Re: OTP - Update from Adelle (very long)

(((((((((((((((((((((adelle and family)))))))))))))))))))) this is such a
difficult time, partly because of all the decisions and choices that are
forced upon everyone, including your mom.

i'm glad your mom was able to open up and talk about what she really wants
for herself. it makes it easier to honor her wishes, even though it's still
emotionally difficult knowing what the inevitable outcome will be.

my father was in a brand new hospice house, affiliated with the hospital.
it was a lovely place; staffed with beautifully gentle people whose hearts
were very loving and caring. they made every effort to accommodate his
every wish and need and our family members' wishes and needs.. he was very
comfortable and well cared for at every level there. our family had no
gripes or concerns about his care at all, compared to the nursing home both
my parents were in for a time. hospice is wonderful.

it's so nice your mom had a good day. the good vs. bad days really are
dramatically contrasts. it was so easy for me to fall into hope for
recovery when the good days were so good. hard to remind myself to live it
one day at a time, one moment at a time.

i think the altitude really does help some. i remember living in denver and
in so. lake tahoe and i seemed to feel much better at their higher
altitudes, for the first few months. once my bod got acclimated, though, it
was back to "normal". enjoy your bod's respite.<smile>

prayers, loving thoughts and energies being sent.

kate



<adstavis@xxxxxxxxx> wrote in message
news:1185744212.429917.212400@xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Thanks for all the good thoughts. I'm actually a little more at peace
at the moment for a few reasons:

1 - had a talk with my Mom about what she really wanted. She has
decided for pain controll and no longer wants to get treatment if she
gets sick. With that I know we are not railroading her into this
decision. She was alert and clear that she sees no point in treating
and getting 'better' over and over just waiting for the pain to be
over.

2 - I liked both hospices I saw today. One is brand new. Clean,
bright, with pleasant staff. All private rooms The other was older,
crowded (all shared rooms), shabby, no central A/C with the warmest
staff - every single person I heard speaking to residents and family
were cheery, positive and even effusive. You could really tell how
attached everyone was to the residents. And Cheryl actually has had
experience here. A friend of hers lived here until he passed. She
agrees, the staff is great. She said the staff was magnificant when
helping her friend.

The new one doesn't have any openings right now (mom is 5th on the
list). But they are only waiting for equipment, and then can open 4
more rooms, putting mom at the top of the list.

3 - Cheryl called. She's not quite ready for the road to end. But she
did pass on the info that mom's insurance will only pay for rehab, not
residential care. What I didn't know was that mom has a retirement
account. Enough for almost one year at a decent care facility (only
about six months at the nursing home we like). And while moving her
twice is not a great idea, theoretically We could even bring her home
with 16 or 24 hour a day private duty care and home hospice until a
hospice room opened up. Transport would have to carry her upstairs to
her bedroom and she'd stay there until she was leaving the house for
good. Or, we try to rent equipment quickly and put her in the Living
Room. Then she could direct the packing of what she'd take with her.

Mom surprised me today. She's more alert, is moving in bed a bit more.
And the nurse said she was a little steadier standing up to use the
commode. She's also eating better. Today, four months looks more
likely. Yesterday it was a week. I know she's going to have good days
and bad days from now on. I wasn't quite prepared for just how
different the days could be.

Oh Gwen - loving deceptions wouldn't work in this case. All my mom
wants is a phone call. And she knows my sister is at a conference in
Tampa (and taking three days vacation once the conference is over).
When Cheryl called, I did let her know mom was missing her 'primary
caretaker,' so she said she'd call tonight.

I just stopped home to drop off books that mom finished and to get new
ones. Thank you, everyone, for your good thoughts and kind words. They
really helped me feel less alone. It's a hard thing to do in a city
where you don't know anyone. But today is going better than I thought
it would. Guess that's one of my blessings for the day. The other is
theat thankfully (shhhhh don't jinx it) I'm not flaring. I feel better
than I do at home. It's been humid and rainy here in Denver, so it's
not the lack of humidity or stable air pressure. Wonder if it's the
altitude. My sister says her knee becomes almost unbearable when she's
back near sea level.

Love you all! Adelle



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