Caregiver Stress: Is it Okay to Say “Enough!” with Dr. Jamehl Demons, Geriatrician at Atrium Health Wake Forest Baptist

[00:00:02] This episode of The Caregiver Community is sponsored by PACE at Home.

[00:00:13] During this uncertain time, PACE at Home is enrolling participants who wish to continue to remain at home.

[00:00:20] Partnering with families, PACE at Home provides caring medical support for all of our program's participants.

[00:00:27] Visit us on our website or give us a call at 828-468-3980 to talk with a representative that can discuss with you the PACE at Home All-Inclusive Medical Approach.

[00:00:41] PACE at Home is the champion for seniors wishing to remain in their community.

[00:00:55] Welcome to The Caregiver Community.

[00:00:57] This is the place where we talk about the joys and the challenges of caring for our aging parents and other loved ones, as well as caring for ourselves.

[00:01:06] I am Frances Hall, founder and executive director of ACAP, Adult Children of Aging Parents.

[00:01:13] In this podcast, we are talking about caregiver stress and saying enough.

[00:01:20] Drawing a line in the sand, identifying where your limits are is essential for you as a caregiver as well as for your loved ones.

[00:01:30] Caregiving often is a marathon, not a sprint.

[00:01:34] And knowing where your limits are before you get there is truly helpful for your loved ones as well as for yourself.

[00:01:43] I am delighted to be joined by Dr. Jamal Demons.

[00:01:48] Dr. Demons is a geriatrician who is on the medical staff of the Adriham Health Wake Forest Baptist in Winston-Salem, North Carolina.

[00:01:57] In case you are not familiar with the specialty of geriatrics, this is a physician who specializes in overseeing the health and wellness of older adults.

[00:02:07] I recently heard Dr. Demons talk about the need for caregivers to draw a line in the sand,

[00:02:14] basically identifying where their limits are.

[00:02:19] And I knew from personal experience as well as lots of conversations that this is a real challenge.

[00:02:25] This is a real issue for lots of caregivers.

[00:02:29] So I thought, what a perfect conversation this will be.

[00:02:33] Dr. Demons, thank you so very much for being with us to talk about such an important topic.

[00:02:41] How are you today?

[00:02:43] I'm doing great, Frances. Thank you so much for inviting me.

[00:02:46] Oh, thank you for being here.

[00:02:48] Okay, let's talk about caregiver stress and saying enough.

[00:02:53] I used to say it's like enough is enough is enough. Period.

[00:02:58] Right.

[00:02:59] Exclamation point.

[00:03:00] Okay, let's kind of begin at the beginning.

[00:03:03] How widespread is informal caregiving across the country?

[00:03:08] Wow.

[00:03:09] It is actually surprising.

[00:03:12] I'm also a nursing home doctor.

[00:03:14] So I see a lot of patients in facilities, but really about 90% of caregiving for a disabled older adult is done in their home.

[00:03:24] And therefore probably 80% of that care is done by informal caregivers.

[00:03:31] So these are persons will call them unpaid caregivers because it may be quite formal because it may be a situation of the loved one moved in with someone.

[00:03:41] So they created a specific plan or program for caregiving, or it could have just happened as it does in so many families.

[00:03:51] So I would say that when we talk about unpaid caregivers and most of those are family members.

[00:03:58] So we are talking about $400 billion worth of care done by these unpaid caregivers over the course of a year.

[00:04:08] And when we are saying unpaid, we also primarily are talking or typically talking about untrained that they that people have no training for what they are doing the wide range of activities that they are called on to do.

[00:04:25] Right.

[00:04:26] Right. Absolutely.

[00:04:27] Again, going back to when I speak of people who are living in nursing homes, you know, we do we require training for the CNAs that are taking care of them during the

[00:04:37] activities of daily living, bathing, transferring, feeding them.

[00:04:42] We talk about nurses who are administering medications.

[00:04:46] But all of these things are typically done in the home by people who do not have any kind of formal education about it.

[00:04:54] We're hopeful that there's more and more programs that are available just to show people how to do a little bit.

[00:05:01] But no, most of it is completely untrained.

[00:05:04] And I think that's a part of why the caregiving what we call caregiving burden ends up being a title is because people start to feel like they are untrained.

[00:05:15] What am I supposed to do in this situation, beginning to feel overwhelmed because of not having the training for sure.

[00:05:24] Loved ones want to take the best care of their again, of their loved one, whether it's your parent, whether it's your spouse, whether it's a friend.

[00:05:33] And so they want to do the best job possible.

[00:05:36] But what is that best job if they've never seen it and never been told what it is or how to do it?

[00:05:42] So that's where we come up with the stressors feeling overwhelmed feeling like they don't know what they're doing.

[00:05:50] And so that's when we start having problems and where people develop this kind of stress.

[00:05:56] And so those of us who have cared for someone in the home, then we not only are doing the caregiving activities, but we're doing this huge learning curve of how do you do that all at the same time?

[00:06:09] Absolutely. Absolutely.

[00:06:11] So and the learning curve is so steep.

[00:06:14] And obviously, people who are needing the care have several different possibilities of things that they need.

[00:06:22] I mean, it could be anything from just making sure that they take their medications and eat a healthy meal all the way down to changing soiled garments in a bed.

[00:06:34] So, you know, that's it's such a wide range that it's so many different people would have so many different approaches and concerns about it and know some about what they're doing.

[00:06:46] Fair enough to put pills in a pill box that you got from the doctor and fair enough to cook a good meal.

[00:06:52] But how do you get somebody who doesn't want to be baked?

[00:06:56] How do you bait someone who doesn't want to be baked?

[00:06:58] And that's where you start running into those kinds of problems.

[00:07:01] Right. Right.

[00:07:02] Oh, we could do several podcasts.

[00:07:05] It's just what we've just already talked about.

[00:07:09] Baving without a battle is actually a training program that I think there's so many caregivers need to go through.

[00:07:18] Truly. Exactly.

[00:07:20] That and how to stand someone from a chair or a bed and so on.

[00:07:27] So, yes, we may need to have you back like several times every year to talk about some of these things.

[00:07:34] But let me since we're talking about stress and lines in this hand, let me kind of shift and focus on that.

[00:07:42] So you mentioned a minute ago about most of the caregivers in the home are family members, but they're not all adult children.

[00:07:52] Right. Correct.

[00:07:54] Yeah. We have to remember that there is still a lot of spouse care, spousal care within the home.

[00:08:02] And so we would say that probably though about 40% of the persons who are caregivers are children, the adult children.

[00:08:11] We still have a fair number of friends who are helpful.

[00:08:15] There's an occasional niece or nephew that would be the caregiver.

[00:08:20] So those are much, much smaller numbers.

[00:08:23] But I would say the top two would be spouse and adult job.

[00:08:26] Sure. Sure. When you said 40% being the adult child, I was like, who else would comprise this?

[00:08:33] Right.

[00:08:35] Spouse of course, the spouse, of course would be.

[00:08:39] And I think spouse is first and then adult children are second and then the others kind of fell under that.

[00:08:46] Yeah. Yes.

[00:08:48] So talk about some of the particular triggers or problems that increase caregiver stress.

[00:08:55] You've kind of addressed some of those a few minutes ago, but let's kind of unpack that.

[00:09:02] So the first thing is how much care is needed?

[00:09:06] How many hours of care per day are needed?

[00:09:09] That would be the first thing.

[00:09:11] Again, is it a situation of giving food or is it a situation of being able to get out of the bed and transfer them to a chair or to a toilet or something like that?

[00:09:25] So it's the amount of care that's needed is the first thing.

[00:09:29] So the more care that's needed, the more physical care that's needed, the more hours per day that that care is needed.

[00:09:38] It increases the amount of stress that's associated with it.

[00:09:42] What I talk about are importable things.

[00:09:45] So can you import somebody to give a bath a couple times a week, two or three times a week?

[00:09:51] Yes.

[00:09:52] And so that's a lower number of hours that's required.

[00:09:56] But if someone cannot get in and out of bed, if someone cannot get to the bathroom, then that is a 24 seven job in a 24 seven need.

[00:10:06] And so that's when we start talking about increasing the amount of hours that are needed and the amount of particularly the amount of physical care that is required.

[00:10:17] So that's the first thing is just how much care is required.

[00:10:21] I think the second thing is how acceptable is the carry?

[00:10:27] So how acceptable is your loved one to the care that you need to provide?

[00:10:31] Is this an argument of persuasion or an all out fight?

[00:10:37] So is it a situation where I can get up, I can walk, but they really are a little more unsteady and need somebody there with them?

[00:10:47] Or is it a situation where they don't want to bat today?

[00:10:52] And so then that could be an all out fight.

[00:10:55] And so those are the kinds of things that we're talking about.

[00:10:59] So how much does the person want to be cared for is another part of it.

[00:11:07] I think I need to go back though, when I start talking about how much care, how many hours of care, we have to recognize that that can create an isolation.

[00:11:17] We are social beings.

[00:11:20] If we are now in a position where we're isolated from society because of the number of hours that we need to spend one on one, then that also is a stressor and creates what we call a caregiver burden.

[00:11:35] Right.

[00:11:36] So and then, of course, cognitive impairment and dementia are so prevalent in those who need care.

[00:11:46] And that was actually is one of the biggest areas where we find the stress increases when you are especially when you have had a relationship with this individual.

[00:11:58] So you're a loved one.

[00:12:00] Can you have a conversation?

[00:12:02] You know, again, we're social characters, social beings.

[00:12:05] If we are now caring for somebody one on one that we can't have a conversation with the level of isolation and and stress that that is brings on is very high.

[00:12:19] So dementia increases the caregiver stress as well.

[00:12:23] And there are something like, and correct me if my number is is wrong, something like five million people in the United States who have dementia.

[00:12:32] Not all would be cared being cared for at home.

[00:12:35] But right.

[00:12:36] But just that there are lots of people who are caring for loved ones at home who are dealing with cognitive decline.

[00:12:43] Right.

[00:12:44] Yes, that is a that is an appropriate number.

[00:12:47] And yes, only about I would say right now only only about 20% of people who are over the age of 85 or in some kind of care facility.

[00:13:00] But 45% of people over the age of 85 need some kind of activities of daily level assistance.

[00:13:07] So again, much all of that is being done in the home.

[00:13:10] And that is where you start talking about having people who are increasing the amounts of cognitive impairment in those who are being cared for.

[00:13:19] Well, you know what you have just described sort of checks all the boxes of when my mother was caring for her mother because my grandmother about two weeks after my mother took an early retirement as we call it took to her bed became bedridden.

[00:13:36] And so for the next three and a half years, my mother cared for my grandmother in a tiny town.

[00:13:43] And this was in the 80s way before Internet or any kind of assistance.

[00:13:49] And it was horrible, just horrible.

[00:13:53] So at least at least today we have more access and more access to information and to support online than we did in the 80s.

[00:14:06] But it still is extremely difficult, extremely difficult for so many people.

[00:14:13] Yes.

[00:14:14] And I think, you know, as you were saying that there's support and there's actually so much more on on the ground in person in towns support systems.

[00:14:26] You know, when dementia wasn't really recognized as a diagnosis, it was just the senility of life.

[00:14:34] Then that's that took away the idea of actually needing to do something about it or needing to have support around that.

[00:14:45] When we had multi generational households, like we don't have as much anymore, it was just assumed that one would take care of the other and that everybody in the entire household was responsible for all of that.

[00:15:01] So if you ended up having intergenerational families and multi generational families in the household, grand children did some things that there's not that availability for anymore.

[00:15:15] However, you're right, groups like yours like ACAP groups like the stick center has a memory counseling program.

[00:15:22] There are many, many more programs are out there.

[00:15:25] The Alzheimer's Association always has a support group.

[00:15:29] So there are many more groups that are available for people who are caregivers to be able to get that support.

[00:15:35] Because again, caregiving is an isolating position and isolating job.

[00:15:41] And so you have that person that you're caring for one on one.

[00:15:45] And so who else is going through this?

[00:15:49] That's what the support groups are is to recognize that hey, I'm not crazy.

[00:15:56] I am not one of one, you know, in going through this.

[00:16:01] There are hundreds of people just in my town who are going through this same kind of thing.

[00:16:06] And then when we talk about the millions of people across the across the country who are caregivers in home care, caregivers, family caregivers, then it begins to take on a bigger place in the population.

[00:16:22] And then we start talking about it in a public health standpoint as well now.

[00:16:26] Right, right.

[00:16:27] I am so glad you are talking about the isolation because I think a lot of times people don't recognize how truly impactful just that part is.

[00:16:39] And that's in addition to the physical and the emotional and the financial piece of caregiving.

[00:16:46] It just kind of keeps layering on top of each other.

[00:16:52] Yeah, and so that's why we recognize within the memory counseling program at the Sticks Center, we actually have programs for the person.

[00:17:02] This is particularly for people with dementia but for the person with dementia as well as for the caregiver in separate groups where the caregivers can communicate

[00:17:11] and talk about where they are in their journey and their marathon as you put it.

[00:17:16] And so understanding that when I give people references and things like that, I said, don't read ahead because you need to understand where you are right now, what's going on.

[00:17:27] Understand that there could be future problems but being in the moment and working where you are right now is very, very important.

[00:17:37] But as we talk about, we do need to create that line in the sand to understand what might happen in the future.

[00:17:45] Oh, what a segue.

[00:17:46] Okay, so let's talk about that line in the sand that enough is enough.

[00:17:52] Yes.

[00:17:53] When how talk about what you encourage caregivers to do relative to the line in the sand.

[00:18:05] So let me give you a couple of examples.

[00:18:08] So let's just say that and I will go with the spouse as well.

[00:18:13] Let's just say that there's a six foot tall gentleman who had a stroke, who has difficulty getting in and out of bed, who then has another small mini stroke and now the entire side is paralyzed.

[00:18:27] It's easy to kind of be in the hospital with the doctors and saying the physical therapist said that somebody really has to pull on this person, really help them lift them up.

[00:18:40] And so if the person who's been caring for them is my stereotypical five foot, 650 pound lady daughter, we recognize you're not going to be able to do that.

[00:18:53] However, if it's not a sudden event like a stroke, and it's just that slow meandering decline.

[00:19:03] Again, it's like the it's like the frogs in the water that you just slowly turn the heat up.

[00:19:11] That stroke that stroke was hot water.

[00:19:14] We need to make a plan we need to create a plan right now.

[00:19:17] That's slowly increasing heat.

[00:19:20] We get to a place where all of a sudden we are so overwhelmed and I say we as caregivers, we're so overwhelmed and not sure what to do or where to go next.

[00:19:29] And that's when caregiver burnout occurs, which is a medical diagnosis.

[00:19:36] So before getting there, actually sitting back and this is where the support groups are very happy.

[00:19:43] What's the next step?

[00:19:45] What might be coming next?

[00:19:47] It depends on what the diagnosis is, what the problem of the person needing care is.

[00:19:53] Is it a dementia that we're expecting to continue to decline?

[00:19:56] Is it a heart failure that we're going to need more and more problems with walking because of shortness of breath?

[00:20:02] So it really depends on what's next.

[00:20:05] And so what I tell people again an example, if you have a loving son who's taking care of their mother,

[00:20:12] when that mother can no longer go to the bathroom on her own,

[00:20:16] that might be a situation where the son says, that's my line.

[00:20:22] I'm not going to be taking my mother to the bathroom and we can fully understand that.

[00:20:28] But you have to think early enough, where is that?

[00:20:33] I had a family who said, when mom can no longer recognize who I am and therefore doesn't see me as a family member.

[00:20:41] I don't know that I could handle that emotionally.

[00:20:44] So that might be the line.

[00:20:46] Every person is going to have their different line, but you have to think through it.

[00:20:50] Is it a physical line?

[00:20:52] Is it a cognitive line?

[00:20:55] Is it a, when I have to do more hours?

[00:20:59] Because again, we have to recognize when we're talking about adult children of aging parents,

[00:21:05] we're also many times talking about adult parents of young children.

[00:21:10] So that thing that we call the sandwich generation.

[00:21:14] So when we start talking about it, how many hours is it going to take to provide this care?

[00:21:20] And is that going to take away too much from the rest of what I have on my plate?

[00:21:26] So really sitting and thinking about that.

[00:21:29] And the reason to do that, and it's not because I think that people just can't do.

[00:21:37] It's really about taking care of self because it can really, really become a medical diagnosis

[00:21:45] and therefore not helpful to the person requiring care if the caregiver gets to a burnout stage.

[00:21:53] This is that airline put your own oxygen mask on first?

[00:21:58] Yes.

[00:21:59] Yes, absolutely.

[00:22:01] So I think when we talk about the line in the sand, it's just a little bit different.

[00:22:05] I'm going to talk about the oxygen mask on first two as well.

[00:22:08] But if you do the line in the sand, if you recognize I cannot do X, I will not be able to do this.

[00:22:16] Whether it's a matter again, like I said of getting somebody out of the bed.

[00:22:21] If they are bed bound, I'm not going to be able to do the in bed caregiving.

[00:22:27] And so the reason to set that is because when you get to that point, if you have not said it,

[00:22:35] you don't know when you get there.

[00:22:37] And you've just got that hot water turning up just a little bit more.

[00:22:42] If you set that line before you get there, then when it's there, it becomes a little less emotional

[00:22:51] because you've made the plans for it.

[00:22:54] You see it.

[00:22:55] I had someone to tell me when I got married, something's going to go wrong.

[00:23:01] And you just have to deal with it when it gets there and just recognize it.

[00:23:06] And so when my veil wasn't there when I wanted it and had to borrow someone else's,

[00:23:11] I said, oh, this is what's going to go wrong.

[00:23:14] I'm fine.

[00:23:16] And so it creates the opportunity to take the high tension emotion out of the decision

[00:23:23] if the decision is made early.

[00:23:26] And that's what we really need because there's obviously, because there's the love that's there in the caregiver

[00:23:35] that when that time of not caring anymore, there's a lot of things that go along with that.

[00:23:41] There is guilt that goes along with that because we have, unfortunately, we have said the never word.

[00:23:47] I will never whatever dot, dot, dot.

[00:23:49] I will never stop this.

[00:23:51] I will never abandon.

[00:23:53] But then we start using all of these internal words that just really, really bother us as a person.

[00:23:59] I will never place mother in a facility.

[00:24:02] I will never stop caring for her.

[00:24:04] I will never.

[00:24:05] But if we really sit back and think about what we can do physically, mentally and emotionally,

[00:24:14] then when we get to that line, we recognize it and we move forward.

[00:24:19] And that's the goal.

[00:24:21] That is the actual only reason to draw that line in the sand.

[00:24:25] I think when we're talking about put your own oxygen on all along the way, we need to be remembering that.

[00:24:32] So caregivers need to be remembering.

[00:24:35] I'm so excited that the airline industry did that.

[00:24:39] So now we can start talking about it being the caregiver thing.

[00:24:42] It's just this is just what you do because again, the isolation of it, the stressors of it, we need outlets.

[00:24:51] Caregivers need outlets.

[00:24:53] That's the oxygen mask, whether it's a support group, whether it's a shopping spring, whether it's the week that sister comes in.

[00:25:01] And takes care of mom and I go to the beach just to lay down for two days.

[00:25:06] Or is it where a friend comes in and watches mom for two hours just so I can go get my fingernails done?

[00:25:12] Yeah, so we need to be able to have an understanding that on a regular basis, we need to prioritize caregivers need to prioritize

[00:25:22] some time for themselves each and every day.

[00:25:26] And so that's also a line.

[00:25:28] Let's plan that.

[00:25:30] That's something to plan.

[00:25:31] Is it that next Thursday, someone's going to come in from 10 to 12 and I'm going to go get a pedicure?

[00:25:40] Or you know what?

[00:25:43] I need to go to the doctor because that is another thing that caregivers so often neglect is their own medical care.

[00:25:52] So we actually looked at a survey that talked about only 40% of people who are caregivers have been to the doctor to get a physical in the last year.

[00:26:04] That is just painful.

[00:26:08] Oh, it is.

[00:26:09] I'm so glad you're talking about all of this because you are how you are describing it sort of normalizes it and basically says it's not just

[00:26:21] okay to do this.

[00:26:23] You know, take heed caregiver.

[00:26:25] It's okay to do this.

[00:26:27] But what you really are saying is it is important to do this.

[00:26:32] It is important to prioritize yourself.

[00:26:36] It is important to take care of your own self physically, emotionally, you know, financially in every way that is all important to do.

[00:26:51] It is.

[00:26:52] And you know, because I hear that word important, I actually want to take it up a notch and say it is imperative.

[00:27:01] Good.

[00:27:02] It is imperative that caregivers take care of themselves because what we don't want is for the caregiver to have a problem that then takes them away from the

[00:27:17] caregiving that could have been prevented.

[00:27:20] Do you suggest that families talk together and talk with the care recipient and determine, you know, or at least explore what would they want done?

[00:27:36] For example, your illustration of the adult son who is caring for the mother with the mother want for the son.

[00:27:45] I guess what I'm thinking is that it would be so helpful for the loved one, the care recipient to be able to say, oh, my dear one, I don't want you to do that.

[00:27:59] Is that a good thing to do or not to have that conversation with the loved one?

[00:28:09] Yeah.

[00:28:10] It's a very good thing to do.

[00:28:14] I think that it is very difficult.

[00:28:18] We as human beings have worked so hard and so long to become independent that just the conversation of not being independent is fraught with difficulty in having.

[00:28:32] Good point.

[00:28:33] So I think that approaching it is a very, very good thing.

[00:28:39] So what would, as things decline, and but that's hard to say because if you have someone who is able to really talk through that conversation, they oftentimes are not at a point of needing care.

[00:28:54] And so being able to forecast what care they would or would not want from a loved one is a difficult thing.

[00:29:03] It's definitely difficult.

[00:29:04] Yes, talking together.

[00:29:07] How is this going to work?

[00:29:09] Talking together with all the possible people who could be unpaid caregivers and then looking at the finances.

[00:29:18] Can we have a combination of unpaid and paid caregivers and that way decrease the stress of the unpaid or family caregiver?

[00:29:27] So I think those conversations are very, very important.

[00:29:31] I think that they are difficult to have when you don't know what's ahead.

[00:29:37] So yes, it would be, oh no, I don't want to move into your home.

[00:29:43] I'd rather stay in my home if someone can come here.

[00:29:47] How realistic are these things?

[00:29:50] I have a home that has only bedrooms upstairs.

[00:29:55] Is that a realistic thing for someone who, if I need to begin to caregiving for my mother or for an aged parent?

[00:30:06] So those are the kinds of things I think that are reasonable to come up with early.

[00:30:11] What are the finances associated with the possibilities of care?

[00:30:16] What are the housing situations associated with the possibilities of care?

[00:30:22] And yes, would you rather live with Martha or Mary?

[00:30:27] I think that those are conversations that very much can occur early.

[00:30:31] When you gather all of the possible caregivers though, that's when the conversations can be, I can do this but I can't do that.

[00:30:40] I have a bad back, I have bad knees, I have heart failure.

[00:30:45] And then things change when medical situations change if there's a need to readjust who's going to be the primary caregiver, if that's a possibility, if that's an option.

[00:30:58] So those are the conversations definitely to have as early as possible.

[00:31:02] And when you're saying that I'm envisioning a family, a family that has several children, several adult children coming together and talking again.

[00:31:13] This is the idea and in a whole lot of families this kind of conversation doesn't work very well or doesn't work at all.

[00:31:21] Unfortunately, yeah.

[00:31:23] Unfortunately, very, very unfortunately.

[00:31:26] But even if there can be that conversation, then each of the adult children can say here is my line.

[00:31:35] Here's what I can do and where I can't do.

[00:31:39] And then you can kind of puzzle piece those together and come up with a plan for mom or dad or loved one that is so much richer and fuller than anyone individual.

[00:31:55] Particularly if it's kind of struggling not only with the loved one but also potentially struggling with all the loved ones.

[00:32:08] Yeah, I have seen this a lot several times.

[00:32:13] I have.

[00:32:14] I've seen it so many times.

[00:32:17] And what I want to say to caregivers particularly is if there are a number of adult children in existence and there becomes one person who's the caregiver, your family is not more dysfunctional than the family downstream.

[00:32:35] Okay, but if you have a family where there is opportunity for a number of people to share in that.

[00:32:45] Be thankful and absolutely have a very frank conversations about who is best equipped to do what part of it.

[00:32:55] Absolutely.

[00:32:56] Right, right.

[00:32:57] But if it doesn't work, not alone still because I have had to have conversations in my office about that as well.

[00:33:06] When there's a number of individuals but it turns out to be one person who's the caregiver.

[00:33:13] But the conversations can still be things like, well, when you take your vacation, you know, I'll take mine and you know it doesn't have to be that I'm going to take 20 hours a day and you're only going to take four hours a week.

[00:33:26] You know, it could be any combination of things but the more people that are able to be involved in the care recipient really benefits really benefits because if they're missing some of their children because they're not able to be participant in the caregiving.

[00:33:45] That's a that they feel that they really, really feel that absolutely.

[00:33:50] Absolutely.

[00:33:51] Yeah, it's that is a win-win for everyone.

[00:33:54] It is.

[00:33:55] It really is.

[00:33:56] So are there some particular things to consider or strategies for how and when caregivers would make the decision about this is my line?

[00:34:08] You know, what kind of suggestions or advice do you have or how to get to that point and how to make those decisions?

[00:34:16] So I oftentimes do push that back to a conversation with the care recipients physician with not necessarily a timeline because I will say that we physicians are very difficult or very poor at giving timelines.

[00:34:34] But what's next?

[00:34:35] What can we expect next?

[00:34:37] I think that's the main question to ask the physician involved in the primary problem.

[00:34:44] If it's a dementia problem, then you know, be their primary care or geriatrician if it's a heart failure issue, you know, or a breathing issue than talking to those specialists.

[00:34:57] But definitely finding out what's next?

[00:35:00] What can I expect next?

[00:35:02] And that's when you can sit down and begin to draw that line in the sand because the line oftentimes comes with the knowledge, the knowledge of what are the possibilities?

[00:35:13] And when you know what those are, if it's dementia, is it a matter of this person is no longer going to be able to get and manage their own bathroom needs, whether that's going to or taking a bath,

[00:35:29] whether they're going to have a point where because the stroke and they're not getting up, they're going to become bed bound or more bed bound.

[00:35:39] So I think that that's the question is what is next?

[00:35:43] And whether that's a situation again of going to a support group where you've got somebody whose family member is at the quote, next stage and understanding, hmm, I can do that.

[00:35:56] They're doing more than I think I'll be able to do.

[00:35:59] I think that needs to be my line.

[00:36:02] I talked about a line in the sand with a daughter a couple of years ago.

[00:36:08] And then I had, she had been in and out of an assisted living and and I called one time and I said, coming home, she says, you know what I reached?

[00:36:19] I reached my line in the sand.

[00:36:21] So we made a decision.

[00:36:23] And so it was really so gratifying to understand that that really works.

[00:36:28] So no, there's no question about it.

[00:36:30] If you draw that line and, you know, not like the childhood line in the, you know, where somebody tries to jump over it, you know, but really truly understanding where that line is then when you get there, it is so much a can so much be a less emotional event that I think that is so very, very important.

[00:36:53] But remember, yes, absolutely.

[00:36:56] But remember daily here for yourself and regularly check in with others.

[00:37:03] Yeah.

[00:37:04] Good. Good suggestions.

[00:37:06] So are there some other things that that caregivers can do or should do before they reach that burnout point?

[00:37:15] Or or maybe even one of the questions is how do we know when we have reached that burnout point and something needs to happen before we get into a crisis point with it?

[00:37:28] Yeah.

[00:37:29] So there are so many things that we can externally look at their point to it.

[00:37:36] So one is depression of the caregiver.

[00:37:39] So depression and not about the fact of the situation.

[00:37:45] If it's a child who's taking care of an aging parent, of course we're going to have what I call prematory grief, which is we grieve the relationship that we had with this person.

[00:37:59] We grieve the fact that Superman or Wonder Woman are no longer in our lives.

[00:38:04] But that's different from depression.

[00:38:08] Depression is really more that internal feeling again where you begin to feel like I am not worthy.

[00:38:15] I am not able.

[00:38:17] I am not a capable person and have to separate that from the caregiving duty.

[00:38:25] You know, I am not a capable individual is a depressive statement.

[00:38:31] I can't reach over and pull this six foot tall man out of the bed.

[00:38:36] That is totally different and you can grieve the fact that you can't provide that care.

[00:38:41] But when you feel begin to feel that internally you are less than that is depression and that is a trigger.

[00:38:51] That is something to recognize anxiety.

[00:38:54] You begin to an activity or wake up in the morning and begin to dislike, dread or worry about the next thing you're supposed to do in the caregiving cycle.

[00:39:07] That anxiety is absolutely something to recognize as a trigger.

[00:39:14] That is another problem and is on the way to caregiver burnout.

[00:39:21] Depression, anxiety, those are two big things that we recognize are on the way to caregiver burnout.

[00:39:30] Those things are oftentimes side products of not doing the things in the beginning.

[00:39:37] So not finding a support group, not finding respite, not finding others who are in the same situation.

[00:39:46] Those are times when we start beginning to have the depression and the anxiety that are two really big pointers towards caregiver burnout.

[00:39:56] But that's really good to recognize that not being able to do something or drawing the line and saying,

[00:40:07] I can go to hear what's ahead and be on the go.

[00:40:10] That is very different from the other.

[00:40:16] So recognizing the difference of the two can be really helpful.

[00:40:22] Absolutely, absolutely.

[00:40:24] That's exactly what I'm saying is that recognizing the difference between the act and the internal feeling of who the person is, who I am, who the caregiver as a person is.

[00:40:37] The depression and anxiety, those are definitely different but depression and anxiety are two big things that need to be warranted against.

[00:40:45] And being a caregiver is, I had said earlier, a marathon.

[00:40:52] You called it a journey which it is.

[00:40:54] But it also is a bit like that drop of water or that 10,000 paper cuts kind of thing.

[00:41:06] Meaning that as a caregiver we are dealing with so many different things all at the same time.

[00:41:17] And it can be really difficult.

[00:41:19] So to recognize, you know, is this merely my inability to do the activity?

[00:41:28] Or has this moved into something really deep within that I need to be aware of?

[00:41:37] Precisely.

[00:41:38] Yeah, that's really important to do.

[00:41:42] Dr. Simmons, this has been so good, so helpful.

[00:41:49] You're stage in sight.

[00:41:53] Thank you for what you have done with this and the comfort as well as the guidance that you are giving to our caregivers, as well as all you do through the stick center at Wake Forest.

[00:42:10] Wake Forest's atrium I guess it is now.

[00:42:12] Yes, absolutely.

[00:42:14] So I got into geriatrics because I recognize the need of the elders.

[00:42:23] This their sage wisdom that needs to be celebrated as much as possible.

[00:42:32] And then the people who care for them are really people who have to me little stars around them and that it is a very large job.

[00:42:45] Again, $400 billion worth of care given by unpaid caregivers every year.

[00:42:52] So people need to recognize how important they are.

[00:42:55] And I think society is finally beginning to recognize them.

[00:42:59] Finally, I remember when I started ACAP 12-14 years ago that there were not...

[00:43:08] We just were not talking about the caregivers at all.

[00:43:11] It was all focused on the older adults and that's great and we need that focus.

[00:43:16] We need that attention but there was nothing being done relative to the caregiver.

[00:43:21] And now there is a whole lot more and I am really glad for that.

[00:43:26] Yes.

[00:43:27] Absolutely.

[00:43:28] Absolutely.

[00:43:29] Thank you so much for being with us.

[00:43:33] Thank you so much for your great information and the comfort that you bring to this podcast, to this conversation, as well as to all that you do in the Winston-Salem area.

[00:43:47] I want to thank you, our listeners also.

[00:43:50] We hope this information will be helpful to you as well as to your loved one, as you care for your loved one.

[00:43:58] We also always want to thank Pace at Home in Hickory, North Carolina.

[00:44:03] They are our sponsor for this caregiver and all caregiver community podcasts.

[00:44:10] This caregiver community podcast is part of the mesh network of online shows and podcasts.

[00:44:16] We record one new ACAP podcast each month and we address a wide range of topics related to caregiving and advocating for older adult loved ones.

[00:44:28] You'll find all of our podcasts on any platform where you listen to podcasts, again under the name of caregiver community.

[00:44:36] You will also find our podcast on our website, www.acapcommunity.org.

[00:44:44] But we hope while you are on our website, we hope that you will take a few minutes and learn more about ACAP, our educational programs and our local chapters.

[00:44:54] And if there are other topics in particular that you would like for us to address as a podcast, please do let us know.

[00:45:01] There's a way on the website to do that.

[00:45:04] Dr. Demons, again, thank you so very much for being with us today, giving us such great information.

[00:45:12] Stay well everyone. Bye for now.

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