2. Helping a Person Get the Help They Need at Home

Lesson

When it seems as if the person in need is about to be put into some sort of facility, there may be a way to arrange for services to allow them to stay in their own home.  Knowledge of the intricacies of the Medicaid Law enabled Steve to arrange for the client to get the necessary services at a cost they could afford.

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When it looked like a profound act was about to be perpetuated on this person - being hooked up to a feeding tube - not unlike the feeling of being sent to a nursing home against their will, Steve’s interventions and his contacts made a horrible situation tenable. And had he not intervened, she would have certainly been sent to a nursing home if she’d needed a feeding tube.  Steve achieved two things:   He retained her independence as well as made her daily life easier.

Background

Cathy’s (a fictional name) nephews contacted me after meeting with an elder-law attorney with whom I’m very friendly.  At the meeting with the attorney, where the topic was getting her on Medicaid, the attorney said you better talk to Steve first, because “I don’t know if we’re doing Medicaid for a nursing home or Medicaid for home care.  And Steve can help you figure that out.”

The way they presented it to me was that they already have home health aide services through the Visiting Nurse Service for which they’re paying approximately $20 an hour for 4 hours a day.  The VNS told them that they will now have to pay a nurse to set up her medication, but this seemed crazy to them to pay $60 a week just for a nurse to come since she only takes 2 pills.  “Why can’t the aide do this kind of stuff?”  In addition, the nurse is recommending that she go to a nursing home because she’s very confused, her short-term memory is terrible, she doesn’t seem to have any idea that she needs help; it’s just not a safe situation as her family lives too far away, etc.  They don’t think it’s safe for them to be providing services.

I met with them at the aunt’s house in Brooklyn and it struck me that she’s a very pleasant lady, and she’s perfectly fine physically; she can probably walk for miles.  She makes perfect sense when she talks, but she repeats herself.  And it’s true that she has very severe memory problems, meaning recent memory, which is very typical of people with dementia or Alzheimer’s.   Their main problem is not their long term memory, but what just happened – today or yesterday or even a few minutes ago.

As for the validity of the diagnosis, it’s not that important for me to know whether a person has Alzheimer’s or dementia.  I don’t want anyone to not see a doctor and get an evaluation, but all that evaluation does is to rule out everything else.  Which is what usually happens; they do a CAT scan, blood tests and whatever and then they say, “It’s not anything else, so it must be this.”  And they had done that already.  Thus we knew that there was a diagnosis of dementia; to me it didn’t matter if it was Alzheimer’s or dementia because the behavior was what it was, and we had to deal with it.  Calling it one thing or another didn’t change our plan.

Current Situation

There are 2 nephews – Larry and Joseph – but it was Joseph who had been primarily in contact with Cathy because he was in New Jersey and Larry was in Texas.  Joseph was worn out, and he said, “You know, we don’t want to put her in a nursing home.  We know a nursing home will kill her.  We don’t know why they’re talking about a nursing home; why can’t they just give her something less drastic?”  And I pointed out that you don’t have to use them (the Visiting Nurse Service) and I don’t think she needs a nursing home.  You’re never going to please the VNS; they’ll always insist that a nurse has to give Cathy her pills.  And they’re also way more expensive than you need them to be.   I think she can stay at home and, therefore, you can get Medicaid to pay for all her care.

In other words, you don’t need to worry about how you’re going to pay for her care, because you can supplement what Medicaid gives you.   Basically what ends up happening is that they pay for my services out of the money that they transfer as part of the Medicaid process.  This way they’ll get Medicaid for her, but the real issue was getting people to take care of her, or will she be too difficult that nobody will want to work there?  If so, then maybe we will have to find a place for her.

Cathy was anxious, but not anxious in a way that she was going to take it out on other people, which is what some people with Alzheimer’s do; it was just this repetitive, obsessive kind of “I don’t know what’s happening to me and I think I need to go to the hospital,” when in fact there was nothing out of the ordinary happening.  I told them I would visit their aunt, and see if I could find someone that is going to be compatible with her, and we’ll try it out.

We tried it out and it worked like a charm, as is typically the case.  The key is that somebody with memory loss as severe as this does not want to be alone because it’s too hard for them to think about what they’re supposed to be doing with themselves from one minute to the next.  But if somebody’s there, it’s very reassuring.  Of course the person has to be trained and be understanding and not take it personally or get frustrated that she repeats herself so much.

When the Inevitable Crisis Develops

Everything was going along fine, then Cathy falls, hits her head, and is taken to the emergency room.  She was admitted and when she was about to discharged, they noticed that she was having problems swallowing.  Now suddenly they are calling the nephews in and saying she needs a feeding tube.   But basically she hadn’t changed at all in her presentation, so I’m thinking how can this person who’s still in relatively good health at 86, who’s able to walk and talk, and doesn’t seem to have anything wrong with her, now need a feeding tube?  They say she can’t eat food at all, but there’s nothing wrong, so what is this?    To make matters worse, the doctor – who was not her primary physician (her primary care physician did not have privileges at this hospital), was quite rude about the matter.

He was just a doctor that was assigned to her who made these judgments very quickly, and he was very insensitive about how he presented it to the family.  He was impatient with them – in five minutes he expected them to absorb this. I called a colleague of mine who’s a nurse and I say, Doesn’t this seem a little strange?   And then I find out that there’s a diagnosis, it’s called Zenker’s Diverticulum and that’s the problem.  I ask my nurse friend about it and she says, “Oh, that’s fairly routine.”  I asked her who’s the best kind of person to treat this, and she says an ENT (ear, nose, and throat) doctor.  My personal ENT doctor practices in the hospital, and he had me speak to his colleague who does this kind of surgery.  She tells me it’s very routine and agrees to look at her.  She meets Cathy and says we can fix this, and she’ll be fine.  She’ll be able to go home and eat in two days.  It was minor surgery; and Cathy didn’t even remember having it.  She was fine the next day.

Because the family was so devastated by the experience with the doctor, and never wanted to go through anything like this ever again, they concluded that “it’s time for her to go to a nursing home so she can have medical care around the clock, so we just don’t have to worry about this.”  This attitude intensified when it was time for her to leave the hospital, because when she leaves the hospital, “we can’t leave her alone.”  I told them that although I understand what you’re saying, I still don’t think she needs a nursing home.

She had actually been alone at night for years because she lives in a studio, which wasn’t conducive to 24 hour care. At first, I didn’t think the home care agency was going to go for it, because they usually say there has to be a separate room or something like that for the caregiver.   And they typically wouldn’t give 2, 12-hour shifts, but I finessed it, and the aide that was doing the 12 hours, was fortunately willing to become the 24 hour person.  The agency never really bothered pursuing why it wasn’t inappropriate, and since the aide was willing to do it, what’s the problem?  The next problem was that Cathy was agitated and not sleeping at night.

I got her into a medical model day program.  We arranged for her primary care doctor to become the doctor from the Day Program. The psychiatrist at the day program adjusted her medications, and she began sleeping more at night, thus making it more appealing for the aide to keep working with her.  The nephews were skeptical if she’d really go to the program, but, it worked out and she goes every day.  Now she has much more going on in her life to the point that she thinks she’s going to work or to school.  It’s been several months since all these things happened and it’s been working.

Steve’s Role

A big part of what I do is the screening of the people and getting a sense that they’re really going to be able to tolerate being with someone like Cathy for 12 or more hours a day.  It worked out, but there were times when we had to change homecare workers, and we had to get her a new doctor because we had to get her on medication for her anxiety which didn’t’ work the first time.  I had to try different psychiatrists, and we eventually found one that put her on the right medication.  My arranging for all this was important because the family knew nothing about where to go for these things. An important service is not only referring clients to physicians but accompanying the client to doctor’s appointments when necessary.


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