Nancy May, Host Eldercare Success: Hospice.

Hospice.

It's one of the most excruciating decisions you'll have to make.

What happens next?

Stay tuned.

This is part one of a two part show.

Hospice is one of the most difficult decisions you'll ever have to make

in your caregiving life and journey.

I'm breaking this topic into two episodes.

The first, I'll share some things about hospice that you might not have guessed.

Good things and maybe not so good things.

But it's important to know how hospice works.

Part two, I'll go into details about my own experience with hospice and

some of the experiences of others.

I might add an extra special bonus.

Stay tuned to the end of episode number two, because there I'll let

you know what's going on next in the Eldercare Success Hospice Series.

These Eldercare Success podcast episodes are designed specifically,

to make a difficult time, hopefully just a bit more bearable.

although that's next to impossible, if not outright impossible

impossible, because you'll be facing the loss of your mom, your dad,

your spouse, or another loved one.

when that happens, the immediate emptiness of them not being in

the room with you is brutal.

I apologize if this is kind of harsh.

It's not intended to be.

My intent here is actually to help soften this time for you and hopefully make the

time for your parent, the person who's passing, just a little bit more gentle.

But let's get on with the rest of the show, First, let me explain

that hospice, like many business entities in the aging care industry,

have changed over the years.

Hospice, which was first developed in the UK, is now alive and well in

the United States, as we all know.

However, although we typically know Hospice as a not for profit, mission

driven, charitable institution, Hospice has become big business here

in the United States and elsewhere.

Right now, 72 to 74 percent or 7 out of 10 hospice organizations are run

and managed as for profit companies.

The rest are government owned and licensed not for profit entities.

private equity is now big into the hospice industry and this trend is increasing as

PE and other private investors are also getting into the aging care business.

unfortunately, there are a lot of complaints.

although generally most of us who deal with hospice have

had pretty good experiences.

Mine have been good except there are a few little wonky things along the

way, which I'll explain in episode two.

but unfortunately.

When a private equity, venture capitalist, or even private institution

gets involved in building or extracting value out of a hospice institution,

things may get a little wonky.

I'm going to stop right there for a second and explain over the past 30

years, I've worked with public companies and large for profit institutions,

when an investment group or other entity acquires another company, then says

something to the effect that they're looking to extract the most value

for a company, for the investors and stakeholders, things more often than not.

Get unpleasant

and many, including customers in this case, caregivers and our

families lose out in the end.

it may not be obvious to them, or you, but it's the little, even the big things,

that can become more painful to our passing loved ones, and you, in the end.

let me back up here a minute and explain that not for profit

institutions are created to fulfill a mission, hence they are also

called mission driven institutions.

The mission?

To do well for those that are passing, at least in the hospice industry.

While for profit or public and private equity led companies are in business

to make money, Their prime objective is to pay dividends to their investors,

stockholders, and other stakeholders.

However, I'm sure you already know this, but not for profit institutions cannot

survive without, focusing on profit too.

That's important, especially in this particular case, because we

don't want them to be destitute.

Especially when taking care of our folks.

the difference with the not for profit versus the for profit in this case is

that their revenues and profits are focused on delivering more and better

services or products to the market, be they consumers or patients...

All that said, when you're faced with a decision to put your parent

into hospice care or not, ask if the organization is a for profit

or not for profit hospice agency.

Please know that you may not have a choice in this one.

when this time came for my dad, the first thing I asked was this question, because

I'd heard all sorts of horror stories about for profit hospice organizations.

I was very bluntly told that the agency was a for profit, but I was also told that

I didn't have the choice, because they were the only agency serving our area.

You may not have a choice either, but it is certainly well worth asking.

If you do have a choice, please take the time, as much as you have, it

may not be a lot, to make sure that you're making the right decision

on which agency to select, whether it be for profit or not for profit.

And if there is more than one in your area, and they're both not for profit,

or they're both for profit, again, take your time to do your research

to make sure that they have a good reputation, and that there are no,

I'll call them dings against them.

Now, let's move on.

The next thing that you're going to be facing is the actual signing of papers

for hospice, even making that decision, you are likely going to be pressured by

a doctor, the hospital, or other care facility to make that decision to put

your mom or dad under the care of hospice.

It's a very difficult decision.

I don't care what anybody says, even if they think it's the best one to make.

It's still hard.

this is how things happened for me.

We knew we were dealing some difficult times with dad.

But, unfortunately, it came to a point that Dad was in the hospital, and my lead

aid was the one who was pressured into trying to make this decision for Dad.

Beside herself, she didn't know what to do.

Well, I'm glad she didn't make the decision for me.

And she reached out.

She called, tears in her voice, barely able to get the words out, and with

the help of a nurse told me exactly what we're dealing with and the

decisions that we had to make for dad.

I was 1200 miles away, and I have to tell you, just thinking about it,

discussing it here, I'm losing my breath as we're talking right now.

It's a tough decision no matter what, but we were pressured to do

what we were told was right for dad.

at this point, as hard as it was, I knew we were making the right decision

because we couldn't go any further.

we fought like hell and did a good job of it.

But finally, Dad's body was giving out, and there was no choice.

At 99, I think we did a pretty good job.

And, if Dad were here at my side today, physically, I

know he'd say the same thing.

but at this moment for me, papers were faxed, signatures were required, I bought

an airline ticket and I felt as though I was in a fog moving at lightning speed.

I called my sister and explained what was going on, and she met me

there too a couple of days later.

I'm sharing this because we really do not know how we'll feel

or react when faced and in some cases forced into the decisions

of having to sign hospice papers.

when it comes to this point and presuming your parent is in the hospital,

which is quite often what happens, You'll have a choice to take your

parent home, or hospice at home, or to take them into a hospice facility,

if there is room in that facility.

Hospice at home is just that.

you'll be responsible for most of the care that your parent will need.

With the guided, what I call a D.I.Y.

And how to question checklist.

You'll get regular visits by the service care providers and check ins from the

hospice agency health care professionals.

But the good news is that you actually have a 24 7 hotline to call

with any questions along the way.

This I highly recommend you take advantage of.

Hospice will also give you a book on what to expect.

I I have to laugh because as I read that book and I went through it with a fine

tooth comb, I thought, hell, I could probably do a better job of writing

this myself to explain what's going on, even at that stage of the game.

My lead aide Millie laughed and said, yeah, I think you could too.

but we were just in the throes of what to expect.

the other type of hospice care you'll have a choice of is

inpatient or hospice care facility.

This is a place that your parent would be taken to where

there is on site hospice staff.

It's kind of like a hospital setting, although many of them really try and

make their facilities look homey and comfortable And just nice, although

I'm not sure nice is the best word.

you can choose this option if you prefer versus having mom or dad go home to pass,

but I have to tell you, there may not be space for you, so please be aware that if

that's the case, don't take it personally, it's just that there's no room at the Inn.

the two descriptions I've given hospice at home and an independent

hospice care facility are really very simple descriptions.

There's a lot more detail to both, and I really do recommend that you

get to know your hospice organizations before you even get to this stage.

I know, you really don't even want to talk about it because that's

kind of facing the inevitable.

I didn't want to either, but it's important to know what your

choices are going to be when and if you get to that point.

I say if, because sometimes death happens really fast and we're not ready for it.

And yes, I'll have to admit, I hate to use that D word, but we're gonna

use it here for practical terms.

The next question you might have is the cost of hospice care.

Now, you've probably been told that hospice doesn't cost anything.

Well, that's not entirely true.

Please, when and if you're ready to sign up for hospice care, ask if

there are any out of pocket costs.

See, if your parent doesn't have any insurance at all, sometimes

you'll have to pay for this.

Although, many not for profits make sure or try to make sure that those

costs are covered by donations and other support that they get.

But that's not always the case.

however, most of these costs of hospice services, if not all, with

many agencies, will typically be covered by Medicare or Medicaid And

a supplementary insurance policy.

But it's always better to ask questions.

I say that because you don't want surprises at the end and find out that

you're stuck with a bill, and it could be a hefty one too, for equipment

or other things that you might not necessarily expect that were not covered.

You don't want to be pissed off as hell at the end and just angry because,

honestly, dealing with the loss of a parent or a loved one is difficult

enough, let alone to deal with anger because now you've got mounting bills.

It's okay to be angry at something along the way, but please don't do it now.

Reserve that for later.

It's just a heads up.

So the next steps, after mom and dad have been brought home or

in the hospice facility, they will be officially admitted.

Meaning, they're going to be signing a lot of paperwork, you're going to be

asked a lot of questions, and this is going to be extremely, I'll say, clinical.

It's not about you, it's not about them, it's just about the process of

what they need to go through, they meaning the agency, the hospice agency,

in order to make sure all the T's are crossed are dotted, and that your

parents get the best possible care that they can provide at that time.

beyond the basic hospice agency documents, you may also be asked

to sign or hand over the following.

Necessary insurance forms, military service documents, especially if they're

going to be buried in a veteran's cemetery and you don't know where they might

be going to next, power of attorney, A living will advance directives.

A pulses a most or DNR by the way.

you are going to need a DNR at any case.

On all those three documents, you're going to need at least one, which will be

placed on a yellow sheet or red sheet or colored piece of paper on the wall next

to your parent's bed while they're in hospice, either at home or at a facility.

It sounds really cool and callous.

But it's going to help you, and it will help them.

you'll also be asked to sign a patient agreement or consent

to receive hospice care.

if your mom, dad, or loved one who are being signed into hospice care

cannot sign this themselves, you will be the one responsible to do so.

You'll also be asked to sign an agreement to the facility rules

or the requirements of the agency.

If it's a home hospice agency, you'll also be asked to agree

to their rules and requirements.

Typically, that includes agreeing not to call 9 1 1.

You see, if you panic and call 911 when you're dealing with home hospice,

typically that means that your parents are going to be kicked out of the hospice care

system, but that's for another episode.

You will also lose your own physician and the hospice physician and medical care

team will be in charge at this point.

The good news is that you can call them at any point in time, not their

primary physician, but the hospice medical care team and their switchboard

to ask any questions along the way.

This is something I recommend that you do, Even if you don't know what to do next.

They're there to guide you along every step of the way.

Now, let's say hospice is in full swing.

We're going to talk about home hospice first.

Your experience, no matter who you are, or what your agency is, whether

this is the first time, or your second, or your third time, or you've

heard it from someone else, your experience is going to be different.

Every single time, trust me on this one.

This is because the team that you're dealing with is likely different.

The exact details of your parents health or health situation or passing

situation is going to be different.

Mom is going to be different than dad.

It was for us.

And I've seen that same thing with other people too.

And your emotions are high no matter what.

Facing the passing or death of someone that you love so much is excruciating

And we're either growing strong, sometimes callous, we may become weak

and fall apart, or learn to soften for ourselves and others around us.

hopefully that understanding is softening for the one that's facing

those final days, and yourself too.

I wish I had another way to describe this, but honestly, I don't.

I'll share more of my own experiences in part two next week.

Thankfully, the hospice team that we had was there to guide

us through every step of the way.

Quite frankly, my team, my sister and I were, Kind of a PETA at times.

I'll call it a pain in the you know what to the hospice agency, because

we called at the drop of a dime with a question, whatever it was.

If we didn't see it in the book, we'd call.

If I couldn't find it online, we'd call.

And they were always so kind and good in answering our questions on what to expect.

They also always made sure, or we asked, what the ETA was of the care professional

who is coming out at any point in time.

Just knowing when somebody is going to arrive is going to give you just

a little bit more peace of mind.

If this is your first time, or as I like to say, first rodeo through

this experience, ask tons of questions, as I said, and don't be

afraid to ask what death looks like.

Hopefully you'll have a close friend or family member who's willing to share

this intimate experience with you.

However, each person's passing, as I said earlier, is different.

Be that by a little or a lot.

I was really very fortunate to have a good friend share what

his wife's passing was like.

He shared every physical little detail that he saw and experienced with his

wife's passing in those final days.

What her body looked like, the transition, tension in her body, the

modeling, anything else that might have happened that he could notice.

It was kind of hard to listen to, but I'm really thankful that I did.

and to be honest, It was also calming at the same time.

I don't know why and I can't quite explain that, but just hearing what somebody else

had gone through and was willing to calmly walk through every step and every stage

of that experience with me was reassuring.

I have so much respect for this friend of mine, and to this

day I am eternally grateful for his kindness and his frankness.

However, with my mom and dad, their passing was different than his wife's,

and dad's was different than mom's.

I can guarantee that whatever anybody tells you, or whatever

anybody has experienced, that is going to be different than yours.

It's different also because it's your parent, it's your loved

one, and it's your experience.

Now, I know I'm jumping ahead a lot here, but I want to get through

these main things for you just so that you understand what to expect.

At the time of passing, if they're not there and you're alone or with

a friend or an aide or whoever might be with you, call the hospice office.

Let them know what's happening and then let them know that mom and

dad have just passed or that you're afraid that they're about to pass.

Again, make sure that you have the ETA of that team member that's going

to come out and be there with you.

when they do arrive, and should your parent or mom or dad be in the process

of passing, They will try to be there with you right to that moment.

If they can't, and if they're not, they will typically dive right into paperwork,

like time of death and everything else that needs to be signed to make sure that

it's on the up, I wouldn't say on the up and up, but it's something that they need

to get done for the funeral home and for the death certificate and any other sort

of notifications that need to go out.

If you're not doing this yourself or an aide or somebody else is not doing

it for you, they will also gently care for your parents body and dress

them as you would like to be dressed.

They will then also call the funeral home to make sure that they know

that it's time to pick up your parent for their final destination.

If you have not given them a funeral home name in the beginning or called

to make sure the arrangements are in place, this is going to be a tough

one because those final decisions are going to be last minute and I got to

tell you they're likely to be costly.

I've heard families taken for as much as $50,000, and I don't

want this to happen to you.

Please do your homework well in advance of making those final decisions on where

a body or a loved one is supposed to go.

I know saying it's just a body that's leaving a house is kind of callous, but

as my mom used to say, we're just a shell at this point, and I kind of believe her.

I have several Eldercare Success Podcasts that we've done on funerals and

arrangements and costs and what to expect.

And I'll put those in the episode notes as well.

There's so much more I could go into depth into this show,

but I'll go over some of those next week.

Before I end this show, I want to share one tiny little belief that I think is

kind of interesting and I didn't even know about at the end of my parents life.

it was something that my aides told me about, and I'm glad they did.

There's an old Danish tradition that says opening a window in

a room of a dying person allows the soul to pass after death.

It's also considered a symbol of letting go and allowing the fresh air

in and the promise of another day.

Many medical professionals actually practice this belief

too, and our aides did.

aide's daughter is a nurse, and they did it at the hospitals as well.

When I heard this, I asked, did we do that for dad?

And Millie said, you bet we did.

And when mom's time came, she did the same thing too.

So I kind of think that mom and dad found each other right outside

that window, or at least I hope so.

On that thought, I hope that this brief episode will help you get

through this incredibly difficult time.

Hospice is a good organization, no matter what I said in the beginning

about for profit, not for profit, private equity, and the like.

but they too, like many organizations, are being faced with financial challenges.

That can potentially impact the type of service and the quality

of service that you receive.

If you have any questions about any of that, make sure your voice is heard.

This is not the time to be quiet or become a fainting violet.

I think that's the right term.

Here are five things that I recommend that you do when facing hospice decisions.

the first is ask what you don't know.

The second, ask again if you don't understand and don't be

afraid to continue until you do.

The third, get to know who your hospice team is.

Or, get to know them as individuals, who they are, what they're dealing with

themselves in their own personal lives.

our lead hospice nurse with mom, I found out was dealing with the passing of

her husband while helping us with mom.

Honestly, can't imagine having to deal with that, But knowing that,

I tried to be there for her, too.

When all is said and done, take a deep breath.

You will be out of breath.

And know that you're stronger than you realize.

Just mentioning the word hospice alone is tough, because it's a

realization that the end is near.

The end has come.

They may be taking care of us, but we need to take care of them, too.

On that note, if you take a moment to give the Eldercare Success podcast a rating

and share your thoughts and comments, I'd appreciate your help in doing so.

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And then Finally, as I always like to say, if this episode has been of help

to you, please share it with a friend, a stranger, or maybe even somebody that

you see is under a little stress on the line at Dunkin Donuts, Starbucks,

or maybe even the grocery store.

It could be that they're a caregiver too.

It can be your gift to them because it's my gift to you.

Thank you for joining me here today on the Eldercare Success podcast.

This is Nancy May.

Be well, stay well, take care and bye bye.