Greetings,
I am writing to ask for advice about a relative's recent, serious
medical condition. Three months ago a male, African-American relative
of mine, who is 79 years old and lives in Cleveland, Ohio, suffered a
hemorrhagic stroke upon falling to the ground. He received emergency
medical care and underwent a tracheotomy. He also had to have a
feeding tube inserted to receive food. After nearly two weeks, the
doctors recommended that he be transferred to a nursing home. Since
then, unfortunately, he has had to leave three different nursing homes
in an ambulance to receive emergency care at the nearest hospital. The
reason he had to leave the nursing homes was either because he began
vomiting up the amount of food he
was receiving from the tube and he started aspirating (receiving the
food in his lungs), or he developed a fever due
to infections (e.g. urinary tract infection related to his catheter).
My relative is also a diabetic, has a stomach stress ulcer that has
resurfaced after many years and has had some problems with
constipation.
The problem he has had with the nursing homes is that they do not
seem to be able to appropriately gauge the right amount of tube feed
to give him. They are zealous about increasing the volume of
his tube feed because they say that he needs more nourishment.
Consequently, because he is diabetic, has had a stroke, has a stress
ulcer and has had problems with constipation, the tube feed backs up
in his system and he has frequently thrown up a mixture of tube feed
and old blood. Some of this mixture has entered his lungs, where he
has developed infections (mild pneumonia).
He is currently not able to speak because of his stroke. The
hospitals have always been able to stabilize him temporarily, but
after a short period of time, the hospitals always want him to leave
to go back to a nursing home as soon as they get him to some level of
stability. Thus, my relative has been bouncing back and forth between
hospitals and nursing homes, some with skilled nursing care, always
facing new doctors, nurses, social workers, discharge planners, etc.
His health insurance has been difficult and will not
cover acute care for my relative at facilities near his and his
wife's home. They will only pay for my relative to go to a certain
nursing home that is very far from his wife. Consequently, she wants
to bring him home and manage caring for him there, a monumental task
because he needs 24-hour skilled care. His Medicare coverage is
running out. His wife is prepared to call in hospice care but she is
doing everything she knows to do right now to give him a fighting
chance at recovery before then. Also, my relative is a veteran of the
Second World War (played in the navy band) but his wife says that
being a veteran in his case only entitles him to a $1600 stipend. I
find this hard to believe and feel that I need to look into his
veteran benefits more closely.
The many doctors that my relative has seen in the last few months have
not said much more than he "has multiple issues" and that "he will
never get much better," or "this is how it will always be for him."
Recently, the doctors have come out and said that my relative's
condition is "terminal." His primary doctor is not aggressively
involved in his fight for life. His wife has been a fighter and has
visited him daily (sometimes three times a day!) at each hospital and
nursing home he has visited. She has not always been treated so kindly
and she feels that, based on her experience, she must constantly be
vigilant with the doctors, who are always short on time, and the
nurses, some of whom have been very neglectful of my relative's
medical needs, or he will die because of neglect or oversight, and she
has been proven right.
Do you have any advice on what is the best long-term care
plan for my relative, who is diabetic, has high blood pressure, has had a
hemorrhagic stroke, subsequent tracheotomy and feeding tube
inserted? It seems that he needs to go to a facility qualified to
care for his acute medical condition long-term, not for just a few
rushed days, as in the hospital. He needs a facility that is willing
to patiently and gradually increase the volume of his tube feed and
closely monitor him.
The very nature of the medical system of acute care seems to render it
ineffective in giving my relative the long-term care he needs
and deserves. I realize that I am talking in generalities, but,
frankly, the hospitals appear to be too worried about time, bed
space and insurance money and the doctors too stressed and distant to
give my relative the patient, carefully-thought-out, long-term skilled
care he needs. The doctors are right, he has a combination of issues
he is dealing with and he does not fit into the traditional,
?progress-by-this -date? approach to stroke recovery. The nursing
homes seem to be ill equipped to care for my relative since most of
his problems center around his tube feed. He does need nourishment,
but because of his multiple issues (diabetes, stomach ulcer,
constipation), he needs flexible, skilled, and vigilant care, not the
?well the doctor said he needs nourishment so we have to increase his
tube feed to this volume? type of care.
Nobody seems to want to listen to his wife, who has been constantly
watching out for his health. She has been constantly questioning the
doctors and pleading with nurses to sit him up, make sure that they do
not give him shots that he has already received or take blood when it
was already been taken, wash bedsores, and attempt to give him some
physical therapy. I am convinced that, had it not been for his wife?s
heroic efforts, my relative would be in a much worse condition than he
is in today, possibly deceased.
I am aware that my relative's situation is very serious. However, I
have a few other questions. First of all, are there any qualified,
alternative, acute stroke skilled care facilities in the medical
community that can offer my relative vigilant, medical care
tantamount to that which he has successfully received at hospitals and
are also willing to treat him for as long as he needs, or at least 4-5
months, either at their facility or at his home, in hopes of some
eventual recovery from his stroke? Is there some way of defraying the
astronomical cost of medical care that will face my relative?s wife?
Also, are there any advocacy groups willing to get their hands dirty,
get in there and help my relative's wife fight for her husband?s life?
Are the only financially affordable options for my relatives to have
him stay at a nursing home far from his wife and inevitably be sent to
the nearest hospital again or have him go home and have his wife
scramble to hire qualified workers and friends to help care for him,
while most of the burden really falls on her as she learns acute care
?on the job?? I think that my relative and his wife deserve better
treatment than this. If he is "terminal" because his organs are
giving out from old age, that I can understand. But if my relative
is "terminal" because the medical system is inadequate, has gaps and
ill-equipped to care for his long-term medical needs, or too apathetic
to give him the long term care he needs, I would like to help by
continuing to search for alternative stroke care, not only to help
him, but ultimately, to improve the medical system for future stroke
victims.
If you have any advice or references that will ultimately help my
relative, your advice will be greatly appreciated. Thanks. |
