoke with the manager of his current apartment building, and there is a distinct possibility that she may be able to rent an apartment in the same one. That would solve a lot of issues. I am not trying to become Richard's legal guardian or anything of that sort, I simply want the family to come to some best possible solution for him, but I am still willing to provide his physical care. I do have experience caring for people with dementia, on IV and PEG tube feeding, my late husband had a port in his chest for his chemo treatments and was tube fed until he opted to go into hospice. My grandmother had severe dementia, COPD and was tube fed as well. I was caregiver to both of them, as well as my grandfather, uncle, and mother.
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So, if Richard " gets his marbles back", meaning is once again in full cognitive function, oriented to place and time, etc. and says " I want to go home", what happens? Does his son proceed with care decisions even though Dad is now fully functional, but making basically an unrealistic request? Or does the hospital social worker step in and offer guidance and counseling, advise him of his best options? Tomorrow is the first, his Teamster check will hit his bank, then on the third his SSA deposits, his rent will auto pay, so now we have an empty apartment that he may or may not occupy this month, and he no longer has his full amount of money to give to a nursing home. I doubt the son has thought that far ahead, but of course he could always go to the bank and cash it out before the rent hits, at which point his apartment goes into default and somebody would need to go move everything out...
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To be really honest, I feel guilty for sending him to the hospital. I suspect he would have preferred I simply let him die in peace in his own little home. I know that sounds horrible and morbid, but his quality of life has not been great, and the isolation of Covid destroyed him more than anything else. His only real pleasures pre Covid were going to church and bible study, and seeing his grandkids. All that went away, the son was reluctant to bring the littles over for fear they would get him sick, church closed, his sister had moved away just before in February. For months, his only contacts were me, his disabled son, and the older brother in a wheelchair that also lives in the same apartment complex. Even doctor visits were switched to telehealth.
Now he will wind up in a SNF, they will probably not bother to even get him out of bed when he wants, or will strap him into a wheelchair and park him in the common room for a few hours each day. No one will come see him, I will undoubtedly be barred from visiting, the disabled son will have no way of getting there, nor the brother in the wheelchair. IF his sister moves back to town she may go visit, unless Tyler bars her as well once she complains too much about the level of care.....He won't last out 2020.
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LS2234 Aug 2020
I have worked in the nursing homes here. I know how they are. The cheapest one in town, the one that takes MediCal, currently has a rather large vacancy rate. They were the "hotspot" where most of our county's mortality occorred from Covid. That is why I said they may not even get him out of bed....
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The Judge if it ends up in Probate court from a Petition for guardianship &/or Conservator, so you best sit down and think of what is in the best interest, because the judge can appoint a Professional guardian using the reason that you two can not agree/get along, so you best do all you can to do just that agree! There is a great book by Dr Sam Sugar that details how it can happen and family stories it happened to at aaapg nationwide.
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LS2234 Sep 2020
It is not "us two" it is Richard's sister Jill and his youngest son Tyler who will need to agree. My role is simply that of caregiver. If he is not able to afford SNL then we are back to the place of him having to be in a private residence with someone to care for him and at least one adult capable of calling for assisstance in the event of a fire, ceiling collapse, or fall. He does have a fall monitoring and emergency alert system in place in his apartment, but that is no longer enough under his present physical conditions. Adding interior cameras may be an option as well.
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Calling 911 hardly constitutes care giving. What happens after 6 months when Richard can no longer live with his sister due to care needs being too much, where will that leave her when 1/2 her rent disappears. Sounds to me like everyone is just trying to postpone the inevitable. Son most likely does not want to deal with two moves. I've done it, huge amount of work. If Richard is declining he needs to be someplace with 24/7 care. Do you think his son is trying to take advantage of him? Or does son think that of you?
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LS2234 Aug 2020
Both. Not really Tyler so much as his...woman. They have never gotten married despite having 3 children together. When Richard moved in with them initially, he hated the situation, was very angry at how controlling she was, and felt that she only wanted him there because he was giving them " rent" of $800 a month. He moved in April 2018, out again November 2018. When I reached out in June of this year the text I got back accused me of "bleeding him dry" of funds, but then said " You said you would take care of him, so do it. Do not call or text me any more". Richard is not wealthy by any means, he gets SSA, a small Teamster pension from driving truck forty odd years, and there is a small life insurance annuity from his second wife. I layed out his fixed expenses, rent, utilities, car payment and insurance, various mail order companies he has gotten things like small appliances and gift boxes at Xmas on timed payments. By the time those are all paid, he has less than $600 left for variables like groceries, Depends, etc. He also insists on keeping a minimum of $100 cash in his wallet, which he gives to his middle son, who is on disability due to mental health issues and asd. I drive the car because he no longer can, I only use it to go back n forth to his house or to take him to doctor visits and run his errands. He covers the gas. We initially agreed I would take $300 as my " wages" for coming over every morning, getting him out of bed, changing clothes, stripping the bed because he soaks through, fix breakfast, do dishes, vacuum, etc. leave him lunch, go home for a few hours, do his laundry at home because since Covid the on property laundry room has been closed, come back, make dinner, clean up from that, change clothes and depends again, swap out the soaked chair cushions, get him to bed. If he has a problem in the night, he calls me and I go back again, which has been happening with greater frequency. I am not complaining, I am very fond of him and would happily continue just as we are. However, having these past few days "off" while he has been in the hospital has made me realize just how busy I was and how tiring it has been.
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If Jill moved back to town and rented a two bedroom apartment with her brother Richard, they would split expenses as she has her SSA and a RailRoad Worker pension from her late husband. He main assistance would be to be present and able to call 911 in the event of an issue. I would be willing to help them both, be the housekeeper/caregiver as I have been. If their apartment were over here in my end of town, I would be within minutes at any time of need. I have taken care of people all of my life, from my mother and grandparents to my husband as he suffered through cancer in 2018. I have ability to do transfers, bed baths, assist with walking to a degree within my strength, have cared for people on IV's and tube feedings. when my oldest daughter was pregnant with her first child she had to be on a Pic line with the antinausea drug Zofran so I went and stayed with her to help care for all of that. I am not a fully fledged CNA but have taken caregiver classes, first aid, been a veterinary technician, etc.
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Thing is, when he moved out of Tyler's house, he tried to revoke the being on the bank account and told Kaiser NOT to contact his son except in emergency, put me as his primary contact for Kaiser. He was not able to get the son removed from the bank account without the son's consent, so he tried to block his access by changing the password, not realizing that each account holder has their own log in and does not have the ability to block another. He had filled out an Advance Directive with Tyler, but never got it notarized or filed with Kaiser, so it has no binding legal status.
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LS2234, below you replied that, "His SSA and teamsters pension would presumably go to a facility for care. We had looked at places before he moved to the apartment, all were way more money than he gets. Supposedly medicaid steps in once you are fully incapacitated. I tried to get him on California version which is Medi-Cal, but they kept denying saying he has too much income."

Yes his SS and pension could go to pay for a facility, but only if he or his PoA acting on his behalf arranged it and he could afford it out of pocket. Medicaid does not "step in" unless he or his PoA/authorized representative or the facility fills out and submits an application. Medicaid has nothing to do with incapacity, only financial assistance for care. It does not act as a guardian, the county does that. You helped him apply for Medi-Cal but didn't qualify because he makes "too much income" and this may continue to be the case as long as he is receiving a pension. He should see an elder law estate planner who is familiar with Medicaid.
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If Richard is well and able to make his own decisions he can make them. If he is not mentally capable of making his own decisions a family member will be appointed to do so, if not with current POA, then with some sort of emergency guardianship arranged by Social Workers.
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Hopefully someone has been given POA. If not, the Son overrides the Aunt, in my opinion. Children are considered next of kin before siblings. So I would say son will hold the authority. Richard should have assigned you POA then none of this could happen. All you can do now, is back away and let family take over. All you can be is a friend, you have no legal rights unless u want to spend money to be Guardian.
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Richard, it would seem, has been deemed now unable to make his own decisions for some time? And the son is making them for him? Does the son have POA for Richard? If so the decision is his to make. If he is only designated as next of kin then he and the sister are BOTH that. But it does seem that the son has been doing the care. The fact that the Sis "may" move there is neither here no there. The sister is welcome to move there. If in future, when she is familiar with Richard, his needs, and the likelihood of her being able to do 24/7 care, Richard can still leave care and move in with her. If Richard is now to the level of needing care, and his son is making decisions, I imagine he either has rights to do so legally already, or he will soon enough with a grant of emergency guardianship.
Squabbling siblings almost always goes wrong. In a court battle for control of a parent unable to make his or her own decisions the guardianship is generally granted to the one who has been doing the caring. If the squabbling gets too bad it can come down to the State being appointed guardian with a Fiduciary assigned. In this case neither the brother nor the sister will have ANYTHING to say about placement, what kind of placement, about assets or finances, that is to say about anything at all.
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Isthisrealyreal Aug 2020
Next of kin has a hierarchy and a child is considered next of kin before a sibling. If there was no child then the sibling would be considered next of kin. It is not an equal situation when they both exist. Just so you know.
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Your situation is a perfect example of why I think it is a bad idea for anyone to take on the responsibility of caring for someone without having the actual authority to do so.

You are not going to win the battle for power over your friend, Richard, that you have engaged in with his son. The son is on his bank account. That in and of itself is a big deal and indicates Richard's intentions of wanting Tyler to make decisions.

Given Richard's clear neurological deficits and limited financial resources, his family may have no choice but to find an affordable nursing home that you will consider cheap. His son will have a hard time going after you for any money just because you helped pay for his father's groceries.
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LS2234 Sep 2020
Yes, sadly as my Grandma used to say, " The road to h3ll is paved with good intentions" and "no good deed goes unpunished." I had the best of intentions, but was too naive and trusting, relied on verbal agreements and our friendship. Had I actually been some sort of "gold digger" filled with avarice and evil intent, first off he would not have been a good choice as to his available money, and second, someone like that would have gotten everything signed over long ago, used untraceable means of transferring the money, or perhaps I should just have married him on our cruise to Hawaii ten years ago...Having failed to do any of those things, I am apparently just a kindly old fool who will be left wondering how he even ends up, if the family cuts me out completely....
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"Richard's sister is saying she may move back to town to help take care of him.."

Key word is she MAY.

Most people are all talk when it comes to taking on the responsibility of being a caregiver.
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JoAnn29 Aug 2020
Have a SIL. Good intentions but never carries them thru.
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Without POA it will be son's decision. You could go to court to seek guardianship if Richard is incapacitated. That would be expensive and take time unless facility is willing to pursue emergency guardianship.
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The son is joint holder on Richard's checking account, and two years ago Richard filled out Advance Directive forms through Kaiser with the son on them, but never had them notarized. He moved in with them in April of 2018, but moved out into the apartment by November 2018 and asked me to help him. I have been taking care of him ever since. Right now, they think he may have had multiple small strokes or TIA that are affecting his mental state.
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Copied my other post to clarify:
Friend placed in hospital, son stepped in to manage everything, I am now excluded?
So, I have posted before about my friend Richard, and his youngest son that does not like me. For the past two weeks, Richard has been declining rapidly. We saw his Geriatric Doctor at the beginning of August, got him into physical therapy but he has not been able to do much. Last night he called me at 2 am and said he was lost, did not know where he was, and could not move. He also pushed his fall button. I drove over as quickly as I could, paramedics had come but he refused to let them do anything, so they left. When I got here he was slumped sideways in his chair and still confused. He wanted to get into bed, but could not stand up at all. I told him he needed to go to the hospital. He resisted, "They never do anything and it costs me a hundred dollars" I told him I wold pay the ambulance, that he really needed to go. Called them, they took him, today he has been admitted. Initially all they found was mild pneumonia and his blood sugar was off. I called his niece, brother and sister and let them know, asked the brother to contact the youngest son. Hospital then started having issues, confusion came back, he refused medication. They needed to do an MRI but did not know who to call for permission. I do not have POA. So I told them Tyler was his son, Jim was his brother, told them they should contact one of them. Tyler is now talking to the doctor, sending out updates to family members - but not me. I am getting info from the niece. I spoke to his nurse, and to him directly, but was not told of other decisions and issues. I am worried that even if he gets better, Tyler will stick him in the cheapest SNL he can find and bar me from even visiting, then go after ME because I was helping take care of his bills and grocery shopping, with Richard's full consent, but I did not have any legal documentation to do so. see less
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Isthisrealyreal Aug 2020
He is only following your example. You didn't contact him about his dad, you had someone else do it. You don't really expect him to treat you any differently than you treated him do you?
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