Help! they're going to kick BF's dad out of the hospital

[LoraJ]

My boyfriend's father has been in the hospital for 3 weeks. He's been diagnosed with colon cancer. They were trying to get him better so that they could remove the tumor. Now they are saying that it's too big and they can't operate and discharging him tomorrow. He's too weak to go home. There's no one to take care of him 24/7. He doesn't have insurance. We just don't know what to do right now.

I contacted the hospital advocate, hopefully she'll go see him. Also the social worker. Other than that, is there anyone else I can contact? Should I contact the American Cancer Society.

Some friends have suggested hospice services, but isn't that for end of life? Teh cancer hasn't spread, I don't know why they are writing him off.

I'm at such a loss right now.

 

[In a hurry]

Talk with the Social Worker at the hospital (if you haven't heard back from him/her, be persistent!). If he doesn't have insurance,and doesn't need treatment, it isn't their job to keep him. I know that makes it hard for families, but it is really a family responsibility.

 

[poohandwendy]

I really have no answers as I have not dealt with anything like this. But I wanted to bump this in hopes that someone 'in the know' will answer. And I wanted to send out some {{{HUGS}}} and prayers for your BFs father and all involved. That is so sad.

 

[LoraJ]

Talk with the Social Worker at the hospital (if you haven't heard back from him/her, be persistent!). If he doesn't have insurance,and doesn't need treatment, it isn't their job to keep him. I know that makes it hard for families, but it is really a family responsibility.

He does need treatment. he can't even walk right now and has some sort of bag that he doesn't know how to use properly yet. My boyfriend is his only family here and he needs to work so he can help pay for this.

 

[Maleficent13]

Definitely try to get the social worker to talk to your BF and his father; there are people who can help, I'm sure. PM me if you would like; I may have some helpful info for you.

 

[Sleeping~Beauty]

I'll bump this up so you can get as much assistance and information as possible. Prayers and pixie dust.

 

[kdibattista]

How about trying to contact your local state representative. They may be able to guide you with any services available. Good luck and I hope he gets the help he needs

 

[ducklite]

If he is that ill that he is unable to work, he should qualify for disability from his employer. If his prognosis is such that he'll never go back to work, he needs to get on SSDI. If he owns a house he'll have to sell it and spend down the proceeds before he'll be eligible for medicaid.

You need to start with the hospitals social worker, and then possibly speak to a lawyer.

If they can't operate and it's malignent, then unfortunately it will be terminal. The question then becomes, what is his life expectancy? Only his doctor can answer that. And that question is probably the first one that needs to be answered before options for ongoing care are determined.

Perhaps a stay in a rehab center to get him comfortbale with his self-care is indicated? Again, the hospital social worker needs to be your first point of contact.

I'm sorry you're going through this.

If he's well enough to be home with someone checking on him now and then, perhaps VNA can be arranged to come in twice a day. Again, the discharge planner or social worker from the hospital needs to become involved.

Anne

 

[In a hurry]

I know, but it isn't treatment, as far as a hospital is concerned. That is maintenance.

The hospital can't be expected to eat the cost of housing a patient that can be maintained elsewhere.

They should have taught him to deal with his "bag" (colostomy ?), and your BF needs to make sure he is listening! I am a colon cancer survivor, and I know that it is comfortable to live in denial, but he needs to take responsibility for his illness. Even though it is hard!

Also, get a second opinion! I just reread your first post, and it doesn't make enough sense. Did he already have one surgery? They took out 36 inches of my colon, I can't imagine a tumor being much larger!

Did you try the pastoral staff?

Can he be trusted to stay in bed, and just have someone in a couple of times a day?

 

[ducklite]

One other thing--where in NJ are you?

I had a friend who was receiving care at a hospital in NJ that was substandard. I urged her to call the Cancer Center in New Brunswick, an award willing, state of the art facility which is part of Robert Wood Johnson. They treated her with dignity, made sure that she had an adequate discharge plan, and gave her the best possible care.

Anne

 

[LoraJ]

One other thing--where in NJ are you?

I had a friend who was receiving care at a hospital in NJ that was substandard. I urged her to call the Cancer Center in New Brunswick, an award willing, state of the art facility which is part of Robert Wood Johnson. They treated her with dignity, made sure that she had an adequate discharge plan, and gave her the best possible care.

Anne

He's at Saint Mary's in Hoboken.
One of our co-workers dad works at Hackensak Medical Center and they seem to have a very good cancer center.

I am going to try once again to get in touch with Hill-Burton and hope they can help out in some way. I tried to get in touch with them when this all started, but none of their links worked. I just called teh American Cancer Society and they gave me a whole bunch of people to call.

He's going to have to go on chemo so they can shrink the tumor and remove it. At least that's what they were saying yesterday. Today his dad feels like they are writing him off, which is why I am getting an advocate involved.

 

[EthansMom]

Perhaps you could look into a retirement home for a short while?

When DH's grandfather had some major surgery, he was transitioned from the hospital into a retirement home so that he could receive round-the-clock care and nursing supervision. He stayed for several weeks until he had recovered sufficiently to be able to go home.

I hope this helps!

 

[LoraJ]

Perhaps you could look into a retirement home for a short while?

When DH's grandfather had some major surgery, he was transitioned from the hospital into a retirement home so that he could receive round-the-clock care and nursing supervision. He stayed for several weeks until he had recovered sufficiently to be able to go home.

I hope this helps!

That;s a good idea, but he's 53, would he qualify?

 

[TeresaNJ]

LoraJ, I'm very sorry this is happening to your boyfriend's father. Unfortunately, it isn't the hospital's responsibility to provide daycare. If acute-care isn't going on, then the patient needs to be discharged to the next level of care, whether that be long-term care, sub-acute rehab care, hospice, etc. I am surprised that after three weeks this wasn't already taken care of. We start discharge planning on admission in the hospital that I work at.

Sadly, we hear this from families all the time, that they have to work and can't take care of mom/dad/etc. Again, that is not the hospital's problem. It is a family problem Ask to speak to the Social Worker, although again, this should have already taken place, to see if she can sign your bf's father up for Medicaid, and to see if he can go from the hospital to rehab. Then while he is in rehab, more permanent arrangements can be made.

 

[barkley]

call the department of health and human services in your area. they can educate you on what medical programs are available in your area. some counties offer adult medical programs, but all states offer some form of medicaid (you can go to the medicaid website and find out what the minimum program offerings are-but some states offer more than the federal mandate). he should also make an application for social security disability (depending on weather he has enough quarters it will either be ssdi or ssi-which is for aged, blind, disabled with insufficient work quarters). in some cases (as with a terminal illness) the medicare portion does not carry the 2 year waiting period (most recipeints must receive cash benefits for 2 years prior to medicare kicking in). but DO NOT TAKE ANY ACTION REGARDING HIS FINANCIAL ASSETS-there is no requirement that he sell his home (it is exempt from financial consideration if he has the "intent" to return to it), also the programs "look back" anywhere from weeks to years prior to application to determine how assets have been "spent down" and inappropriate sheltering/distribution can result in complete program ineligibility.

for the immediate time-contact the hospital social worker and the hosptial billing staff. both should be aware of any programs available for uninsured adults and should assist him in initiating the paperwork (most agencies have specific eligibility staff that go to hospitals to help people in this exact situation). the social worker may also be able to determine if there is a need for either long term nursing care (if he is unable to be without medical attendance 24/7) or in home supportive services (IHSS) which is a program that he may be eligible to government funding for to provide some limited in his home services through (they do grocery shopping, cooking, some cleaning, laundry-non medical services).

another resource is to call your local social services and ask for their "elder" division. they generaly have ombudsmen who can provide assistance and support in these situations.

 

[TeresaNJ]

Lora, your bf's father has to start a Medicaid application before any facility will even look at him. Their main concern is that they are going to get paid. If there are no cash funds, and no insurance, then Medicaid is the way to go. It takes a while though for it to be approved, but if the Medicaid rep thinks it will be approved, they will approve a short-term stay while the application is being reviewed. Facilities do not take patients without a payor-source.

If he lives alone, you can argue that he cannot be discharged to home as it will be unsafe. Has he had a physical therapy eval yet? That will show whether he needs rehab or not, or if indeed he can go home. Just because he can't take care of his bag is not a reason to keep him in the hospital. Has he been signed up for charity care? The state of NJ does have that. Some visiting nurses associations will take charity care, but very few do. His best bet is Medicaid.

 

[Mercy]

When my mom was very sick with a brain tumor, the hospital did discharge her to a rehab facility (a nursing home) till we had time to come up with some plans. That was helpful. I don't know if the fact that your BF's dad has no insurance has any bearing on this or not.

This is a very difficult situation, and your boyfriend is in for a very difficult time. He needs to prepare himself for the long haul however long that is. He needs to start exploring all avenues of care for his dad.

I'm sorry he has to go through this, prayers for him and his dad and you also. You need to support him and help him all you can. I could not have done what I did for my mom if I hadn't had tons of outside help from family and friends.

 

[ducklite]

He's at Saint Mary's in Hoboken.
One of our co-workers dad works at Hackensak Medical Center and they seem to have a very good cancer center.

I am going to try once again to get in touch with Hill-Burton and hope they can help out in some way. I tried to get in touch with them when this all started, but none of their links worked. I just called teh American Cancer Society and they gave me a whole bunch of people to call.

He's going to have to go on chemo so they can shrink the tumor and remove it. At least that's what they were saying yesterday. Today his dad feels like they are writing him off, which is why I am getting an advocate involved.

Yes--get him out of Hoboken and call Hackensack for an appointment. They have an excellent oncology unit, and offer very caring and compassionate care.

I have a friend who's spleen ruptured--still have no idea why--and she was uninsured. Her surgery and ten days in ICU at Hackensack were covered under an uninsured program they have, and her care was so good that she wanted to be part of their team--after she recovered she applied for a job there, and is now a unit admin--unfortunately not in oncology or I'd ask her to intervene.

Anne

 

[LoraJ]

I'm aware that it isn't the hospitals problem that he has no one to care for him when he gets discharged, but they don't seem to be giving us much help or time on what to do. We'll be able to grocery shop and stuff for him. I'm just not sure we'll be able to give him 24/7 care and he won't want us to do that. The other family members live in New Orleans and I don't think they fully comprehend what is going on. I wish that some of them could come up here for a little while and help out.

We'll probably move him from his 3 bedroom apartment into a studio apartment. I think he has already signed up for social security disability. Whatever it was he signed up for has a 5 month waiting period. For some reason they said he doesn't qualify for medicaid.

Thanks so much everyone for tips on who to contact.
Hopefully the hospital social worker and advocate can give us some more info.

 

[Puffy2]

The social worker is the best resource, they will tell you exactly what is available to you. It sounds like hospice care will be needed, but that is not 24/7 and someone will have to bite the bullet and take care of him. Hospice will manage supplies, pain meds, occasional sitter, occasional nursing care, chaplin referal, social worker, etc....

If the social worker at the hospital doesn't answer questions adequately, ask for another one.