Family Caregiving

with Melissa Smith-Wilkinson &
G.J. Hodson
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G.J. Hodson is a social researcher and former dementia caregiver. After five years caring solo for a beloved grandfather, G.J. enrolled in graduate school to research isolation and inequality for caregivers, graduating into a pandemic with a Master's in Sociology and a certificate in Multicultural Women's and Gender Studies. G.J. has been a volunteer for the Caregivers of Dementia Wellness Retreats and other organizations since 2017, facilitates two DFW support groups for dementia caregivers, and recently began freelancing as a care coach.

 

For more info about G.J.'s work and service, https://theoriesofcare.home.blog.

Melissa Smith

Caregiver Wellness Podcast is a podcast that is sponsored and supported by https://www.caregiverwellnessretreat.com/. We hold caregiver retreats for caregivers of Alzheimer's and other dementia, usually in person. And we are online now at this moment with two full retreats. If you go over to our website, you can see the OnDemand Retreat and the Instant Access Retreat, and our third retreat coming up on January 29th. So, whether you're watching or listening to this before January 29th, we would love for you to sign up and register. And if it's after, you will still be able to have access to it when you click on virtual retreats right there in the top menu bar of our website. We can't do this without you. So, we are so grateful that you are there supporting our efforts, listening, desiring to learn. When we grow together that's when we really grow. And we are so thankful for that.

 

Melissa Smith

 A prime example is our guest today, G.J. Hudson, who is from Arlington, Texas. And he has been a long-time volunteer and former caregiver who originally came to our retreats in 2016. And we're just so excited to share his progress and journey as he's now a dementia care specialist and works with caregivers to better understand how they can continue to advocate for themselves and for their loved-one in this dementia caregiving process. It can be a really challenging one and he understands all of those aspects. We're excited for you to listen. I am especially excited for you to hear this last part. He gets really excited and so do I, when we talk about a strategy or resource for evaluating the caregiver. So, bringing someone from the outside or even a caregiver that is within the family, how do we know that we're still on track? And do we need to get additional help and resources?  And what are the things to look for when you're thinking about the quality of care? I am absolutely so excited about this chat and I know you will be too. Feel free to leave some comments and a review, that helps us continue to reach other caregivers. We do this all for the love. So, our resources are free for caregivers. All of our retreats online are free. If you choose to donate, we have an option for that. But we certainly freely offer and we're excited to have you join us today.

Melissa Smith

Hi everyone, welcome to Caregiver Wellness podcast. We are so glad that you joined us today. I have a really amazing human who is our guest today, and I am so honored that G.J. has made time for us and is able to be with us today to share the wisdom and the experience that. -- I mean, there's so much that you have gleaned, G.J., over the years of what you've done. And also, I'm really excited to talk about what you've done with school and how you dove into caregiving, and what inspired you to do that. So, we are so looking forward to our conversation with you today. I feel really, really blessed to have you. Before I announce all of your accolades, I'm actually going to ask you to ground us and center us for a moment. So, if you wouldn't mind sharing just a minute or so of what you normally do to relieve stress and arrive in the moment. Would you do that for us?

 

G.J. Hodson

Absolutely. I didn't even realize I was doing this for years and I didn't realize what a comfort it had become, probably until towards the end of caregiving or when I became a student. But it turns out that tea is my centering ritual. It's not just drinking it. It's not just having the right flavors in the home, although those things are very important to me. But, as a student and before that as a caregiver, I would spend so much time just kind of sitting in one place, either really focused on one task or waiting for something to happen, that getting up and out of that space and just being present for a moment and standing by the kettle and waiting for it to get warm and trying not to take on too many other responsibilities while I'm waiting. And thinking carefully about what flavor I want to use; it just became ritualistic and very calming and very centering. So, if there are any tea fans out there, I highly recommend when you find yourself making tea, just take the moment that is given to you and be present for that moment. And that is my big de-stressor

 

Melissa Smith

I think that's absolutely perfect. I don't know how many can relate to. --There's something, a task that you do that's almost mindless. It's kind of like, have you ever gotten in a car and you drove yourself home and you arrived home and you don't remember how you got there? Your body just took over. Right. It's just one of those things where it already somatically knows. You've done it so many times that it's that on route. So, to me, making tea and coffee is one of those things. I can't imagine a day without either one of those. But if we can pause and really be present with the process. Another mindfulness tool that reminds me, is just something as simple as washing your hands. Like what is the feel of the water? And even right now. -- So, as you're seated in the chair, one of the things that I do when I arrive is feel my feet on the ground. That's it. Feet, shoulders drop, and then I've arrived. So, if you haven't tried that, noticed where your feet are. Notice where your shoulders are. And see if that softens something. So, thank you G.J.

 

Melissa Smith

So, I'll read your very impressive bio. G.J. Hodson is a gender-fluid researcher, facilitator and dementia-care coach. You are also a solo caregiver to your grandfather, and that's how we met. And you recently have graduated. --I love it. They graduated into the pandemic. --With a masters in sociology and a certificate in multicultural women's and gender studies and a forthcoming book chapter, which I'm excited to hear about. She's been a volunteer for several organizations since 2017and facilitated groups and presenting specialized topics. And you're zooming in from Arlington, Texas today. We met, actually, you were currently a caregiver to your grandfather and drove, --so the distance from Dallas to Houston is 4 hours? And especially to Fulshear it's further?

G.J. Hodson

Yeah, something like that.

 

Melissa Smith

Something like that, so that commitment to come that far for a single day to learn as a caregiver and then you came back subsequent years as a volunteer and this last year, you were there for summer. So, I love that it's come full circle. And indeed, you've been one of our first caregivers that has come back as a volunteer. We have several of us now, which is really quite beautiful and amazing. I'd love for you to share what sparked your interest in --because your studies were specifically for caregiving. What made you want to go dive in the deep end of that? A lot of caregivers, when they're done caregiving, that's not their calling.

 

G.J. Hodson

Yeah, I've known other caregivers who kind of needed time to process once the experience was over. And I think to a professor my first semester who talked about how people go into sociology to process their own traumatic experiences. And for me, it was certainly burnout. It was caregiver burnout, it was isolation. Those things dramatically changed. -- I like to say it literally changed who I am. I changed my name. I just, I interface with the world as a completely different person after the experience of caregiving. And I wanted to understand that and I wanted to pay it forward. I knew that as a younger caregiver, I'd had experiences that were not being documented, were not being talked about. And even during my time as a caregiver, I knew that the demographics were shifting and there were going to be more younger caregivers. And I wanted to get out there. I wanted to understand my experience and I wanted to use that to guide further research, and it turned out to be very accurate. I had no idea that, I think it's, a quarter of millennials as of 2015 where caregiving. And I'm right on the millennial, gen X cusp there. So, I was one of the younger caregivers, and younger caregivers are becoming more common as the aging population increases. More and more children and grandchildren are becoming caregivers at a much younger age.

Melissa Smith

Yeah, the sandwich caregivers really, right?

 

G.J. Hodson

Those too, but sometimes there's no intermediary generation. For my family, my mom kind of came around once a week to watch a football game with my grandfather, but she wasn't really involved in his care. It was all me.

 

Melissa Smith

Well, that leads me to --we were going to talk a little bit about family and specifically what caregiving taught you about family. So, this is actually-- I don't know if you remember in most of the conversations, whenever we do the big Q&As in our in-person retreats, there was always a question about-- someone has a family member and cannot get on board, who disagrees with the primary caregiver. And they just are at-- most of them are at-- their wits end.

G.J. Hodson

Yeah, I have a strange envy for the families who have that cantankerous relative who wants to be involved but doesn't agree with the choices that are being made. My experiences were much more no one showing up. And it was a bit more complicated because my grandfather was actually chosen family. He wasn't related to me by blood or marriage, but that relationship had been there since I was born. So, it's not like my brother and my mom didn't have that familial connection with him. So, when I facilitate support groups and when we talk about that family member who won't get on board, sometimes they need to see it for themselves, a lot of times there's a reluctance to recognize how far along a person with dementia is. And they don't recognize that people with dementia can be incredibly good at masking, they're not even aware that they're doing it. And if you only spend 20 minutes with them, you're seeing them at their best. They're self-conscious. They don't want to be impolite or difficult to communicate with. So, you'll get a lot of smiling and nodding or relying on tics that you never even knew were there but they may have been doing this for 10, 15 years. Some people have been doing this their entire lives because they were surrounded by people that they had to please and they just sort of fall back into that pleasing mindset of giving you what you want to see. So, a person in that situation, they really need to spend three or four hours, or three or four days with a person and really get a sense of where they are, because a person with dementia is not the same from hour to hour, or from day to day. And then, when they want control, I think that you need third parties to come in. You need another relative or a friend of the family or someone to come in --and maybe a professional from an organization who works with dementia care --to come in and say this is where they're at and this is the level of care that they need. And to make sure that the person who is resisting knows where the power of attorney is, where the family decision making is, and that at some point old family dynamics are not going to get you through this. It isn't efficient and appropriate unless every person is on board and they can agree the vast majority of the time. It is more appropriate to have that one central decision maker, not just because it makes the decision making easier, but because people with dementia, as they progress, likely fixate on that one person and that becomes their person. And they may even forget who that person is but they know the face and they know the comforts that they see when the person who fixes things shows up for them. And it's just in their best interest and everyone else's best interest if that person is one centralized, devoted caregiver. And everyone else needs to support them in whatever ways that they can.

Melissa Smith

Yeah, and that's hard. It's so hard. I know from my own personal experience being long distance, I would only pop in a few times a year. And so, I would see the progression that my dad, who was my step mom's primary caregiver, he couldn't see it. He just, he saw little things slip away, but he couldn't see the vista that I saw that was magnanimously different each time I came. And so, to your point, having an objective third-party person, whether it's a dementia care specialist, where it's a trusted and valued friend, someone else who's seeing something from a perspective. Where if you're seeing only things a certain way to make sure that, you know, that you are staying on top of it, because it's so easy to lose perspective.

 

G.J. Hodson

Absolutely.

 

Melissa Smith

And just get wrapped up into the stress of it. That's one of the most challenging things that I saw. So, I'd love to... yeah, go ahead.

 

G.J. Hodson

I think it's also important for the wellness of the caregiver that the family be aware of what's going on and be able to check in and monitor. I actually know of multiple families who've been through the experience where the caregiver was covering for the person who was sick and didn't let the family know how sick that person was, and they ended up dying before the person had gone through their entire process. They worked themselves to death. And it's such an awful thing to see. And then the rest of the family crawls in and has no idea how bad it is. They have no idea what they're in for.  This situation will make or break families. You really find out where the strengths and weaknesses of family support system are.

Melissa Smith

So, how would you suggest a caregiver cultivates that family support, whether it's actual family or chosen family? How do you-- where do you even start?

 

G.J. Hodson

I tend to favor blunt communication where it's possible. We can't always be diplomatic and we can't always wait for someone to come around. Put it out there. This is what's going on. This is where it's headed. We can all get on board together and try to take this journey together. But I think it's also important --and I think caregivers tend to be very compassionate patients, maybe overly generous personalities. But at some point, you also have to know that you have the right to not wait for them and you have the necessity sometimes to just move on without them. That was one of the hardest things for me. I kept boxes of receipts because I was terrified that my family was going to think... Well I was fortunate enough that I didn't have to work while I was taking care of my grandfather. So, we were kind of living off of his pension and it just barely lasted the rest of his life. But we, I was saving every receipt of every dollar that I spent so that my family didn't think I was coming in here and swindling him. But then when it was all over, I had boxes full of receipts and no time with my family. I didn't actually have a way to communicate with them about what I was going through and I realized that was just kind of a crutch that was making space for them that they weren't really going to occupy.

Melissa Smith

Wow, that's a really poignant thing to say. And... As you're looking back at that person who you were in the midst of caregiving, now in hindsight, looking back, what advice would you give who you were back then? You know, you'd still save the receipts, but what else? I mean, what is the key thing? And I don't want to use the word regret, because I think you and all caregivers are doing the best they can in the moment that they're in, hands down. It is not a task for the faint of heart. It is one of the hardest jobs, I think, in the world, especially the caregiver of dementia.

 

G.J. Hodson

That's one of the first things is to not regret is to know that giving our best effort --you know, they're safe, they're cared for, they are loved. We can read ahead in the books and we can put hours and hours into scenarios that haven't happened yet. But at the end of the day, it's most important is can we be present with them? So, if I could go back and tell that younger version of myself, I would have told myself earlier, don't wait for people who aren't going to show up. And I would have said connect with other caregivers earlier and more often. I'm a bit-- I praise, I have nothing but praise for the support groups that I was a member of and for my attendance of the wellness retreat in 2017. Oh no it was late 2016. And those things are important but I should have been doing things like that much earlier. I trace back where about once a year I would take on one new layer of self-care and each one of them could have started a year earlier. At least.

Melissa Smith

I think-- and that-- it speaks to the essence of kind what we're about. And not being a support group, because there are so many-- if you are listening and you are not plugged into a local support group. Now, of course, the world is wide and broad and you can belong in a support group across the nation, no matter where you live. However, I will say, I strongly feel that there's value in figuring out a support group. Even if you are in one that's a national-- find one that's within your 20, 15-mile vicinity. So, when you need someone to drop a meal to you, or you actually need a physical body to help you in an urgent situation, that you can find someone to call on. And I think that is really key and also because we focus on self-care, as opposed to dementia education. Finding those resources that can give you the latest, like what kind of, you know, --I was looking at. In fact, I'll post the link to it. An amazing video done by a caregiver. She's not represented by anyone, but she listed the exact brands of depends, of all of these different things that she uses as a caregiver, because she's done so much research and it's current. And so, I think some of those things that sort of boggle your mind, you hope you never have to face, you actually will. And if somebody else has already done the legwork for you, you find out those kinds of things from a support group. Yeah, I would... Go ahead

 

G.J. Hodson

Finding a local resource also helps you with legal and resource matters of, if you do need to call on an area agency on aging or if you need to change some paperwork, you're much more likely to have someone who recognizes what you're going through and can give you more exact answers in your geographic area.

 

Melissa Smith

 Absolutely, what we --when we have our event on the 29th, so whether you're watching this now or after the event, you'll be able to access it on our website. We've chosen it to be live from Houston, so we've picked leaders and speakers from that particular vicinity who have specific resources laid out. There's also some national information but those kinds of things are just, I think, invaluable. I'd love to talk a little bit, G.J., about your degree. You talked about caregiving as an identity. Can you talk a little bit more about that and what that means?

 

G.J. Hodson

It's something I'm still developing, but it's definitely something that speaks to me. I am no longer an active caregiver in the ways that I was when my grandfather was alive. But I, it's almost a philosophical or spiritual identity at this point that I see in myself that I want to approach things as a caregiver, a post caregiver. And it's something that I want to research also is just how do people's lives change, especially younger folks? I think our society frames, if it talks about caregiving at all, it's always about spouses or like adult children who are kind of getting close to retirement, to having to take care of their older adults. But there's so little out there about the experience of taking years off of your career to become a caregiver and then re-entering society, still having to make your own money, still having to have a lifetime career trajectory, build your own retirement. I was completely unequipped for those things. And so, that's where I've at least been looking at it as an identifier. As an identity, I think --I'll tell you towards the end there where I really tried to go was a philosophical place of being so present that nothing else could get into my head. That I couldn't think too hard about politics. I couldn't think too hard about what kind of shape the yard was in, or something like that. It really just became how is he doing in this moment and how am I doing in this moment and how do I make sure that those continue to sustain? I was at such an alert state, I wasn't even aware of it. I think of it as like running antivirus in the back of my brain that was taking more and more resources over the years. But, for most of the time that I was caregiving, I could wake up from just the deepest death sleep, you know. Wake up and within 30 seconds, just by sound alone, I could tell if the power had gone out in the house. I could tell where he was. I could guess what he was doing by where he was and how good of a day he was having, without even getting out of bed yet. And we have, this isn't a small house, but it's not a large house either. Sixteen hundred square feet, about a quarter of an acre of property. I could tell whether he was in the backyard or in the front yard. He was usually raking leaves. He was the most inefficient yard guy you've ever seen, but it made him happy and it gave him something to do. And his body awareness was strong. And he never fell out there. He never hurt himself. He'd just go out there and pick up about 50 leaves, drop 40 of them, and put them in a bag. And that made him happy. And as long as he stayed warm enough, I let him do it.

Melissa Smith

I think you brought up a really good point. I think caregivers, mothers, nurtures, all of your senses become on absolute high alert. There's a lot of sensitivity there. And to your point, one of the goals and visions that I've had is, in terms of circling back to wellness, to address caregivers and really impress the idea that you don't lose your own identity. Maintain something within you, inside of you, that perhaps has nothing to do with caregiving, that is your pocket of joy. And it actually doesn't have to be like oorah joy, like it could just be something that calms you. And it should be a part of your identity that is also healthy, because I think we often go to these things that numb us, that help us tune out, because it just deadens the anxiety, or the lack of patience that we feel, or whatever. But we've got to figure out how do we tap into who we were before we wore the hat of caregiver so that we can maintain or enhance our sense of joy.

 

G.J. Hodson

Yes. And I had --I was fortunate, I did have a support system, it wasn't my my family of origin, but they were like my family while I was caregiving, who would come around every day or two and spend some time with me and keep me human, and help me find those moments of joy, and remind me not to watch TV shows that were too stressful. I found that I couldn't watch melodramas or really tense action films. It was just too much. My anxiety was too high. So not just paying attention to your own mindset, but having people around who know you, who can help you identify "like you're not yourself today, is everything OK? Do we need to shift your strategies a little bit?" And that being a continual, ongoing, loving, supportive process. I think it is absolutely important to have that strong sense of self, but to also allow it to be flexible and to allow the experience to change you somewhat. What's the analogy of the bamboo that can be bent but not broken, you know? That is what getting through caregiving takes, I think.

Melissa Smith

And not easy. I would love --we've got a few folks that are, that have joined us live and if something has kind of come up in your mind, you are more than welcome to unmute yourself or type in the chat to ask your questions. And I do have one more question for G.J., but if anyone wants to take a moment to do that and can.

 

G.J. Hodson

Should I answer this question that I see in the chat?

 

Kimma

Oh, if you could, that would be great.

 

G.J. Hodson

So, Kimma has asked post-active caregiving, what was the transition from that hyper state like? So, this is the other half of why I went to graduate school. School is not for everyone. Graduate school is not for everyone. And I don't mean that in sort of an elitist way, but I just mean that there are ways of communicating knowledge in the classroom that are very different from communicating knowledge just from a book or just from conversation. I am a person who knew historically that classrooms grounded me and by the end of caregiving, my brain didn't function the same way. I didn't sleep the same, I didn't talk the same. I didn't interact with the world in the same way. And I felt like I had to relearn my mind. So, going to caregiving was a way for me to put off the real world a few more years. Take in a ton of loans, that I have no idea how I'm going to be able to pay now, and reorient, relearn my own brain, because I think differently. I don't have nearly as good of a memory as I had before caregiving. We need more concrete research on this but there are early indications that caregivers are more likely to develop dementia later in their lives themselves. Because we sacrifice sleep, we sacrifice health and we carry levels of anxiety with us for years at a time, physical stress in our bodies and that affects us. Life-course health is finally becoming a legitimate phenomenon. But so, I went into the classroom as a way to see where was my anxiety, what could be overcome, what memory could I get back, and what wasn't coming back. And then forcibly develop organizational systems to compensate, to keep good notes, to keep good filing systems of all the documents and research that I was reading and organize my own thoughts. I don't know how I could have personally, this was my path, but I don't know how I could have done that without. I also within --my grandfather was in memory care for about 15 months, but only 6 months after I moved him out, I realized that I was no longer capable of living alone. I just became completely untethered from time. And I needed people around me, I needed that interaction. And I needed to bring joy back into this house, which had gone from my childhood sanctuary to the workplace of my thirties. And to, it did at times feel like a prison, it wasn't, but it felt like one to me at the time. And finding ways to rejuvenate the home, the space. So, I had the person I was dating at the time, my partner, move in with me and bring her nine-year-old daughter, who is now 12. And we just, we have such a happy and beautiful life here and the home is rejuvenated. And I just feel like I can get through anything because this is my family and this is what sustains me. And they point out to me, like "you're being really forgetful today or are you are you taking on too many responsibilities at once?" Because that is something that I can be guilty of. And I do the same for them where I can. So, rebuilding that-- I mean, my sense of life since caregiving is all about my relationships with other people. And I wouldn't change that, I wouldn't undo that for anything.

Melissa Smith

Well, that is a big, key indicator for longevity. And also, I'm sure you know about the brain science in regards to neuroplasticity. But for those listening, what we know about our brain is that it is capable of creating new neural connections. So, when dementia and Alzheimer's is present, that's a different thing. We don't know the cure yet and we don't know how to halt the disease. But in an active and healthy brain, we do know that we can continue to-- what they say is neurons that fire together, wire together. So, as we begin to create patterns and habits in our lives it helps strengthen those patterns and habits. And so, you have some choices and I love how you've made the choice to rebuild, reconnect, socially connect, which is also a key indicator for longevity of life. It's really, really powerful when, as a caregiver, you choose isolation. And I know many of us cannot not choose that. But you can make the choice of connecting with someone by picking up the phone, by asking someone to look after you when you don't have the ability to do that. So, there's ways that you can connect with people that will make a huge impact. So yeah,

 

G.J. Hodson

Can I add on that one second?

 

Melissa Smith

Yeah, please.

 

G.J. Hodson

Again, when the people you expect to show up, don't show up for you, don't stay home and just resign yourself to that fate. Go out and make new connections, and they can be the smallest connections in the world. My grandfather was kind of well-known in this town, but a lot of the connections that he had in the past didn't hold meaning for him. So, but we went out to eat, even when he was in memory care. I take him out to eat once or twice a week. And we had rapport with regular servers or managers that we'd interact with and to someone who is sitting and losing pieces of their brain every day, just that that familiar smile, just that connection...  I tell people that there were days where it felt like my best friend was the cashier at Jason's Deli. And that's what got us through. And I know it meant as much to him as it did to me to just walk into a familiar place and get those smiles.

Melissa Smith

Absolutely. And then, of course, depending on what stage you're in, how that shifts and how that evolves.

 

G.J. Hodson

We were very fortunate that he was more body aware, so we very rarely had to worry about falls. And he was friendly, he was good natured. He did not have behavioral issues. People may not know this, but those are way more common with frontotemporal dementia than with Alzheimer's and other forms of dementia. So, this is another key element of getting a good diagnosis because some things can be dealt with and some things can't. And having a good doctor, having a good medical support system is going to help you know what is possible and what isn't.

 

Melissa Smith

I completely agree. I think oftentimes people just lump, doctors for lack of a better way or primary care physicians, lump everything into Alzheimer's and there are dozens and dozens of different types of dementia. And to have an accurate diagnosis gives you a clearer understanding. Like you just said, behavior, medication. I mean, it unfolds really a lot of information for you. And then, of course.

G.J. Hodson

Specialists are important.

 

Melissa Smith

Of course, and every situation is different. So, I would love to, we'll keep the questions open just for a few more minutes, if those that have joined us live have one, you can pop on and ask. I'd love to wrap up our conversation with maybe your top tip for any caregivers listening right now. If there is a bit of wisdom that you'd like to share with them through your experience, I'd love to hear that.

 

G.J. Hodson

If I could encapsulate all of the big important lessons, which is probably a 50-point list, but if I could encapsulate them into one...

 

Melissa Smith

I know it is because I've seen it. I've seen the 50-point list.

 

G.J. Hodson

You know what it is? You cannot care about everyone and everything at the same time. You cannot be an advocate for your loved one and for the world at the same time. You cannot take care of yourself fully and your loved one fully and much of anything else. Oh, I just remembered the one regret, the other regret, that I do have from the time of caregiving. In the early days, I wish we'd gotten a dog. I think it would have been great for him and for me also just to have another warm body who was there to offer physical comfort and to set a little more routine to our days, you know. But again, this goes back to that's it. Like don't take on five dogs, don't take on neighborhood watch, don't take on a big activist campaign. These are huge political times, but I couldn't have kept up with this. I had a heartbreaking moment where I was --I'm a very politically active person, and I tried to go to a conference that was just two towns over and I couldn't do it. The logistics and the emotions of getting myself together to go out of the house for an entire day away from my grandfather was just too much. And it broke my heart to do that, but it would have broken me if I had somehow pulled it off and taken on more responsibility than I already had. So, I guess it's just be aware of how much responsibility you're taking up. And every piece of it is optional. I wish more families talked about the need that sometimes a caregiver is not the right fit and you may need someone else in the family to step up or to share more responsibility. But, if you have committed to being a caregiver and you are still well enough to do that, try to minimize everything else, because however much room you think you have in your life, you have less.

Melissa Smith

I think that's a really good Segway to mention that you are one of our speakers at our January 29th retreat and you're talking about the politics of care. And I know one of your key points is exactly that. It's learning how to say no, just outright no. No, that's not something I need to wear or take on and I think that's... It's hard for nurturers sometimes. We put ourselves in the role of thinking that we are the only ones that can do it, or we're the ones that do it best. And so, to remember that, that's not the case sometimes done is better than best. And we just have to be OK with it.

 

G.J. Hodson

Which is also a great strategy in graduate school that they tell you for your thesis or your dissertation. The best thesis is a done thesis.

 

Melissa Smith

Yeah. I... Kimma you had another question and I want to make sure that I say it correctly. Is there a strategy or resource for evaluating the caregiver? And you're talking about a paid caregiver?

 

Kimma

Either a paid caregiver, or the designated caregiver where G.J., you were saying when there's a family member who has been taking on the role of primary caregiver and you said "sometimes things happen, things change." Is there a way to evaluate or to just have a resource or a check in or a process that's just very gently saying, you know, Melissa, you've been doing this for a year now and maybe it's time for a change or something along those lines?

 

G.J. Hodson

I think this is a good question that I've never heard it before. Melissa, let's asterisked this. I want to present on it next year, because I could do 20 minutes, I can do 40 minutes on this easy. OK, but off the top of my head, start with a very baseline understanding of what the caregiver’s responsibility is. It is to keep the person as safe as they can. No one can prevent a person with dementia from falling. No one can prevent a person with dementia from getting scratches. No one can prevent a person with dementia from swallowing incorrectly sometimes. But if these things are happening chronically and no one is talking to a doctor about it, then that converge on negligence. The vast majority of caregivers aren't going to have those problems. The issues that come in of quality of care is are they spending time with them, are they holding their hand, are they spending money wisely and are they getting the medical care that they need? These things are very easily met. It's only an extreme, extreme cases of financial, emotional, or physical abuse that that a caregiver isn't capable of doing what they're doing. That said, if the caregiver themself is getting exhausted, if the caregiver themself is starting to experience major health problems, if the caregiver themself is incapable of sleeping or of adapting to the timetable of the person. We talk a lot about sundowning, my grandfather was sun-upping. He'd get up at one o'clock in the morning, put on his coat and go out and start raking leaves because he thought it was morning. So, we have to recognize that a person with dementia is going to exist in their own timeline. I've even seen some really good theories about how we need to stop thinking of dementia as, it's not a mental illness at all, it's neurological. But instead of just thinking of it as a medical condition, just think of it as a social condition where the person is becomes untethered in time, or untethered from knowledge. And that doesn't mean they're not the same person. Even if there are personality shifts, they're still the same essence of the person there. And a caregiver who can't see that is a caregiver who's going to burn out a lot more quickly. So, we want caregivers to be emotionally capable of keeping up with what they're going through. And as far as hiring professional caregivers, get clear terms of what they do and don't do. A lot of professional caregivers aren't-- they only get a moderate amount of training and so they're really going to be there for more logistics. Don't look too emotional --don't look to professional caregivers for the handholding necessarily, or the socializing. That's really on us. That's really on family, on friends. And it's good to, you know, when someone calls up and wants to check on them, you say, well, would you like to come see them? Would you like to send a letter? Anything that helps them feel less isolated? Caregivers get incredibly isolated, but the person with dementia can be even more isolated, because people don't know how to interact with them anymore. So, working on those resources, I think makes it easier to just have a sense of is the caregiver sustainable? That's really what, that's all families should ask. Are the minimum needs being met and are they surviving it? Are they capable of continuing to do this for an extended period of time?

Melissa Smith

I would say, like you said, sustainable surviving in a healthy way. That it's not toxic for those people around them. I mean, one of the simplest things that you can do as a family caregiver is making sure that communication is happening, because you can never find out this information unless you guys are all communicating. And there's lots of apps out there for that. I mean, something as simple also as a Google doc where you're recording, they're essentially feed, wake, sleep, medication and other information, maybe even a photo. A lot of people are using--oh, I forgot the name of the app- Marco Polo, I think is where you can leave video messages for the next person and you can show them what you did and where you put things.

 

G.J. Hodson

This is where we can borrow something from marketing is meet people where they are. If the entire extended family who wants to stay involved are all on WhatsApp, don't worry about posting on Facebook. If they're all on Marco Polo don't worry about using Signal. But at the same time, the caregiver has a say in that also. And if the caregiver doesn't have the bandwidth, the mental energy to take on new things, either everyone else goes without or you find a volunteer in the family to be the liaison, because we don't think about how easy it is to segment off some of the responsibilities that caregivers take on, which tremendously reduces the burden. The caregiver is the person who is there for the day-to-day to get through those interactions. Some families will have the medical power of attorney separate from the day-to-day caregiver, or the financial power of attorney separate from that. That's OK. And you can designate, I mean, I hate when things get corporatized so easily, but you could also think of it as governance, or something like that. Who is your family's minister of communications? You know, so you can have a minister of caregiving and a minister of communications. You can have someone who takes information from the caregiver and distributes it appropriately. That person doesn't need to be everything to everyone. They are everything to someone.

 

Melissa Smith

Oh, they are everything to someone. So, that's a perfect way to conclude our time together, G.J. I'm so grateful for you. Your knowledge, your exuberance for this demographic has been really inspiring to me over the years. And it's just such a privilege and honor to continue our relationship together through Caregiver Wellness Retreat. So, thank you so much for joining us today.

G.J. Hodson

Thank you for having me. And I'm a big fan of the work that you are doing, so I look forward to more of this in the future.

 

Melissa Smith

Thank you.

Melissa Smith

Thanks for joining us today on Caregiver Wellness podcast. G.J. is a wealth of resources and information, and I know you'll want to tune in for the retreat that we have online that premieres January 29th, but also lives online after that, evergreen. So, you can go on to our website now and sign up for it ahead of time or even after the fact, and watch the replay. And he's going to be sharing on the politics of care. So, you don't want to miss that. Again, if you feel so led to support, you can support us in a couple of ways. You can share this podcast with another caregiver who might need to hear what you heard today. You can also choose to donate, or even sign up for other online resources and other retreats that we have at https://www.caregiverwellnessretreat.com/. Those things really help us keep going and help us support caregivers. So, thank you for joining us today, and we are looking forward to next time. Take care.