Re: My experience with Hospice

[Guest guest]

Oh, Narice....I'm so sorry the Hospice people were not more caring and

comforting for you and Phil...this kind of treatment is totally unacceptable!!

Their job is TOTALLY to make Phil and You " more comfortable " ....whatever THAT

entails. And they should have been there THAT night to get the items out of

your house!! I hope you write a letter to the higher-ups in the company!!

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Guest guest]

Narice,

As I told you before I follow every word you write

because you are a vision of the future for my wife.

The things you describe are happening to us and it's

almost comical.

The firest time I had colon cancer, it was a little 10

CC growth and they cut it out and gave me 5fu for 6

months. Everybody was nice and friendly and helpfull.

When I first went back, this time, they found out

right away that I was terminal and then everything

changed. The call in proceedure if you have a problem

is to call for a back office nurse. Well now it takes

a day for the back office nurse to return the call and

when they do they are no help at all and pretty much

tell you to go to the emergency room, who knows

nothing about your case.

Luckily I have a little Medical Clinic close by with

just a doctor and a Nurse Practicioner. I have been

going there for years and when they found out I was

terminal they were hartbroken and genually helpfull.

They give me samples of drugs so I won't have to pay

for a prescription and if I just walk in without an

appointment they will find a way to shoehorn me into

the schedule.

I think the cancer centers are doing mental triage and

once you have that black tag on you they don't want to

waste any more of their energy on you.

Please stay in tough Narice...I'm very proud of you.

Sincerely,

Len

--- flipper759@... wrote:

---------------------------------

As I wrote I was NOT happy with our Hospice

experience.

I felt they really left us alone to manage most of

Phil's care ourselves and

did next to nothing to help US. They did come bathe

him and check vitals but

I administered his medications I cleaned him up and in

the early days before

we went on full care

(which basically means a few more appointments)

The biggest disappointment was that they would say to

call them if we had

questions concerns or needed support but they rarely

came. One day my 14 year

old son Tim tried to help Phil to the bedside chair

and Phil fell and lost

control of himself. I was not here but Tim Helped Phil

in every way, i.e., held

him up changed him and put him to bed. He then called

Hospice with notable

upset but Hospice never came.

Whenever we called to report a change in Phil's

condition we got the

impression it was an imposition for the nurse to come

out.

The night Phil died the nurse was giving my boys a

talk on how someone dies

and how we grieve!!! As I was hugging Phil and crying

she was standing in

the background as though I was holding her up from

watching a repeat of

Seinfeld.

The next day the crew came to get all the medical

equipment but left some

items when I called to ask what to do with them I got

the distinct impression

that the office couldn't be bothered.

Thank God the members of our church took 2 hour shifts

and included enough

nurses that Phil had skilled care as needed. BUT I

can't help wonder how

lonely and confusing the journey is for those with no

other help.

Bottom line check out the agency

Narice.

[Guest guest]

Dear Narice, ly I am disgusted that you got such " treatment " ,

it abuses the principle of Hospice care. I am only thankful for Phil

that he had you there for him but I am so sorry that they did

nothing to ease your own burden. Your son Tim is the same age as my

daughter, she would have helped her dad too in the same

situation...but it would cost her something very deep. Love to you

and your boys, Fran

>

>

>

> As I wrote I was NOT happy with our Hospice experience.

> I felt they really left us alone to manage most of Phil's care

ourselves and

> did next to nothing to help US. They did come bathe him and check

vitals but

> I administered his medications I cleaned him up and in the early

days before

> we went on full care

> (which basically means a few more appointments)

>

> The biggest disappointment was that they would say to call them if

we had

> questions concerns or needed support but they rarely came. One day

my 14 year

> old son Tim tried to help Phil to the bedside chair and Phil fell

and lost

> control of himself. I was not here but Tim Helped Phil in every

way, i.e., held

> him up changed him and put him to bed. He then called Hospice

with notable

> upset but Hospice never came.

>

> Whenever we called to report a change in Phil's condition we got

the

> impression it was an imposition for the nurse to come out.

>

> The night Phil died the nurse was giving my boys a talk on how

someone dies

> and how we grieve!!! As I was hugging Phil and crying she was

standing in

> the background as though I was holding her up from watching a

repeat of

> Seinfeld.

>

> The next day the crew came to get all the medical equipment but

left some

> items when I called to ask what to do with them I got the

distinct impression

> that the office couldn't be bothered.

>

> Thank God the members of our church took 2 hour shifts and

included enough

> nurses that Phil had skilled care as needed. BUT I can't help

wonder how

> lonely and confusing the journey is for those with no other help.

>

> Bottom line check out the agency

>

> Narice.

>

>

>

>

>

[Guest guest]

Narice, I am so sorry that Hospice let you and the boys down.

Hopefully you can fill out a complaint form. So sad that they took

advantage of you in your worst time of need.

The church family were so wonderful to be there and help.

Your sons were so strong to go through this. You and your son's

will now have each other to give support too. You are blessed with

such wonderful boys. The love your family has for each other is God

Given.

I wish I could some how take all this hurt away from you and your

sons. May God Bless all of you. Love, Ingrid

>

>

>

> As I wrote I was NOT happy with our Hospice experience.

> I felt they really left us alone to manage most of Phil's care

ourselves and

> did next to nothing to help US. They did come bathe him and check

vitals but

> I administered his medications I cleaned him up and in the early

days before

> we went on full care

> (which basically means a few more appointments)

>

> The biggest disappointment was that they would say to call them if

we had

> questions concerns or needed support but they rarely came. One day

my 14 year

> old son Tim tried to help Phil to the bedside chair and Phil fell

and lost

> control of himself. I was not here but Tim Helped Phil in every

way, i.e., held

> him up changed him and put him to bed. He then called Hospice with

notable

> upset but Hospice never came.

>

> Whenever we called to report a change in Phil's condition we got

the

> impression it was an imposition for the nurse to come out.

>

> The night Phil died the nurse was giving my boys a talk on how

someone dies

> and how we grieve!!! As I was hugging Phil and crying she was

standing in

> the background as though I was holding her up from watching a

repeat of

> Seinfeld.

>

> The next day the crew came to get all the medical equipment but

left some

> items when I called to ask what to do with them I got the distinct

impression

> that the office couldn't be bothered.

>

> Thank God the members of our church took 2 hour shifts and

included enough

> nurses that Phil had skilled care as needed. BUT I can't help

wonder how

> lonely and confusing the journey is for those with no other help.

>

> Bottom line check out the agency

>

> Narice.

>

>

>

>

>