Re: We took Mom home today

[Guest guest]

You really have your hands full. Please take some time for

yourself. Even if it's just venting online or to someone you can

talk to. If you can get some support for yourself, you can continue

to help your mom. I know you'll do all you can.

Sending prayers your way,

Cliff

[Guest guest]

a- I am so sorry to hear about your mom. Seems like just

yesterday I was relaying to my sister how she had come through

surgery, gotten home and put up the Christmas tree.

Lots of others here can give much more caregiver info than I can as a

patient, but even if your mom does not want to do hospice yet, there

are nursing assistants available. I am not certain about if this is

covered by insurance, but I would think you will need someone like

this, just to give you and your dad a respite. My home care nurse

who took care of my TPN, suggested contacting hospice ahead of when I

thought I would need them, just to get information about services

available, and perhaps that may be something worth doing.

Without being to take in much of anything, and then vomiting, I would

think dehyration as well as loss of essential electolytes (sodium,

potassium, magnesium etc.) would be a big problem for your mom. You

can get dehydrated within hours with lots of vomiting and diarrhea if

you are not able to take things in. Low potassium can make you feel

terribly weak, and occurs if you are vomiting, or not eating.

Diarrhea doesn't help. If she is interested in getting more chemo, I

would think home fluids and TPN would be essential. As I have

written before, if she has a port this can be handled at home. I had

a once weekly visit from an infusion nurse who accessed my port, made

sure I knew about sterile technique in handling the fluids and I

hooked them up each night. Such a relief to know I was getting 1300

calories while I slept without nausea!

At times, Ensure, Boost have been too much for me to handle. In fact

I drink them most when I am feeling pretty well to try to put on some

weight. One of the PA's at the hospital also commented that some

patients get problems with vomiting with these. Diluting Boost 50/50

with milk and drinking very slowly helped ease the problems when I

was queasy.

Take care,

Kris

[Guest guest]

a:

My heart goes out to you. I know how difficult it is. My husband

also really did not want to get Hospice involved; I think it was

because he knew that it really meant the beginning of the end. Since

we knew how he felt, we got a visiting nurse first. Just having her

available made all of us, including my husband, feel much less

stressed. She was terrific and started coming a few times the first

week, increasing to more times. Even during her first visit, she

initiated other services to help all of us. She also ordered

equipment and better medications. Everything helped to make him more

comfortable and to make things easier for us. I don't know if it is

the case where you live, but around here the visiting nurses are also

the Hospice nurses. (You might want to find out if that is the same

where you live.) Therefore, when we finally did put Hospice into

effect, she was still the nurse who came. Since she had developed a

really good relationship with him, he was much more content with it.

Since he had felt good about it initially, he also was fine about

Home Health Aides and other service providers who came to help all of

us. Just to give us a break during the middle of the night, we did

hire a really wonderful aide to keep awake by his side. It was well

worth the money for the peace of mind and the rest that we

desperately needed to be able to have enough strength to be a support

to him and to one another. It is very important for you to get some

extra help so that you can spend time just being together and others

can do more of the nursing care.

There also are other options, such as Hospice places that are really

cozy and homey, that may work as a better option because the rooms

are more like bedrooms and you can decorate them to look more

personal. At those, you would have less of a hospital feel to it.

The most important factor is to make sure that your mom feels good

about where she is, and you and your dad are comfortable with the

decision as well. I know that my husband adamantly did not want to

be anywhere but home. As long as we had all necessary services and

equipment, we found that it worked out the best for us, but everyone

needs to make their own decision on what works best for them.

Thinking and praying for all of you during this very difficult time.

Fondly,

Amie

[Guest guest]

Dear a--

Sounds like your dad pretty much hiding his head in the sand about

your mom's condition. And is his denial being reflected by her

struggle to continue treatment? Some folks of a certain age (my own

dad one) believe, after years of good health, that they just need to

go to the hospital (one more time) and they'll be well. Consider

this 'bait' to get your dad to okay hospice: can your mom get

Decadron at home, in hospice care? Win, win if she can--she'd be

comfortable, easier to care for for the time, and you'd have hospice

in the picture.

You are in my prayers--

Katy

> thank you Maeve,

> I wish it were that simple. My dad is somewhat against it as well.

He is " old school " and equates Hospivce with instant death.

> We talked about it today, as we were readmitting mom today.

[Guest guest]

E RICA..WHAT A HORRIBLE DAY AND HOW UNCOMFORTABLE FOR YOUR MOM. wILL YOUR

INSURANCE COVER A HOME NURSE, OR IS IT REALY END STAGE. hOSPICE IS SO KIND,SO

CONCERNED AND THEY HELP SO MUCH

THAT IT IS A BLESSING. THEY HAVE A LOT OF EXPERIENCE AND KIND OF INSTILL

CONFIDENCE. wE CAN ALL PRAY FOR YOU ALL,AND HOPE THAT

YOUR MOM AND DAD COME TO A CONCLUSION THEMSELVES. SOMETIMES

IF YOU LET THEM HAVE A BIT OF TIME TO THEMSELVES THE BONDS THEY SHARE CAN DO

WONDERS. THERE ISN'T MUCH ONE CAN SAY EXCEPT WE ALL HOPE YOU ALL GET SOME REST

AND YOUR MOM GETS A BIT OF NOURISHMENT. THINKING AND PRAING NICK & JANE

[Guest guest]

I know that must have been a difficult decision but it's really the best

one. It can

help relieve you of some of the load you are carrying and make more time and

more

quality time for all of you. Take care of yourself and stay well. happy

valentines day.

[Guest guest]

a,

I think this will help all of you deal with this in the best way for you. Now

you can focus on your Mom knowing she has skilled people to handle her

medical needs.

May God grant you all peace and may you share the love you all hold for one

another.

<<<<<HUGS and PRAYERS>>>>>>

Narice