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,
Steves 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 shed needed
a feeding tube. Steve achieved two things: He retained her independence as
well as made her daily life easier.
Cathys (a fictional name) nephews contacted me after
meeting with an elder-law attorney with whom Im 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 dont know if were doing Medicaid
for a nursing home or Medicaid for home care. And Steve can help you figure that
The way they presented it to me was that they already have home
health aide services through the Visiting Nurse Service for which theyre 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 cant the
aide do this kind of stuff? In addition, the nurse is recommending that she go
to a nursing home because shes very confused, her short-term memory is terrible, she
doesnt seem to have any idea that she needs help; its just not a safe
situation as her family lives too far away, etc. They dont think its
safe for them to be providing services.
I met with them at the aunts house in Brooklyn and it
struck me that shes a very pleasant lady, and shes perfectly fine physically;
she can probably walk for miles. She makes perfect sense when she talks, but she
repeats herself. And its true that she has very severe memory problems,
meaning recent memory, which is very typical of people with dementia or Alzheimers.
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, its not that
important for me to know whether a person has Alzheimers or dementia. I
dont 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, Its 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 didnt matter if it was Alzheimers or
dementia because the behavior was what it was, and we had to deal with it. Calling
it one thing or another didnt change our plan.
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 dont want
to put her in a nursing home. We know a nursing home will kill her. We
dont know why theyre talking about a nursing home; why cant they just
give her something less drastic? And I pointed out that you dont have to
use them (the Visiting Nurse Service) and I dont think she needs a nursing home.
Youre never going to please the VNS; theyll always insist that a nurse
has to give Cathy her pills. And theyre 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 dont need to worry about how
youre 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 theyll 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 Alzheimers do; it was
just this repetitive, obsessive kind of I dont know whats 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 well 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 its too hard for them to think about what theyre supposed to
be doing with themselves from one minute to the next. But if somebodys there,
its 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
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 hadnt changed at all in her presentation, so
Im thinking how can this person whos still in relatively good health at 86,
whos able to walk and talk, and doesnt seem to have anything wrong with her,
now need a feeding tube? They say she
cant eat food at all, but theres 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 whos a
nurse and I say, Doesnt this seem a little strange?
And then I find out that theres a diagnosis, its called
Zenkers Diverticulum and thats the problem.
I ask my nurse friend about it and she says, Oh, thats fairly
routine. I asked her whos 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 its very routine and agrees to
look at her. She meets Cathy and says we can
fix this, and shell be fine. Shell
be able to go home and eat in two days. It was
minor surgery; and Cathy didnt 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
its time for her to go to a nursing home so she can have medical care around
the clock, so we just dont 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 cant leave her
alone. I told them that although I
understand what youre saying, I still dont think she needs a nursing home.
She had actually been alone at night for years because she lives
in a studio, which wasnt conducive to 24 hour care. At first, I didnt 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 wouldnt 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 wasnt inappropriate, and since the aide was willing to do it,
whats 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 shed 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 shes going to work or to school. Its been several months since all these
things happened and its been working.
A big part of what I
do is the screening of the people and getting a sense that theyre 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 didnt
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 doctors
appointments when necessary.