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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 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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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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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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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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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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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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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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Also see:
APDA.org

or

www.apdaparkinson.org for more suggestions about parkinson's disease and outreach.
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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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