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My dad has been diagnose with dementia and has a really week heart. A heart fraction of 15%. Doctors have said he is in the end stages of heart disease. He has been on the decline since December 2017. He kicked my mom out of the house and they have since gotten a divorce. He only has social security and as soon as he gets his check he spends it - paying no bills. He has a spending problem. He doesn't take his pills correctly and goes to the hospital once a week to get drained. He gets around 5 liters of fluid off his stomach each week. He is very stubborn and won't go into an assisted living program. He is currently living in a trailer that he bough once my parents sold the house. He doesn't have water or electric hooked up. He often asks for money and I used to give him money to help him with gas and food, but I have currently stopped that and he now refuses to talk to me. He has been really mean and it's not my dad anymore. From here I don't want to take guardianship, but I know the state will. I wonder if anyone has had this kind of experience. Thanks

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kcase1005 - something I missed in my response earlier: You can apply to be representative payee for his SS. It does not cost anything, you just make an appointment with them, respond to their questions (I believe you can see a copy of this online at SS website) and they review. He WILL get notice that this is being done, so beware of flack... If you can demonstrate to them that he spends it all unwisely and doesn't always cover his bills for necessities, it will work in your favor. Mom was already at MC facility, so she was not really aware of this happening, but I had taken over her finances previously. In order to get all needed paperwork, I needed to change her address and this was the only way I could do it.

Like guardianship, they will require that you keep records on how the money is spent and report this yearly... I haven't had to do this yet, but it has not been quite a year yet. In our case it will be simple - both her pension and SS pay a portion of her "rent" at the MC facility, so that's all I will have to provide to them (pension is federal, so they require it too.)

The other thing that has to be done, once approved, is to open a special rep payee account - it lists you as payee for your LO. Only you can be on it, and LO has NO access to it. First check comes as an actual check, but once the approval is done and the account is set up, you can call and request electronic payments.

This would be one way to control his funds. He can be given some "spending money", but if you keep the bulk for necessary payments and dole it out in small amounts, this could at least keep him afloat financially... For his bills, contact each party and have the bills sent to your address (leave it all in his name!) I did not have to provide POA to most of them - they don't really care where the bills are sent, so long as they get paid!

As for his living conditions... where is this trailer located? is it private land he owns? The town could have him removed if there are no working water or electric (if this were a house, a permit to live there would require water, electric, heat, etc to be working, otherwise, they'd shut it down and lock him out. I don't see how a trailer would be any different. You could try the building department at the town hall.)
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Contact Adult Protective Services as soon as possible. Also look into getting Caregiver Support for yourself from your local Area Agency on Aging,
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I’m not sure how the state where you live operates, but in Texas, and I would think it’s a US thing. There are 5 circumstances that qualifies for Medicaid to cover a loved one to go to a nursing home. One is an Alzheimer’s diagnose. Not Dementia-Alzheimer’s! If your dad was diagnosed on record with Alzheimer’s then he would have a choice to live at any medicaid accepting facility with a “Medicaid” bed available. The nursing home will take everything but 60.00 a month. I would suggest getting him re-evaluated. You’ll need to help with the process. I know it sucks-but that’s what may need to happen. The “state” has enough to do. Good luck
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Hi Kcase1005,

I wish you the best of luck obtaining state-directed guardianship. I'm sure the process differs by state (county/jurisdiction).

Since guardianship ultimately involves taking away a person's individual rights to make decisions, whether medical or financial, there is a huge "gray area" and the process may not be as quick as we would like.

My mother's situation is similar, but a little bit different to include dementia (memory loss), catastrophic heart failure (CHF) metastasized cancer, anemia, and diagnosed as "unable to make a medical decision" due to memory and cognitive issues, she goes to ER monthly, complains that hospitals will not fix her problems, but doesn't commit to any medical procedure and cancels all outpatient appointments. As her illness progresses, she will visit the ER more frequently.

Each time she is hospitalized, staff stabilize her and reach out to me (as the Responsible Adult) to state she has a safe discharge plan, i.e., long-term care, home health aid, stay with a family member, or safe to live at home alone. I don't have POA, but in the state of Virginia, next of kin are supposed to make "medical decisions" if the patient is documented as unable to do so. For various reasons I won't get into detail now, I hesitantly sign her discharge papers to enable the hospital to release her home.

Back to the "gray area." Hospitals and states want to avoid risk and treat state-directed guardianship very carefully to avoid lawsuits. For starters, in my case, the hospital must perform psychiatric evaluations and involve their "ethics board" prior to moving forward. I've been told, "if there are no family members involved who can help the patient" the process may move quicker and state may be more likely to initiate guardianship. However, a case manager informed me they were going to move forward with guardianship and I would be contacted within 4-6 weeks by a state attorney to be interviewed to be the guardian (or another family member). I followed up with the case manager who told me they didn't pursue guardianship and suggested I obtain it independently which is expensive. I reached out to several lawyers for information, but didn't retain their services for various reasons.

I also reached out to Adult Protective Services, county family services, doctors, social workers and case managers, elected officials … you name it, anyone who will listen. My mother insists that she retain her independence. Yes, I know my mother is quickly heading down a path of extreme medical and legal challenges, but since she has enough sense to know when a psychiatrist is questioning her to determine in her competency, she gets up and leaves the hospital and staff can't do anything about it.

A case manager told me "we all have a right to make poor decisions." I think deep down my mother understands she is approaching end of life and she requests privacy and stay in her own "cluttered" house. My mother doesn't want any help from me as she believes I'm part of the conspiracy to get her committed.

I think you and I have at least one thing in common, we want to help our parent who isn't making the right decisions and has declining health (dementia and CHF), but they don't want our help. This is hard because we want the best for our respective parents … maybe they just want to be left alone and in the U.S., don't they have the right to be left alone?
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Krspalding Oct 2018
Yes I am in the same kind of situation. Just makes me sad because my dad would die if he knew what he was doing. I understand that this is what he wants but if he was in his right mind he would not want this at all. It hard to let go for me, but maybe that’s my lesson to learn. Nothing good lasts forever. Prayers and positive vibes for everyone in a situation like this.
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I have not had experience with this per se... Mom refused to move in with one of us, move to AL or have people come in. She was in better shape financially and personally, having sufficient funds and still mostly able to do most ADLs (I took over finances when I could see it needed to be done, we took the car away and assisted in buying necessities without having to use our funds.) She was forgetting to take pills, even with a dispenser, eating frozen dinners and boxed junk. We were exploring places and had one prepped, but she was refusing to go. She did have an emergency of sorts just prior to the move (delayed it a few days), but a phony letter from "elder services" my brother wrote up got her to move, albeit mad as a hatter!

The only thing I can point out is that depending on the state you both live in, they could hold you "responsible" if something happens. That was MY concern about leaving mom in her condo alone. I would bang on every door you can find to let them know that he NEEDS to be cared for and that YOU cannot do it. Police. Doctor. EMTs. APS. DHS. Social Services. Senior Center might have information you can use. The Pamphlet left at his door should have contact information on it. Contact them ALL! Send certified letters to back you up if they do nothing to show that you made every effort to address this and you were ignored.

It is sad that there are cases of guardian system abuse (lookup article in New Yorker re Rudy and Rennie North), where unscrupulous people take advantage of the elderly, even those who do NOT have dementia, yet when there ARE needy elders, you are ignored! But, do cover YOUR butt and call/write everyone and anyone you can think of.
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You should contact his town's Council on Aging who has an elder case worker and also a social worker.
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My heart goes out to you.

You have received some great suggestions. The only one I would add, talk to the Social Workers at the hospital. They maybe a good resource for you.

Perhaps if you explain that he does not have safe living conditions they may not be able to discharge him.

Good Luck
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Maybe the ARDC can step in. The hospital can get a 24 hour hold, even if he had a three day hospital stay there’s qualifications for Medicare with nursing Home rehab. Social worker and remaining interdisciplinary team can help. Talk to his Dr. to start with. Good luck
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From reading the excellent answers here, it seems the quickest way to get things moving is to call the Health Department. Tell them he has dementia and is living with no running water or electricity. I believe they won’t take “no” for an answer. Just remember to stand your ground when they want you to take over. Best of luck, dear. Stay strong.
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Erinbrockavich Sep 2018
This situation came in to our lives about 3 year ago. It's a nightmare. My MIL's private doc. Was of no help. His words exactly to us were I CAN GET MY ELDERLY TO JUST ABOUT ANYTHING. She is in the later stages of dementia. Lock down unit at the NF. We had to endure so much just to get her evaluated.2 am emergency to the geriatric unit that was 2hr. Away because no one would accept her. It's horrible. I suggest staying away. Stay out of it.
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I feel for you and all you have been through. When it comes to the state everything moves at a snail pace, so brace yourself. I do agree also with your decision to stop feed the beast, but I must caution that if there is an iota of hope for mending the relationship, that you just keep the door a little ajar. Because at the end of the day he will always be your dad. As long as he is alive there is hope. Do not wait or put off calling the Department of Aging and Disability Services (DADS), your local agencies and other suggestions mentioned by some in this forum.
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Call your local Agency on Aging for some guidance and assistance getting him a caseworker (if your state still provides those through DHS).  That caseworker, or you, will likely have to end up getting Adult Protective Services (APS) involved due to his negligent self-care and lack of adequately providing for his own necessary needs.  They may appoint a guardian from the Office of Public Guardian, or due to his rapidly declining state of health.  They may even issue Emergency guardianship to handle his health decisions - which would likely result in him being mandated to go to a care facility.  I'm pretty sure the state will first ask you (or another relative) to step up and take that role, though; so be prepared to give them really solid reasons as to why you can't do that.
If he earns Social Security Income, have his doctor write a letter to Social Security about his incompetency to handle his own money decisions and say that he requires a payee to handle his affairs. That shouldn't be hard to prove/validate if he has a diagnosis of Dementia and is not adequately providing for his own needs.  Then, Social Security Administration will require a payee to be appointed - family member or a payee agency in his city/state.  That payee will then take over being in charge of paying for all of his necessary bills (housing, utilities, health care) and issue him limited spending checks, so he can't just blow all of his income on unnecessary things.
Hope these measures can help reduce both stressors to have his financial problems better handled and his lack of self-care addressed.
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You should give full details to his Dr. The Dr. may immediately request Hospice to check. The cost is covered by Medicare when Dr. makes the request. The Social worker who worked along side with Hospice when my mother was failing with age and Dementia was very helpful, and Hospice was amazing.
They should be able to prescribe something for your fathers agitation and stubbornness that comes with certain types of Dementia.
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shad250 Sep 2018
His doctor? Doc should have been doing something to address this, especially since he has been in the hospital every week to get fluid drained. Hospital would notify doc what is going on.
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Oh *dear*. I'm very sorry to read of your family's situation, it sounds horrendously stressful.

Hadn't you better contact your local social services and get their advice? I don't for a moment disagree with your decision to stop funding your father's precarious situation, I can't see what else you could have done: I'm sure you were correct that you were merely supporting his ability to reject help that he badly needs.

But it is just such a pity that your parents' marriage came to this and that his behavioural problems weren't flagged and addressed by his medical team long before. I feel for all of you especially because my own mother was diagnosed with CHF in the mid-'90s, and I swear nobody but nobody even mentioned vascular dementia until 2012 - even though it's medically well recognised as a very common result of long term heart disease. When I think how much better I could have coped if I'd had been given just a little heads-up much earlier on, it makes me want to spit.

But never mind the "if onlys". I hope you'll be able to get good, practical guidance from your local services - ideally from people who don't hope they can bully you into doing their work for them.
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Unfortunately my experience is you need to keep records of the situation and contact Elder Services and the primary care dr.. Things work very slowly and not with you. I hope you don't end up like me just waiting for a catastrophic event... I've been told that's my last and only option at this point (repeatedly).
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Are sure all he receives is SSI? If he earns more than $2500 a month, the state and Medicaid will not pay for his care.

Your father may mentally be gone, but he's still your dad. Call his social worker, take a few days off and drive over to help manage the situation.
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Judyskid Sep 2018
I dont agree with your answer. You dont know what kind of relationship she has with him. Not everyone had a great childhood.
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Call your local adult protective services.
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A call to the Health Department or Building and Zoning might work. But they work slowly.
A call to Adult Protective services might also work but if he does not allow them in they can not do anything.
I am very surprised the Hospital has not said or done anything. If he returns to the same hospital every time they should have noticed something. Without water I can not imagine that he is washing laundry often nor would he be bathing often. Can you contact the hospital and talk to a Social Worker? Or are you contacted when he goes to the hospital? If so ask to talk to a Social Worker at that time. Due to the privacy laws THEY can not tell YOU anything but you can certainly inform them of what you know. (Unless you are listed on the forms that you Dad signs that they can discuss findings with you.)
Unfortunately in many cases nothing can be done until a "catastrophic event" occurs. But we should do what we can to prevent one.
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helpingson Sep 2018
Very true. My mom requests privacy. Hospitals contact me every time she visits. One hospital system will discuss a limited amount of her medical condition, while other systems keep me in the dark. Developing “off line” relationships with case managers and staff has been helpful.
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If you feel he is a danger to himself, a possibility is calling 911 and telling them he is a danger to himself. The cops can Baker Act him. The system may indeed Baker Act him and hospitalize him for a psychiatric evaluation. In Florida a Baker Act is good for 72 hours, but if they are hospitalized for a medical condition it does not go into effect until they are put in the psychiatric ward. A psychiatrist will evaluate him for competency. IF he is ruled mentally incompetent the psychiatric center will have a visiting Justice come over and establish legal guardianship. This person can be a close family member OR a Court Appointed legal guardian. If he is incompetant he may end up in a nursing home since he cannot manage his own life.
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Can you call the police to do a welfare check? Explain that you are concerned that your dad is living without running water and electricity and is a danger to himself due to non-compliance with meds and end stage disease, but that you are unable to care for him. Tell them you are worried and want to get him somewhere safe.
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Call the health department and tell them an elderly person with Dementia is living without electricity and water. Not having water is a health problem. How does he wash and flush a toilet. The health dept can get him out of the trailer. I just had this happen to a friend. Do not take guardianship. Allow the state to take over.
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shad250 Sep 2018
Slop bucket. There was an episode of "Live PD" where an older guy had one. He even showed the policeman when they were dispatched to a trailer he was living at.
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Would he consider hospice? That way he would get visits from the hospice nurse and a nursing assistant to help with bathing. Unfortunately, APS doesn't have the authority to force someone to leave their home. Their power is a lot more limited than CPS, which can remove children immediately from an unsafe situation.
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I don't know how to advise you - I guess he wouldn't let APS in the door so they left the literature, and since they couldn't evaluate how he was doing the case was dropped (or put on hold), you could try calling to inquire. It was unfortunate that he was allowed to come home after being in the hospital, that was the time to make it clear that he had no one to look after him and they needed to find a placement. If APS won't help you may need to wait for another hospitalization and you can then refuse to bring him home.
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Yes. After my dad got out of a psychiatric hospital (they are the ones who diagnosed him with dementia) he allowed a in-home nurse to come in once. She called APS, but the only thing they did was place a old brochure/copy of a copy on the front door and asked him to call. Of course he did not want to call. Should I call APS? The only problem is I am not quite sure where he is. I can give them another address, but not sure he will be there. I feel like APS doesn't have the resources to help. What can his doctor do? Thanks
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Has anyone in authority been informed that he is a vulnerable elder without supports? You might want to contact APS and his doctor to get the ball rolling.
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