A Supportive Podcast for those Dealing with a loved one with Memory Loss

A Supportive Podcast for those Dealing with a loved one with Memory Loss

Letting Go With Love

Letting go with Love

[00:00:00] Jennifer: [00:00:00] I am excited to have with me today, Barbara Karnes. She is going to talk to us about letting go with love. So thank you for joining me, Barbara, can you give people your bio? 

[00:00:13] Barbara: [00:00:13] Well, I’m a registered nurse and I have worked with end of life for the last 40 years. I started when hospice started in the eighties.

[00:00:26] Yeah. And started as a primary care nurse ended up being the director of a couple of different hospices until the nine, the mid nineties, when both of my parents died within five months of each other. And so I stopped working to take care of them. And instead of going back, having a nine to five job, I ended up, Being an educator and I not only run around the country and get workshops and [00:01:00] lectures and I have a blog and a website.

[00:01:04]So my focus now is education on end of life. 

[00:01:10] Jennifer: [00:01:10] Well, that’s exactly what I wanted to chat with you today about. As my regular listeners know, my mom passed away March 31st of this year. And I’ve been witness up close and from a distance of other caregivers going through the same process and not surprisingly, everybody goes through it differently, but there have been some people that seem stuck.

[00:01:37] They seem what’s the right word. They. Just like in disbelief. And I personally find that a little bit surprising because when you’re caring for somebody with Alzheimer’s to me, it’s the same. As on you’re taking care of somebody with cancer, we know the end result is going to probably be one specific outcome.

[00:02:00] [00:02:00] And I have been working very hard to find a way to bring this topic to my listeners in a. Inspirational positive way. And that’s why I reached out to Barbara because I didn’t think you guys would want to listen to me lecture on end of life. And Barbara has a lot more experience on it than I do. 

[00:02:18]

[00:02:18]Barbara: [00:02:18] there are really just two ways to die. I want you to think about this? There’s you either get fat. It’s a fast death. You hit get hit by a truck, have a heart attack, or you gradually die and people gradually die from disease or just from old age. those are the only two ways that people die.

[00:02:44] Gradual death has a process to it. And that process, if it just happened, then it would be fast death. So the process in. Dying from disease [00:03:00] begins months before death happens two to three to four months, three things start happening and you can look for these three things and you don’t have to have a diagnosis.

[00:03:14] You don’t have to have blood values. You look at a person’s eating habits. You look at their sleeping habits and you look at their interaction with the world around them. Now as yet, none of this applies to dementia. All right. Now this is from disease, a person’s eating habits change months, two, three, four months.

[00:03:44] They stop eating meat. And then pretty soon they stop eating fruits and vegetables. And gradually on this continuum, they eat less and less until weeks before [00:04:00] death. There are maybe you can get some ice cream down. ice cream goes a long way. We love it. 

[00:04:07]Jennifer: [00:04:07] That’ll be my last meal. Yeah. 

[00:04:09] Barbara: [00:04:09] Yeah. That’s for a lot of us.

[00:04:11] That’s our last meal. So in the one took three weeks before death, a person’s hardly eating anything. And if you think about it, food is the anchor that holds us on this planet. So if the body’s preparing the let go, then it’s gonna stop eating. So that’s the normal way that the body dies. They a person also on a continuum, their sleeping habits change, and they go from taking an afternoon nap to a morning and an afternoon nap.

[00:04:54] Then they’re asleep all evening in front of the TV. You wake them up. They go to [00:05:00] sleep and sleep all night and then one day they don’t get out of bed and then they’re asleep more than they’re awake. And the third thing that happens is a person starts to withdraw from the world around them. And it starts with, they’re not interested in their favorite football team, or they’re not interested in the politics that are going on now.

[00:05:26] And then pretty soon it’s. Don’t have the church ladies come over. I am too tired. And then it’s, I don’t have the grandkids come over and the person is, it’s like, they’re disconnecting all their threads and they’re building their place in the other world. They’re going within. All right. Those are the three things that take you up to one, two, three weeks before death.

[00:05:55] And at one, two, three weeks before death. A person [00:06:00] does what I call begins labor. We go through labor to get into this world. We go through labor to leave it. That’s, that’s a whole nother set of things that we look for with someone that has dementia in the months before death dementia, doesn’t play by any of the rules.

[00:06:24] So you have to throw out all the rules of approaching death when someone has dementia. THey can be sleeping all the time and not get out of bed for months or even years, they can be withdrawn from the world around them for years. It is only when a person with dementia reaches a point where they can’t eat.

[00:06:53] Where they forget how to swallow, where they get, have the food in their mouth and they just choke, [00:07:00] when they just hold the food in their mouth. When you don’t eat, you don’t live. And so when eating becomes an issue and you have to make that decision, whether you’re going to have a feeding tube or not, and,

[00:07:20] the American geriatric society, the association for Alzheimer’s, both of those, agencies do not recommend feeding tubes. 

[00:07:32] Jennifer: [00:07:32] They’re painful. Aren’t they, they act truly end up with more complications. Then they do benefit when end of life is happening. If, if I had some reason that I couldn’t swallow, but I had a healthy body and a healthy mind, then looking at artificial feeding, it’s [00:08:00] worth looking at because they’re your sustaining an act of life when you are dealing with a progressive disease.

[00:08:12] And dementia is a progressive disease then why are you maintaining a progressive disease when the normal natural way that our body dies is it stops eating. It starts sleeping more and it removes itself from this world. So you have to ask yourself, why am I continuing. Or wanting artificial feeding, and with dementia, it often causes more problems because they don’t understand what is this tube coming out of my belly.

[00:08:58] Why do I have to lay [00:09:00] in bed? For eight hours and be fed, through this tube, it’s uncomfortable. They’ll pull it. There’s all kinds of complications and reasons why you don’t want to inflict this discomfort on your loved one for no purpose. You know, and that’s hard because we all want mom or dad, you know, I want to be able to just look at mom, you know, she doesn’t have to answer me.

[00:09:37] I just want my mom. We all have that. And yet every single one of us are going to have our parents die. Because everybody dies. We are born, we experience and we die. It’s the name of the game.

[00:09:58] Right? 

[00:09:59] My [00:10:00] maternal grandfather always said, nobody gets out of this life alive. 

[00:10:04] Barbara: [00:10:04] Well, and he’s right. And yet none of us want to look at that.

[00:10:09] Jennifer: [00:10:09] No, 

[00:10:10] Barbara: [00:10:10] if I talk about dying, if I talk about dad dying, Then that could mean that he could die. So I’m not going to talk about it. I’m going to be the ostrich and I’m going to pretend that I’m going to have him forever. That’s a game we play with ourselves because it’s very, very hard to deal with the fact that dad has dementia.

[00:10:39] He’s not going to get better and he’s going to die. 

[00:10:44] Jennifer: [00:10:44] I’m glad you brought up the feeding tube for someone with dementia, because in my social media feeds, I’ve seen people ask, you know, mom’s not really eating anymore. She’s forgetting how to eat. Should we do a feeding tube? And my answer has always been [00:11:00] no they’re uncomfortable.

[00:11:01] So your answer was much more involved and more helpful. So I, I really appreciate that. And I don’t know why I never thought about the pulling it out and. I just finished lunch. So I don’t want to think about those things.  My mom passed away.

[00:11:17] She broke her leg, they didn’t do the surgery to repair it for obvious reasons.  Her death certificate essentially says she died from lack of eating and drinking as a result of advanced Alzheimer’s. I had to look up the actual medical term and that was, her cause of death.

[00:11:37]It was interesting. I don’t know that she ever held food in her mouth, but she would hold it in her hand. You’d hand her a cookie or a quarter of a sandwich and go, Oh, here’s your lunch? Or here’s a sandwich or here’s a bite to eat whatever descriptive word. And she’d just hang onto it.

[00:11:55] Almost like a. Chipmunk holding onto it and their cheeks, but she would hold onto it in [00:12:00] her hands. So was that a sign that I was missing earlier on  or was that the dementia? 

[00:12:04]I’m well, and, and I don’t know because dementia. Intertwines with everything. And so you can’t pinpoint, well, this is what someone who doesn’t have dementia would do, and she’s doing that.

[00:12:27] So it must not be the dementia. The dementia is like a blanket that is put over the person and. Their whole life is lived through or from under that blanket.  We’re so used to living in a rational world that everything that we do and say has at least sense for us. [00:13:00] Make sense in what we’re saying to someone else with dementia,

[00:13:05] no, not so much. You know, you don’t know what world they’re in and we can’t. We late to the world, they’re in what we want is for them to be in our world, you know, to live the way our world is and what I say, and this is hard it’s very, very hard to do, but with the person that has dementia. Okay. You, you are forced to live in the present.

[00:13:41] You are forced to live in the moment and look and see what their moment is ,not projecting, what their moment three hours is going to be. It’s what is their moment right [00:14:00] now? And how can I support that moment and love them through it. It doesn’t have to make sense because their world does not make sense to us.

[00:14:15] Barbara: [00:14:15] And yet if we try to make their world as pleasant for them not based on what we think is normal. And to me, that’s the challenge of living with dementia. Or someone who has dementia. Does that make sense? 

[00:14:37] Jennifer: [00:14:37] Yeah, and I, as my listeners know, I always took my mom out to the park or the library or the pool, and we watched kids.

[00:14:47] She loved to watch kids. I mean, she was a mom of two grandma of three, you know, and I’m the oldest grandchild on both sides. So there was a lot of cousins, especially on her side of [00:15:00] the family. So she was a mom and she was actually a caregiver in her own. Right. Not, I mean, she helped take care of her father while he was, he had bone cancer.

[00:15:10] And it’s interesting because they did give him a feeding tube. And now after what you’ve told me, I’m wondering why they did that. But it was the late nineties, so we can, we’ve learned more. Right. And yeah. You know, it’s just, that’s what we did. She fell December 30th, 2019, and she ended up with stitches right above her eye.

[00:15:33] And she ended up having a lot of pain walking. And I pointed this out to her doctors, emergency room doctors. Doctors that didn’t seem to care, because it happened overnight. She fell a week later, we were going to the neurologist and she couldn’t take two steps without significant pain. When they did the x-ray to assess the damage to her leg

[00:15:56] when she fell in March, they found a healing fracture on her [00:16:00] pelvis. So in the last couple of months, not only was she obviously in pain. And that’s another reason that she was really acting out and combative. but it, it just meant that it really limited where we could go. So we would just go outside and sit in the sunshine I’m in California.

[00:16:18] So even in February, that’s an option, but there was one day in February. She just was super quiet and just staring off at, I don’t know what, if anything, her visual processing was really bad. And I remember thinking at that time that we might be closer to the end than I assumed. I assumed she had two to three years left, so not two or three months.

[00:16:44] I don’t know how much longer she would have survived. Had she not fallen and broken her leg? That was definitely the last. The last straw of damage to her body. And it was, you know, we hear that all the time, somebody falls and breaks a hip, and then they’re gone [00:17:00] in two weeks. And, you know, that was kind of one of the things I was curious about that prompted this episode was cause I’m like, I don’t understand.

[00:17:10] I mean, she walked and talked all the way up until she fell and broke her leg and then she still talked, but it was a lot less. A lot of what she said didn’t make sense, but it was all words. They just didn’t have any connecting historical context or anything. There wasn’t anything you could hang a, any way to figure out what she was saying.

[00:17:30] So, but they were all full sentences with actual words. 

[00:17:34] My mom fell on March 8th, and she came out of the hospital on the 12th. So I saw her the 12th, the 14th and the 16th, March 17th, we closed everything down and I didn’t see her for the last two weeks of her life.

[00:17:49] However, the care home that she was in, as wonderful as they were, they called me on the 29th and said, you know, she’s not doing really well we think she’d [00:18:00] benefit from a visit from you. Which I now have learned is more likely they knew she was going. And because that’s the only thing that makes sense. So I went and I saw her on the 30th.

[00:18:14] It was very obvious that we were not going to be rolling around in the wheelchair in the summer and watching kids at the park and the pool and all the stuff that we normally did. And I actually was kind of like. Well, with the wheelchair we can actually get from point a to point B in a reasonable amount of time.

[00:18:30] When I saw my mom she was doing the rapid breathing and the hospice nurse gave her the comfort meds to slow the respiration down.

[00:18:39] And even that didn’t help a hundred percent. And I was like, yeah, this is not gonna end well. So when they called the next day and said, come now. It wasn’t it that wasn’t a surprise. My reaction was more of a surprise. I didn’t feel relieved. Like I did when my dad died. I didn’t, I was, I was [00:19:00] actually really, really upset.

[00:19:01] It was it’s it’s weird. And of course, because of the pandemic, we have not had any celebration of life. We have not been able to put her with my dad. He’s in a military cemetery. And there’s space in the niche for her, but she’s downstairs waiting. I’m hoping we can do a celebration of life and the internment, like next March a year from when she actually died, which is really super annoying, but that is the life of 2020.

[00:19:31] Barbara: [00:19:31] It 

[00:19:31] is. Yeah, we think everything’s turned upside down. 

[00:19:36]Jennifer: [00:19:36] If you have a loved one without dementia, And they are ill and have chronic illnesses and they say, I just want to die. Is that a sign?   I have a friend who’s dealing with that right now. And part of the family is in denial.

[00:19:52] Part of them is accepting that it’s probably okay. And he’s been without a spouse for almost four years. [00:20:00] No, he has led a full life except this year, because it’s kind of hard to lead a full life right now. 

[00:20:06] Barbara: [00:20:06] It is. Well, if there’s no active disease process, if he’s just elderly and he’s saying, I don’t want to live, I just want to die.

[00:20:20] Then first I would see if he’s depressed, you know, does he need an antidepressant? I would also get him to talk about. Why, why do you want to die? Is life so hard for you right now? Do you have nothing that brings you joy? You know, how can we make your life better? What I’m hearing is that you’re unhappy and that you don’t like what’s happening in your life right now.

[00:20:58] How can we make it [00:21:00] better? Have a conversation. If there is no disease process in motion, then have that conversation. If the person has a life-threatening 

[00:21:14] Jennifer: [00:21:14] illness, like COVID, 

[00:21:17] Barbara: [00:21:17] COVID. in the frail elderly, that’s a life-threatening illness. If there is a life-threatening illness and the person is saying, I just want to die.

[00:21:30] Then what they’re really saying to you is I want this over with, I want to go from right now. To when I am dead, I want to skip over this process, you know? that’s gonna, you know, I don’t want to deal with that. If I’m going to die, let’s just get it over with and let me die. 

[00:21:51] Jennifer: [00:21:51] It makes sense. 

[00:21:53] Barbara: [00:21:53] Yeah. If they have a life-threatening illness, but if they don’t then why is, why are they [00:22:00] unhappy?

[00:22:00] How can we make your life better? 

[00:22:03] Jennifer: [00:22:03] That’s actually excellent advice. And unfortunately, the friend’s father. Is 89, not real healthy, very, very social. So this year has been a challenge and he, they went to a funeral, whole bunch of them and a whole bunch of them now have COVID. Oh, yes. It’s not a pretty situation.

[00:22:29] And when I hear an unhealthy 89 year old man, who’s been without his spouse for four years, that is a low and a lot more than he would prefer. Now he’s not alone a lot considering, you know, where he lives. He’s got neighbors that are looking in on him, walking his dog with him. There’s a lot of social interaction.

[00:22:50] Even in this pandemic, insanity that we’re all in, but it’s not what he would want. So it’s still, it’s less [00:23:00] socialization than he wants. And when he says I want to die, my F my first reaction, having gone through this a little bit is probably time to call hospice for him and just let him be comfortable.

[00:23:14] I don’t even know if that’s possible with COVID though. So that’s, that’s kind of where I’m at, but, and the sun is kind of along the same lines, but there’s like four of them. And so that gets complicated. Can we talk about the comfort meds and what they’re used for?

[00:23:34] Cause I know there’s a lot of people and you wrote a blog post on this about accidentally overdosing, your loved one, giving them comfort meds. And that was one of the issues that I’ve witnessed somewhat up close, being unable to administer comfort meds. When the person is dying because they’re afraid they’re going to kill them, which is [00:24:00] that there’s a complicated thought process, actually.

[00:24:05] Barbara: [00:24:05] Yes. And we, you know, we Americans live before COVID came one of our major topics of conversation was the opioid addictions, you know, and the opioid crisis, that this country has COVID is kind of upstaged that, but even so the underlying fear that most of us carry in regards to narcotics is there.

[00:24:43] And. Taking care of someone at end of life is different than taking care of someone who’s going to get better, but most people don’t know that. And so end of life care is [00:25:00] judged by how people get better. Unless we teach them otherwise. And so 90% of hospice and end of life work involves education. We have to teach the dying process and how we take care of the dying and a big part of that is pain management.

[00:25:29] We associate dying with pain. And yet what most people don’t know is that dying itself is not painful. Disease causes pain, not the fact that you’re dying. That’s not painful. It’s the disease. And there’s a lot of diseases that people die from that have no pain. And so you’re not going to use a narcotic [00:26:00] if pain isn’t part of the disease process.

[00:26:03] But if it is, then you are going to medicate a person with whatever it take, and it’s generally a narcotic to keep them comfortable until their very last breath. There’s a lot of dynamics, a lot of education  and it’s up to hospice  or end of life doulas or whoever you’re working with as death approaches, which is to explain how to use narcotics, you know?

[00:26:39] Yeah. A narcotic doesn’t make the pain go away. All it does is cover it up. The pain, whatever caused the pain is still there. So you have to keep the cover. I put that in quotes on [00:27:00] the pain you keep the cover on. And that means you have to give the pain medicine around the clock on a regular basis. And as death approaches, the body isn’t working like it normally would.

[00:27:16] And so the, the blood is not circulating the medicine in it. So you’re probably going to have to increase. The narcotic, the medicine to have comfort management and control people. I think. Why are they giving them more narcotics now? It’s because the body isn’t working. And so they have to give more and the closer they get to death, the less normal the body works.

[00:27:52]

[00:27:52]Jennifer: [00:27:52] If somebody’s dying from Alzheimer’, and they’re giving them comfort meds. I’m [00:28:00] assuming that they know that there’s some sort of pain, I guess I’m trying to figure out this one particular person that’s in my mind.

[00:28:08]If Alzheimer’s was the only disease, why comfort meds were necessary at the end of his life. They’re like the very last few days you have a Bible. 

[00:28:18] Barbara: [00:28:18] No, exactly what you’re asking, and I would ask the same question because if pain has not been part of this person’s disease history, if they are dying simply because of Alzheimer’s then I don’t know why they’re getting a morphine.

[00:28:37] Now. Here’s one of the reasons why, and I disapprove of, but it, it is what it is. There are a lot of healthcare professionals that do not do not understand the dying process. Just because you work in a, in a nursing facility or in a hospital, doesn’t mean [00:29:00] you understand how people die naturally. And looking at someone at, in the days to hours before death, you can interpret what they’re doing as responding to pain.

[00:29:19] There is a labor for us to get out of our body. Think of, think of the little chicken that is trying to get out of its shell, how it works and works and works and works well. We work and work to get out of our body. There’s agitation. There’s congestion. There’s. Random hand movements, there’s confusion. there’s difficulty breathing.

[00:29:50] There’s congestion, there’s all different normal signs, normal things that a person [00:30:00] does in this labor to get out of their body. But if we don’t understand that normal labor, then we, the Watchers look and go, Oh, this person has to be in a lot of pain. They’re moving around the bed. Their hands are flailing in the air.

[00:30:21] They’re making facial expressions. They must be in pain when really it’s just the little chicken. that’s working, working, working to get out of its body. And there are a lot of healthcare professionals that don’t understand that labor, interpret the labor as painful, and then give a narcotic. If a person is restless

[00:30:51] and pain is not been part of their disease history say they have a just Alzheimer’s with nothing [00:31:00] else that would cause physical pain, then you may want to give them,  Haldol or, or Adivan, something that will relax their body, but you don’t need a narcotic to accomplish that.

[00:31:18] So there are other drugs we can use to help a person relax without using narcotics. 

[00:31:26] Jennifer: [00:31:26] That makes sense. And I’m not entirely certain what medications, this particular person’s spouse was getting. I do recall that her person had the really rapid breathing like my mom did and our.support group facilitator, who is a retired geriatric nurse

[00:31:49] said it’s because their lungs feel like it’s filling up with fluid and they can’t get, they said it feels like they’re drowning. And that’s kind of what it looked like with my mom. But [00:32:00] now I’m wondering if it was what you’re describing. So that’s, that’s really interesting. And you’re going to give me things to think about all that.

[00:32:08] Barbara: [00:32:08] Well, the rapid breathing is, is very much a part of the way the body dies. It, it is trying, you know, we breathe to live and, and our body is programmed to breathe, but when we’re dying, the body is shutting down. And so nothing works, right? So the lungs and how we breathe and the blood, how it goes through the heart, none of that works.

[00:32:41] Right. And so we see it as if they are struggling, but know that in the hours before death, normally the person will breathe rapidly. It doesn’t mean they’re drowning. It [00:33:00] means that they’re trying to keep their body going and getting the oxygen exchange. And the body’s saying, I’m almost done here.

[00:33:11] I, I can’t keep this up. And so it’s not working when a person has a lot of I V. fluids in the hours or days before death, that’s when fluid builds up in the lungs. That’s why you don’t need the fluid to keep a person hydrated in the weeks or days or hours before death with IV fluids in the days before death, your creating complications and discomfort.

[00:33:51] All right. So you do not want IV fluids. then they will drown.

[00:33:57] Jennifer: [00:33:57] Okay. Yeah. My mom didn’t have any Ivy [00:34:00] fluids and I saw her about 26 hours before she passed away. And she was, they, I don’t know what the hospice nurse gave her, but it didn’t slow. The breathing tremendously. It slowed it a smidgen. And I laughed a moment ago when you were talking about the oxygen exchange, because.

[00:34:21] That’s like, Oh, I can relate a little bit. It’s like when I ride my bike up a hill and I it’s like the muscles all work fine, but because I weigh more than I need to, especially for riding a bike up the hill, I just end up super heavy breathing. And as soon as we get back onto something flat, the respiration comes down.

[00:34:39] So it’s all oxygen exchange and that’s really interesting. Is it typical for somebody that died from advanced Alzheimer’s, is their brain so damaged they forget how to eat and eventually they may forget to breathe.

[00:34:53]Does that also affect  the circulatory system and everything else as well? I mean, it makes sense to me that it would, [00:35:00] but. 

[00:35:01] Barbara: [00:35:01] I don’t know enough about that, how Alzheimer’s works to answer that. 

[00:35:09] Jennifer: [00:35:09] Okay. I don’t think anybody really knows that’s the, that’s the really big challenge. So if we could take one kind of big step back at the end of 2019, I was in search of trying mentally at the beginning to find palliative care for my mom.

[00:35:28] And then. The hospice company that took care of my dad, they got licensed to do palliative care. So I was in the process of setting up palliative care when she fell and broke her leg and then the pandemic and everything went out the window. What should we be looking for? That tells us we probably should be setting up palliative care.

[00:35:52] Cause I think one of, I know my situation with my mom. Was because I [00:36:00] didn’t see her every day cause she was in a care home and there were days that were better than others, which is normal. We all have those kind of days. My husband being one step removed felt that mom was closer to the end than I did. I, like I said earlier, thought she had a couple years left and.

[00:36:18] I was doing the palliative care mostly because I felt like everybody needed more support because she was so combative. And it just, it just seemed like the right thing to do after learning about it. And I know there are people in my support group that are thinking about it .

[00:36:35] so I’m thinking if people understood what signs. That we should be doing palliative care cause that’s different than hospice. Hospice is end of life care. And I think most people are fairly familiar with that. Palliative care is a little bit different and can last a lot longer .

[00:36:52]Barbara: [00:36:52] Yeah, there’s no time for it.

[00:36:55] On palliative care. Palliative care is when you have [00:37:00] various health issues and you want to coordinate all the different health issues. and that can be supportive care. That can be, social work care. That can be physical. physician care and coordinating, and helping, not just the patient, but the family, the support people, have community support because we don’t know what’s available out there.

[00:37:33] So we need to go to, professionals that do know what can help us and. It is really up to us to reach out. I would love it. If  the primary care physician would say, look, I think you should have palliative care and that’ll help coordinate everything. Probably not going to happen. So it’s [00:38:00] up to us to reach out to the medical community and try and get support.

[00:38:08] And for anyone dealing with dementia, And there’s all different things that cause dementia, but when your life is totally focused around caring for someone with dementia, then make a phone call, you know, look in the hospital, look in the yellow pages, you know, Google, whatever and call a palliative care agency and say, here’s my life situation

[00:38:41] can you help me? You know that a lot of good can come from that. And maybe they’ll just say, Nope, we can’t help you. But. Ask because chances are, and because palliative care does not have [00:39:00] a time frame on it and you can be receiving treatment with palliative care where with hospice, there’s a six month timeframe and with dementia, you can’t come up with six months unless they’re not eating.

[00:39:17] Right. So hospice only works when you can put a timeframe of six months or less, and that evolves around food, but palliative care doesn’t have that stipulation. you can’t do it too soon. What you can get as the palliative care people saying, well, no, we really don’t fit. I find that hard to believe that that would happen.

[00:39:45] I think it’s a fit. 

[00:39:47] Jennifer: [00:39:47] I think by the time people are ready to call they’re they’re past the time when it will fit. And I think some of them are past the time of needing palliative care. I have a [00:40:00] friend whose dad frequently stops drinking. He eats, but he doesn’t drink, which I find really that’s just gotta be the dementia, but he’s also 90, almost 94.

[00:40:13] So it’s, it causes her tremendous stress. And she’s looking into palliative care. I hope you said she was going to, I got chastised for missing our support the other night. We did have somebody talk to our group. about palliative care. But I think some of the people in my group needed to hear it again. And I liked the way you put it. It’s just like at least call and ask it’s not never too soon. So that’s excellent advice.

[00:40:44] You have any last minute things we should know, we should do to, to make the transition to end of life easier for everybody?  Because, some of these people. I see them online and I, [00:41:00] it hurts my heart, what they’re going through. It really hurts my heart to see people  they’ve given so much to care for their parents or their spouse. And they’re just in such a bad place. And it just, it really, really hurts my heart. And that’s why I wanted to talk to you because I want to, I want to help.

[00:41:21] And I want people to feel that way. 

[00:41:24] Barbara: [00:41:24] Well, and, and we, we, each of us have our own life experience and we’re each of us going to deal with our challenges in our own way. It’s really hard to. Let go of someone we know and love. And so we don’t want to look at it. We don’t want to talk about it. We want even as difficult as it is the thought of not having mom.

[00:41:59] Is [00:42:00] worse. And so the one thing in regards to serious life ending illnesses and the question I ask survivors, or those caregivers that are having trouble making decisions to let go. Is if you were in your mom’s shoes, if this was you in bed, if this was you with dementia, if this was you, living life, like your mom is living, what would you want?

[00:42:47] How would you want to live? Because most of us wouldn’t want to be there. Most of us wouldn’t want to be going through what [00:43:00] someone we love more than anything else is going through. And a huge gift we can give others that we care about is to give them a gift of freedom. To say, I love you so very, very much, but I see what your life is like,

[00:43:29] and if you need to go, if it’s time, then I bless you on your journey. You know, that’s that unselfishness that we can give is really, I think a sign of love. Can we unselfishly, let our loved one go, rather than put them through a lot more suffering with the [00:44:00] end result is going to be the same thing.

[00:44:03] Because everybody dies we are born, we experience and we die. It’s the name of the game? 

[00:44:12] Jennifer: [00:44:12] That is true. Can’t change those rules. And I did the day before mom passed away when they said, Oh, we think she’d benefit from a visit from you, which still makes me laugh at this point, because I thought that was a really kind way of, of.

[00:44:28] Preparing me. I didn’t, when I realized that it wasn’t the outcome, wasn’t what I was expecting it to be. I just told her it’s okay. I love you. You did a great job. You raised great kids. You know, I just kept telling her the same stuff over and over again. And I finally said, you know, go find dad, go find Chuck because I wasn’t sure which person she thought she was hearing.

[00:44:54] So I figured I’d cover all the bases. So go find your parents. Cause occasionally she’d mentioned her [00:45:00] parents and she was gone within 26 hours. They called and they said, we don’t think she’ll be here till  the end of the day, we got there in half an hour and she was already gone. That was the next day.

[00:45:13] So we couldn’t have really gotten there any faster either. So, and I always knew that she would absolutely hate that she was in a memory care residence that she had Alzheimer’s. My grandmother had most likely had vascular dementia from an aneurysm that leaked and my maternal great grandmother also had what they called back in the day, senile dementia.

[00:45:37] She died before I was born. So that was before they knew anything. So she knew what she knew, what was coming. And I knew she didn’t want to be a burden to us girls. She didn’t want to live in a memory care residence, which those are kind of mutually exclusive. And there were days I would tell my husband, I wish, you know, I wish there was something I [00:46:00] could do and then I’d have really rough days with her

[00:46:02] and then there was like the thought of finding a way of taking care of the situation. So I had kind of gone through the process of knowing she didn’t want to live that way. So maybe that’s why it was easier. I don’t know, I really appreciate this. Cause I, like I said, it really, really hurts my heart to see people suffering.

[00:46:24] And I know as a caregiver, you put so much into taking care of them and then it’s over and it’s weird. I had a podcast so I can keep being a caregiver.

[00:46:38]I appreciate this.

[00:46:39]Barbara: [00:46:39] Well, I want to say that if questions have come up as a result of this, go to my website, www.BK books.com. I’ve got blog articles, that you can read, or if you need. To talk to someone or have a [00:47:00] question. I don’t talk on the phone, but, you can email me barbaraatbkbooks.com and I will answer your questions.

[00:47:10] So thank you for having me. 

[00:47:12] Jennifer: [00:47:12] You’re welcome.

This episode is published on what would have been my Moms 78th birthday. It’s been almost a year since she died. Many people lost loved ones last year and I hope that they had the blessing of this knowledge before that happened. For current caregivers, I hope that what Barbara shared with us today will bring your comfort to confidently help your loved one during their last phase of life. It is the ultimate gift, but it’s also a gift to ourselves. Not having stress and fear added on to the understandable sadness is the reason I asked Barbara to help me share this information. This is an episode that I hope you will share with everyone you know. As my maternal grandfather always said, we don’t get out of this life alive. Since that is true, everyone can benefit from hearing Barbaras advice. It is my goal to provide all of you listeners with advice that runs the gamut of the caregiving journey.

One final way I can help you is through the additional information I share on my website. You can sign up for the email newsletter so you’re notified when new things are published or you can pop in after tuning in to each episode. Whatever you choose to do, know that I am always here for you.