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He is unable to take care of himself. He can't walk, feed or do anything without someone. He has been in and out of hospital several times but they discharge him without any help and we are right back to where he started. He has applied for disability, and Medicaid. He was denied disability due to lack of evidence, and Medicaid is still pending. I am not able to care for him physically or financially. He is in the hospital now and they finally tried to find him a bed in nursing home but said they could not find a charity bed available and they were going to discharge him. I asked the case worker what's next. That I couldn't care for him and she said she didn't know but they was discharging him. What do I do?

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Good. The hospital is the best place to work forward from.
A) and AT ONCE call in all the Social Workers.
Tell them your brother has been discharged UNSAFELY now ______ times. Tell them he must go to rehab or another facility and cannot return home to live alone unsafely. Tell them it is up to the hospital to get referral to MD for testing.
B) Make it clear you DO NOT WANT TO DO POA nor do you feel fit or able to do that mentally, physically, emotionally or educationally.
C) Inform the hospital that another discharge home without services will result in your informing JCAHO that the hospital's licensure should be overseen because they are practicing "unsafe discharges". Ask that your putting the hospital on notice about unsafe discharge needs to be scanned into the chart (this means you say this in WRITING).

I caution you NEVER to take brother into the home even briefly.
I caution you not to become POA unless you understand how difficult this job is in terms of applying for medicaid, getting placement, dealing with a possibly uncooperative person.

Call APS should he be discharged unsafely.
Let them know you cautioned hospital about unsafe discharge.

It is entirely up to you now how much you choose to take on. I took on financial management. I did this for Trust and POA. I don't know that I would do it again. I believe I would have had a Fiduciary do it.
I, as a retired RN knew I could never do in home care. I hope you understand that it is unlikely that you can either.

I am so sorry. WE have no choice in this, just as your brother doesn't. Time to avail him of all the help the government can provide to him, and the hospitals, rehabs and social workers. Time to educate yourself as well and as completely as you can about Parkinson's.
Again, I have lived this (my bro had Lewy's dementia) and it is very difficult. I truly wish you the best.
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Notrediyet May 17, 2024
Omg! This is overwhelming. I don't know anything about any of this and it sounds like a bigger fight than I imagined. You say call all social workers. What do you mean? And I'm sorry but what is APS and JCAHO ?
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Alva is absolutely right, do what she says

You can do this, we will help you though it!
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Also see:
APDA.org

or

www.apdaparkinson.org for more suggestions about parkinson's disease and outreach.
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Once you request to talk to a social worker on his behalf (either in the hospital or by calling that county's social services), and the hospital is told by you in no uncertain terms that he is an unsafe discharge and you are not his caregiver, then perhaps social services will get an emergency guardianship in place and start to find placement for him, or they will move him to another wing of the hospital or rehab while he awaits this.

Do not believe anything the discharge staff "promises" about "helping you" if you take him home. They will bold-face lie to you to get him out of their care.

Once a judge appoints a 3rd party legal guardian for him then all his needs will be taken care of. We personally had a good experience when my SFIL with Parkinsons become incapacitated and also had Lewy Body dementia and no PoA. It went as well for him as it could under the circumstances and the legal guardian was very communicative with us.
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AlvaDeer May 18, 2024
I would only say here that if you are willing to try this, do "temporary guardianship". We recently heard a whole lot of awful stuff from one of our members about getting guardianship, then having to go to court with every request including placement, and being denied, but ALSO being denied in wishing to "resign" the guardianship. I would no longer ever take on permanent guardianship for anyone ever after some recent stories I have heard of what it does to the guardians. Let the state take guardianship and you remain the loving sister who visits and remains a sister.
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Good advice already, I’ll only add not to be discouraged by the disability denial. Nearly all applications for disability are denied on the first time applying. Apply again and bombard them with all the medical records available. Get his doctor to write a letter too. It will go through. It can be almost like some warped game before it’s approved
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AlvaDeer May 18, 2024
Daughter, I hear this as well. Like insurance, their go to setting for first request is "no". And then it has to go to appeal. What a lot of work they make for folks already floundering in it.
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social services ai in DHR? Yall please forgive my ignorance. And yall have no idea how much I appreciate this and the support yall are giving me💜
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AlvaDeer May 17, 2024
All Hospitals have Social workers. Ask for the Social Services or social workers to consult with you.
I don't know what you mean by ai in DHR.
There is absolutely no need to apologize here. We all started out in tough places!
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You Need a disability lawyer from social services to help you get medicare and Disability . Then go to the social security office and file for disability and Have his doctor write a Note. The Hospital should help you with a social worker to be your advocate . Tell them this is a Unsafe discharge . The woman On this forum will help you . Usually The Nurse or case manger Has ties to an elder attorney who can Help you push the paperwork through for medicaid . All Hospitals Have social workers , be Persistent . Ask you senior center for advice also .
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AlvaDeer May 17, 2024
I agree. So many things are "if this can be afforded" but social workers can hopefully direct to son pro bono work. This is so sad, and the truth of getting ill in our country is, as in all other things, money talks, and those without it are left scrambling out in the cold.
I agree, as at senior centers, ask doctors, ask EVERYONE for help. See a Social Worker in private practice if necessary. You just have to try to get help.
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You need to follow AlvaDear’s advice step by step, and you need to be strong. Especially contacting JCHAO if necessary. Some hospitals just don’t do the right thing. The case manager there should be finding a nursing home bed for him that will take him under Medicaid pending. That is what happened with my father who also had advanced Parkinson’s. It took a week, but they did find him a bed. Keep fighting and keep the faith.
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BurntCaregiver May 18, 2024
@mstrbill

The hospital is playing the little game that all hospitals play in situations like this. They will admit a patient like this and keep them admitted until they find a LTC facility that has availability. Before they do this, they will pull out all the stops to see if they can push the patient off on a family member. The only reason for this is because they won't make enough money off of keeping the person until a residential care facility is found for them.

This being said, that does not mean they will not keep him until one is found. The hospital is not going to wheel the invalid with Parkinson's disease out onto the curb and walk away.
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Notredi:
Hope you will update us after you speak with social services in the hospital.
Aim first for rehab. Rehabs also have social services workers and discharge planning.
Good luck.
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Notrediyet May 20, 2024
Ok yall! I spoke with case manager and she said that "they" gave time over weekend hoping to find a charity bed but did not and now it was time to talk about his discharge plan etc... I let her finish talking and I said I'm sorry but he can't be discharged because he has no safe place to go. I then continued to tall her what Alvadear told me and she said "i geuss I have to look a little further for a place" and that it could be long way from home even another state etc... and that she would get back with me. Just like that!! You guys rock! I can't believe it was that simple. I'm sure it's just the beginning but round 1 is a win! How ever she did try to use words that she knew upset my brother and tried to talk to him instead of me and my sister, but I guess i will try to prepare for round 2. Thanks yall and I'll keep you posted
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Why does your profile not match what you're saying here in your post?

If your brother is unable to walk or feed himself and is basically invalid due to Parkinson's Disease, that is well documented by not only his doctors but the doctors who have seen him in the hospital.

You have to refuse to take responsibility for your brother and not pick him up from the hospital. I am sorry to say and this may sound harsh, but you have to force the hospital to do its job by abandoning your brother temporarily. If you do this, the hospital will put a fire under themselves and find him a care facility. They will also get the state to appoint a conservator for him too.

The hospital will not just wheel him out onto the curb and walk away. They will admit him and keep him until a care facility to place him in becomes available.
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AlvaDeer May 18, 2024
She was first here in 2021, Burnt. Her mom has passed.
She hasn't changed her profile. I am familiar with her because in the past apparently something I said helped her during the passing of her mom.
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I am in the same situation. My brother has parkinsons and.lives alone. He is 77 and I am 81 with a husband that has liver cancer and I am taking care of him. I live in another state and go back and forth. I don't know what to do. I also have tried many resources. He is on medicaid.
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AlvaDeer May 18, 2024
ABC, is he living alone? Or in in-facility care?
I hope that you and this OP can hook up together somehow.
Do make us a separate post with questions; there's so little we can do to help, but we can try.
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Your brother, when in the hospital or rehab, is an "unsafe" duscharge. He cannot be returned home because no onebis there to care for him. So don't u pick him up. Then u become responsible for him.

If he has been turned down for Social Security disability, then tme for a SS lawyer if none used the first time. It will cost your brother nothing. The lawyer gets paid from the retro money. If you have a lawyer, he needs to file an appeal. In the meantime, you go to Social Services and see if brother qualifies for Supplimental Income, it usually includes Medicaid health insurance. Talk to them too about the problem he is having getting into a NH.
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Can you clarify your statement that he "has been diagnosed with Parkinson's (stage 5)" in other words was he told he is already at stage 5 when he was diagnosed?

If this is the case, I realize his financial/insurance situation may not allow you the freedom to pursue a course of action to improve on the care he gets and for that my heart goes out to you. But, while he is in the hospital, you may want to push for a second opinion. Even if that is not the case, a second opinion might be helpful to be sure he is on the right medication.

If he has JUST been diagnosed and is classified as stage 5 already, I would suggest you consider pushing for him to evaluated by a neurologist (especially if he has never seen one)... ideally a movement disorder specialist or a neurologist with a lot of experience with Parkinson's. (A movement disorder specialist is not always a local option.) There are several other diagnoses that are very similar but different from typical Parkinson's but progress at a much faster pace. I have known many people in our support group who were misdiagnosed over the years. Even if it is Parkinson's, it is also possible he has not received the best treatment plan. Many providers still don't understand that Parkinson's does not manifest itself nor progress in the exact same way for each individual. My husband has had PD for 36 years (young onset) and in has been to stage 5 several times, but once his providers found the right "cocktail" (mixture of PD meds) he became a lot more capable once the new treatment plan was in place.

I realize his financial/insurance situation may not allow you the freedom to pursue a course of action to improve on the care he gets and for that my heart goes out to you. But, while he is in the hospital, you may want to check on a second opinion.

The Parkinson's Organization use to provide free "Aware in Care" kits for families to use when their loved one is in the hospital. They now provide the same information online and call it the Hospital Safety Guide. The information is also useful when someone is any type of facility.

https://www.parkinson.org/resources-support/hospital-safety-guide

You can still order the kit that includes everything and pay a small fee.

https://www.parkinson.org/sites/default/files/documents/aware-in-care-overview.pdf

Here is a quote that we share at our monthly support meetings:
“Every PD patient is unique and everything about his or her disease is specific to him or her and ONLY to him or her. PD has only one time - NOW, the present. The previous hours do not forecast how you are going to feel. The only thing that is predictable about this disease is its unpredictably.”
~~Written by Rick Kramer and Margaret Tuchman~~
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AlvaDeer May 20, 2024
Great information and thanks for all this.
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This post breaks my heart. I feel for you. I cared for my mother who had Parkinson’s disease. The end stages are very difficult.

I wish you and your brother all the best.
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I do not understand the part about "..denied disability due to lack of evidence..: Did his own doctor diagnose your brother's condition? It's good advice to contact Social Security's lawyer for an appeal to prove that your brother is unable to care for himself, let alone work for a living at age 57. And Do Not Take Him Home from the Hospital. Ask the director to get social services to get him into a facility to stay until a permanent placement will be found. Good Luck to you and your brother.
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cover9339 May 24, 2024
It is very hard to get approved for disability, this I do know.
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Notrediyet: It is imperative that you state to the hospital that it would an unsafe discharge to home.
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From what I read here recently in a similar situation, a medical facility is legally NOT allowed to 'kick a patient out" if they do not have a place to go.
I copied it ... and found it - you will need to edit / re-write specifically for your situation.

"Elder discharge / release from hospital  ... "I cannot accept my mother into her home. If you discharge my mother, it is an UNSAFE DISCHARGE and I will call the Joint Commission (JCAHO) to relieve your hospital of its license to practice medicine. My mother is bedridden. I am physically, mentally and emotionally unable to care for her at this time. Whether you send her to placement or to rehab, you need to have your social workers work on finding her safe placement now".' 

They key phrases here are "I am physically unable", "JCAHO", "Your license to practice medicine" and those magic words UNSAFE "

I then just found this: EMTALA. A federal law called the Emergency Medical Treatment and Active Labor Act (EMTALA) requires almost all hospitals to provide emergency medical treatment, regardless of whether the patient has health insurance Jul 27, 2023
________________
And this website:

https://www.verywellhealth.com/how-to-fight-a-hospital-discharge-2614873#:~:text=The%20hospital%20can't%20force,stay%20is%20a%20medical%20necessity.

How to Fight a Hospital Discharge
By Trisha Torrey Updated on 12/30/23-fact checked by Marley Hall

How the Length of a Hospitalization Is Determined 

Before you are admitted to the hospital, the hospitalization and any predicted tests, procedures, and treatments must be approved by your payer—such as an insurance company or a public payer like Medicare, Medicaid, Tricare, or the Veteran's Administration (VA).

To determine what they will cover, payers rely on diagnostic codes called ICD codes and procedure codes called CPT codes that describe what is needed to treat a diagnosed condition. Included in the descriptions are the average amount of time you will need to be in the hospital to complete the tasks that fall under those codes.

In addition, consider
* contacting an attorney
* Call Med-caid
* Ask to see their written policy / procedures.
* Call the hospital licensing board and ask them.

Tell him not to sign anything.
Are you his POA or legally responsible for him? Did you sign any papers accepting responsibility for his release?
If he does this himself, it may be his responsibility on how he proceeds (I do not know).

Gena / Touch Matters
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Did your brother have a Consultative Exam (CE)? SS would arrange and pay for one when there is not enough evidence to make a determination.

I had the same issue, not enough evidence, went through a medical and mental CE, and was approved by Medical.

Good luck to your brother and you!!
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UPDATE: I just got a call from a new case manager saying that they have still not found a charity bed but that they have been rehabbing him in the hospital and he can mow walk 45 ft. And that's what they require in tennessee for him to safety discharge. They said they have expedited his application for medicaid and disability but it was applied for. She said that there was adult protective services he was eligible for but that they couldn't apply for in tennessee but he could when back in alabama. They offered to get him an Uber or ambulance if unable to pick him up but they was ready to discharge. What do I do now?
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AlvaDeer May 29, 2024
You say you cannot accept him back. PERIOD. Tell them that you will call JCAHO about their early discharge to someone now mentally and physically unable to care for him. Tell them you will send him right back to their ER by Uber and they can add early discharge to their grievances. They will threaten you with APS. Tell them you are already dialing APS and DO SO. Tell them you are unable to deal with getting him back and are in the middle of a nervous breakdown.
If you have to you go to ER with a nervous breakdown.
You are under NO OBLIGATION to accept your brother into your home.
TELL THEM NO
YOu do whatever you have to.
This isn't up to THEM. This is up to you, and whether you can at this time give him care.
Time to speed dial your local psychologist, AND APS. Let them know what is happening and let them know that a discharge to you at this time is THREATENING TO YOU.

In other words, you start lobbing grenades.
No more Ms. Nice Guy. It is time to tell them NO NO NO and NO.
See my P.M note to you.
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Is your brother a Veteran?
If so depending on where and when he served his condition(s) may be "Service Connected"
Contact the local Veterans Assistance commission (or Office) and see if they can help determine if he qualifies for any benefits.

You need to continue to firmly state that it is UNSAFE to discharge him to home. That he can not care for himself and you can not care for him.
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I see now they are saying they will send him to a shelter.
That may be where he ends anyway.
Are you sacrificing your own entire life and that of your family to prevent that?

If he cannot qualify for 24/7 care then he cannot.
Ask to speak to the social worker and tell her the hospital is about to make the local news if he's transferred to shelter.

This is not your problem. It is the problem of those who get governmental programs for those indigent without funds and at risk.

I caution you not to take your brother in. He has a good two decades left to live with care. And that will be the dedication of your entire life to him.
I am so sorry but that is the truth.

And this hospital and Social Services is not doing their job, unless your brother is independent. And if he is he may need to go to shelter and work with them on placement.

That's the sad truth.
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It sounds like your brother is 24/7care. He must be able to do his ADLs. Have a place to live and someone to care for him. They are just fishing. Because he has no insurance, the hospital wants him out. They are hoping you will be their solution. You tell them, sorry I am not able to care for him. Call APS. No, No, N0.

Once you take out of that hospital, they will not help you. You will be on your own and believe me, you don't want that.
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notredi,
Yesterday you wrote that the hospital was threatening to discharge your brother to you by uber car.

Can you tell me where all of this stands.
You are going to have to stand strong against them. Be sure to use the fact that you WILL NOT ACCEPT him in your home, that you CANNOT MEET HIS CARE NEEDS, and that you will lodge a grievance if they discharge in unsafely to someplace that cannot care for him.
They need to understand that they have a threat against their license to practice.

Trust me they will use any threat in the book to just get him out their door and off their books. I worked in a hospital for 50 years. I know the drill.
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When my SFIL with Parkinsons fell and went to the ER, the hospital discharge wanted me to leave work (and miss carpooling my kids from elementary school) to go get him 30 miles away during a work day. I was not his PoA but he must have told them I was his "family" caregiver. I told the hospital I wasn't going to pick him up (he was a jerk, long story there). Then I got a call that the SHERIFF was going to drop him off at his home and I'd "better be there" to let him in. They literally threatened me. I wish I was making this up.

Don't underestimate what the hospital will do to discharge your brother. You might want to consult an elder law attorney to see what rights he has or how to play the game with the hospital. It would be worth it for your brother's sake.

Whatever you do, do not go get him. Tell others to not go get him.
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