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Nancy May, Host Eldercare Success: Hospice.

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Hospice.

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

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What happens next?

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Stay tuned.

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This is part one of a two part show.

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

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in your caregiving life and journey.

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I'm breaking this topic into two episodes.

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

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Good things and maybe not so good things.

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But it's important to know how hospice works.

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

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some of the experiences of others.

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I might add an extra special bonus.

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

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

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These Eldercare Success podcast episodes are designed specifically,

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

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

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

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your spouse, or another loved one.

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

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the room with you is brutal.

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I apologize if this is kind of harsh.

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It's not intended to be.

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

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

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

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

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have changed over the years.

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

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the United States, as we all know.

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

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driven, charitable institution, Hospice has become big business here

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in the United States and elsewhere.

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

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and managed as for profit companies.

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

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

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

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unfortunately, there are a lot of complaints.

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although generally most of us who deal with hospice have

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had pretty good experiences.

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

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way, which I'll explain in episode two.

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but unfortunately.

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

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

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things may get a little wonky.

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

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

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

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

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

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Get unpleasant

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

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families lose out in the end.

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

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

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

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

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called mission driven institutions.

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The mission?

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

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

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

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stockholders, and other stakeholders.

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

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survive without, focusing on profit too.

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

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don't want them to be destitute.

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Especially when taking care of our folks.

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

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

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

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

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

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or not for profit hospice agency.

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

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

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

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

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

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

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

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

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

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

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

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

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I'll call them dings against them.

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Now, let's move on.

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

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

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

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your mom or dad under the care of hospice.

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It's a very difficult decision.

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

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It's still hard.

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this is how things happened for me.

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We knew we were dealing some difficult times with dad.

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

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

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

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

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And she reached out.

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

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

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decisions that we had to make for dad.

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

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

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

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what we were told was right for dad.

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

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because we couldn't go any further.

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

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

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

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

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know he'd say the same thing.

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

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

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

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there too a couple of days later.

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

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

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of having to sign hospice papers.

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

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

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

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if there is room in that facility.

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Hospice at home is just that.

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

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

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And how to question checklist.

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

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hospice agency health care professionals.

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

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with any questions along the way.

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This I highly recommend you take advantage of.

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

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

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

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

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

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

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

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inpatient or hospice care facility.

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

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there is on site hospice staff.

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

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

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I'm not sure nice is the best word.

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

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

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

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

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hospice care facility are really very simple descriptions.

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

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

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

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kind of facing the inevitable.

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

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

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

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

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use it here for practical terms.

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

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

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Well, that's not entirely true.

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

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there are any out of pocket costs.

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

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you'll have to pay for this.

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

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

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But that's not always the case.

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

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

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a supplementary insurance policy.

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But it's always better to ask questions.

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

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

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

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

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

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

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

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Reserve that for later.

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It's just a heads up.

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

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in the hospice facility, they will be officially admitted.

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

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

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

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

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

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

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

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to sign or hand over the following.

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

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

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

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A pulses a most or DNR by the way.

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you are going to need a DNR at any case.

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

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

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

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It sounds really cool and callous.

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

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

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to receive hospice care.

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

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

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

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or the requirements of the agency.

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

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to their rules and requirements.

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

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

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

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system, but that's for another episode.

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

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team will be in charge at this point.

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

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

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to ask any questions along the way.

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

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

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

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We're going to talk about home hospice first.

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

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

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

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Every single time, trust me on this one.

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

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

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situation is going to be different.

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Mom is going to be different than dad.

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It was for us.

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

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And your emotions are high no matter what.

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

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

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

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

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those final days, and yourself too.

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

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

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

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us through every step of the way.

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

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

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

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

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

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

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

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who is coming out at any point in time.

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

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a little bit more peace of mind.

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

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

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afraid to ask what death looks like.

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

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this intimate experience with you.

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

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Be that by a little or a lot.

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

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his wife's passing was like.

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

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wife's passing in those final days.

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

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

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

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

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

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

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of that experience with me was reassuring.

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

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

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

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and dad's was different than mom's.

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I can guarantee that whatever anybody tells you, or whatever

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

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

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one, and it's your experience.

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

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

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

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

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

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

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

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to come out and be there with you.

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

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

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

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

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

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

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of notifications that need to go out.

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

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

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them as you would like to be dressed.

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

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

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

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

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

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tell you they're likely to be costly.

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

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want this to happen to you.

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

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a body or a loved one is supposed to go.

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

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

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

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arrangements and costs and what to expect.

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

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

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

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

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

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

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

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

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

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in and the promise of another day.

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Many medical professionals actually practice this belief

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too, and our aides did.

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

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

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And Millie said, you bet we did.

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

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

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that window, or at least I hope so.

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

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through this incredibly difficult time.

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

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

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

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That can potentially impact the type of service and the quality

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of service that you receive.

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

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

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I think that's the right term.

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

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the first is ask what you don't know.

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

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afraid to continue until you do.

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

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

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themselves in their own personal lives.

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

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her husband while helping us with mom.

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

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I tried to be there for her, too.

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

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You will be out of breath.

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And know that you're stronger than you realize.

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

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realization that the end is near.

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The end has come.

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

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

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

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You can go to eldercaresuccess.

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live and at the top of the page, there's a tab that says rate this show.

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You can also leave me a voicemail message or a comment or a question, whatever

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you want in the little blue tab on the right hand side of the page that says,

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Send a voicemail message to Nancy.

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When you click on that, a pop up will come up on the page and

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just follow the instructions.

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

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

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

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or maybe even the grocery store.

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It could be that they're a caregiver too.

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

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

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This is Nancy May.

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