Re: OTP - Update from Adelle (very long)

Gwen's is a very good solution! cheryl needs that break and you don't need
the guilt feelings. I wish I could offer you another idea Adelle - I only
hope the end can be as painfree as possible. We had hospice for my
grandmother in her last stages but the hospice was basically drop in at her
home - someone had to be with her. I spent some time, her boys spent some
time and my mom and sister spent some time with her. In the earlier stages
she had homecare in the day who cleaned for a couple of hours and prepared
meals (although she didn't eat them - she was basically on water and weak
tea only). It was good times with her as she was fairly lucid but hard to
see her going through it. This is unfortunately not a situation you could
do this in. The important thing right now is not to feel guilty. You are
doing all you can. Enjoy what time you can with her this week, try to make
any arrangements you need to and ask for help. Give your sister this time
and lean on your husband for moral support and love. When you get home give
the kids extra hugs - for you not necessarily for them.

And feel free to vent on us. Most of us know where you are coming from and
only wish we could do more or say more. But in the end there isn't anything
to say but "I hurt for you and wish I could take on some of the pain."

Take care - gentle hugs Adelle.

Kelly

<sweetpickleNO@xxxxxxxxxxxxxxx> wrote in message
news:7e677$46acbdde$45491df5$16488@xxxxxxxxxxxxxx
Adelle, I'm so sorry for all you're going through, and wish I had good
suggestions to offer. Sometimes it seems there is just no way out, but as
you and Diane have said all this will come to an end; it just doesn't seem
like it right now. But it is the right now that is hurting you so much,
and I can certainly understand with all the decisions you have been left
to make. Could you tell your mom that Cheryl has the flu or a cold, and
the doctor won't let her come until she gets well because she might catch
what Cheryl has. Tell her Cheryl will come as soon as the doctor will let
her. Or tell her anything you can think of that will be a loving
deception. You've heard all about those on the other ASA. It is better
not to think about telling a lie; it is just the best thing you can do for
your mom. And you are absolutely not allowed to feel guilty about
anything you have to do to make your mom, or you, feel better. I'll be
praying for you, your mom, Doug and the children, and all of your family
as this all draws to an easy and a good close.
Love, Gwen

<adstavis@xxxxxxxxx> wrote in message
news:1185712481.443142.89720@xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi, Everyone;

Things here have been busy and - well, hard. My Mom is truly in the
last part of her journey. Could really use your input on a couple of
issues. Hope you don't mind.

This hospital has a great palliative care team. They, along with the
oncologist sat down with my Mom and me to lay out the story. Mom has a
really aggressive form of cancer and the chemo hasn't helped. She
would be in a great deal of pain, if not for the huge amount of pain
meds. She also has MRSE, a medication resistent form of staph in her
blood, cardiac issues (stable), renal issues (not major, yet)...

Mom is fairly medically stable now. They are ready to discharge her
from the hospital. They think hospice would be the best option because
mom can get better management of her pain, as that is the focus of
hospice care. We aren't in a position to do home hospice; no agency in
Denver provides long hours of hospice care in home, just visits. We
can't afford to have help 24 hour (or even 16) and we can't be the
ones to do it. We want her to have good, attentive care. ANd it seems
that we arn't personally up to the task. Cheryl can't reduce her
income by going on family leave, or they would risk losing the house -
then she wouldn't be at home anyway. The rest of us normally live
across the country - I can't because I am physically not up to the
task and my being here for just two weeks is really straining Doug and
the kids. Our younger sister can't because her kids are smaller and
really need both parents right now (hubby is just not up to single
paranting), and one child needs surgery. Inpatient care somewhere
seems to be the best option.

At times she agrees to that. And at other times, it seems she isn't
ready to give up on the idea of, say, not treating a pneumonia if one
developed. On the one hand, she doesn't want to suffer (points toward
hospice), on the other, she still wants more time (points toward
nursing home). Nursing homes are not great at making sure meds are
delivered quickly, so we aren't sure we can keep her physically
comfortable in that kind of setting. I looked at two residential
hospices yesterday - After touring each one, I went to my car and
sobbed for ten minutes. Then I wrote my notes - then sobbed again. If
I have to do this with nursing homes, too, I'm afaid I won't have the
physical or mental energy to do a good job.

Secondly, Cheryl is really exhausted and burnt out. She's been the
sole caretaker, trying to keep the finances stable while caring for
mom. I'm here so she could go to a convention/vacation. I promised her
I wouldn't call so she could get the break she really needs. We even
discussed if it was near the end, not to call until its over. I now
regret making that promise. Mom keeps asking if Cheryl has called. Its
starting to make her agitated. I don't want to lie (am not good at
it). I don't want my mom to feel unloved or neglected. But I want to
let my sister have the time she needs to not be so close to breaking
down (and she really was). I also wonder if she'll regret not (at
least) calling and talking to her. Whose needs do I prioritize?

It's hard being here, in a city where I know no one else, bouncing
around this huge house by myself, and trying to do one of the hardest
things a family goes through - end of life of a parent. I.m not able
to eat or sleep really well; the stress has me nauseated, impacting
both.

Complicating this is a woman who mom 'adopted' who was abused by her
own mother. This woman doesn't really talk to us, except to call and
say, "your mom told me she wanted X, can you bring it tomorrow?" She
just goes off and makes decisions, doing things 'to help.' Yesterday,
she brought my mom heat and eat campbells' tomato soup. Now mom is on
a salt restricred diet for both cardiac issues and because we are
trying to reduce the fluid retention because it makes her
uncomfortable. Well, this stuff is loaded with salt. She told my mom,
"at this stage of the game, you should be able to eat what you want."
There is truth in that. It's not going to kill her any sooner. But it
underminded another goal to help mom be comfortable. ANd because she
doesn't talk to us, she would have no idea that that was one of our
goals (mom wasn't thinking about that at the time. She's a little
forgetful from the pain meds and the 'chemo fog').

I asked my mom what she wanted. She says she doesn't want to hurt this
woman's feelings. The woman had a horrible mother and mom doesn't want
to hurt her. But she's also starting to be a drain. Mom feels she has
to be 'together' when this woman is present, to be the parent. And it
is draining.

Thank you all for listening. I Have two more hospices to visit today,
and a nursing home application to fill out (15 pages).

Adelle





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