Re: confused.....

Justin Scherle wrote:

> I dont know if anyone here can or is willing to help me out but i
> desperately need information. My mother is literally dying in the hospital
> from a cancer that was diagnosed in November 2004. She had colon cancer
> which spread to her bowels and she had the majority of her intestines
> removed in mid February. Within a week we were advised that she would have
> 8 months left to live without treatment and no positive treatment plan was
> suggested. Soon after learning this we were also advised that the cancer
> had now spread to her liver (which is almost completely infested with it)her
> bladder and her kidneys. The week before last they informed us it was now
> in her brain. My mom is no longer eating anything at all and has been
> strictly on water and a intraveinus feed in her chest and another in her
> hand for gravol injections. She has been regularly recieving morphine shots
> approx. every two hours, except at night - when she gets them every three
> hours. It seems the nurses that are on shift each have different ideas or
> "facts" that they feed us and it is very confusing and frustrating to try to
> understand what it is we should be most concerned or on top of, as far as my
> moms medications go. She had been getting a lactose pill of some sort up
> until about 4 or 5 days ago when it just was no longer brought in any
> longer. This morning a new nurse came in and said that it was important to
> make sure her bowels were kept moving and that she MUST have this pill.
> What we dont understand is, my mom is not eating anything - therefore there
> is not going to be anything for her bowels to remove - other than water.
> She has a catheter now because it made it more comfortable for her and gave
> her a chance to get better rest during the night. She has had a callosphemy
> bag since her surgery in February since she no longer has intestines. I
> would really just like to know what should be going on and honestly what i
> can expect. As it is, i honestly feel my mom wont make it two weeks. We
> only got the prognosis of eight months less than 3 months ago and it has
> only been the last two weeks that she really has deteriorated with her sight
> going and having no mobility in her left arm. Prior to that she was still
> eating and communicating with us. How can something change so drastically
> in a matter of days?

Hello Justin,
I'm so sorry to read about your mother.
Prognosticating is difficult until the very last few weeks, when the cancer
progresses and the dying process starts.
That seems to be what is happening with your mother.

I don't know the answer about the lactulose - watch for Mike.
He's in palliative care in Australia and hopefully will be by shortly to reply
to you.

I sure wish your mother was in hospice care. They are usually good at explaining
everything that's happening, what to expect and are a very good source of
support.

Looks to me like you're out west in Canada?
Dad died in BC and we were there. He was in hospital too, not hospice.
When we had questions about his care, we asked a nurse to please have the doctor
meet with us, at his convenience, at the hospital and explain. We were
disagreeing with their decision to stop hydrating him and the doctor kindly came
and explained that in his case, the fluids would only build up in his lungs,
and/or his tissues and make him uncomfortable, if not make his breathing worse
(drowning in the fluids). He spent about half an hour with us and was very kind
and asked us if we had other questions, which we did not. Perhaps something you
could ask for?

We also watched carefully what the nurses were checking and learned a lot
After they stopped the hydration, they monitored the bag where they were
collecting the urine. So we were also watching that. As it decreased, we knew
that his kidneys were shutting down. Even though he had not been eating, they
had pads and were changing them regularly, so perhaps some still comes out the
bowels?

They checked his hands and feet for warmth or cooling and colour.
The hands and feet discolour towards the end due to lack of circulation. The
bluish colour creeps up the ankles and then the lower legs. At the same time,
Dad was sleeping more and more and sometimes moaning. He was not in pain; it was
the dying process going around in his brain, remembering things and people. At
the same time, his breathing was slightly changing. We talked to him quietly and
we discovered that he could hear us even though he rarely spoke because after we
said the Lord's Prayer, he mumbled "Amen". So keep talking to her, even after
she has died. Say goodbye to her in your own way.

We put drops of fluid in his mouth to relieve his dryness, drops for his eyes,
and dabs of lubricant on his lips to relieve the dryness. (the nurses showed us
how) . We held his hands and did the cheek to cheek and spoke messages quietly
into his ear. We told him what a good father he had been to us and (this is very
important) that we would be okay (even though we really did not believe it) and
that it was okay to let go, whenever he was ready.

We held his hand, laid our hands on his forehead so he could feel our presence,
massaged his feet, laid a hand on his arm, so he could feel our touch. A man on
the other newsgroup's daughter lay in the bed with her mother the last day just
before she died. Apparently that's allowed and a comfort to both.

We took turns being there. They supplied us with a recliner, pillow and blanket,
but the last few days or so, we were there all the time. The last few days or
so, they pretty well left us alone, except for changing his position so he would
not be uncomfortable and rearranging his arm supports. We dimmed the lights and
closed the door so the hospital noises wouldn't disturb Dad or us. Sometimes we
quietly sang his favorite songs or played the radio music on low (his kind of
music). Just before that, some people came to visit him including a male nurse
from another ward, a friend he'd made from another ward and a pastor.

The last day or so, his breathing slowed and sometimes stopped and restarted.
Then stopped again, then restarted and then the last time, it just did not
restart. So we shed our tears and called the nurse to come and confirm, then we
each said our private goodbyes to Dad. The last time we could touch him and
speak with him, because he was going to be cremated.

Everyone dies differently, so it's hard to know what exactly will happen with
your mother. I do hope her passing is peaceful. Mom died of lung cancer spread
to the bone, liver and I forget where else right now. I wasn't there, but the
final report showed that she was on oxygen, pain meds and passed away
peacefully, before I was able to get there.

There's a book here, that used to be free online. Crossing the Creek. He's a
blind hospice care worker and unfortunately can no longer afford to provide it
free. I don't know if there's time for you to obtain it. If you think so, I
think that you'll find much of it helpful.
http://www.crossingthecreek.com/crossing_the_creek.htm
"Excerpts" shows each section that's in the book.

I'll be here for you, Justin.
Post anytime.
J


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