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My Experience with End of Life and Death (Part 1): Hospice Care - What You Need To Know

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hey what's up everybody this is my

sister Carrie I no idea this is my

sister Risa today we're actually going

to talk about something really personal

and that's hospice nobody wants to talk

about it but it's super important and

it's something that most of us actually

will experience and to be perfectly

honest we are actually going through it

right now with our mom so we figured

that we would actually share what we're

learning with you

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that's hospice is a scary word people

think that it's oh you must be really

really terminally ill in dire pain to be

on hospice but that's not true Hospice

is really a system of support not just

for the patient but for the entire

family involved and I think that's

really important actually because for

the family is yeah it is for the patient

yes

and it also is maintaining a quality of

life for the patient and also for the

family members the quality of care also

it's an efficient way of maintaining

pain pain management and there are 24/7

call with a live person and it's not

like trying to get in touch with your

physician on a Sunday afternoon which is

nearly impossible you can always get in

touch with a professional NP or RN or a

physician on on-call I think we actually

can circle back shows we have to go back

and to define actually what hospices so

Hospice is a diagnosis well it's I guess

it's a notice that the patient who ever

has terminal illness and has a life

expectancy of 6 months or less and that

is determined by the doctor but it's not

always six months or less some little

wool but doesn't an actual official

definition right but some people can

last you know years on hospice right so

that's kind of the I guess one of the

myths that you can go on all hospice and

then you can actually get off hospice if

you were okay if you have any but yeah

give me a better yeah so but for art so

in our case we just it took us a really

long time

decide whether or not to go on hospice

because we felt like she wasn't there

yet and you know it's emotionally it's a

really really hard decision to make

because you know there is an ending to

it

so and we want to make sure that our mom

is as comfortable as possible and that

she still has a life that's fulfilling

and full of joy and love and all that

kind of stuff so but of course there's a

lot of things there's a lot of

bureaucracy and a lot of paperwork that

go into Hospice that we feel like is

really super important so that you guys

can be prepared when the time comes for

you so first up is that we had a

doctor's appointment yeah you start with

the dialogue with the physician we've

been very fortunate to have physicians

that are really caring and really want

to maintain our moms quality of life so

we've had that conversation with them

and a few of them did say I think it

guys it's time to get hospice into the

home and why we agreed that it was about

the quality of life yes it wasn't really

about duration you know it's not really

about quantity in the number of years

it's made making sure that the years

that we have together and for her

especially is the best quality that can

be so my concern was keeping our mother

pain-free and comfortable and safe so

that's paramount and that's why I agreed

to this program so we got the notice we

got the referral and then you have to

choose a hospice so we chose a hospice

we chose northwell health we're out on

Long Island and so you get this like a

nurse comes you may come in you make the

call and you talk to them over the phone

and then once you choose the nurse comes

over and does an assessment yes does an

assessment

it takes all the info down all her

medications were taken down and her

diagnosis she has several so basically

she is being treated for Parkinson's

disease she also has had a stroke 12 19

years ago yes such as right beside

carisi's but she also we discovered has

a enlarged enlarging tumor in her uterus

which is not operable so this is where

the hospice comes in to help with the

pain and also the progression of the

Parkinson's they take a bunch of

information critical information and

also ask questions about I guess family

dynamics you know and who is here to

help out who's not here if there are

aids in the house we are also part of

the CD PAP program which we have aides

that come into the house city pup is a

Medicaid Medicaid program so we have a

rotation of days that come in so we get

this packet of information yeah you get

stuff like this which is I guess the

symptoms when one becomes in your near

death you can also have so we have

possibly having hospice at home but you

can actually also have hospice in a

facility where the person goes into kind

of like a nursing home type of situation

like a hospital but my mom has requested

that she passed away at home and so

that's something that we want to honor

thus that's why we're doing Hospice at

home and everything kind of comes to us

right so big thing actually I think

that's pretty infamous is that is the

med kit which has all sorts of different

stuff in here

that's supposed to be alleviate pain and

well you have you have the morphine you

have in society you have some morphine

which looks weird to me but it's it's

positive that where is notes on your

tongue you don't take any water with it

so it's easy for the person of the

patient and how as strong as us this is

the weakest because mom is so frail and

so late right right they want to start

off with the smallest dose and then

increase as needed but basically this is

like a comfort care comfort pack they

call it so anti-anxiety yes I know

softener suppository yeah baby

Noora Noora and atropine which was used

to dry up secretions and you know

sometimes people get a lot of secretions

in the back of the throat this kind of

kind of drives it up and then that's

that's a stool softener yay it's very

important I know well that's the big

thing that I'll talk about is the

constipation it makes because once the

pot the person is bedridden everything

really starts to slow down alright so

that includes little things in life you

know I don't really count we also got a

hospital bed

we were delivered a hospital bed which

is adjustable in height which is great

because our aides we have very tall

aides and very shortly so it's very

convenient to help them not get injured

back injuries are common when you're

transferring patients but also they have

given us an oxygen tank to relieve

anxiety or ease pain if needed

we have that on

they will provide shower chairs

wheelchairs things like that

hard durable medical equipment and this

is a big thing is that it is a Medicare

benefit so Medicare actually takes care

of all this and pays for everything

which is huge yes because already you

know families are under stress and try

to figure out how to provide as much

comfort so this is actually an amazing

benefit we have access to social workers

our ends we have a dietician on board

physical therapist it's it's just

amazing and they also have a chaplain a

whole network of people working together

and their goal is to just keep the

patient that's comfortable and safe and

pain-free as possible quality of like

maintaining quality of life so as we

kind of go through this process so this

is gonna be all kind of a process for us

emotionally and also just your

graphically and kind of going through

all the paperwork so we'll kind of

document as we're going through how

we're doing how mom is doing and we'll

share it with you okay thanks

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