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Topic Making the Transition - The Medicaid Nightmare Go to previous topic Go to next topic Go to higher level

By searchlight On 2011.09.25 14:16
I have written other postings about dealing with an insurance nightmare for my father, and my father's decline, and "anytime" demise
stated by his doctor.

Well as of today, he is still alive. Not on machines, not in a coma, not in pain, talking a little, and eating more. Does this mean a recovery to his former self, probably not? Unfortunately, the doctor's dwelling on his death has deprived me of little appreciation for him still being around.

Within two weeks, his secondary insurance's 30 day coverage expires, and I have to plan for transferring him to another facility which would have to be one that accepts Medicaid. Medicare does not pay for long term, nor his secondary. My father does not own a house, so I cannot sell it for income, nor does he have other liquid assets. Just his pension plus my mother's and Social Security.

My mother is still alive, living in the apartment that they both shared renting. She has Alzheimer's but not that severe yet, and I have been their Caregiver, and they have been my full time job.

I have applied to several aid programs in the community and the VA, and am always told the same thing, their pensions are too high, we do not allow for deduction of living expenses such as rent, etc.

I have inquired at the VA regarding the Long Term Care program and am told that there is a 1 year waiting list. His community doctor has suggested Hospice but I do not think that is appropriate for him, as he is still living. She has not done a good job of explaining this or palliative care, so I am hesitant. If my father is making slight improvements, I feel that this option is basically "pulling the plug." The VA tells me that their hospice program is limited, and the family must agree that the patient has less than six months to live. Again, as you can see, a very narrow explanation.

Back to Medicaid, I have already applied, and until it is approved, I have been told that a Medicaid facility, I have been talking to a few, would accept him as Medicaid pending.

The Social Worker at Medicaid, cannot tell me or give me any example of what Medicaid would leave my mother for survival from my father's income in the community, nor provide some example despite their income sources being straightforward.

Moreover, I asked one facility if they take my father "pending", what happens to the portion of my father's income for that month of pending. He told me that I should not spend any of it because I will receive a bill for that month. (You would have thought that the Medicaid Social Worker would have explained this important piece of info at the beginning) I replied that my parent's have debts plus rent, I cannot just not spend money to make payments.

So since no one can provide a straight answer, and everyone talks like people can afford private pay, or have houses that they can sell, or have thousands in the bank to spend, I am forced to seek the help of a Bankruptcy attorney because I cannot pay as POA creditors, rent, and retain monies for when Medicaid determines the dollar figures all at once.

Any suggestions? This all happened within the last three months. All because he fell in a nursing home while in a supervised setting, and broke his hip the day before he was to be discharged.

Social Workers, Doctors, all the same. Smile when admitted, smile when discharged. Got a problem, two words here and there, and goodbye. Deal with it. No one offers guidance or help unless you are affluent. If you are middle class, you are SOL.

By Pearly4 On 2011.09.25 17:09
Medicaid is a nightmare, yes. But once you navigate the system and in, it works - somewhat.

Long story short - it was a process that was not made easy or simple and took a lot of online research and phone calls on my part. Talk to everyone - instead of a bankruptcy lawyer, try an elder attorney, they may be better suited and have ideas on how to qualify. Our state legal aide resources had much information online.

You speak of Hospice as if it were a death sentence, but we're all going to die. There are other sources of hospice care besides VA - some hospitals provide it, some elder care facilities, some private sources. I'm not sure what is available where you are but generally one only needs a terminal diagnosis to be able to receive hospice care (in the home or a facility). It does not always mean death is iminent only that a terminal diagnosis has been given.

I went through some of this with my mother who was not as debilitated, but did have some major dementia. Because of her Parkinsons she could have qualified for Hospice care, however I was able to get her into a the Medicaid program and the Frail Elderly program. Her health was not such that facility care was necessary however, after major back surgery we did debate sliding into a care facility for continuing care and instead brought her back home. She had not qualified for Medicaid at that time, so we were told she would need to apply, pay privately until qualified, then Medicaid would pay. We were also warned that Medicaid paid facilities are not always the best care situations - i.e. multiple bed rooms at the far end of the hall, etc. She had only her SS, a small annuity pension, and spousal support from a divorce. At the first application we were told she received $47 a month in income too much! After the second application she just qualified, and by the first renewal she qualified for transfer to the frail elderly program.

Believe me, it seems as if everyone else has money to burn and pay for care, but most of us (I presume here, but believe its true) struggle as you are and end up doing most of it ourselves. It took a while but I ended up being grateful I could help her and that she did not have to do it herself. I only hope someone is there to help me when my time comes.

By RhondaM On 2011.09.25 18:49
I agree that you are thinking and looking at hospice in a different light than it actually is, but I won't repeat all that I said before in another post about how wonderful they were for my mom, who lived 10 months after she was put on it for cancer (in her own home and then in mine at the very end) and how she probably had 10 of the best months of her life in relation to the last 2 or 3 years of her life, simply because they came to her instead of her going to various doctors and waiting for hours, and took much of the burden off of me because I had someone to call 24/7 who would come running anytime I needed them, even the drugs were delivered. We had a very good quality of life, she as the patient and me as her caregiver, and I am so thankful that we had that whole 10 months to build relationships with these wonderful people who helped us so much, and whom are still friends with me today, a year after my mom passed, very comfortably and peacefully at my home. Once you get over your fear or misconception of what hospice means and how they help your dad keep his dignity, keep him comfortable and INCREASE his quality of life at the end, you will be glad you did it. They even took care of me afterwards as far as grief support. I can't say enough good about them, only that I really regret not getting that kind of support for my dad in his last months with PD. I also have a niece who is a hospice nurse and she has had some patients for 2 years before they passed.

By RhondaM On 2011.09.25 18:56
Also, I'd like to add that my mother made many improvements during her 10 months on hospice, mostly because of the weekly visits and the right medication. She had had diarrhea most of her adult life from IBS and no one could ever stop it, but hospice did with a drink she drank every morning. That improved her life tremendously. We joked that it is a shame you have to be dying before you get the kind of one on one compassionate care that everyone deserves. Just because you are on hospice does not mean they are "pulling the plug," they are cheering you on, helping you feel better physically, mentally and spiritually, just not actively fighting the battle to cure you when that battle can be much too hard for an elderly person with many issues. My mother thanked God for hospice daily and so did I. It is not giving up, or killing your loved one, or putting them to death. It is providing comfort at end of life, and don't we all want that? Especially someone who has lived a long, full life and deserves dignity and loving care?

By lurkingforacure On 2011.09.25 19:26
Hospice: I would have loved to have had that as a full-time option for my mom, but I was told very clearly the most they could do would be to come to her home three times a week although they would be on call all the time. Or, if she stayed in the SNF after her Medicare days were up, which meant she would have to pay 100% to stay there and it was cost prohibitive. Why would someone pay to stay in a SNF and have hospice come in to the SNF three times a week on top of that? It didnt' make any sense to me.

If you have someone who needs care or watching 24/7, I dont' think hospice alone can be used for that. Correct me if I'm wrong. I was told once we got my mom home, I would have to find a 24/7 caregiver for her (ie, private pay) and then hospice would come in three times a week for bathing, checking meds, etc., I guess it is sort of a caregiver relief. If I'm missing something, let me know.

By RhondaM On 2011.09.26 10:12
There are different levels of hospice care, at the end of my mother's life she was having more assistance on a daily basis, but I was able to take care of her at home by myself until the end so I was blessed.

In my sister-in-law's case recently, her mom was in an SNF and still on hospice care until her death because most SNFs don't have time to give that much individual care to a patient as this same hospice did on a daily basis.

I guess I was just really lucky to have an excellent hospice. And I think they could've helped my dad emotionally and spiritually at the end even in a nursing home since he was very anxious and depressed about facing death. My mom wasn't, she had an excellent attitude throughout.

I am giving my personal experience with hospice and trying to make the original poster see that it is not pulling the plug on someone, it is giving them some dignity and quality of life at the end of their life. I have heard many others here in this forum give great reviews on hospice in their loved ones lives. Sometimes I think we ruin all quality of life for our loved ones by fighting so hard to make them better when they can't get better, instead of giving them comfort and dignity at the end.

It is not the solution for some, but it can be a wonderful solution for many. If the doctors think her father has 2 weeks to live, and they can go by signs that we can't always see, then a hospice facility may be a good choice where her father can be kept comfortable and peaceful and not having heroic efforts and constant painful proddings and pokings going on as it is in a hospital. I had a cousin pass away last spring and they were trying so hard to save her in the hospital, putting tubes down through her nose and constantly taking x-rays and doing tests and she would cry out in pain. When they finally gave up and had hospice move her to their facility, she was much happier and was able to enjoy some time with her family before the end came very quickly and peacefully, with the benefit of chaplains and social workers to help the family deal with it.

I just don't want people to cringe at the word hospice and think of it as a cruel thing to do to their loved one. It can be a blessing for that loved one and the family. Whether it works for everyone or not, it can be a wonderful thing for all when it does work out to use them.

By lvmymom On 2011.09.26 13:56
You asked for advice and Rhonda and the others gave you some great advice… but I think we can break this down for you ...

First Medicaid
You'd like the public (Medicaid) to help take care of your dad without leaving your mother improvised. I believe that is exactly what Medicaid does. Medicaid is our Nation's financial aid to people who did not take out long term health care insurance and who can't afford to pay for long term care now that it is needed. You fit into the exact reason there is Medicaid. So it should be fine.

Medicaid will combine your parents' income and will leave a modest amount for your mother's financial needs. It will be modest and she may then need help with SSI as her financial needs increase with age.

But right now we're talking about your dad's care.

Your parent's savings and income that Medicaid has not directed for your mother, will then be used to care for your father. (Which makes sense, since that is why they saved - to help take care of themselves after they could no longer work). Whatever is not covered by his savings and income will be covered by Medicaid.

Secondly, Long Term Care

Long term care facilities are for people who are in need of full care to 'keep alive'. Your father's savings and Medicaid will cover this.

Now, onto hospice....

Hospice is short term care for people who need help while 'dieing'.

Forth and lastly: Your dilemma

You say your doctor is trying to prepare you for your father's enviable death. You also say you don't believe your father will die soon. You would like to help your father live in a long term care facility.

This is your dilemma - help him stay alive or help him die peacfully.

If I am reading this correctly, it appears your doctor believes your father's health "any day" is not good, and it may be time to call in hospice, where your father can go home to his apartment, be with you and your mother, not use public aid and die peacefully with you nearby.

You have already done research on "keeping alive" in a full care facility and are finding the public health insurance to be a nightmare ... so let's look at he alternative, hospice at home.

Since you already work full time as your parent's caretaker, hospice would start by coming over to help you at least three times a week. They take the patient off as much medication as possible, make them as comfortable as possible, with hospital bed, oxygen, wheel chairs, pain management etc. They come three times a week to bath him and give you some time off. They would continually assess his health and as they found he needed more attention, they would start coming more and more as needed. They would make sure he was in no pain and at peace. They would help you by offering comfort and guidance when you felt overwhelmed. They'd help you by allowing you to take off time for yourself.

Remember, Hospice simply starts with three times a week to asses the needs. If they feel a nurse is needed more, they will make sure of it.

There are options here ... no one can make the choice for you and your father. You may want to talk this over with him or with your clergyman or with your best friend. Or as you have reached out to this forum and have been given valuable advice and many have tried to share their stories ... maybe you can process the information better by letting down your 'guard' and rereading all the posts from the two messages you've started ... I know how you feel. It is an anxious and nerve-racking time right now.

We all understand this is a place to share frustrations too ... and that is what you are feeling ~Frustrated. Gosh, we get that. It is so darned frustrating and hard and all you want is what is best for your father. How can it be so hard? Well, it is, darn. As Betty Davis said "Old age is NOT for sissies".

Good luck.

By searchlight On 2011.09.27 03:12
Appreciate the replies but to answer some misconceptions.

If my parent's had Savings, maybe Medicaid could have used that but here in NJ, many facilities want you to spend down your assets before they even allow Medicaid to be applied. My parents have no Savings, they spent that years ago on other family crisis that appeared, nor do they have a house to sell being renters. Not everyone is fortunate to build, and keep a nest egg. Therefore, Medicaid will attach some of my father's income. Unfortunately, Medicaid does not allow for deduction of current living expenses other than utilities and rent.

Regarding Hospice, I spoke to several nurses in the facility where he currently resides, and some nurses from the outside. They all agree that Hospice varies by facility and doctor. Some facilities extend themselves, other do the bare minimum. The degree depends on that plus what you can afford, not necessarily on your preference.

My father is weak from his recent medical issues, has eating issues although improving somewhat, and sometimes confused, so taking him home is not an option. He needs 24/7.

Keeping him alive or dieing peacefully is not just a matter of semantics or simple analysis. My father does not share the weight of the decision making, nor my mother because of circumstances, why should they? But in this chapter in their lives, if anyone should have helped with the navigation is the doctor. In other words, whether death is the final result, managing the transition could have been handled a lot differently. He is not terminal. He is not in pain. He has experienced a setback, so whether he has two days, two weeks, two months, or two years, I feel he deserves every opportunity.

As everyone's situation, and frustration is different, I cannot never say I know, and understand what you all feel, and you cannot possible know how I feel.

Advice I seek, not a lecture.

By Pearly4 On 2011.09.27 08:38
Here, there are ways to protect those assets, meager as they may be. For instance, burial plots can be bought and paid for, prepaid funeral plans may be used, etc. You're under a time crunch so some of that may not be able to be utilized, but the elder attorney would be able to assist you with some of that. Also be aware that at death all assets, again meager as they may be, go to the state here as repayment - some personal effects, funeral expenses, fees to close the estate, etc would be exempted.

By susger8 On 2011.09.27 09:48
And Medicaid has provision for protecting the well spouse -- she had to be left enough assets and income to live on.

Agree that an elder attorney could be quite helpful. And I also rely on social workers (who are usually free). The hospital should assign one, but I have found it more helpful to get advice from a social worker from the county Office on Aging. ( am also in NJ.)


By susger8 On 2011.09.28 09:45
I had another thought. I think you've said that the reason you need your father to be in a SNF is because he's weak, has difficulty eating and is confused. He probably does need 24/7 help -- but honestly, unless he has additional problems, he might not need skilled nursing. His condition sounds pretty similar to my dad, who has been in his home with a live-in health aide for the past several years. For someone who qualifies financially, and it sounds as if your father does, there are programs to pay for this type of help to keep the person in the community and out of a nursing facility.

Again, I would go to a county social worker to find out about this. May I ask what county your parents live in? I am familiar with the setup in Somerset County, but have some experience with Morris and Union from helping with my father-in-law and my husband's uncle.


By searchlight On 2011.09.29 00:41
I appreciate the suggestion but my mother has Alzheimers disease. Bringing my father home in his current state would only cause confusion, and place a tremendous burden on myself to provide for his care. They have once again started IV for fluids, his doctor told me he was dehydrated. Moreover, he is not eating much again but today he told me that he does not like the taste of the food.

The solution you suggest for a live-in requires private pay. My parents do not have the resources to support or sustain a live-in. My father needs a nurse and an aid 24/7. The people I spoke to at Bergen County Aging tell me that a move to an SNF is more of the right thing at this point. Regardless, the Social Worker at Medicaid, and all the other programs that I made an application including VA, always reply the parent's income is too high. For Medicaid, he will qualify for Medically Needy but most of his income will be allocated to the nursing home, and some to my mother in the community to help pay the Rent, Utilities, and food.

As an FYI, his doctor called me yesterday to tell me that she has not given up on my father. I replied what do you expect me to reply to that as you told me that he would be dead by the weekend. I told her that whatever time he has left two minutes, two days, weeks, or months, I intend to give him every opportunity. For the record, will he be like his former self before the hip fracture, of course not but I did not give up on him. She is not God nor I so we will just have to take it day by day.

By susger8 On 2011.09.29 10:36
Sounds like you have already figured out what your family's need are, that's great.

You might not have heard about this program for people who qualify for Medicaid. I know your dad has not been qualified up until now but it sounds as if he might meet the requirements. It might be helpful for you. It could provide additional services besides what he would get in the SNF.


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