Episode 38: LWH Q&A Session 1

In this episode of Living With Hospice, Mitch makes good on a promise made during most of the  episodes to answer questions that listeners have submitted over time.   In this episode, we discuss  active dying, telling our loved ones that we are out of treatment options, accepting the choice when someone chooses Hospice over curative care and finally, we get an update on Mitch's animal co-hosts.  

Transcript

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Welcome to another episode of Living With Hospice. My name is Mitch Ware and I'm your host, and I was recently reminded that we have promised to cover listeners questions in a future episode. My immediate thought was that while we do answer those questions in an episode here on the podcast.  

Unfortunately, typically, I'm wrong and I have not been clear in the fact that the topic that I'm covering came from a listeners question. So, as kids would say, definitely my bad!

Today, we're going to rectify that situation and answer some listeners questions and share with you the listeners first name and where they're from.  By the way, did you know we have listeners on every continent in the world with exception to Antarctica?  Perhaps you know, somebody down there who can tune in, and then we can claim all seven continents? That would be awesome. We'll have to work on that one. 

Okay, so let's get started. Our first letter, or email, goes like this, 

"Mitch, I found your episode on transitioning to be most helpful as my husband is in the final stages of his terminal illness, he seems to be cycling in and out of transition, he will experience it for a couple of days, and we're sure he's going to pass and then he seems to recover. Is this normal? It's not that I want my husband to die. But it puts me in an emotional roller coaster. Every time this happens. I don't even know if I should call the kids anymore. When this happens. When should I call out my kids? or How can I tell if he's dying or not? 

Thanks, 

Susan, in Denver, Colorado. "

Well, Susan, first of all, thank you for your question. And I'm sorry to hear about your husband. Let's define our terms here active dying, are actively dying, is the final phase of the entire dying process. Well, a "pre active stage" can come and go, the active stage of dying doesn't come and go, it's there. And it lasts anywhere from a few hours to a day or so. 

Actively dying patients are very, very close to full body shutdown. And usually they exhibit physical signs of this. Usually, most always, as a person approaches death, they become less active. This means their body needs less energy than it did. So they need less fuel, which is food and drink. So they stop eating or cut way back and stop drinking or cut way back as their appetite gradually just reduces because quite frankly, their body doesn't need the energy. This typically happens a few days before they pass away. 

Another common precursor is sleeping more. This usually goes hand in hand with less eating and drinking. This happens because the body is wired to systematically shut down as the disease progresses, as our loved ones body begins to shut down, we need to focus on making sure they're comfortable and just let them sleep. Important point here. Don't wake them up to feed them or give them water or take medicine, just let them sleep, the body's doing what it's supposed to do. I know that can be hard sometimes to watch. And we're so used to making sure that our loved one gets their meds and their food and the toileting and washing and everything on time. And we've been programmed that way for the whole duration of this journey.  But now we're to the point where if they're just sleeping, let them sleep. 

Another little point here, when someone who's dying becomes less social, don't take that personal. You know, some caregivers and family members take this withdrawal personally. Like their loved one is not happy with them or is upset with them or something like that.  As a dying person's energy levels are reduced, they may not be able to spend as much energy or effort physically responding as they once did. 

Okay, another sign to look for is a change in their vital signs. As a person approaches death, and we're talking active dying now, their vital signs will get a little goofy.  Blood pressure drops, and then what else may go back up I've seen that. Then it'll drop again, it may do that a couple of times, but eventually it's going to lower and stay there. Breathing will change also.  Typically it's going to slow down and there may be a breath every 10 or 15 seconds, or it may be an irregular breathing pattern - probably will be - and may seem a little labored. Their heartbeat will become irregular.  The heartbeat will eventually become softer and quite frankly harder to detec.  Urine output will diminish and will probably be brown or tan or rust colored. 

Okay, so now let's look at the extremities, in the days before a person dies, the circulation reduces so that the blood is focused on our most important internal organs. And as we actively die, that will become very obvious.  It means our skin will be cold to the touch, our skin may also look modeled, and is probably pale with some purple or blue blotches or spots on it. 

Now, when someone is dying, their brain is still very active. However, they may appear confused or incoherent. They may speak of people who have already passed, they may be speaking to people who have already passed, and you may not be able to understand anything that they're saying is it sounds like gobbledygook, kind of a mumbling. It's best not to try and correct them, especially if they're seeing visions of someone, a family member that passed away a long time ago.  Everything's okay.  Just let it go, you go with the flow.  It is best not to try to correct them as doing so may cause an additional distress on them. 

That being said, make sure to keep talking to them. Tell them you love them, engage with them, they can still hear you and will be comforted by your presence. When you run out of things to say, or read or sing, just lay with them hold their hand. In the stillness of that moment, let your heart speak to theirs.  It will I promise. All of these things will then tell your loved one, that they're loved and that they mattered. Their life mattered, and they're leaving a legacy in you. 

So, Susan, I Hope this information is helpful to you. It can be difficult trying to discern when a loved one is actively dying or not. So now hopefully these tips will help you. If you need more information, you can go to our episode number 19. And it's all about transition. So thanks again, Susan, for that letter. 

We received a question just yesterday, actually, from a woman in Accra, Ghana.  I hope I pronounced her name right. I believe it's Lesedee. She says 

"Mr. Mitch, I've listened to all of your episodes, as have many of my friends here. They're very good. They're very informative, as well as encouraging. I am a nurse and I have seen a lot of sickness and a lot of dying. I have stage four lung cancer, and it's metastasized all over. I've decided not to start another round of treatments as they're taking away and shortening my life. How do you suggest I tell my three grown children that I'm not going to get better and that I'm going to die?"

Wow, Lesedee. And I sure hope I'm pronouncing that correctly. Forgive me if I'm not. 

First of all, I'm sorry to hear about your situation. And secondly, thank you for your kind words about our podcast, we really do try to provide a quality podcast with each and every episode full of information and encouragement. And thank you for this question. 

You know, everyone who's diagnosed with a terminal illness, at some time or another has wondered the exact same thing that you have, I'm sure. How do we tell our families that we're dying, especially our children, you know, your children better than anyone else, you can tell them one of several ways, I guess you can tell them individually or together. Now, individually can be more private, it's certainly more intimate, and it would allow the child to express their feelings more freely.  

Telling them all at once, maybe more efficient for getting the word out and quite frankly, there is comfort in numbers or comfort in groups.  They will see that they're not alone in their feelings as they sit there with their siblings. Next, I would explain the rigors of going through treatment, kind of explain why you came to your decision. You might want to try a pro and con approach or an upside to treatment and a downside to treatment and an upside to hospice care and a downside to hospice care. A comparison, knowing that treatment is no longer going to cure you. Even if it prolongs your life, you would be so sick and that you would be miserable and you couldn't enjoy life. Share with them that you would rather LIVE what time you have left spending time doing things you enjoy instead of being sick going in and out of treatment, being bedridden, rolling around in wheelchairs and sitting in your lazyboy feeling horrible. 

You're looking for the BEST "rest of your life" that you can have, make sure to tell them, you want to share that with them, I would assure them that everything is going to be okay. If your people have a religious faith, engage them in that way as well that you'll be going to a better place to get out of this suffering. Remind them that they have all the tools needed to be happy in their life, and you will live on in their hearts and in their minds, you'll be there with them. 

I would then go out and live your life to the utmost.  Include them as much as you can  and help them to understand that, well, we all have a day when we're going to die. And you're blessed enough to have a say in that somewhat. You as a family and you as an individual should take full advantage of the best of the rest of your life. 

Thank you for your question, Leseddee.  We wish you and your family all the best. 

By the way, Hospice is not an American thing. Hospice really began in Europe eventually migrated to the states right after World War One, and it came in the form of palliative care, and then eventually full blown hospice course Palliative care is comfort care, but can coexist with curative care, whereas Hospice is purely comfort care and expands to not only caring for the patient before the patient's family, including grief support afterwards, and social workers and therapy during the journey. So it's interesting to hear comments from other countries about hospice care. And we do get those once in a while. 

Here's a comment from Russell in Little Rock, Arkansas, 

"Dear friends at Living With Hospice, my wife, and I want to thank you for all that you do. We lost my wife's Dad, four years ago, he was in a nursing home and basically died a miserable death. In our opinion, he was neglected and we're still really upset about it. The morning he died, they didn't even call us and let us know until in the afternoon. Then, when her Mom got sick last year, her doctor referred her to a hospice outfit here. We had no idea what hospice was, had no idea how it worked.  My wife began studying up on it and figured out it was the best thing for us to do with her Mama.  It is too bad we didn't have it for when her Dad was alive. Her Mama lives three hours away. And of course COVID was on and that just shut pretty much everything down.

So if she stayed in a hospital or nursing home, we couldn't see her. We made the decision to bring her home to live with us. And my wife would be her caregiver, as I work all day in our business. My wife is a very loving, a very caring, very nurturing woman. She was very excited to have her Mama live with us. At first, it was like an extended vacation with Mama still been able to get around some help out doing little things around the house. But in a few short weeks, her sickness kind of took over and she seemed to go downhill pretty fast. In fact, she was even bed bound. 

We've raised six kids, and my wife's cared for them from the cradle to the altar. My wife knows how to be a nurse and a darn good one when she needs to be. But this got to be more than even she could handle. One of the women at the church told my wife about your show, Living With Hospice, on the internet. So she checked it out. Man alive that made all the difference. She listened to a few of those talks that you gave, and then got us all organized and ready to take on Mama. Sadly, Mama passed away a few weeks ago, but she was well cared for and she knew she was loved. 

One of the things they say in the talk about dying is to tell your loved one that they are loved. And to thank them for all they have done for you. This will let them know that they are appreciated and that their life mattered. I cried when I heard you say those words, Mitch.  Mama died knowing that she was loved and that we'd be okay. And that her life mattered. What am I really trying to say is thank you. Thank you to your whole team. Thank you all, very kindly, for all that you've done. And for all you're doing, please keep up the good work."

 Well, Russell, thank you for those kind words. I am humbled and just delighted and I know I speak for the whole team. I'm so very happy that we're able to help you and your family with taking care of Mama and giving the best possible life to her that she could possibly have. In her final days. You guys did an awesome job!

 I really liked that you got organized, and everything that speaks to how well this system can work. And I'm sure you'll think back on this experience with her very fondly for the rest of your life. And you know what Russell?  So will the rest of your family and friends. 

Okay, let's wrap it up with this last question. Oh, this is from Sarah, in Belfast, Ireland. She writes 

"Friends at living with hospice, whatever happened to Big Dog, the Irish Wolfhound Chloe, and Boss Cat Charlie? lol. "

Well, that's great question. Big Dog, Cosmo Kramer is still with us. And yeah, he's half Alaskan Husky and half Irish Wolfhound. And he is a big boy!  Chloe, the orange cat. She's still here. But sadly, Charlie Boss Cat passed away in November. We have recently taken on two new kittens. One is black and white, just like Charlie boss cat, his name's Bobby, or Bobby C or Bobby cat. And, or Bobby socks, whatever just happens to come to mind. And his mate is Tommy. And we call them Tommy C or T-cat. 

When we received these kittens, they were about eight weeks old. And they've been with us now for about three months or so. Bobby is the spitting image of Charlie boss cat. in every respect, he looks similar to him. But his personality is almost spot on with boss cat. The reason I haven't mentioned them is that they quite frankly, haven't been with me when I do these recordings. I'm now recording at a different time of day than I used to so they're just not here. They're in the other part of the house. But we still have a house full of critters. And I really appreciate that question from you, Sarah.

 If you'd like to send us a question or comment, please feel free to do so you can reach us at www.livewithhospice.com. And you can leave us a note at the bottom of the page there or you can send us an email directly at livingwith ospice@gmail.com and you can find us everywhere you get your podcasts including Apple, Stitcher, Spotify, Google, just to name a few. Thank you for sharing your time with us today. It is always a pleasure to be with you. And until next time for the whole gang here at living with hospice. I'm Mitch Ware.   Have a blessed day.