For 40 years Dr. Forrest Jones served patients in Family Medicine. Now he brings his experience in comprehensive wellbeing to the tough topic of end of life care, and how Care Providers and Caregivers can best serve the Care Recipient, the patient at the center of it all, to honor their wishes while preserving their dignity.

Advanced Care Planning conversations can be tough to have, whatever your role in the team.  By tackling the hard topics early, it’s easier to remain present and ensure that the progression of care aligns with the patient’s wishes.  Listen in as Dr. Jones and Susi demystify the process and distill it down to some key components so everyone on the team can have a seat at the table.

In this episode, we discuss

• Why it’s essential to create an Action Plan with your doctor
• The value of curiosity and empathy in patient care
• Enrolling the doctor as an Expert Partner in your care plan
• Including Caregivers in Doctor-Patient conversations
• How the After Care Summary can inform future care conversations
• Ensuring optimal health, with or without ‘life limiting conditions’
• Green / Yellow / Red zones in regard to progression of disease and care
• What Dr. Jones describes as ‘the Paradox of Life’
• Why Caregiver Self Care is so important

And finally, the 3 Vital Q’s for a successful Advanced Care Plan

1. “What’s going on, really?”
2. “What does it mean?”
3. “What do I do?”

Dr. Jones invites Caregivers to connect via email to share their own experience in caring for a loved one as he creates resources to be of the greatest benefit!

Email fjones@caringend.com with the subject “Caregiver Course” to schedule a brief conversation.

Susi Vine: Thank you for joining us this week on the show. I am so excited and honored to share the studio this week with Dr. Forrest Jones. Dr. Jones has a background in family medicine for 40 years. And has helped primary Claire conditions succeed with their end-of-life conversations, not always an easy topic, and gain greater professional satisfaction by using those conversations to give dignity and empowerment to their patients.

He also is on a mission to help families have better presence and management of their loved ones care as they are. Through the process of end of life, something we all know that we are heading for, but these conversations can be difficult to have. So I’m excited to have this physician’s perspective on the show to talk about why these conversations are so important.

Dr. Jones, thank you for joining. 

Forrest Jones: I’m not sure who’s more excited and honored. You are me. Thank you for inviting me. 

Susi Vine: Absolutely. My pleasure. Ever since we connected and you are back in my Heartland in Chicago. And so it’s always a joy to reconnect. I love the art that you have there behind me, the music and the vibrance of the city is definitely something that’s still close to my heart.

So, and our topic is to, and it doesn’t seem like one that people would want to spend time with. All the more reason to bring it on the show. In my prior work, as I worked with senior clients as a move manager, I was helping them move out of their home and into often retirement communities where they might need a higher level of care.

Maybe they weren’t. Able to be independent in their homes, but I saw people at this point of life where changes were happening and we’re not usually comfortable about taking a real honest look at that. And I also saw the influence that had on their adult children helping them through that process.

And so when I heard about the mission of your work, I was really, really thrilled to have this perspective also because a doctor might be willing to have this conversation. Rarely do I think that they have the time that they might wish but then their patients or those families might not be receptive either.

So thank you for forging into this space because I think it’s, we really need to start bringing down the stress and the fear around this so we can know what to expect and what’s possible. 

Forrest Jones: Agreed. 

Susi Vine: So tell us a little bit about your career and, and how this became clear to you that even, you know, at a point where most physicians after a career would take that permission to relax and slow down a little bit.

You’ve still got a lot on your mind and your heart to bring forward. So I’d love to hear about. 

Forrest Jones: For sure, because when I was, we think about caregivers, we also think about power of attorney. So I was power of attorney, medical power of attorney for our parents. And we’re really fortunate. I was, I feel myself fortunate because I have a brother who was the financial power of attorney.

And actually I think that’s the harder job and it really starts in full swing after the loved one passes on. So basic, I kind of handed the Baton to him at that point. But up to that point, I was still practicing and I recognized I was not having these conversations with my own patients. And I thought I caught myself doing a good job, but I never.

Got around to this and didn’t realize how important that is and how much of a service it can be for my patients. And so I said, okay, I’m going to do this. Well, it was too hard. I ran into all the challenges. You can imagine a shortage shortage of time. And even though here in the United States We do get, we can bill for one advanced care planning visit a year, but something would always come up, you know I’d be running late.

The patient might be running late. They might have something else that, that time they think is more important that they have to address. And so many things, I mean, he ended up kicking the can down the road and it just never happened. And so I basically came up with a system where I kind of broke the process and the conversation down into components.

Kind of like with our history and physical, when I was in medical school, my first one took me two hours. And so if you think of an advanced care planning conversation or visit as everything done at once, that was like that whole H and P. But when we actually in practice, we don’t do that whole. Maybe some doctors will do it at the first visit when they first meet me because they want to try to get as much information, but it doesn’t happen after that.

We break it down into components that we work with as we can and as our need demands. And so I thought let’s try to do the same thing with advanced care planning conversation. Now, what was interesting to me was once I took the initiative to try to have elements of these conversations, It really helped my connection because I started to see my patients as people, because I would be asking different types of questions and it fueled my curiosity and actually empathy, you know, and to me, I define empathy as being willing to see the issue through my patient’s eyes and also to see solutions.

Through my patient’s eyes. So it became more of an action word, not just a feeling word. 

Susi Vine: And I think that’s really important because I mean, personally, I’ve been very lucky and I haven’t had to spend a lot of time in specialists offices, but I do feel like physicians and surgeons in practice for a period of time and under the pressures that they experienced in their offices, you know, Out of a sense of kind of self preservation and honoring your patients’ privacy.

There’s, there’s kind of a little space there, right? That rarely is crossed. And so these kinds of questions where you’re asking and they might be inspired to say, oh, my children, or my sibling had this experience, or you have that opportunity suddenly to learn a bit, a little bit more, that it’s never on one of the forms.

So that can be really insightful.

Coming back.

Forrest Jones: Yeah, there we are. 

Susi Vine: Yeah. Thanks for waiting for me. I was like, wait a minute. Dr. Jones just froze and I have a feeling that’s my fault. 

Forrest Jones: Yeah. We know how that goes. Yeah. 

Susi Vine: So I apologize. I was talking about how. 

Forrest Jones: Yeah, I did. I was following you. 

Susi Vine: Yes. Okay, great. So it was just on my part. And then once I disappeared, yeah.

Wondering 

Forrest Jones: about the professional distance there that we have some doctors part of it might be a personality. Part of it might be our training and the environment of the school we grew up in and the models that we saw, how we handle that. And. That’s an issue. I really do try to address in my work, but I try to help doctors have a different view or mindset.

So I’m thinking if we can feel the doctor’s curiosity and their empathy has an action word, we can lean into it. Another thing I’d like to help our doctors with is. Because some doctors have that professional distance as a way of expressing their expertise. And for something like this, especially if you talk about advanced care planning, we really are coaches and partners.

It’s not just, I give you the plan and then you have to execute the plan because we’re not the ones who actually have to carry that. 90% of the work is actually done by the caregiver and the person themselves administering the medication, going to all the visits, having to explain these of the plan and the goals to other family members, caregivers, and decision makers in the family.

So the heavy lifting is really by the caregiver and the patient themselves. I want to be the expert. The one that they can look to to help them carry out their goal and even to define the goal.

Perfect. Does that 

Susi Vine: make sense? Yeah. Yes. And I’m so glad that you brought that into the conversation because. Caregivers do play such an important role in the stress that they experience can start to impact their health. And certainly to feel like they’re in a partnership with, you know, the expertise of the medical care medical provider, who’s understanding the part that everyone is playing in this situation.

And so I appreciate that you’re bringing your perspective to their their role, what is placed upon them and how this all plays out and comes together. Okay. Do you see many caregivers accompanying their patients, your patients into the office, or was that your experience or do you think that’s something that’s becoming more common now?

You know, 

Forrest Jones: it really depends on the functional level of the patient, the person that they’re caring for. So if someone is still quite functional, able to make their own decisions, especially the caregiver give it, doesn’t have to be. I like to try to have them come in about once a year of possible so that we can actually connect and they really can get caught up on what’s really going on and I can hear their questions and expectations grateful for cell phones because.

Many many, if not most caregivers are still working and have a hard time getting away, or they may be short on PTO time and things like this. And so we can just arrange a time where we can do a conference call and I’ll just put my phone on speaker and then we’re all there and we’re talking and that’s been a big help, especially when the caregiver was out of state as well.

Susi Vine: Definitely because we’ve talked. Before about the role that different siblings can play. One might end up just as, as you shared as financial power of attorney and other, maybe medical care of attorney. There’s a lot of, well, there’s potential for things to get lost in communication, but also.

Different priorities or understanding. And so being able to get all the parties into the same conversations helps to save that, that game of telephone that we all remember is right.

Forrest Jones: And 

Susi Vine: tin cans and string.

One thing that you said earlier that I was unaware of, and I, I wonder if this is common for audience too, is that there’s an annual. Advanced care planning visit that is provided for in our benefits. And I’ll bet most people are letting that go underused. 

Forrest Jones: Probably they may not be aware of that. Let me add something else that I think is very useful is now with the affordable care act, one of the provisions is to get a print out.

You didn’t get a print out of the. Which includes the list of diagnoses and medications and allergies and things like that, so that you have a record and also you can go back and review it to make sure everything is accurate. I found that as a key point for my starting my conversation, because what I would do is, well, it, it was actually my patients who taught me how to do this.

They, we have diagnoses that we will record, but it’s really. For our purposes and from our viewpoint. And so for example, I’ll have a diagnosis, congestive heart failure, basically based on a small change and the echocardiogram that’s a screening echo, guarded echocardiogram in many offices were give seniors or those who have any high blood pressure or risk factors for heart failure in the future, because we want to get proactive.

So my patient will come in all alarm, Dr. Jones. You never told me I had heart failure and I’m thinking, no, your heart is fine. We just see some very early changes that help us to monitor. Maybe do a little better job on your blood pressure, a small adjustment of necessary, but no, you’re doing fine. And so that helped me to key in on.

This particular aspect. Why don’t I look at the whole list of diagnoses down there? Let me select from my clinical judgment, the one that might be most life limiting for you eventually. And we’ll build our planning around that. So we talk about advanced care planning. We’re not talking about generalities, abstract things and so forth.

We can actually key on something that’s in your history. And then I can build your understanding, assess your understanding and build some plans because that diagnosis does have a trajectory from today to the end that we all know medically, but we haven’t had a chance to talk about and you may not understand it yourself.

And then if there’s no such diagnosis, that’s outstanding. We’ll pick frail to. Because over half of that, half of us, that will be our situation. We will have frailty that will advanced to the point where we know we lose our independence and eventually pass on, and that might include dementia as well. And so if there’s nothing else like heart cancer, lung issues, and so forth, or other neurologic issues, frailty and dementia is most likely to be the one that has a trajectory.

And believe it or not just sum it up real quick. Talking about that has been a way I could really motivate a lot of my patients to get more physically active because physical fitness is the most important benefit you can give to maintain independence and to really help you negotiate that particular trajectory of frailty index.

Susi Vine: Wow. These are such good points because it is easy to misunderstand that after visit summary that I’ve noticed come through in the digital files, but who often usually logs back in and pulls it up and weeds through the words, geeks like myself, perhaps, but it’s great to bring it home and say, you might not be feeling the effects of this, but here’s where your labs are starting to enter.

We’re going to be paying attention or this medication is for this purpose. Again, you might be feeling fine. This is what you can begin to expect as it advances because aging is unkind, unless we’re very proactive. And then that’s a beautiful way to bring into the conversation, to the power of activity and movement, especially to, to keep that bone density and muscle strength strong, because it is unfortunately the case that a fall can take someone who is still very healthy and make a real sudden and drastic change in their.

Forrest Jones: I’m so glad you mentioned bone density. Because one thing I learned is when I start talking about the end of the trajectory, now we can talk about what opportunities we have now to make your life better today. And I was coaching a doctor and she was saying, well, most of my patients are not seniors.

They’re younger. And I thought, you know what? This still applies because for your younger ones, Now’s the time to build the bone density. When you get past menopause, there’s some things you can do, but you may end up having to rely on medication. But now if you’re in your thirties, we can, this is how that applies for you today in terms of your physical activity, weight-bearing exercises and your diet, even teenagers.

Who’s diet is Cola and ships, not good for bone density, but now we have something that we can help to motivate even young people. 

Susi Vine: Yeah, that’s such a great point. And certainly what I like to share or inspire people to do is make the smaller changes now rather than have to make the radical shift later on, because then we’re even more entrenched in our ways, our habits, and, you know, we’re up against a health situation.

So we’re already not feeling. You know, then we’re definitely craving some of those comfort foods and we’re low on energy and, and everything else that makes it more difficult to bring about the change that we need. So I’m a big proponent of making change the easy way, or taking the lazy path to better health when it’s, it’s smaller habits that we’re building instead of having to really transform ourselves.

So thanks for that reminder. And. So as well as your work with other physicians, which I’m so grateful for, because I think as we’ve already said, time is tight. There’s so many other things, demanding physicians, attentions. Now everything is in a computer screen. So you’re trying to fill in all the fields and be able to click through to the next window.

It’s a very different animal than it used to be. Beyond helping physicians be present to the potential of these kinds of conversations. Where do you see how caregivers can be more active or help to advocate for their family members or the people in their care? How do you think this conversation can be growing?

Or how can caregivers help in these situations? 

Forrest Jones: Let me give you three points. And believe it or not, I came up with these points by. I an idiot, the death of helium, I I’ve an O Lele toast or the death of Ivan Ilyich. And that’s a short story that really was so eye-opening to me, I got an audio book and listened to it over and over again, because it’s such an engrossing story.

And it’s really about this guy who suddenly had an illness that. Caused him so much pain that it disabled him took him out of the society that he was in, that he values so much as far as his self image until he eventually died. And it talked about the changes that he went through from just questions about what’s going on with me and then how the chronic pain.

Which has family members and loved, loved ones couldn’t really see, started isolate him. And we see this a lot with people with chronic illnesses and has of course toward dying also where isolation becomes a part of it, because nobody seems to connect with your experience. And then he eventually did come to terms with it.

So out of it, I came up with three questions that I think. Your listeners might find helpful. We can answer these three questions. That’ll help us to grasp what’s going on and to take effective action. So the first one is what’s going on. Really? How am I really, if you’re the patient, the second is what does it mean?

And the third is what do I do? So the first one, how am I reading? As a way of kind of getting a handle on what stage am I in the illness? Am I healthy? Am I not healthy? What is it now? You don’t have to have a medical degree to answer, to have that. Understand the answer. Basically your goal is to understand the answer well enough to create a goal that’s reasonable and meaningful.

And achievable. I would include achievable under reasonable, and I want to make that distinction. You really want to get both, but sometimes it can be in conflict. So you can imagine a situation where the reasonable thing is this person will never get better, but that’s not the answer you want. That’s not the answer you can expect.

You’re not ready to accept that yet. So meaningful to you means I want my loved one to fully recover returned to their level of independence and love of life and the role of my life and the support, you know, that relationship that, that I’ve come to love and even depend on sometimes. And so there may be a conflict, but merely you want to resolve that because the goal has to achieve both of those.

And sometimes there’s a. To actually arrive at that. And so your doctor needs to be patient with you and to help you. And so I’m thinking if you reframe the question in that way of what’s going on, it’s like, what do I need to know? That would help me to have a goal. We’re going to the doctor, we taking these medicines, you’re saying we need to do these procedures, or we need to do the physical therapy or, or just maintenance to achieve what end.

And if you’re the caregiver, it really starts with a conversation with the loved one that you taken care of. Ideally, while they’re still able to explore. If they’re willing to be honest with you, because sometimes that’s a challenge right there with a caregiver, because the relationship may be such that that’s difficult as well.

The dynamic of your relationship can be a factor that can kind of complicate your ability to set the goal. But the goal is really the, the loved ones. You are really there to help them achieve their goal. That’s what it really comes down to. Let me put it that way. You really there to achieve, help them achieve their goal.

Do they have a sufficient understanding so that we can have a goal that’s both reasonable, achievable, and meaningful to them? Let me just say real quick here that when the loved one chooses a caregiver, they really need to choose someone who is capable of carrying out their wishes. Not the love of one’s wishes, not the caregiver’s wishes because you may pick one child who emotionally is not able to let you go when the time comes.

And I’ve seen so many situations where the loved one, the president being taken care of is only hanging on. Because they’re trying to be strong for the caregiver and they may go through a lots of suffering, a lot of suffering and the tire they’re worn out, but they’re trying to hang on because they’re trying to be a good mom is still trying to be a good model.

That can be so sad, but you can, you can understand what’s going on there and that’s one of the challenges of living. 

Susi Vine: So true. And I’m so glad that you brought that up and illustrated that that illustrated it, but also to give us the insight from the care, the care providers, the medical professionals perspective, because to see this process and to know your patient, to understand that the patient’s wishes, you know, they’ve made peace with the process.

They understand the. But the family behind, right? I mean, that’s really, the difficulty of death is to make peace with the fact that we’re not going to have this person in our lives anymore, but that’s not for that person, the care receivers place to help us make peace with these things. It really is important for the caregiver, especially when then we bring in family dynamics, siblings, or other people who are in different places and have different levels of peace with the process.

’cause I, I understand. And I’ve seen, and you know, we always hear stories of just like you illustrate, you know, people hanging on struggling to remain with us because they know the people who will be staying behind, you know, they worry, will they be able, will they be okay? Will they carry on? Okay. So there’s a lot of responsibility that caregivers take on not only in navigating the care, but in.

Having peace with that choice and honoring that choice and not intervening at the last minute and saying, no, no, no, let’s try something else. After the patient has already acknowledged, this is the process that, that they choose to be on. There’s a lot that goes into it. And, and just as we said, I think at the beginning the conversations can be difficult to have in the first place.

And then as. Situations progress as level of care needs grow. You know, these conversations need to come back around having it once isn’t enough to say, okay, we got to settle. We’re good off the list. 

Forrest Jones: Exactly. That kind of comes to the second question of what does it mean? Because then we want to know from the perspective of the patient, the one whose life we’re talking about, what are their expectations?

And also the caregivers, what are their expectations and how do they work, work through that. And then also we understand that that’s going to change over time. So you have, might have a situation where the patient will say, when I get to this point, just let me know. But then as they get close to the point, they may change their mind and say, you know what?

I think I really want to have this intervention, that intervention and so forth. And then we can actually have a discussion at that point, recognizing too, I’ll just throw this and where there’s often, there’s usually a great. There. There’s not always a time when you, there’s a clear cut line where, okay.

Now we see obviously that interventions, won’t lifelong interventions. Won’t help. There’s often a gray zone and you have to kind of go back and forth. We want to allow for that and you want to have a plan for how we negotiate that as well. So, Let me just say this real quick, right? In that same context, paradox of life, most people have told me.

And I think I agreed that when it’s my time, I want it over quick. You know, I just want to go to bed and just not wake up. That’s how most people say for themselves, but for their loved ones, that’s the last thing they. Because if that happens, they think, oh, I didn’t have a chance to say goodbye. I wasn’t ready.

Or why didn’t they tell me that they were, they were that sick. They didn’t have time to have any closure. And so that’s just kind of a paradox. Most people don’t want a long drawn out, you know, event of their ending of life. But for their loved ones, even though it can be difficult, it gives them opportunities for, for closure.

And I don’t have an answer to that one except would be supportive and to just recognize that we’re all human and that’s just how we react. Does that make sense? 

Susi Vine: And that’s definitely some good food for thought and hopefully some constellation for people who might be facing. That they didn’t have conversations.

They wished they had that. Maybe they miss something or, you know, failed in some way because someone passed suddenly that for that loved one, you know, without weeks or months of navigating illness and treatments and everything else that could be affecting their quality of life. So there can be blessings, even in those, 

Forrest Jones: I learned that when I noticed the times.

The patient had near death experiences. They might have had exams heart disease or whatever. And they actually either came close to dying or either did die, but were revived by a CPR. And then the family will come act. The caregiver will come back and say, you know what, when they finally did pass on, I was ready because when they had the near death event, I went through all the sense of loss.

At that time, but they came back and I was able to really engage. And so when their time finally came, I felt that I had achieved everything and had the closure that I needed. 

Susi Vine: And we just never know. You never know which story is going to 

Forrest Jones: be written. We sure don’t. We probably don’t need to know because being emotional creatures that we are.

That probably would help

the doctor either. 

Susi Vine: Right. We don’t need that crystal ball. It is it the relief that we 

Forrest Jones: imagined it might be. 

Susi Vine: So we’ve got, how am I really? And what do I want? 

Forrest Jones: Yeah. What does it mean? Thank you. What does it mean? And all this is part of trying to decide on what goals make sense. And then the third question is, what do I do is the action plan.

We put all this into action. So once we’ve come to a goal that we agree on is achievable and reasonable and meaningful. Okay, now we have to execute it. And so I would say that the caregiver wants to use these words, doctor, I need an action plan. Now we do have action plans already created for heart failure and different types of cancer therapies and asthma and so forth.

And so for whatever that potentially life ending diagnosis is for you, there may be an action plan already there. And those action plans. Do several things. One, they tell you what signs and symptoms to look for when things change in a significant way. And then they have information about what do you do?

What kind of adjustments can you make at home? And what do you really need to go to the emergency room? And so they will usually be in terms of a green zone, yellow zone, red zone, green zone, everything’s hunky Dory just to do maintenance yellow zone. Here are some signs and symptoms that lets you know, that you’ve moved from the stable maintenance condition and to an unstable condition.

And the yellow all means it’s on stable, but we can still manage. With the resources we have at home, or maybe the doctor’s office. But if you see certain other indications and signs, that means don’t hesitate, go to the hospital. And I think that’s helpful because for the caregiver and the patient, it gives you a sense of control and you don’t have to worry, keep looking around.

Okay. Am I doing the right thing. And for the doctors and especially the chief medical officers who are looking at was that emergency room visit really necessary. Was that really the best thing was that hospital visit really the best thing? Well, if you’re the caregiver and you don’t know, you’re going to default default to the emergency because.

You don’t want this on your hands and you not knowing what to do and you’re freaking out and you just scared to death and you really want to be sure to be doing the right thing. And also you don’t want a situation where family members are criticizing you because you didn’t do this or that. So if we give you guidelines in your action plan, then.

Also, it becomes a way for you to give the doctor feedback on what you don’t understand or what resources or supports you need. Because as doctors, we may assume a lot and in a very brief visit, we may assume too much. And so the action plan gives you a way to push back and say, doc, okay, I got that part, but I can’t get away for this or that because my.

I can’t get away like that, or we don’t have this at home, or I had trouble getting a prescription refilled. Can you help me with that? Or I don’t have the skills for this. I don’t know how to do this. I need someone to show me how to do this. And so then the doctor now has information to know how they can help you succeed

Susi Vine: and prevent, like you said unnecessary trips to emergency. 

Forrest Jones: The people really don’t want to go to them. Who wants to had Friday evening, let’s go to the emergency room. I really liked that you don’t want to do that so people can avoid it, you know, especially around holidays, you know? So that’s why we know that the day after the holiday is when we’re going to get swamped because people thought they needed to go on the holiday, but they put it off.

But if they didn’t really need to go, because action plan walked them through this that’s even better. 

Susi Vine: Yeah, definitely a case where knowledge is power and it takes off stress that stress of trying to make a decision in the midst of an emergency in the midst of concern over your. 

Forrest Jones: And you can, and that gives you a peace to defend yourself if you need to by family members.

Cause sometimes the caregiver may not be the big mouth and the family, big mouth in the family is the one who lives states several states away, never involved with the care, but they always have something to say and they really want to know. But they don’t want the responsibility. We all know who they are, you know?

Exactly, exactly. But if they can show the action plan and we followed this, this and this, and this is what the doctor gave me, and this is what we did. Arguments settled. 

Susi Vine: Yeah. And it’s just emotional injury that we don’t need to be experiencing at those points in time. You need to be focused on the, the person who’s in the center of the care.

Forrest Jones: Absolutely. Absolutely. 

Susi Vine: And so for our listeners, and as you continue to create the programs that you’re developing, you have an invitation for folks who would like to get in touch with. 

Forrest Jones: Yes, they can reach me at my email fJones@carrington.com. And if they can put in a subject line caregiver course, because I really want to reach out to caregivers before I designed the course to find out what do they really need and want to succeed?

So what. Their doctor communication, do they want to help for so that they can succeed in their role?

And there’s actually a couple of parts to that.

Susi Vine: Stick with me. I’m coming back.

Oh, come on.

Forrest Jones: Did you get all that? I’m 

Susi Vine: sorry. No, actually. So if you could go back, there’s a couple of points to that. If you could pick up there that, yeah, 

Forrest Jones: there’s a couple of points because the caregiver has to communicate with the loved one, the patient, as well as the doctor and they want to get it right. Both ways and the doctor can be helpful.

And so. When I’ve talked with caregivers who might be interested in working with me, helping me put this together, I’d like to know where their pain point is, where their biggest challenges are in carrying out their role. And both those aspects. I want to be able to provide some real help 

Susi Vine: and it is so important because I was surprised when I worked in the senior service industry to learn that it is.

Not even uncommon. It’s, it’s typical that caregivers are affected by stress and often become sick and often need care themselves. So we can’t underestimate the stress of stepping into this role and we can be proactive in managing that by looking for the resources that we need and finding the best ways to support ourselves.

So this is a wonderful invitation. 

Forrest Jones: Yes. Caregiver. Stress is real. Burnout is real and I like to be, especially if the caregiver is a spouse, they could actually pass on before the loved one that they’re caring for. And I’ve actually mentioned that to advocate for the character. Partly to help the caregiver give permission to themselves to take a break.

So one thing I would try to achieve, and I let them know, I said, what I want you to do? I want you to be able to take off a week or two every three months and at least a three-day weekend or three days every week. Because if you’re not, and they say, well, I can’t do that. I can’t be away. I said, well, if you’re not here, who’s going to take care of them.

They probably will be in a long-term care institution if you’re not there. So let’s protect you. And I also would use the same thing if there are other family members who could help, but are. And I will make the same point. I say, you have to be there to help the caregiver, get away to that one or two weeks, every three months and along weekend every month, because if they’re not, it’s going to be on you.

So if that’s not the outcome you’re looking for, let’s work together. And, and I’ll use that as a, my bully pulpit and my club to get the family involved, you know, because it makes this so important. 

Susi Vine: Yeah. And that’s a powerful point. If it’s inconvenient. Now, imagine how you’re going to have to turn the tides to solve the situation when it’s all on you.

Forrest Jones: And sometimes, and also use that for the patient who might be difficult and unreasonable. That’s an issue because I’ve seen the patient who really takes a caregiver for granted. This might be their child and there’s family dynamics. And the child has been over backwards and it’s still never enough. That can be so frustrating.

And you know, it’s not unusual for a caregiver’s role to be a thankless job. And so I’ve actually had to talk to the patient and say, and tell him the expert. I said, she’s going to be gone two weeks in three out of three months. And she’s going to be gone for a long weekend every month. And you’ve got to go with it because if she’s not here, you going to be there, your choice and it’s worth this.

That’s helped. Yeah. 

Susi Vine: Yeah. And we do need those straight talk conversations to bring the reality of at home. So, so important. So that wasn’t that. So 

Forrest Jones: I bring that up because in order to achieve that, the caregiver usually has to find a facility that they can show. While they’re away or a family member who has said that they can stay there.

And so when they take these breaks, it’s also a trial run. Yes. You’re testing the system, you’re stress testing the system. And so then everyone gets comfortable with all their roles and parts. And so if something happens, maybe the caregiver has something comes up where they have to go in the hospital for.

So now you stress test to the system. Everybody falls into place. Expectations are there and has worked, and I’ve seen that actually help them get through those transitions. Yeah. Hmm. 

Susi Vine: That’s another terrific point too. Thank you for that. Hopefully that helps drive it home because we will do things for the people that we love that we won’t do for our.

Yeah. So if you need permission to building these caregiver respites, to restore and refresh yourself, then all of these are super important reasons. Why, even though it might be difficult to train somebody else, to bring them up to speed, to recruit the siblings, to put those plans in place. Again, it’s certainly something you don’t want to be doing when you’re under pressure, when you don’t have the time and the ability to put those plans together and they get made.

That’s not how it goes for anybody that’s involved. 

Forrest Jones: Yeah. So yeah. F Jones, a caring in.com subject line caregiver, coach caregiver, course caregiver course. 

Susi Vine: Marvelous. Yes. I think this is so important. I’m so grateful to you for making time to be with me today. Our audience might have noticed a couple of internet glitches, but Dr.

Jones hung in there with me. So I’m super grateful and Now, you know how to get in touch. We’ll have the information in the show notes as well. And I’m so happy to see this conversation coming to the medical providers, coming to the family and caregivers. We really do need these kinds of revolutions in our healthcare system.

It’s it’s not all together broken. It just needs a little Renaissance. So we’ll bring it up to the speed where we need it. All of us. That’s right. That’s right. And communicating. Thank you so much, Dr. Jones. I appreciate your time. And during the week, thanks so much. You take 

Forrest Jones: good care. Thank you. You too. 

Bye.