As we age, we often hear of the need to, quote, get our affairs in order.

It's one of the major chores of adulting, making sure our loved ones know our wishes when it comes to end of life care, having an updating our wills and tending to other financial decisions.

These are complex tasks to sort out and often hard to talk about.

I talked to a professor at Wayne State University yesterday about how to care for those who are dying.

Andrea Sankar is author of the book Dying at Home A Family Guide for Caregiving.

The book gives essential information that the dying need to navigate that journey, including the benefits and barriers to dying at home.

Our conversation is part of Katie's The Next Chapter initiative, focused on the issues facing Kentucky's aging population and their loved ones.

Dr. Andrea Sanskar, thank you so much for a few minutes of your time to talk about this very important topic.

And thank you for having me.

Let's talk about this Dying at Home, A Family Guide for Caregiving.

Give us the overarching impetus for for this.

You've had a couple of these versions of this work.

Why is this so important to talk about it and what kind of consequences do we face if we try to ignore the inevitable person?

Can't ignore death.

The impetus for this current version of it is the increase in funding that's available on the federal level, both through Medicare and Medicaid as well, and private insurance.

So that means that hospitals, when they understand that their care is no longer possible in their patients terminal, are really pushing people out to be cared for at home.

And there is some support, as I said, to the hospice benefit, but it's not adequate except in very few cases.

And so families are left with a very high level of care.

Somebody may have just left the intensive care in the hospital and they're at home now.

And the family has to provide all that care.

So this book is designed to help families and close friends who are providing that care, understand what the issues are, understand what they're facing, understand where they can get support, and then how to cope with this very challenging task and very rewarding task.

And dying at home is key because many people think I don't know if I want that right for my loved one or for me.

Kind of dispel for us the myths or concerns that people may have about dying at home.

Well, one of the unfortunate myths is that if you sign up for hospice, essentially, that, you know, you won't get any more care, and that signing a death warrant.

Hospice care is available for six months before someone dies.

And it's focused on keeping the patient, the person who's dying comfortable and supporting the family that is providing the care.

So it's not a death sentence.

You know, people wait way too long to get hospice care.

Typically, they could start getting hospice care sooner and then they can have more care in the home when you have somebody who's dying.

They need a lot of attention and a lot of care.

And often it's around the clock care.

If you have the hospice benefit, you're able to access the resources that hospice provides.

Without that benefit, if you just have home care or you're trying to do it yourself, it's really difficult.

And making the decision that to have that at home.

Hospice assisting.

What are some other considerations or questions you should be asking yourself or discussing with your loved one if they're able to communicate at that point?

Because we would think that they may be at a point in their terminal condition where that communication isn't possible.

Right.

That's exactly right.

Well, two things.

First of all, a physician has to certify that you are the patient only has six months left to live.

So that's the first, you know, access to getting hospice care.

Then you have to as a caregiver, you have to assess, can I really do this?

Not everybody can do this.

I mean, if you're an elderly couple and the person who's not dying is as frail potentially as the person's dying, maybe they can't do it.

Or if you're a young parent with little kids and a full time job, maybe you can't do it.

So even the person who who is dying, who would like to die at home, the caregivers may not be able to actually, you know, respond appropriately to that wish and then may have to arrange different care settings for the dying first.

And that's okay.

I mean, you need to really say, can I do this?

Do I have the extra support I need in order to do this?

And will the rest of my life absorb my total fixation and attention to caring for the dying person?

We always hear the phrase Dr. Sam Carr about getting your affairs in order, and hopefully many people are doing this before they get to this point.

But if there is a sudden, unexpected turn in someone's health or condition where they're not able and did not make those advance provisions, how do you help someone get their affairs in order?

And what does that really mean?

What's the full extent of that?

That's a huge question.

I mean, that can be everything from writing a will, which you don't necessarily have to have in order to be in hospice, to doing advance directives to deciding whether you're going to have a do not resuscitate order.

There's a whole range of things that you want to think about.

Now, if you are in enrolled in a hospice, they will suggest that you think about these issues.

So it's not just the science.

It's up to the caregiver and the dying person.

It's, you know, you will get professional advice about you really need to have advanced directives and advanced directives or what the, you know, hopefully the dying person is alert enough to be part of this is to sort of specify what levels of care they want.

You know, if something happens, if they start choking and are in hospice, do they want to be resuscitated or do they want to just let it go, Then if they have an infection where they're uncomfortable, do they want antibiotics to make themselves more comfortable, which could prolong their lives?

Or do they just want to let the infection take its course?

So ideally, you want to have the dying person involved in all these decisions.

So when this comes up as a crisis, it's not just all on the caregiver shoulders.

Then the caregiver can turn back to say, okay, what did my loved one say they wanted to do in this situation?

And that will provide guidance for the caregiver in both the caregiving acts and the decisions they have to make.

The process of dying.

Perhaps there is there common signs of that when we think about those loss of appetite and the inability to eat, and we think, oh my, my loved one is starving to death.

Right?

But that's a part of the transition process.

Correct.

And are they feeling this in any way or is there pain associated with the dying process?

The research that's been done so far on the dying process shows that it's completely normal for the dying person to stop eating and to stop drinking for several days.

And so in the case of eating, sometimes a few weeks before death and then to force food on them can make them much more uncomfortable because the body functions like the stomach and the liver are shutting down.

And to insist that they can make their body respond negatively, so can they actually make their life more painful?

So, yes, those are as you said, those are all natural part of the natural dying process and they're to be expected.

And a hospice social worker, a hospice nurse will guide you through this as a caregiver.

If this is the first time you've done this, they can say this is natural, this is what we expect.

And I hope people will check out your comprehensive guide for caring for a loved one nearing the end of life Dying at Home.

A Family Guide for Caregiving.

We thank you so much for writing this and sharing a little bit about it with us today.

We appreciate it.

Thank you for having me.