D. White									7/2/05

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, suffered a hemorrhagic stroke upon
falling to the ground. He received emergency medical care and he
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.  Unfortunately, he has since
had to leave three  nursing homes to go to the nearest hospital in an
ambulance either because he was vomiting the amount of tube feed he
was receiving and he started aspirating, or he developed a fever due
to infections (e.g. urinary tract infection related to his catheter).
My relative is a diabetic and does have a stomach stress ulcer that
has resurfaced after many years.
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 also overly 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, he has frequently thrown
up a mixture of tube feed and old blood (and some bile the doctors
have said) and has had it go down into his lungs (aspiration), where
he has developed infections (mild pneumonia).
	 He is currently not able to speak because of his stroke. The
hospitals can stabilize him temporarily, but it seems that, after a
short period of time, the hospitals want him to leave to go 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 hospital
and nursing home, always with new doctors, nurses, social workers,
etc.
His health insurance, Kaiser Health, has been difficult and will not
cover acute care for my relative at facilities anywhere near his
wife?s home. They will only pay for my relative to go to a certain
nursing home on the west side of Cleveland, Ohio, very far from his
wife. She is planning to undergo some acute care training at the
Kaiser nursing home and then bring him home. His Medicare coverage is
running out.  His wife is prepared to call in hospice care but she is
doing everything she knows to do to give him a fighting chance at life
before then.
My relative was in the Navy Band in the Second World War and we are
looking into any veteran?s benefits for which he may qualify.
The many doctors that my relative has seen in the last few months have
not said much more than he "has multiple issues" and ?he will never
get much better,? or ?this is how it will always be for him.? 
Recently, the doctors have said that my relative?s condition is
?terminal.?
His primary Kaiser doctor is not aggressively involved in his fight
for life.  My relative?s wife has been a trooper and visits him daily
(sometimes three times a day) at each hospital and nursing home he has
been to. She has not always been treated so kindly and she feels that,
based on her experience, if she is not constantly 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, he will not
live much longer.  She would like to eventually take him home but she
is currently not qualified to provide the 24-hour skilled medical care
he will need.
	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 and subsequent tracheotomy and feeding tube
inserted.  It seems that he needs to go somewhere that is qualified to
care for his acute medical condition long-term, not just a few rushed
days in the hospitals. The very nature of the medical system of acute
care seems to render it ineffective in giving my relative the
long-term, closely monitored care he needs and deserves.  I realize
that I am talking in generalities, but the hospitals are too worried
about time, beds and money and the doctors are stressed and distant. 
The nursing homes seem to be ill equipped to care for my relative.
Nobody seems to want to listen to my relative?s wife, who has been
through the ringer as far as constantly watching out for his health. 
If she had not been constantly questioning the doctors and pleading
with nurses to sit him up, try not to give him shots that he has
already been given or take blood when it was already taken, wash
bedsores, and attempt to give him some physical therapy, my relative
would be in much worse condition than he is in today.
	I am aware that my relative?s situation is very serious.  My question
is, if the traditional hospital/nursing home system simply is not able
to help my relative in his delicate, medical condition, can you refer
me to any alternative medical care plans for victims of hemorrhagic
stroke?  Is their only financially affordable option to have him stay
at a nursing home far from his wife and most probably be sent to the
nearest hospital, then back to the nursing home and back again to the
hospital, all the time being treated by doctors who may be seeing him
for the first time?  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 deemed ?terminal? because the medical system is inadequate
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 them by continuing to search for alternative stroke treatments;
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 me
help my relative, please contact me. Thanks.


Sincerely, 

Darrow E. White, 
h: 781-338-9866
w: 617-497-7771 X215
dwhite@banneker.org