Supporting Your Parent Through Their Caregiving Journey: Six Essential Tips / Alzheimer’s and Other Dementias

This is the Whole Care Network. Music Helping you tell your story, one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Music When a parent is diagnosed with dementia and the other parent begins their caregiver journey, the dynamic between parent and child shifts. Today, Sue and I are talking with Andrew Phipps from Empathy Unbound about how to support a parent who's becoming a primary caregiver. Sue and Andrew, you ready to get started? Absolutely. I sure am. Welcome. We're Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. Music In the beginning of the journey, we're managing this shifting dynamic between parent and child. Our parents' intentions are good. They're beginning by wanting to protect us as they have as the parent all of our lives. We're still the child. And yet, they don't want to burden us. We're busy in our lives, they think. We've got our own lives, they think. And they feel like they should be able to do this on their own. And also, they don't want us to think they can't. They've always been the strong parent. In this episode, we're giving you tips to help you shift this narrative so that we can help them recognize we're all on this journey together. Nancy, are you ready for tip one? I am. Tip one is to insert ourselves into the journey. Now, when we insert ourselves into the journey, one of the first things that we want to do is just make sure they know that we're there and that we want to participate in the journey. And some of us are maybe in the same city. Some of us are remote. Doesn't matter. We either need to start visiting more frequently or calling more frequently. But we want to put ourselves in a position to observe what's happening to let the parent that is the caregiver tell us what's going on. It's important that we don't walk in the door or talk on the phone about, you know, as if we have all the answers. We don't want to judge the decisions they're making every day. And we don't want to take over, especially early on. We want to be supportive. And part of our way to be supportive is for them to know that we're beginning to understand what the day-to-day dynamics are of their situation. And for me, my stories that my mum had dementia, my dad was a primary caregiver and my sister lived at home with my dad while I was a couple of hundred miles away. So one of the big things I found was in the relationship changing between me and my dad. So often the phone calls will be between me and my mum. We catch up and she sort of shout over to my dad to say, your son says hi and he say hi back. That'd be it. Whereas now I was talking to my dad more often. But one of the things my sister said was very direct is you don't live here. And I think that was a very powerful thing to say, very accurate thing to say. I was a couple of hundred miles away and wanted to offer help. But I had to remember that those times when I was visiting, not to try and take over, not to try and change things, not to try and second guess or to challenge some of the decisions they made, but to be there and support for them all. So my understanding of my role in the whole caregiver journey changed a lot. Thanks to my sister reminding me that I didn't live there. I think I looked at tip two, which is about the importance of checking on the caregiver's health as well. This is a journey for both parties. We know in ourselves whenever we're trying to give support, give aid, give comfort to somebody else, we need to feel well as well. We need to be in good health, both mentally and physically. We can look to others to help to step in as well. And I think one of the key things that we found is the importance of being proactive. And as Nancy said about inserting ourselves in the journey. And when we ask questions, don't ask questions where I'm fine is a possible answer. Because we know, particularly in the UK, that whenever anybody asks, how are you, I'm fine. That's a standard answer. And we know for a fact. I think that's a global answer because we get that over here as well. Because we know for a fact that that is the wrong answer. We are absolutely not fine. And one of the things to talk about is, well, what are the challenges you're facing? What are the things that can help you? What are the things that perhaps you need more help with? And give them a chance to sort of have a conversation and talk about things. And we know that as people get dementia, it tends to be when they're older, that the other parent as well is older. And they perhaps have doctor's appointments. They don't want to miss their flu jab. They don't want to miss the sort of medication that they're on. So to make sure they go to those appointments and keep themselves as healthy as possible. And under the more emotional, the more mental side we should touch on in a second, the borders to perhaps bring up the topic of cancelling are the people you want to talk to outside of the family. I hope not at this time, but at some time in the future, I think is super important as well. I agree. And that is a really great lead into tip three, Andrew, which is providing emotional support. And we want to help our parents keep their world from getting small as a caregiver. They immediately shift when the journey begins to focusing on their loved one. And it's reasonable that they would quit shifting the focus to themselves as we have conversations. And as we're asking questions, listen to what they are saying and listen to what they're not saying. And you've grown up with your parents so you can tell just like they can tell what you're saying and not saying. So listen actively for what they are saying. And when we're communicating with them more and more, we want to make sure that if that dynamic is changing, that we're able to pick up on that. And Nancy, you've got a story about that. I did, frankly, a lesson learned for me and from me that I want to share. First, my personality type, I'm very direct and I'm a fixer. So my husband had dementia for a good four years before my father-in-law was diagnosed and they lived three miles away. So my mother-in-law was the primary caregiver, but I was their day-to-day support. So I would go over there and she would want to share with me things that were happening. For example, I asked him this morning to go in to get dressed and he came out and he had just put his bathrobe on and he was ready to go. And she's dealing with the shock of realizing that he can't even go in to the bedroom and get dressed anymore. And yet, because I'm further down my caregiving journey, dementia caregiving journey specifically, I'm full of tips as we know, right? If you've listened to any of our podcasts on how to handle that exact situation. And yet, what I found was I was jumping right to, well, here's what you do when that happens. I wasn't spending any time focused on how she was feeling. I happened to take a course on caregiving consulting before Sue and I started our podcast. And one thing I learned was how important it was to spend time validating the caregiver's feelings. So the next time I went to my in-laws house and she told me one of her stories, instead of immediately coming with, well, here's what you do when that happens. I said, wow, that was really scary when he came out and had his bathrobe on and you realized, oh, all of a sudden he doesn't understand how to get dressed anymore. How did that make you feel? And we spent time discussing how she was feeling about that. And then maybe with whatever this new piece of information was, I'd have a tip. Maybe now was the time to give it. Maybe it wasn't. But I spent most of my time validating her feelings or saying, wow, you handled that really well when she'd tell me what she did. You know, maybe next time do this as well. But I really changed my whole dynamic and it changed the dynamic of the two of us in terms of my ability to support her as the primary caregiver. That's such a great example, Nancy, and happens so often that because we really do want to help. I mean, if we've gone through it and we struggled with it, we want to help other people. And sometimes it's taking that step back to listen and to validate them before that and then figuring out how to share it. That's just excellent. Andrew, you've got some tips on that as well. Yeah, absolutely. And I think to that point, I think the more that the more that the caregiver, our parent feels they can reach out and talk to us and that we're not going to say, well, you need to do this, this and this. The more they'll call and that's one of the big things I found with that is just getting into that cadence of him calling out for a conversation. And it might well be a conversation about a particular issue with the caregiving. But actually, we try to maintain a sort of normal dialogue as well, not ignoring the situation because we know it's there. It's there every second of the day. But to be able to talk about football or talk about the Christmas leftovers or what to buy for a gift or all those sort of things that perhaps you think are less important because they aren't part of that caregiving process. So I think having those normal conversations that aren't to do the diagnosis is super important. And they also it's really important to keep encouraging, in my case, my dad to have a life outside of being the primary caregiver. So to keep encouraging him to go to those church groups that we go to encouraging him to go and do the sport you might engage with encouraging him to go out for dinner with friends and things. Because we know that at some point, the caregiver journey is going to reach its natural end. So you want them to have this life in place that allows them to carry on with things once things kind of come to an end. So I think that's super important as well. The other thing is that when we talk about their world getting small, that because they don't have as much time available, they stop calling other family members perhaps and reaching out to other people. And it's reasonable again that their world would get a little isolated. One of the things we can be helping to do is reaching out to other family members and saying, hey, when you get a few minutes, just call. And if they if it goes to voicemail, send a really encouraging message or try to have a quick conversation, send a text, do something to help them be connected with the rest of the family. And even though they haven't had capacity to lean in, you keep leaning into them so their world again does not get smaller. And when you do have a conversation with them, talk with them. Yes, honor their caregiving journey and talk about things that have nothing to do with caregiving, how the grandchildren are doing what they've been doing, things like that so that they stay engaged in these other areas of life. Andrew, you've got an example of some things that you did for your sister and for your dad. Absolutely. And I think you you summed it very, very well before is that their their whole life can become about this caregiving process and the practicalities of it. So actually, they don't have time to sort of go out there and investigate different resources, different places, different times that they've been given back to them. So I found some local respect care that gave my dad a sort of morning a week off to go and do whatever he wanted to do, whether that was just take a long walk, whether that was to, you know, go to the pub and have a pint, whatever it was going to be. He just had that chance to go and spend a few hours to himself. And I think the more we can do that, it's it's incredible, I think, as we as we do get older, just generally how much we recognize that time is perhaps the most valuable thing we can give. It's the greatest gift that we have and all of us can give some time, whether it's that half an hour, whether it's a few hours, whether it's a couple of days. And I know you've got some some great ideas about how to use that time. Effectively, once you do get it, hopefully. Yes, and it's so helpful. And for those of us who are family members and friends. So if it's our parents, or aunt and uncle or brother sister, whoever it is, when we're able to give them that gift of time, as we're talking with them, be here be asking, you know, what are some things that where I could be, you know, I'd love to help what are some things that I could be doing. So what can I do so that you could have a few minutes away so that we're proactively offering because getting back to where we began, they may not want to burden us, they may feel like they should be doing all of these things. So help them realize they don't need to and we offer as family and friends to do that. So on our website, we have a worksheet. It's a guide under the Learn tab scroll down to guides, and you'll see a self care guide. And it is a checklist. It's got three columns. The first column and this is a great thing to sit down and do with the with the primary caregiver. You sit down together and say, what are the things that bring you joy? What would you do if you had an hour? What if you do if you had a day or weekend or an evening free or whatever? What are all that? A minute. A minute. You know, yeah. What are the things that would that bring you joy and then different increments of time and then the third column is where you match those up so that if someone does say, you know, hey, look, I'd love to come over and and I'll watch mom for an hour. So you can go out and do something. You know, you've sort of forced them to already think all the way through the process what they would do with an hour versus them say, no, it's OK. You know, I'm fine. You've you've now said, well, you know, you told me you'd love to go on a walk if you had an hour. So it at least helps force the situation, if you will, where everybody's on the same page. Look, we're going to give make sure they get the gift of time so that they can spend some time on themselves, which is great. And that leads us into sharing the load, Andrew. Absolutely. Our fourth tip. And I think we all know that people live lives away from where they were born. I'm a couple of hundred miles away from my family. My wife happens to be a couple of thousand miles away from her family. But there are tasks that we can do remotely. There are things that we thankfully are able to do online. So looking at the resources we have in terms of people to support and trying to share that load, all the things we can do that help the parent pay the bills digitally. Can we do an online shop for them? Can we help them schedule appointments? Can we arrange with their friends and people that are close to them or transportation voters and things? So that is a lot that people can do from a distance. As long as we talk about it and we have that discussion about what's happening. And I think trying to set up that care support team and to recognize that it doesn't have to just be the immediate family. My parents have lots of friends from lots of different places. Your parents, your loved ones have lots of friends from different places. Who are the people that we can rely on? Who are the people that would offer to help and support and continue to communicate with? And I think we need to make sure that we're offering support to the person that's closest to the caregivers, in my case, to my sister. And we know that people have boundaries and we have to let people have permission to have them. There's some people that I reached out to that were my parents' friends that felt very uncomfortable around at that time. And it's okay. People have listened different ways that they come back at different times, which is fine. But we need to be able to reach out to others to get support for them. We need to be able to communicate with family and friends because my dad wasn't in a place to keep the dialogue going with people, with my mum's friends that he didn't necessarily know. So to make sure that they were aware of what was going on and to make sure they were comfortable with the situation. And to ensure that we encourage them, rather than to accept help and support from us, but from others. People wouldn't offer generally if they don't mean it. So get used to saying yes. Get used to saying yes. I will accept the help. I'm not feeling bad about it. Which takes us on to the shared care plan that you can talk about. Andrew, following up on your point, the shared care plan is really, really valuable with my stepmother. One of the things that we focused on for her is that with my dad, she was so focused on all of the things for him. She hadn't put into place any thoughts about if something happened to her. We also wanted to make sure that we had primary, secondary, and third level of care based on what might happen. And so when we created this shared care plan, what we did is we created the plan that she would be able to use and have communicated to all of the people who were a part of this care team. So they knew their numbers. They knew what they had volunteered to do. They knew what kind of hours they could have. So everybody knew about it. So if something happened to her, it could kick into place right away who to be able to call. And we kept that updated. We put it in a place where everybody had access to it and we kept it updated. And some of the things that we put in that are where dad was at the time, the things that he liked to eat, what his patterns were. He had begun sun downing and he transitioned at about this particular time of day into that mode. He would want to walk the dog at a particular time. So we had all of those things that if anybody came in and needed to provide care, they knew where things were. They had all the emergency phone numbers. And so she had peace of mind if anything happened to her. And it also helped her to feel more comfortable because in the process of putting this together, people were like, please call me, please call me, please call me. So it helped remind her that they really meant it. We had a similar situation only instead of doing it ahead of time, we realized we had not done it and we had to go back and do it. So my mother-in-law fell and had to be admitted to the hospital. We had all sorts of plans on and we had it down to a science how to handle things when something went wrong with my father-in-law, who's the one who had dementia. But we were completely blown away when something happened to her and all of a sudden there was no one to stay with my father-in-law. We're like, uh-oh, this doesn't work because she could stay home by herself. So I could stay with him if he was in the hospital, but this was the reverse and we were not ready for it. So we created what we called a family emergency plan and we fixed it so that we from then on, if something happened to her, we knew exactly how to get in touch with everybody and who was going to take ownership of what. But we found out the hard way. So definitely something that you want to do upfront as opposed to finding out after the fact that you're completely unprepared. And that takes us to tip five, Nancy. Yes. So tip five is really about participating in the details of care. And it starts with making sure that you have, well, just making sure that your parent caregiver knows that you're willing and able to participate in the details of care. Sometimes this is just decision-making. My mother really didn't want to make decisions, big decisions about my father who had Parkinson's by herself. She wanted it, she wanted support. She wanted to feel comfortable. She was making the right decision. So making sure she understood that we were there to support her and that we were happy to help make care decisions. There's also legally some things you want to do to potentially get yourself in a position so that you can have access to their medical records or make medical decisions on their behalf. In a medical power of attorney gives you access to making medical decisions on their behalf. My mother-in-law actually wanted me to have the medical power of attorney for my father-in-law. She didn't want to have that so that I could go to the doctor's appointments and literally make decisions on his behalf. There's privacy laws. So each doctor needed us to sign in the U.S. a HIPAA agreement, but there's also same similar concepts in other countries so that they could share the medical record. With me or with whoever's signed off has access to the privacy laws. So it's an opportunity to get things sorted out where you're signing not only medical powers of attorney or privacy access to medical records. But here's also the time where you probably want to start thinking about access to bank accounts so you can help pay bills. Financial powers of attorney. Really any other type of legal document that might need to get signed. And you really want to do these earlier in the journey rather than later because a lot of these things the care receiver needs to actually sign. And you need them to be able to have enough cognitive capability to sign these kinds of things. Yeah. One of the things that we found whilst we were doing my mom's power of attorney things, my dad said, well, one of these as well. So my dad, et cetera, is all sorted out. So I would encourage anybody thinking about it just to do it well in advance. It's not something to be left at the last minute. Just do it while it's fresh of mind. Just get on with it so that everything's prepared for whatever the future holds. I like that. I like that. It's a great addition. So while you're making all that going through all this process, take care of the other parent as well. That's a great idea. So, Tip six is about supporting our parent caregiver through their grieving process. They've been grieving a little bit along the way throughout the entire process. I coined the phrase drip grief every day as something goes away. They're grieving that a little bit. They're grieving that a little bit as much as we talk about trying to keep their world as broad and open as possible. It has gotten a little smaller. And when our loved one passes, there's absolutely the grieving process for them to go through. We want to help them make sure that's a process that they continue to go through. And one of the biggest challenges many of us see, especially with the spouse of a loved one, and they've been together for many years, is the spouse just stops where they're at. And they get into the grieving part and they don't know how or feel like they should move forward. And so we honor the grieving process and we help them navigate the grieving process. We were not trying to rush them through the grieving process, but just like not wanting to have their world get small when they're in the caregiving side, we want to make sure that we're there, family members, their friends are there to help them through their grieving process. And then also, just like in the beginning of the journey, there are a number of legal documents to be dealing with. There are a lot of legal documents and steps that need to be done when the care receiver passes. So to the point where as many of these that could be set up in the beginning of the journey as well, do those. However, when our loved one passes away, as many of those as you can be supporting them with help them out because it's not something they're used to thinking about. And it can become overwhelming very easily. So help them navigate grief, not get stuck in grief, honor grief, and yet be able to move forward. Yeah. And I think one thing I want to throw in there is that, and something I didn't do at the time is not to forget to grieve yourself. Because you're not the person that's lost their partner, their partner they've been with for 40, 50, 60 years in some cases. Sometimes we can think our whole focus should be on that person and we don't give ourselves the chance to grieve. And it took me quite a while to get through that. So give yourself permission as well to recognize that you're grieving. It's your mom, it's your dad, and that you should be able to grieve for yourself as well. That's powerful, Andrew. That's really powerful. It's a great thing to remember. That's so true. Before we summarize, Andrew, Sue and I thank you so much for joining us today and for adding all of your insights and your experience to this topic. We really, really appreciate it. Why don't you tell our listeners a little bit more about how they can find you and about empathy unbound? I thank you. It's been really, really enjoyable to be here and to talk about this topic with people that have been through it, are going through it and there's so much about it. The empathy unbound really started because I wanted to try and promote the idea that empathy is one of the greatest superpowers that we have. And one that perhaps we don't recognize or use enough. So the ability to take on the power to put ourselves in someone else's shoes to understand their situation helps us understand them in a way that perhaps we couldn't in any other, in any other way. So if you want to reach out and listen to the podcast, I'm just on empathy unbound, wherever you get your podcasts, I'd love you to listen. So thank you again for having me. It's been a real pleasure. Well, thank you. Thank you, Andrew. Appreciate it so much. All right, let's summarize. Today, Sue and I talked with Andrew Phipps on how to support your parent who has become a primary caregiver. We shared six tips. First, insert ourselves into the process. Two, check on the caregiver's health to. Three, provide emotional support. Four, share the load. Five, participate in the details of care. And six, support the parent caregiver after the journey is over through their grief and through the transition. And as Andrew said, don't forget to give your self permission to grieve as well. Now, if you have tips to help someone who is beginning to support a parent who's taken over the role as primary caregiver, please share those tips on our Facebook page or our Instagram page. The links are in the show notes. Any products we discuss, like our self care worksheet, will put links for those in the show notes as well. You know, there's a lot in this shifting dynamic between a parent and child to unpack. And these six tips should help you get through that process. We're all on this journey together. Yes, we are.