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Medical Forum / Diseases and Disorders / Cancer / March 2006

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Update: it's hospice now

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John Richards - 24 Feb 2006 06:39 GMT
Recapping, my wife originally was diagnosed with BC
three years ago. It was treated, and we were told there
was an 80% chance of no recurrence within five years.
Last December she began experiencing visceral pain.
CT scans and bone scans confirmed there were massive
metastases to the liver and bones.

She was scheduled for her third chemo session today,
preceded by a consultation with her oncologist. The
oncologist had the latest blood test results. Sad to say,
the news was very disheartening. Her bile ducts have
closed up, and the cancer was not responding to the
chemotherapy (Taxol). The oncologist had no choice but
to stop the chemo program. There is no other suitable
treatment that has any promise of effectiveness for her
advanced cancer condition.

I had begun to see several signs of her condition
deteriorating over the past two weeks. Her fatigue had
increased, and her ability to walk a few steps (even with
assistance) became less and less.

We have been referred to a hospice program which will
make her as comfortable as possible in her final days.
The oncologist indicated that my wife has less than
four months left, and (in my opinion) that was an
optimistic estimate.

Sadly,

John Richards
Alayne - 24 Feb 2006 07:48 GMT
> Recapping, my wife originally was diagnosed with BC
> three years ago. It was treated, and we were told there
[quoted text clipped - 26 lines]
>
> John Richards

I am so sorry to learn this John and my heart goes out to you both.  I lost
my husband to a GBM two + years ago and know some of the journey you are
travelling.

Hospice people are wonderful souls and I am sure that they will do all that
is possible to make the time remaining as comfortable as possible.

Take care of yourself too now, you'll have an inner strength but also know
that we are here for you.

Warm Hugs

Alayne
John Richards - 24 Feb 2006 16:49 GMT
Thanks to all of you for the kind responses -
too many to respond to individually. I will continue
to lurk here, and chime in from time to time.

Signature

John Richards

Tim Jackson - 24 Feb 2006 09:25 GMT
> Recapping, my wife originally was diagnosed with BC
> three years ago. It was treated, and we were told there
[quoted text clipped - 26 lines]
>
> John Richards

Sorry to hear that your wife is reaching the end stages John.

I hope that the hospice can make her last days comfortable.  They tend
to be very good at this, they are the experts after all.

It does sound as if your oncologist is giving an upper limit rather than
most probably life expectancy.  When my wife reached this sort of
condition she lived a matter of weeks rather than months.

Tim Jackson
lisa - 24 Feb 2006 12:29 GMT
My thoughts are with you and your wife as she nears the end of this
journey.

A couple of family members have passed their final days at hospices.
They are wonderful at making people as comfortable as possible.   It's
beneficial not only for the patient but for the caregiver as well.

Take care.
...lisa
chris@mcgill.ca - 24 Feb 2006 12:30 GMT
>Recapping, my wife originally was diagnosed with BC

>We have been referred to a hospice program which will
>make her as comfortable as possible in her final days.
[quoted text clipped - 5 lines]
>
>John Richards

I'm so sorry, John.  

Marilyn
Eva - 24 Feb 2006 13:03 GMT
> ....Her bile ducts have
> closed up, and the cancer was not responding to the
[quoted text clipped - 4 lines]
> ....We have been referred to a hospice program which will
> make her as comfortable as possible in her final days.
------------------
I'm sorry you got such bad news, but as others have said, hospice programs
specialize in alleviating pain and suffering.  I've only heard good things
from families of people who've died at a hospice.  In fact, my neighbor died
of lung cancer a few months ago and her family asked that all donations be
sent to Calvary Hospice as they were so thankful for the care she received
there.
Best wishes, Eva
Lorelei - 25 Feb 2006 16:05 GMT
>> ....Her bile ducts have
>> closed up, and the cancer was not responding to the
[quoted text clipped - 4 lines]
>> ....We have been referred to a hospice program which will
>> make her as comfortable as possible in her final days.

I am so sorry to hear your news.
Our brush with hospice was brief but it would never have worked with the Rn
and the SW they sent here. I am sure they had other teams that we could have
tried.
I hope your experience is like I've heard others describe as being so
comforting.
Lori
J - 25 Feb 2006 17:39 GMT
> Our brush with hospice was brief but it would never have worked with the Rn
> and the SW they sent here. I am sure they had other teams that we could have
> tried.

Curt's still carpet laying, when he feels well enough.
Martin, another prostate cancer patient, was still posting that he was walking
and feeling well, ~one month before he died. His diary's gone now, but as I
recall, he wanted no pain meds.
If required, I'm sure you'll work it out, with hospice.

J
LT - 24 Feb 2006 13:19 GMT
> Recapping, my wife originally was diagnosed with BC
> three years ago. It was treated, and we were told there
[quoted text clipped - 27 lines]
>
> John Richards

I am so very sorry to hear this. But she was at least fortunate to have such
a caring husband - I have been touched by the care and concern shown in your
posts.

This recent article addresses the concern of doctors in trying to identify,
very early on, breast cancers that have metastasized - in this case, in the
brain. Here they suggest getting a brain scan as soon as one is diagnosed
with cancer.

http://msnbc.msn.com/id/11474624/

Perhaps they will progress to the stage where routine checks are made of the
areas where breast cancers are known to spread.

Lois
allan - 24 Feb 2006 14:25 GMT
Hang in there, John - you and yours are in my thoughts today.

allan
Figgertoes - 24 Feb 2006 14:31 GMT
"John Richards" <jr70@blackhole.invalid> wrote in news:%SxLf.16097
$NS6.10449@newssvr30.news.prodigy.com:
We have been referred to a hospice program which will
> make her as comfortable as possible in her final days.
> The oncologist indicated that my wife has less than
[quoted text clipped - 4 lines]
>
> John Richards

John,

I remember the day we received that news.  We still had good days following
that & I hope you & your wife do too.  They nay use different pain meds
than she used before.  These & the rest of the care package may add quality  
to her days.  I'm sure you will treasure te time you have left with her.  

Be sure to take care of you, too.  You may need a few of those breaks we
talked about earlier.  Hospice can often make that happen.

Hugs to both of you,
Fig
Pat from Apple Valley, CA - 24 Feb 2006 19:42 GMT
> Recapping, my wife originally was diagnosed with BC
> three years ago. It was treated, and we were told there
[quoted text clipped - 26 lines]
>
> John Richards

John,
    I am so sorry to hear that your Wife is slipping away. Hope she can be
comfortable in her last days.
    I, too am getting close to the last stages. MY chemo stopped working
around May of last year. I have had 5 different types, (I am er-neg
Pr-neg Hernu Slightly Pos.)but all have quit..and the numbers have been
steadily rising to now in the 6000's. Last week was pretty good I felt
like getting out. I always feel better out of the house, but this week
all I want to do is lay around and watch TV, and what is there to watch
Olympics?? and the USA sucks...
    I feel so sorry for my Husband, he is always asking if I want this to
eat or that and I don't want to eat anything. I get cranky and feel
sorry about it after.  I want to talk about what to do at the end and he
doesn't want to talk about it. I need to get my wishes down on paper,
but can't bring myself to doing it. My kids think I'll live forever..
    I need to start thinking about hospice, but I don't think I want to die
here at home. My DH after all will have to continue to live here.    I
am not in a lot of pain, so maybe the end is not as close as I think,
but I would just as soon die of a heart attach at least it would be
quick..Can you have hospice care in a hospital????? or nursing home????
I really don't know what it is exactly.
    I'm sorry, I know this is about you and your wife, but this just brings
me closer to where you are...and I feel your pain. I hope you have the
best days you can have...Pat from Apple Valley, CA
A. P. Thorsen - 24 Feb 2006 20:27 GMT
>     I, too am getting close to the last stages.
<deletions>
>     I feel so sorry for my Husband,
<deletions>
>     I need to start thinking about hospice, but I don't think I want to
> die here at home. My DH after all will have to continue to live here.

You know your family best, but I can say that that is not necessarily a
problem for everyone.  A few years back, my husband died at home of
esophageal cancer.  I don't feel bad about the place because of that,
and in fact am happy (relatively speaking, of course!) that he was at
home rather than in a more impersonal setting.  So, I feel at peace
about the whole thing, on balance.  I still live there.

> I am not in a lot of pain, so maybe the end is not as close as I think,
> but I would just as soon die of a heart attach at least it would be
> quick..Can you have hospice care in a hospital????? or nursing home????
> I really don't know what it is exactly.

Many places have some kind of residential hospice (my mother died in
this type of setting, where everyone was very kind to her).  Or, you in
many places you can go to a nursing home & have visiting hospice come to
you (my mother-in-law had this kind of care, which worked well for her
situation).

It sounds like you may not really feel ready to settle some of these
kinds of issues, but when you do, the type of professional I've found
most helpful is a medical social worker who knows about local resources.
 I've found these people as part of hospital staff, and/or accessible
via insurance company case managers or the like.

Take care, Pat, and I hope you're able to find solutions that will help
you deal with some of these complicated and difficult issues!

Ann T.
Remove 'dontsendspam' from address to reply by email
figgertoes - 24 Feb 2006 20:28 GMT
>     I need to start thinking about hospice, but I don't think I want to die
> here at home. My DH after all will have to continue to live here.    I
> am not in a lot of pain, so maybe the end is not as close as I think,
> but I would just as soon die of a heart attach at least it would be
> quick..Can you have hospice care in a hospital????? or nursing home????
> I really don't know what it is exactly.

Pat,

It is very thoughtful of you to think things through so your DH won't
ever need to guess your wishes.

Some hospices have in-patient care, but this is not so common anymore
in Denver area, where I live.  It depends on your insurance coverage.
Here, hospice care can be delivered in nursing homes, but then you've
got 2 different coverages involved.  Many plans limit nursing home days
to 100 or so & don't cover the room/board portion.

I would check with my insurance company first to see what is covered
under hospice & what your coverage is for nursing home care.  You may
carry a separate policy for nursing home, or similar, care.

Then call the hospices in your area covered by your insurance.  If the
nursing home option appears too expensive, ask what they might suggest
instead.  Many people feel as you do, so they've probably got some
options.   In-patient hospice care would be my first choice in this
situation.

You can always come back here.    Others may have some ideas.

You may feel more at peace once you've explored your options & gotten
your ?s answered.

Meanwhile, maybe friends/family could take you out on short excursions
- to lunch, to a movie, anything to escape the 4 walls & give you a
change of scenery without tireing you too much.  Keep it easy; keep it
casual.  Enjoy your time.

If housekeeping is an issue, maybe you could get a cleaning service in
occasionally.

Best,
Fig
John Richards - 25 Feb 2006 00:01 GMT
> I, too am getting close to the last stages. MY chemo stopped working
> around May of last year. I have had 5 different types, (I am er-neg
[quoted text clipped - 3 lines]
> all I want to do is lay around and watch TV, and what is there to watch
> Olympics?? and the USA sucks...

I'm surprised that after stopping chemo nine months ago you still
feel well enough to participate in this newsgroup.
My wife pretty much lost those abilities and interests after
only two months past diagnosis, apparently because her cancer
is growing much faster than yours.

> I feel so sorry for my Husband, he is always asking if I want this to
> eat or that and I don't want to eat anything. I get cranky and feel
[quoted text clipped - 3 lines]
> I need to start thinking about hospice, but I don't think I want to die
> here at home. My DH after all will have to continue to live here.

I can think of nothing more loving than to have my wife die
comfortably in our home, surrounded by me and the kids.

> am not in a lot of pain, so maybe the end is not as close as I think,
> but I would just as soon die of a heart attach at least it would be
> quick..Can you have hospice care in a hospital????? or nursing home????
> I really don't know what it is exactly.

Your insurance determines the type of hospice. We have Kaiser,
which has home hospice.

Signature

John Richards

Pat from Apple Valley, CA - 25 Feb 2006 19:09 GMT
>> I, too am getting close to the last stages. MY chemo stopped working
>> around May of last year. I have had 5 different types, (I am er-neg
[quoted text clipped - 29 lines]
> Your insurance determines the type of hospice. We have Kaiser,
> which has home hospice.

I didn't quit chemo 9 months ago, it Pretty much quit working that long
ago. I guess it might have kept it at bay but the numbers still just
went up. I had 4 types of chemo in the last 9 months..Taxotere worked
the longest got the numbers from 1800 to 700 then the 4 types I've had
since then would work maybe once then start up again. the last 2 didn't
slow the numbers at all...
    I also have Kaiser ins. And My Dh has looked up the book on what my
policy covers..So we will read it to see what is available..
    I have been working on getting my wishes down on paper. I find I really
don't care what is done with my things, or who gets what, tho I don't
want fights among the kids either. I really don't have alot to divy up..
    MY DH and Kids do know I don't want a funeral or memorial, except for
just what the family wants to do..
                Pat
John Richards - 28 Feb 2006 08:12 GMT
> MY DH and Kids do know I don't want a funeral or memorial, except for
> just what the family wants to do..
> Pat

My wife has similar wishes since she wants to be cremated.
As a minimum, is some sort of memorial service expected,
and if so, who arranges it?
I don't know diddly about these things.

Signature

John Richards

alex - 28 Feb 2006 09:26 GMT
Any funeral director, the hospice can recommendable a place. Shop around.

>> MY DH and Kids do know I don't want a funeral or memorial, except for
>> just what the family wants to do..
[quoted text clipped - 4 lines]
> and if so, who arranges it?
> I don't know diddly about these things.
Figgertoes - 28 Feb 2006 14:20 GMT
>> MY DH and Kids do know I don't want a funeral or memorial, except for
>> just what the family wants to do..
[quoted text clipped - 4 lines]
> and if so, who arranges it?
> I don't know diddly about these things.

Our hospice provided 2 lists. Each had prices, contacts & some were checked
as having good feedback from former hospice families. One was full-service
funeral homes, the other cremation only.  If simple cremation is all that's
desired, I'd recommend the cremation only places as they are much less
expensive.  I used one of these.  They do not embalm, at least not here.  
'Casket' can be papeboard while funeral homes required something more
elaborate (???).  No black limo, but they picked up my husband's body at
hospice (wherever, would do home too) & were great people.  I stayed with
him the whole time, but apparently many opt to say their goodbyes & leave
before the body is removed.

They suggested that any who wanted to could write letters, notes, anything
paper, which they would cremate with the body.  We did & it was very
comforting.

hth,
Fig
A. P. Thorsen - 28 Feb 2006 15:25 GMT
>> MY DH and Kids do know I don't want a funeral or memorial, except for
>> just what the family wants to do..
[quoted text clipped - 4 lines]
> and if so, who arranges it?
> I don't know diddly about these things.

Whether there's a service, and what kind, is totally up to the family
(which can, of course, be based on the deceased's wishes).

If you use a funeral home, they'll do a lot for you (but charge you for
doing it).   For a simple memorial service, you can make your own
arrangements (reserve a suitable location, depending on your wishes,
etc.).  Or, you could have some kind of celebration of the person's life
in your own home (space permitting) or a park/beach/etc.  Or you could
do no formal recognition.

In my opinion, the question of services is more about what the survivors
need in order to feel closure, than anything else.

My husband was an atheist, so wanted a secular memorial . . . but wanted
me to check with his mother to ensure that it would be OK for her not to
have a minister as part of it.  He (husband) wanted various friends to
speak at the memorial, but didn't specify who -- except that he said I
should speak.  So, we did this at a funeral home (thought his mother
would need some of the formal trappings), had half a dozen friends from
different areas of his life speak (including me).  After the service, he
was cremated.

The memorial service ended up being a good & positive experience.
Holding it helped me to close that chapter and go on.

Ann T.
Remove 'dontsendspam' from address to reply by email
Alayne - 28 Feb 2006 15:58 GMT
>> MY DH and Kids do know I don't want a funeral or memorial, except for
>> just what the family wants to do..
[quoted text clipped - 4 lines]
> and if so, who arranges it?
> I don't know diddly about these things.

I picked up a little leaflet at the hospice explaining what legalities were
required after losing someone; death certificate/registering etc. which I
found very useful.  As far as the crematorium went, it was basically as I
(or rather my late husband) instructed.  He was an aethist so the funeral
directors put me in touch with a Humanist Minster.  I based the service
entirely on what I am sure Tony would have wanted rather than family and
tried to keep everything in the vein of life to which he led.

It's tough John but think of it as part of a process, a celebration of the
life rather than the passing.

Warm Hugs

Alayne
Pat from Apple Valley, CA - 28 Feb 2006 20:24 GMT
>> MY DH and Kids do know I don't want a funeral or memorial, except for
>> just what the family wants to do..
[quoted text clipped - 4 lines]
> and if so, who arranges it?
> I don't know diddly about these things.

    We have not lived in this location very long so I don't feel the need
for a funeral or memorial as no one would travel to come. I would like
my kids and Husband to say something over my scattering, if they wish
and make it a very personal closing..I know you need lots of Death
certificates for different functions.
    I believe the survivor arranges as much as he can.

>They suggested that any who wanted to could write letters, notes,
>anything
>paper, which they would cremate with the body.  We did & it was very
>comforting.

This seems nice....I like this suggestion. Would end things nicely...
Pat From Apple Valley, CA
bj - 28 Feb 2006 21:39 GMT
> I know you need lots of Death certificates for different functions.

I know when my father died (not from cancer) we got, I think, 15
certificates -- and I think Mom had to ask for more later. *everybody* seems
to want one (various gov't entities; insurance companies; financial
institutions; etc. & I didn't handle it so I don't know what all). It may be
cheaper (you could ask) to get "more than you think you could possibly need"
right off; it's certainly easier than going back later -- the funeral home
got the initial batch for her.
bj
matt weber - 28 Feb 2006 23:54 GMT
>> I know you need lots of Death certificates for different functions.
>
[quoted text clipped - 6 lines]
>got the initial batch for her.
>bj

Actually I found testimentary letters to be in high demand (thats a
document issued by the probate identifying you as the estate's
personal representative) document. Generally if you have one of those,
they are included to believe somebody is really dead.
Figgertoes - 01 Mar 2006 05:45 GMT
>>> I know you need lots of Death certificates for different functions.
>>
[quoted text clipped - 11 lines]
> personal representative) document. Generally if you have one of those,
> they are included to believe somebody is really dead.

It depends on many factors, but not all estates need to be probated.  
Assets, even large ones, can pass to heirs outside of the will.  Socks
simply made me beneficiary on his brokerage accounts, insurance policies
& the like.  Most 401Ks have that option. Some accounts even allow %
distribution to multiple beneficiaries.  Socks (finally) put me on his
bank acount, a huge help,  Before he did, the  bank wouldn't give me any
info about balances & he had some complex activities - money coming
in/going out automatically.  I needed to know so I could make sure
balances stayed positive.  A monthly statement wasn't enough. He wasn't
able to handle toward the end.

When ordering those death certificates, remember you might need one for
any contract you are breaking due to death - such as cell phone.  Some
took copies. Even one relatively small insurance policy paid with only a
copy.  Ditto car title transfer.  I have most left over but will keep
some at home & some in safe deposit box. You just never know who might
require one.  Safe deposit box: make sure surviving spouse is on the
record.  

You might want to check your credit card accounts to see that both
spouses are  owners, not just authorized users, for the ones you want to
keep.  Death notification goes to credit bureaus which are monitored by
credit card issuers. Socks  had a Discover card that was shut down with
no notification to me.  I was authorized user, but it was not a joint
account.  Thought about telling them to go get the money from him - then
thought again & paid it off :-)

I went through all the mail for a couple of months after diagnosis, just
to see if something needed to be changed so I would have access to it
without a lot of hassle.

Passwords - be sure you know them for ATM access, computers (many have
multiple). If you have DSL & have a power outage, you may need to enter a
code to get reconnected.  Do you know how to find it?  Do you know who
provides household services - plumber, lawn mowing company, painters,
roofers, carpet cleaners, pet sitters?  Do you have maintenance contracts
for anything - HVAC?  Anything under warranty?

Pay bills online?  You'll need login/passwords to access accounts.  
Receive paperless bills?  You need to know the drill.  How about ISP
providers, domain name registrations?  Web pages?  Someone needs to know
how all of this works.

Things to cancel (no need to continue paying for): car insurance for
deceased, coverage such as AAA, health club membership, dues, maybe
tithing, cell phone service, subscriptions to unwanted publications,
book/music clubs, professional organization membership & other
memberships (golf club, country club, travel club).

I hope this doesn't overwhelm.  I went through all of this with minimal
problems except for computer passwords.  There was plenty I didn't know
about his computers - one dual boot with Linux. It's so much easier to
maintain the status quo than to have to call everyone at once to get
changes made.

Fig
bj - 01 Mar 2006 23:40 GMT
> When ordering those death certificates, remember you might need one for
> any contract you are breaking due to death - such as cell phone.  Some
[quoted text clipped - 3 lines]
> require one.  Safe deposit box: make sure surviving spouse is on the
> record.

It doesn't have to be a spouse, either.
I'm listed on a couple of things with my mother, & she has access to my box
too.

And you can check local laws on access -- in some places (as long as you
have the box key!) a survivor relative can access a box *just* for the
purpose of finding/retrieving a will. (I'm a little hazy on the details)

Some places only need to see an original death certificate -- they'll send
it back; a copy won't do, but they don't feel the need to keep it  -- worth
asking them, anyway, if you think you're going to run short.
bj
alex - 25 Feb 2006 00:41 GMT
> I feel so sorry for my Husband, he is always asking if I want this to eat
> or that and I don't want to eat anything. I get cranky and feel sorry
[quoted text clipped - 10 lines]
> closer to where you are...and I feel your pain. I hope you have the best
> days you can have...Pat from Apple Valley, CA

John sorry to hear about your wife. Pat have you spoken to your oncologist
or staff, they will know what is available. You could still have home
hospice with the plan when your time is coming up they move you to another
place.  Here in my home state residential hospice is in short supply. Alex
Alayne - 25 Feb 2006 10:03 GMT
>> Recapping, my wife originally was diagnosed with BC
>> three years ago. It was treated, and we were told there
[quoted text clipped - 51 lines]
> closer to where you are...and I feel your pain. I hope you have the best
> days you can have...Pat from Apple Valley, CA

Hello Pat,

I'm truly sorry to learn of your situation and send you a Warm Hug.  I lost
my hubby to a GBM a couple of years ago and found Hospice a wonderful place.
They took the extra care of Tony and also encompassed myself and my two
daughters.

It's worth finding out about.  I know it's tough and not everyone can do it,
but it can be very helpful to talk through or at least write down your
wishes and tell your family where to find them.

Warm Hugs to you and your family

Alayne
J - 27 Feb 2006 09:39 GMT
>         I, too am getting close to the last stages. MY chemo stopped working
> around May of last year. I have had 5 different types, (I am er-neg
[quoted text clipped - 14 lines]
> quick..Can you have hospice care in a hospital????? or nursing home????
> I really don't know what it is exactly.

Hello Pat,
re: wishes/advanced care directives, Fig or I have a source for forms that might be
helpful in many ways. It's only $5 (there's also a video), but my thinking was that
receiving the form (by mail) might incline your husband to want to enter into
discussions, although having read your posts for 4 years, and feeling denial,
grief, helplessness myself, I can't imagine what your DH must be feeling at this
time. Perhaps he needs easing into it or if he can't cope with it, if you have
adult children, one or the other might help with that.

There's a website here http://www.brainhospice.com/HospiceQuestions.html that has
lists of pros and cons about hospice or at home. Might assist you and/or DH, while
considering the choices.

Futher down, you said you really don't have a lot to divy up. I was disappointed
that someone had cleared out everything of my mother's, leaving only clothing. I
saved one of her favourite sweaters (when she was cold). It was pink and ulgy
(grin), but it had her scent and was a source of comfort, from time to time, over
the next few years. Just knowing it was in the closet was a comfort and memory of
Mom.

Dad had designated some items for each of us, ahead of time, and sent them to us a
year or so before.
And when Dad passed away, I kept a war book which contained his pencilled in
comments about where he (or other family) participated. Other similar books had
disappeared - they were memories of my childhood, that I would liked to keep.
My point being that while you may not feel there's much, your kids might value
things that you see as everyday things and not of much value, but please do not
discount the sentimental value of your possessions.  Some clear everything out
without thought to that. It's my opinion, that items should be kept, at least for a
few weeks. It's hard to make decisions while grieving, but I hope you'll give them
a chance to save what's dear to each of them.

J - hoping your time is still a long time away yet.
Pat from Apple Valley, CA - 27 Feb 2006 19:05 GMT
>>        I, too am getting close to the last stages. MY chemo stopped working
>>around May of last year. I have had 5 different types, (I am er-neg
[quoted text clipped - 48 lines]
>
> J - hoping your time is still a long time away yet.

Thanks,
    I will look at the hospice info. I do have a will of sorts written
out, about who should get what, however my DH said he was to be the only
one to get a copy. He doesn't want the kids coming in and cleaning out
my stuff without regard to his wishes. Not that they would do that, in
my opinion.
    I also have a DNR written out, tho not witnessed. I believe he will
follow my wishes in that regard.
    I have been here since 2000, I believe, so have grown to know many of
you and appreciate the support offered by each ..
    Thanks for the info... and hope so, too...Pat from Apple Valley
John Richards - 28 Feb 2006 08:25 GMT
> There's a website here http://www.brainhospice.com/HospiceQuestions.html that has
> lists of pros and cons about hospice or at home. Might assist you and/or DH, while
> considering the choices.

I'm hearing that Kaiser's hospice program will not start IVs for basic necessities
such as saline solution or sucrose solution. Anyone else heard this?
Seems cruel to let a patient who can't swallow die of hydration.

Signature

John Richards

alex - 28 Feb 2006 09:30 GMT
This link is geared towards Brain tumor patients, and not all of the
material is correct for general hospice patients. Hospices feel it is cruel
to start fluids since the body can't handle them and often the patients of a
drowning sensation. I don't have time to complete the whole answer. Ask for
a hospice consult, they will explain the process to you and what their
policies are. The often do IVs but only not to distress the family. IV fluid
is not enough to sustain life.
Signature


>> There's a website here http://www.brainhospice.com/HospiceQuestions.html 
>> that has
[quoted text clipped - 6 lines]
> such as saline solution or sucrose solution. Anyone else heard this?
> Seems cruel to let a patient who can't swallow die of hydration.
J - 02 Mar 2006 10:52 GMT
> I'm hearing that Kaiser's hospice program will not start IVs for basic necessities
> such as saline solution or sucrose solution. Anyone else heard this?
> Seems cruel to let a patient who can't swallow die of hydration.

Hello John,
To reassure you (an anyone else reading), that comfort can be provided.
They did stop my Dad's IV. A doctor explained to us why.
A nurse showed us how to hydrate Dad's eyes and mouth.

A list somewhere mentions:
spoon a few tiny ice chips into the patient’s mouth
Semifrozen fruit juice - (We've also talked, on newsgroup, about popsicles - and Socks
liked his ice cream)
Frequent sips of cold water or water sprays
Brush the person’s teeth, for a fresh mouth feeling
The above would be if the patient is semi-alert and able to hold the head up. (and i
suppose spit out from brushing, unless just using water). We did not do that for Dad.

Dad wasn't alert, at that time ( the last 5 days or so of his life), so I was using a
wet cloth to drip water in his mouth and/or on his tongue.
The nurse supplied a dropper for that and explained not to give too much to choke him. I
could tell he was thirsty because he literally lapped his tongue for more, but we had to
be careful.
We swabbed the inside of his mouth with water-soaked cotton swabs
We applied lip salve
We dabbed the mouth with glycerin swabs to keep it moist
And as I mentioned earlier, we were supplied drops for his eyes.
A patient can be kept comfortable.
I'm sure that hospice will help you along with that because situations vary.
Dad did not suffer, he passed peacefully and he wasn't on pain medications - his
situation did not call for them.

Let us know how you're doing, or other questions, I'll see you on alt.support.cancer.
J
John Richards - 04 Mar 2006 02:13 GMT
>> I'm hearing that Kaiser's hospice program will not start IVs for basic necessities
>> such as saline solution or sucrose solution. Anyone else heard this?
[quoted text clipped - 29 lines]
>
> Let us know how you're doing, or other questions, I'll see you on alt.support.cancer.

The start of my wife's home hospice was delayed, but finally began yesterday morning,
after another five-day hospital stay for acute hepatic encephalophy. The latter crisis
was brought on by her suddenly being unable to swallow anything, including her
Lactulose medicine.

We are doing most of what you mentioned above, except for eye drops.
Wasn't told about them, so I'll ask the hospice nurse. My wife does not seem
thirsty or hungry although she'll take an occasional chip of ice. In any case,
she can't swallow, so even a few drops of water can elicit a coughing/choking reaction.
Did you have any problem with a whitish overgrowth on the upper surface of the
tongue?
Incidentally, we are now administering the Lactulose via rectal enema,
every 6 hours. Messy but effective. Hospice approved it as a palliative measure.

Signature

John Richards

Tim Jackson - 04 Mar 2006 08:31 GMT
>  Did you have any problem with a whitish
> overgrowth on the upper surface of the tongue?

Sounds like oral thrush.  Happens with chemo sometimes, and anywhere
where the immune system is compromised.

Tim
Emily - 04 Mar 2006 21:15 GMT
jr70@blackhole.invalid said...
> Did you have any problem with a whitish overgrowth on the upper surface of the
> tongue?

Oral thrush?
J - 05 Mar 2006 10:11 GMT
> jr70@blackhole.invalid said...
> > Did you have any problem with a whitish overgrowth on the upper surface of the
> > tongue?
> >
> Oral thrush?

Just so you know, Em, one person stopped the crossposting replies, on this thread.
Alan has since posted a new thread and is no longer cross-posting.
I've no idea why.
Just letting you (and this newsgroup) know.
J
 
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