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Episode 5 – Pat Deegan RN – End of life – Importance of planning ahead

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Planning ahead for end of life allows you to be in control of your life and have your wishes honored until you die. It saves energy, stress and resources for your surviving family members.

Diane Carbo: Hi, this is Diane Carbo with caregiver relief. And today I have Pat Deegan a registered nurse and our end of life consultant and podcast contributor. , I’m so excited today Pat I think we have an awesome topic.

Pat Deegan: Oh, that’ll be good. I can go back and forth with things that I’ve seen and how important it is to have communication and what you really want for your final wishes.

Diane Carbo: It doesn’t happen that way. In reality, 70% of people die in the hospital or nursing home. So I wanted you to share with me the problem with not taking the steps to make wishes known.

Pat Deegan: Oh, that’s so true. I’ve seen that in the emergency room with all the trauma and stuff. People come in and a young boy goes swimming with some friends and dives into a lake and never comes back up. We do everything we can to resuscitate them and it’s too late. And then we had another one when the probably wants to be to this day, four teenagers were in a car drinking and drunk.

He had a massive tree and all four of them were killed. That horrible accidentthe carwas no bigger than a washing machine when it was finished. They had no ID on them. It was difficult because they were Jane DOE and John Doe’s the morgue until the family started calling the next day to see if there had been any accidents.

And I felt for the parents. The kids never had a chance to talk about anything if they had wanted it to be, an organ donor or .Anything.

Diane Carbo: I really feel that as a society we need to, when someone say, oh, young people shouldn’t be talking about death and dying. The parents of those young people should be talking about death and dying. they should be because it’s never too early to start planning. Because there’s no guarantees for the future.

Pat Deegan: That’s right. You never know.

Diane Carbo: Yeah. We don’t. So it’s really, , the conversations to tell people what our desires and wishes are. We don’t know what’s going to happen to us. And there’s legal reasons for that as well.

Pat Deegan: Absolutely. Oh my goodness. Yes. But I don’t think people realize the complexity of some of the things, for advanced directives, a living will and all that other stuff. Yep. If there’s so much paperwork and at times, People are actually overwhelmed because it just seems like there’s too much . Unless somebody can talk them through it and make it simple. And it can be simple. They just keep putting it off and putting it off for another time. And that’s the worst thing they can do.

Diane Carbo: Absolutely.

Pat Deegan: Every state I believe is probably different when there’s a declaration for a natural death. Now I’ve got the papers for South Carolina. I know other states that might be a little bit different . And what that talks about, you’re in sound mind and you have a terminal illness , you’re going to initial what you want done for artificial nourishment and hydration. Do you want nutrition given to you with IVs? Or if you want it all withheld? Other things that it accomplishes is you assign somebody that you feel in your family would respect your wishes. These can be revoked at any time. You can change the person at any time that you want, if you have an argument with them. The other thing that’s important is medical power of attorney. You’re going to have attorney for your estate and for other things. But for healthcare, that’s another thing that you have. It’s pretty simple. Advanced directives are another thing that encompasses both of the things we’ve just talked about.. And then you’d be amazed. The amount of people that do not have one. Even if they’ve talked about it over the years, they’ve never put it down in paper. Then they have to go to probate and that takes so much money. Whereas if you have some stuff and you want to get rid of it, get rid of it to the people that you want to have. It that’s important. It truly is.

Diane Carbo: I was going to say it lessens the stress of your loved ones.

Pat Deegan: Absolutely. Now I took care of my husband who died almost 20 years ago. He was everything but cancer. He was a very non-compliant diabetic. He had part of both his feet amputated because of circulation and he had suffered two heart attacks and. He did not want to go to the hospital. And I had promised him that I would take care of him at home. And it was funny when you learn some people’s wishes. He wanted to be cremated and he wanted his ashes buried in the Irish sea. And we would have not. I had that done. My sister went over to Ireland and then she brought his urn with them and put them in the Irish sea.

Another man. He wanted, he had a bucket list and one of them was to go see a golf tournament, like the PGA or something. And she would never known that. And they managed to get that done. So you get these things done and if it makes things so much easier for everybody, because now you really want it.

Diane Carbo: Absolutely. Pat, my dad was diagnosed with pancreatic cancer. Every year in January, he went to Hawaii for six weeks. He had a time share.

He was going to cancel that trip when he got this diagnosis. Because they told him he may only have six months or less to live. So what I did was I told her first you’re not dead yet. You still got a lot of living to do. And people don’t realize that. You can plan ahead for your death, but still live life. We put him on hospice because he was starting to decline. And actually he went to Hawaii. The hospice agency over there evaluated him. Within the first few days it was like a spiritual healing of him and his spirit in his happy place. For the whole six weeks he was there, they took him off hospice. He was amazing. Wow. And the day before he came back home, he started not feeling so well. And he lasted another month after that, to live life to the fullest until the end,

Pat Deegan: That’s the secret, we all have regrets. Why waste your time and your energy on things that you can’t fix? It, you, what you love and and do them. If you’ve got cracked relationships fix them.

Diane Carbo: Yes. And there are other things that people need to think about. with the end of life. And we’ll talk about, hospice and what a DNR and stuff. Isn’t another call. I want people to understand that a medical power of attorney is so important and anybody over the age of 18. Yeah. And people say what does that entail? I’m going to recommend that people look at an advanced directive from an organization called five wishes. It’s www.fivewishes.org. It is a very comprehensive package , where you go step by step, . They ask specific questions. Should you not be able to eat ever again? Would you want to , have your life sustain through a feeding tube? Or just little conversations like that can make a difference . But, people have to take steps to make their wishes known ahead of time. When we don’t do the work required To establish a legal basis for our wishes. They don’t happen. And somebody else takes over. One of the things I tell people is when you’re planning ahead for your end of life, I don’t care if you’re a parent. As soon as you become a parent, you should have that kind of stuff put in place. It’s important because it, number one takes stress off your family. Absolutely. And I will tell you the death industry takes advantage of people at times. Yeah, when they’re absolutely when they’re in their grief and the grief and it costs so much more money. Because people think out of guilt, they’ve got to buy the best casket and they’ve got to have the best of everything. And you could go into tens of thousands of dollars to plan a funeral, when all that isn’t necessary. Especially if you’re like me, I just want to be cremated. I tell my son, it’s putting my urn on the mantle. Cause I want to be in the family room to hear what’s going on. All got, make fun about it.

Pat Deegan: They take advantage of the bereaved when you get down to the funeral home. Because you want the best for your husband and, on an honors course, you do. But I was extremely fortunate . Before my husband died at that time I was working as the hospice director. And I was privy to a lot of things that most people weren’t. And I had made all his plans, everything down to the last dot.. So when he died, they came and picked up his body. Everything was in place. And my children were absolutely flabbergasted that this had all been done. For them and for me, and it certainly relieved a lot of anxiety. So of course they, what did they do? They requested that I do the exact same thing for myself. I did everything is written down. The T’s are crossed and everything is done so they don’t have to worry about a thing.

Diane Carbo: Exactly. And I think if people have very strong feelings about how they would like to be memorialized. And how they would like to have, like you said, With Bill, he wanted to be put in the Irish sea. People may have a special of disposition of their body that they prefer. Some people are into green. They want to be all natural now and just so many different ways. So there are things that, that you can put in place ahead of time to make sure that those wishes are known. And people leave detailed instructions as far as what you want for your .Funeral and who’s to get what, and he used to arrange things for you. Those are important things that make it so much easier.

Pat Deegan: Yes. At that time condition to make a decision.

Diane Carbo: Dealing with families, there’s always dysfunction. There’s issues with handling the financial that healthcare, the after-death arrangements. There’s so much going on. communicating your wishes early and often and leaving detailed instructions can actually makes this process so much easier for everybody. And avoid a lot of, infighting between family members

Pat Deegan: .I said not a funny story, but I, my oldest daughter is going to be like the executrix. I have everything written down. Even to pieces of furniture people are to get, but I have an odd request for my ashes. I know, only one daughter would do it. My other two would not. So she’s been allocated in my will a certain amount of money to fulfill that wish and that they all know it. All my children know it.

Diane Carbo: that’s smart because it’s in writing. And if it’s actually in a form of legal document that nobody can argue with,. One of the things that I think of when you plan ahead for end of life you’re also making arrangements to provide instructions to healthcare professionals. On the type of care you want, the extent of care you want. When you don’t have it, you cause a crisis in the family. It takes away your ability to be in charge of your life. One of the things that tell my clients is that it’s important to put things down. Because it gives you the ability to be in control of your life till the very end. Otherwise it’s just crisis management.

Pat Deegan: I tend to, every year around my birthday, I go over all my papers again, to see if anything has changed or if I want to add every anything. And I’ve done that for probably 15 years every, just to make sure that it’s still what I want. That’s a really good point, Pat. People should not only do their end of life things every year to go over all their paperwork. And what they want review because people pass unexpectedly. If you have identified a person or a family member, that’s going to be your executive. You want to make sure you replace that person with somebody, and trust will honor your wishes. You want to do it fast because you don’t know how much time you have.

I think another issue is if people are going to be donating an organ or their body, that’s an entirely different avenue. Because there’s so many other things that they have to think about to make sure that they’reof sound mind.

Diane Carbo: I know people that donate their body to science afterwards. And, that’s a whole process and it has to be done ahead of time. You can’t just do it at the last minute. So, people want to prepare for end of life and have their wishes honored. They need to do it and talk about it and talk about it often.

Pat Deegan: And they have to be sure to let their doctor know that they have got a living will or what they want for end of life, nutrition and stuff. It’s one thing to have it on paper, but it’s a nice if your doctor knows it too.

Diane Carbo: you’re absolutely right about that. And they’re trying to implement that through Medicare, that doctors talk about our end of life issues. But they only have 15 minutes to talk to us before their times off, according to Medicare. So it doesn’t always get addressed. It’s a reality of life. I think even doctors feel uncomfortable discussing end of life issues with patients.

Pat Deegan: Oh, absolutely. Cause I think death is like a failure in the eyes of the medical profession. They can’t make everybody better. So hospice came on the scene thank goodness. Many years ago and has changed most of that.

Diane Carbo: Hospice has changed a lot since when it first. We’re going to talk about hospice at another time because. There’s a whole conversation that we can do.

Pat Deegan: Yeah. And then some, oh, absolutely.

Diane Carbo: I think the evidence is clear that people should start planning for end of life, early in their . , in their twenties . And to make sure that they have peace of mind, if anything happened to them during their last days they’re in charge of their life. Their wishes are being honored and I think that if people want more information about this, they can just continue to follow us on our podcast, because we’ll be talking about those features

Pat Deegan: When they’re dying, when they’ve done, like you just said, let their families know what their wishes are. There are a lot more peaceful because there’s not all that unrested remarks between themselves. And I think people tend to forget that the last sense lost when they’re in the dying process is . The patient can hear, and he hears all this, turmoil and aggravation and everything else. If everything has been set in place beforehand, none of that’s necessary. So it’s really peaceful death,

Diane Carbo: A very compelling point you made there, and it’s a reason why people should overcome their uncomfortable of talking about the subject of death.

Pat Deegan: Yes.

Diane Carbo: Because they need to overcome their fears. So it’s never too early to start planning because there’s no guarantees for the future. Pat, I really appreciate your time and I’m looking forward to her podcast next week

remember caregivers, you are the most important part of the caregiving equation without you. It all falls apart. So please practice self care every day. Be gentle with yourself because you are worth it. Until next week. Pat, I’ll talk to you later. Bye.

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