While it’s natural to want to help take care of a loved one, doing so can affect your well-being. In this episode, we’ll take a look at caregiver role strain, a common condition experienced by caregivers, as well as ways to reduce it. Learn what "E+R=O" and "ASK, ASK, ASK" mean.
Janice Goldmintz's website: Talk About Aging
Janice's video 'To Move or Not to Move'
The Eden Alternative
CCAC / LHINs - Community Care Access Centre/Local Health Integration Networks
HCCSS - Home and Community Care Support Services - Call 310-2222 (no area code required)
Related OWN THE GREY podcast episodes:
Golden Girls Living
Losing Yourself in Caregiving
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[00:00] Debra Jones: Welcome to Own the Gray, a podcast to dispel the notion that aging is undesirable and setting new positive attitudes. I'm Debra Jones, and I believe you can be vibrant and healthy throughout the best years of your life.
[00:24] Debra Jones: Janice Goldmintz is the author of Getting Older but Not Old and an expert on aging with a master's degree in gerontology. She's also trained in elder family mediation. Janice is the president of Talk about Aging, providing education and coaching to children of aging parents, older adults, health professionals, and caregivers. She empowers us to see the possibilities of high quality aging, no matter what the circumstances and how to achieve the highest quality of life at any age and any stage. And today, we'll be talking about being a caregiver and ways to advocate for your loved ones. Welcome to Own the Gray, Janice.
[01:15] Janice Goldmintz: Thank you so much, Debra. I'm really happy to be here with you today.
[01:20] Debra Jones: I'm happy, too, because we had a conversation before we started recording. And for our listeners, this is going to be information that we can use. This isn't just talking about the high level of the positive ideas about aging. This is getting into the nitty gritty of what it takes and what we need to do to take care of our loved ones. And ultimately, what we're going to be learning is how to take care of ourselves or how to set ourselves up for an easier time than what is actually happening in the world right now in the world of aging and long term care facilities. And, yeah, we've got a lot to talk about. So thanks, Janice, for joining us. And we were talking just before we recorded about being a caregiver and the challenges that we face when we take care of our aging parents. And so, Janice, is there something that you have found in your experience that is really something you're passionate about, talking about regarding that?
[02:33] Janice Goldmintz: So having gone through the experience and going through the experience right now, I have a 92 year old father. First of all, realize that the majority of caregivers are women, and it's generally the daughters of these older parents. So it falls on us to have more than one career in quotations. So we're doing our work during the day, caring for kids. We could be in the sandwich generation where we've still got children at home, possibly in high school or university, and then we've got our parents on the other side. So there's a lot of responsibility, a lot of commitments that we are undertaking in our caregiving, and we want to make sure that we're giving due process to everything. And so it can become overwhelming and stressful as a caregiver because we've got a lot of commitments and a lot of balls in the air. So that's something that I am passionate about, is finding ways to make it all work. And there are things that we can do. There are ways we can take care of ourselves. There are ways we can be empowered to make it easier. We just need to ask, and that is a big deal for most women, is to actually ask for help and find ways to make it such that there's a work life balance, that we take care of ourselves as well as taking care of our loved ones in general.
[04:04] Debra Jones: Yeah, it's really interesting that myself, I'm going through that as well, taking care of my parents and the stress level. I was so unaware of how it might affect me. And I'm an expert on stress. I help people with stress all the time. I've got all the tools, I've got all the methods of keeping a balance or at least getting back into balance. And yet I have been pushed to my limits of what I'm able to do for myself. And what I have come to the conclusion is we can't actually do this alone. If you have a partner and your partner can support you, that's amazing. If you don't have a partner, I cannot imagine how much pressure it is on your shoulders. And so the work that you do, Janice, is also to support the people that need the work, isn't it? What kind of support do you offer?
[05:09] Janice Goldmintz: So really, what I can do for you is help you to almost step back from what you do and look at what you're doing and who's helping you or who is not helping you or what other resources are. Available out there, whether they be government funded resources or private pay or even trying to get your family or friends helping you with a little bit of respite. So it's really giving you a bigger picture with some resources also to learn how to advocate. I think advocacy is a really big deal in caregiving because we're going to run up against things that we might have some issues with. And if we can have other people, other health professionals, or if your parent is in long term care or retirement residence and you can work with those people and not against them, you're going to have a better outcome. So finding ways to work collaboratively with the people that are caring for your loved ones is another thing that I can help with. Something that you had talked about in terms of stress is to realize that as caregivers, there's four kinds of stress that we face, and it's financial strain, because if we're working, we need to be at work if that's part of what we need to be doing. So we're thinking, okay, how can I again balance my work life? Also, financial strain works into, do I have the funds to bring in outside help or to be in a retirement residence or to pay for long term care? So there's that financial aspect. There's the physical aspect. If your parent needs physical help in moving because their mobility is not where it could be, then you may end up with physical strain in lifting, carrying, moving, that we don't think about that, we don't think about the toll on the caregiver's body, but it's real. That is a stress there. There's obviously the mental strain there's. Seeing our parent or loved one be in a situation where we see some kind of deterioration, for lack of a better word, that's very stressful for us as well. That can be very stressful. And then our social relationships is the last one. Trying to balance our family life, if we have our own spouse to make sure that we're nurturing that relationship, our relationship with our kids, our relationship with our friends, our own social circle, our own life, trying to fit all of that in. So when you talk about caregiver stress, it's a whole big myriad of stresses that need to be addressed. And I don't think we always think about all the aspects, but that's another thing that I can help with, is to look at the various kinds of stress and how we can make them better.
[08:19] Debra Jones: Wow, it's Pandora's box, isn't it? There's so much there's so much inside that you think just dealing with the situation is the biggest thing, but there's so many spin offs and so many paths that you can go down. You mentioned advocacy. I'd like to kind of start there. So advocacy, I presume, is standing up for the things that you need or to support your loved one in getting the needs met that they have. And so in your experience, what are the challenges of why we need to really focus on this? What kinds of things are happening out there?
[09:06] Janice Goldmintz: Part of the problem is, depending on where you live, government funding of programs has been pulled back. So where we might have thought that the government is going to help us as we get older, and I think that is such a fallacy that people have, oh, I don't have to worry, the government will take care of me when I'm older. It's absolutely not the truth. You have to be planning and have to be thinking of how you're going to do that. Now, in terms of advocacy, the government still does provide programming and a lot of times people are not aware of what those programs are. One of the things I suggest is to go on whatever website your government has, wherever you're living and look to see what do they provide for their elders and see what can you take best advantage of. In Ontario, we have the CCAC, the LHINs (now HCCSS), they can be very helpful in finding programming, but you have to advocate for your parent and say, this is what I could provide, this is what's missing, what do you have? What is available to us as citizens that you can provide? And a lot of times they'll say, well, we can only do X, Y or Z. And the truth is they've also got ABCD in their pocket, but they don't necessarily want to let you know that they do because it's something that may not be available to everyone. It may be limited, whatever, but ask for everything you can possibly get and have your loved one assessed. Make sure that somebody is really asking the questions that need to be asked to find out where your needs lie. And if you think that in six months down the road, needs have changed, pick up that phone, call them again. Hey, changes have happened. I've got some more challenges. What can you do now? Don't just take what they give you in the beginning and say, well, that's all there is. So I would say that's square one. If your loved ones are in some kind of facility, either retirement residence or long term care, the big issue there is short staffing. There just isn't enough people to go around to care for your loved one in the way that you likely would want. So it's managing expectations. What do I think is going to be realistic that they can do? What am I going to have to do? Or what are we as a family going to have to do to fill in some of those gaps? But on the other hand, what is sort of the minimum standard that we expect? And if you're not seeing the minimum standard upheld, you need to have that backbone, for lack of a better word, to go and say, hey, I noticed this isn't happening, or that's not happening and what can we do? So it's keeping your eyes open and managing your expectations at the same time. So I would say those are probably the things that play into advocacy the most.
[12:20] Debra Jones: It's a tall order, isn't it? Because it's a realm that you're just thrown in usually. Like, you don't plan for this, you haven't gone to school for this for the most part. And so you have to kind of find your own way. And I find that this is not a story of one person's experience. This is everybody's experience from what I have seen. It's the situation, it's the status quo of our health care. And I'm in Canada too. I'm in Ontario too, so I'm seeing what you've been talking about, and there are a lot of opportunities out there that aren't necessarily going to show up for us. And I think that's what I've been hearing you say is that we need to take over the care of ourselves and our loved ones and do whatever we can to create the support and the life that our loved ones deserve. Being the podcast host of Own The Gray, my focus from the very beginning was I created the podcast because I saw that our needs weren't being met as far as understanding what it means to get older. And the idea of getting older and then being kicked to the curb was really what I was sensing is that older people, they're not worth anything anymore. So we don't need to even focus there. Let's focus on the young, let's focus on the up and coming in the business world and all of those things. And the elderly have put in all of the years of their life to create the society that we're living in, and yet here we are and they're not getting their needs met. And I think that's a *** deal, I really do. Even though there's nothing that we can do to actually change the system itself other than how we navigate it, is what I'm feeling. What do you think about that? Is it about navigating the system or is it something else?
[14:33] Janice Goldmintz: I think it's dual. I think we have to take the system that we're dealing with today and navigate it. But I also think that the boomers that are up and coming now won't accept the system as it is. They're not going to go quietly into long term care and have substandard care. I think that people who are, I'll say between 50 and 75, need to start looking at their own futures and going, wow, is this what I want for myself? And if not, we as a community based on who we vote in, how we interact with the government, need to have our voices heard. We need to provide some kind of feedback to say, no, this is not acceptable, this is what needs to happen. And also to strategize different methodologies. If you look in the States, especially, there's something there called Silver Nest where it's almost, I'm going to say Golden Girls type living where they find people to live together in houses or duplexes or whatever, where there's four or five people that live together, they hire a housekeeper, caregiver, whatever, and they live jointly. So it's people who are not related living in a home together because they can't afford the higher end retirement residences, but they still know that they want to have socialization, they want to have companionship, but they also want to know that there's somebody else there in case of an emergency or to help care for them. So that you're going to see, I think, a lot of other strategies be created by the boomer generation to address some of these shortfalls that they're seeing or have seen with their own parents. So I think we can't just navigate the system as it is. We have to work toward creating a better one.
[16:42] Debra Jones: Yeah, I totally agree with you. I did a podcast episode, I'll put a link in the show notes exactly that there is something in Canada, in Ontario called Golden Girls Living. And it's the same idea. It's almost like a dating app for older people where you put in what your needs are, how you live your life, and the kind of home environment that you want to be in. And then they match you with someone that has the same desires so that you can comfortably live together. As I said, I'll put in the show notes, but when I was looking at all of the things that you've been doing, Janice, I also heard you talk about the Eden Alternative, and that is in the States only, is it not?
[17:31] Janice Goldmintz: It has not somehow crossed the border with any great passion. What the Eden Alternative is. A doctor that kind of looked at his own parents care and he's a geriatrician, and he thought, there has to be a better way, because that sort of institutionalized care. If you imagine the long Bays corridor with all the doors that look the same and the nurse's desk in the middle, and all the people lined up in their wheelchairs around the nurse's desk, was not the best thing for those older adults. And he came up with what he calls the Eden Alternative. So what it is, it's based on, I'll say little home pods. So instead of having long corridors of rooms, there might be ten rooms in a pod. And everybody is encouraged to bring stuff from home to have their pictures. They might have a chair, a desk, something that is from their own past and their own life that they're familiar with. There might be a picture box outside of their room with some pictures of their family. And what that does is not just give them the feeling of home, but it also orients them to their own room because they see their family oh, this is my room, my space. So it helps for their cognition as well. And as well, instead of having sort of an institutionalized dining room, there's a small dining room for those ten people and they eat together like a little family and they help to the best of their ability to set the table or whatever it is they can do. They have events and programs in that dining room or area. There's a TV possibly, so it looks like a living room. It's more home like. The colors that are painted are more lively and enticing for them. They may have patios that are for that particular area of those ten people that are safe, where they can't wander off the property, it's enclosed. But they have their own outside space, so they're not worried about people wandering away because they've got their ability to move about a space that is again home like. And then there's also space where everybody in the building may get together for certain programs. They may have barbecues in the summer with everybody in the building, or holiday celebrations, but it's much more homelike. The other thing that I find amazing is the meal times are not institutionalized. You don't have to eat breakfast at 08:00, you can eat breakfast at between seven and eleven because the food is there for you in the fridge and there is somebody there to help you if you want to eat at eleven to make that happen for you. The bathing bath times is on the schedule of the person, not we need to give you a bath every Thursday. It's according to what the need is of that older adult. It is resident centered as opposed to staff centered. When I lived in Buffalo, they were just testing it out and converting. And initially the staff were like, well, that's going to be really hard. It's going to be hard for us. We're so used to this regimented way. And they did it and they found that it worked so much better because it gave them more time to spend with the residents on a Thursday, instead of giving everybody a bath, maybe only two people needed a bath. So then they had time to do other things with those residents. The people were happier, the families were happier. They ended up with residents who were much more engaged and happy in their lives, which made their jobs easier. And I think we have to get that mindset across the border.
[21:36] Debra Jones: I am so inspired by that description. I no wonder they call it the Eden Alternative.
[21:43] Janice Goldmintz: It does sound like the Garden of Eden. Yeah, absolutely.
[21:47] Debra Jones: But I don't see, as you said, the first reaction was that's going to be difficult to do. But as you were saying, it ended up easier. But I think our world is getting very focused on structure and routine systemized. Exactly. And I'm studying astrology right now and I'm seeing that astrologically, that is the direction that the whole world has been going, but we are actually shifting into a different way of doing things. So this Age of Aquarius that we've been talking about since the 60s, that is exactly what we're moving into and it is a different world. And so to your point about we need to not accept the system the way it is, we are being supported astrologically to make these kinds of changes for the better. And the idea of helping elders take their life back, because I see it, it's just being vacuumed out of them and they are just a thing. They are just being warehoused in the system, which that is not a natural, normal human state to be. That is just you fitting into the system.
[23:05] Janice Goldmintz: Right. The other thing you have to look at is that there are cultural differences. Certain cultures do still hold their elders as revered. Yes. And when their parents get older, it's a natural extension, oh, they're going to come and live with us or we're going to go and live with them. That is the continuum of care in those cultures. But look at how older people are viewed in the media. If you look at TV shows or you look at movies, older people can be frail, they can be demented, they can be kind of well, there's kind of old dad over there kind of making old dad jokes. We're not seen as vital aspects of the community anymore. We are more marginalized like a lot of other people. Older people are marginalized. And I think that that's another thing that needs to be addressed is how do we perceive older people in our society? Because if we marginalize them in the media, we marginalize them in real life because we follow what the media does. Unfortunately. It just is what it is. I have a whole presentation that I do on ageism. And ageism is a real thing. It really is. So there's a whole societal, cultural, as you were saying, shift that needs to happen everywhere.
[24:39] Debra Jones: Yeah, I totally agree. And I also know that it starts with us. It starts with you, the listener, taking a look at your situation, of your belief system around elders, but with a focus on yourself. You are aging, you are aging, you are getting older. You are going to be the one that needs this care. And now is the time to put these new systems into place so that when you get to that point, it's going to look a little more Eden like than it does right now. And that's really that is really what drives me to keep doing this podcast, is I'm learning what that could look like through people like yourself that have the vision and the awareness of what's happening to the degree that you do, so that you can see what actually needs changing. So if we were to sort of I'd like to have you back on to talk about ageism for sure, because that is a huge topic by itself, but let's sort of wrap up our conversation with some useful tips and information. So is there anything that you can share with us? Because I said it starts with us. What kinds of things can we do that's going to start this ball rolling in the direction we want it to go?
[26:09] Janice Goldmintz: So I'm going to say a couple of things. First, I want to give you the three R's of caregiving. And the first one is RESPECT. And when I talk about respect, it's really respect for your loved one, but also for yourself and your situation. Make sure you're taking care of you because it's that same thing that they always say on the airplane. If you're sitting beside somebody else and the oxygen comes down, you have to put yours on first in order to help somebody else. So that is part of what you need to do. The next R is REALISTIC EXPECTATIONS. None of us are Superman or Superwoman, so be okay with not being able to possibly do everything you would like to do with everyone in every way. It's okay to not do everything, to ask for help. That for me is a big thing with caregiving, is asking for help wherever you can get it. So be realistic in your expectations. And then the final R is RESPITE 24/7. We need to have that break. So that's kind of in a nutshell. But how to best manage caregiving is to ask, is to be an advocate, is to look at what else is out there that you might not have been aware of, even if you're part of a religious community. Sometimes churches, synagogues, mosques, have people within the church that could come in and help you. People that you wouldn't even think of. Or if your loved one has Alzheimer's disease, call the Alzheimer's Society, they have a ton of help. Or the Parkinson's Society or heart and stroke or whoever it is, they have so much information that can help you to be more aware of your loved ones challenges and how you can best manage them. They also have caregiver groups, like support groups, that might be helpful for you. There's things that you may have not even thought about that are out there to help you. You just have to reach your hand out and ask for it.
[28:27] Debra Jones: That's beautiful. That is great advice. And you were talking about with the three R's, the realistic expectations part and the respite, and it reminded me of something that I heard you talk about on another podcast, and that was the E + R = O. Would you like to share what that is?
[28:47] Janice Goldmintz: Sure. So I am a Jack Canfield trainer and he wrote the Success principles. And I will tell you that little equation will change your life. So E plus R equals O is events plus response equals outcome. And a lot of times the events we have absolutely no control over. Things are going to happen to us, but our response is going to create the outcome. So if you can imagine you're in a traffic jam and you have an appointment to go to, so that's the event. The event is the traffic jam. And your response can either be, oh, why me? Why now? I'm going to be late, I'm not going to look good, now I'm stressed, what am I supposed to do? And then the outcome of that is stress, unhappiness, feeling like you have no control. Or your response can be, okay, this is the situation. I'm sitting here, I'm going to think about what I was going to talk about at this meeting. I can go over the notes in my head, I can be prepared, I can send a quick text saying, hey, I'm in a traffic jam, I'm going to be delayed, possibly, but I'm on my way, I will be there. And then your outcome is, I'm ready to go. I'm calm and relaxed. And that's the different outcome you can have. So I'm going to relate it to caregiving. So caregiving, your parent is hospitalized and they have dementia. So what your response to that can be, my parent isn't going to be able to manage here what am I going to do? This is going to be terrible. Or your response can be, I know that there's resources within the hospital that could help me and there are. And that's something that, again, people don't tend to ask for. Is there somebody who can come in at night when I'm not here and be with my loved one? Or can I let the nursing staff know these are the challenges and these are the things you may come up against. And so if I make you aware of them, it might make it easier for you and easier for my parent. You get a different outcome. So we have to sometimes take a step back when we're in an event and think of what is the outcome we want. And if I want this outcome, how would I need to respond to get it? And I'm going to tell you it works everywhere in your life. And I will just say quickly, the other thing from the Jack Canfield world is the ASK, ASK, ASK. Because if you're in a situation and you ask and the answer is no, you're no further behind. But if you ask and the answer is yes, that can change everything for you. And because somebody says no right now doesn't mean it's always going to be no.
[31:46] Debra Jones: Keep asking.
[31:47] Janice Goldmintz: Ask different people. Ask, is there something else I need to do differently? Is there another time that it might work better? Again, advocacy. Advocacy. Ask for yourself and ask for whatever it is that you want. It will also change your life as a caregiver to ask for help.
[32:07] Debra Jones: These are such valuable tips. Thank you so much for sharing them. I want to also let our listeners know that your book is available. Would you like to tell us what is the name of your book? Why did you write it? What is it about?
[32:24] Janice Goldmintz: Sure, the name of the book is Getting Older but Not Old and it is living with more Joy and life. And really what it is, is it's sort of very short little vignettes of things that I think we may not think about or if we do think about it, we may not have always a positive spin. So things like dating and sex, which most older adults don't tend to think about how you can continue to have purpose in life, how to have a better relationship with your doctor, thinking about medication use that you have, how you can be prepared and have all documentation that you might need ready for yourself, and how to have fun. Don't stop having fun because you get older. You always want to have that mindset. So that is my book. You can get it through me, through my website, which is www.talkaboutaging.com. I'm also happy to answer questions or provide guidance for you. My email is email@example.com. The other thing that I wanted to let you know is if you're having caregiver stress or. You want to see how stressed you are, you can reach out to me and I can send you a caregiver stress quiz that has the answers at the back. You can check to see where your stress level is, and sometimes that's interesting because you think, no, I'm all good, or, oh, my God, I'm so stressed, and you can find out really where you are. I also have one for general stress, which is also kind of fun to do to see where you're at.
[34:06] Debra Jones: Beautiful Janice. Can you send that to me, please? Yes, I'll give you the details afterwards, but thank you so much. It's been eye opening and sort of a little bit calming as well, to know that there is a process that we could work with that's going to help us have a better time with this. I mean, yes, getting old, there are challenges, but getting older is a natural thing, and we need to enjoy what we can do and not focus so much on all of the things that are not working that get in our way. And so thank you for uplifting me and our listeners and thanks for your time.
[34:51] Janice Goldmintz: Thank you so much. Just remember, highest quality of life, any age, any stage. That's the goal.
[34:59] Debra Jones: You can now find my podcast, my book, and soon, my classes on www.Babyboomer.org, the ultimate most trusted source for news, information and community. They've curated all the resources on the things that interest you. Check it out today at www.babyboomer.org.