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 In the marathon that is caregiving, the difference between exhaustion and endurance isn't willpower. It's the strength of the support network we build around us. In this episode, we're talking about the process of building and evolving our personal caregiving support network. We're sharing five tips. Music Welcome. We are 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 First, let me say that I hope you know by now that Sue and I want you to learn from our mistakes. And hindsight is 20-20. We both wish we had built our personal support networks sooner in our caregiving journey. We're not surprised to learn that dementia family caregivers study show face overwhelming emotional challenges. Up to 65% of them experience significant psychological distress. So if you are at the point where you know that you are experiencing distress, we really want you to listen to episode number 27, which is about caregiver self-care. If you haven't listened to that one yet, please do, because you need to be able to execute on caregiver self-care. And the good news is caregivers that have a solid personal care support network have 40% less burnout than other caregivers and a 37% higher satisfaction rate with their role as caregiver. Now, we understand sometimes just the act of even thinking about accepting help can seem overwhelming. Look, I get it. I like to cook. And when I'm making dinner and someone offers to help, sometimes I think, you know, it's going to take me longer to explain to you how to help me than it is for me just to do it myself. The difference is dinner is going to be over in an hour and your caregiving journey for someone with dementia is going to go on for a very long time. So in episode 32, we talk about hiring a paid caregiver. And when the time comes, we're going to talk about that at the end of this podcast as well. We want you to listen to that episode so you understand what the steps are involved in hiring a paid caregiver. Now, today we're going to talk, as Sue said, about creating that personal support network. And that's really made up of family and friends. And this is a good way to start getting support before you hire a paid caregiver. In the hiring a caregiver episode, we talked about tip one being assessing the needs of our care receiver. In this episode, we're focusing on your needs. So tip one is assess your needs and make a list of what they are. The most important part of this tip, there is no shooting allowed. It's reasonable we want the very, very best for our care receiver. Absolutely got that. However, it's not uncommon for us, as Nancy already mentioned, to think we should be able to do it all. We should be able to do this. We should know this. And perhaps you've said to yourself, I should dot, dot, dot fill in the blank. Stop that. If you hear yourself doing this, find an accountability partner, share out loud with someone to support you, identifying the areas where you do need help the most. Let's determine what kinds of help you need. You know what, Sue? How about this? Do you find yourself thinking, I don't have time to get everything done that needs to be done. Yes. How about this one? I am not physically strong enough to do everything that needs to get done. I need help with things like lifting or dealing with incontinence or assisting my loved ones mobility. I can't do this on my own. Do you catch yourself losing your patience or your empathy? Do you feel sorry for yourself? You're probably mad at the disease and you're probably grieving and you just don't even recognize it. How about we know our loved one is struggling with their activities of daily living from medication to wound care to making appointments, their finances, their meals, housekeeping, running errands, feeling safe alone, becoming more isolated. If you find yourself saying any of these things, it is time to ask for help. Here's the deal. People want to help. So start by making a list of things you need help with. Then estimate, you know, here's about the amount of time it would take to get this done. And what I did is I did make a list. I made a list of all of the different things that I could benefit from help with. And then I identified the different amounts of time it would take to get each of these done. And then I matched those up with people who had offered to help or the kinds of help I would need from someone. And this gets into what we do with tip two. So tip two, create a list of who can help and what they can do. So first think back to all the people who have offered to help or think of the people who you think can help with the list of things that you've come up with in tip one. Look at your immediate family, your extended family, your friends, your neighbors, even your community. Sometimes churches have people who can come help. So look at your list of potential helpers, if you will. And then map the list of potential helpers with the list of needs that you've created. And when you map that list, if you have more than one person that can help with a certain task, that is great. Put more than one name down. Better to be not relying on just one person for something if you've got multiple people who can do it. There will be family and friends who geographically don't live close enough to actually show up and help. But there might be likely to help financially with a gift card for the grocery store or a gift card for gas or, you know, some other meal delivery, something like that. So don't be afraid to ask for help, you know, in that way as well. And I guess one of the things that we really have to think about too when we create that list is be realistic about what friends and family can do to help and where you really need to get a paid caregiver to cover things. And we'll talk more about that as we get later into later tips. That's great and so very helpful. All right, so we've identified what kinds of help we need. We've identified about how much time each task takes. We've identified where we've already got support. And we've identified where we're going to benefit from some helping hands. This prepares us for tip three, how to effectively ask for help. Everybody get ready for this one. Like many of us, this is probably where you're most uncomfortable or for some of us even scared. It's also unfortunately what holds us back from getting the kind of help we really need. So let's talk about some ways to kind of make this more comfortable for us and what our best approach would be. One of the things Nancy and I have learned is some people want to help our care receiver. Some people want to help us. So frame the request based on the way they want to be providing the help. I've also found for me, it's so helpful to be extremely specific and direct. I ask for this is exactly what I need. This is why I need it. This is how much time it would take. I want people to, and they've already offered to help, but I want them to know this is really exactly what it is because I want them to feel comfortable saying yes. Or no. And think about this. So usually this person is on your list, right? In tip two, we created the list of people we think could help. They're on your list because they've already offered to help. Or you think they are willing to help and can help. So you kind of have to put that in the back of your mind is I'm asking them to do something they've probably already offered to do, or they're the kind of person who would love to help. So, you know, leverage that and help that sort of get rid of some of the hesitation that you have. And then try different approaches for different people. Think about the kind of person that you're approaching. So in our good, good examples of this, we really are. Yes, I like I am a net net kind of person. So I'd love it if you call me up and said Nancy you offered to help. I've now come up with a list. And I think you could help with X, Y and Z. Awesome. And it would take and I think it would take about this amount of time that works great for me. But Sue. Well, I'm a I'm the more touchy feely person and I'm more how do you feel and how can I help them feel the most comfortable with it and put him in the best position to feel good about it. And that's just the way I've always been so. So if you were asking Sue to help, you might say I would really appreciate Sue so much if if you could help me with X, Y and Z or Jack's husband Jack. It would help Jack so much if you could come over and sit with him for an hour. He loves your company. Just something more like that versus I need to run an errand and I need about an hour of time. Could you come over and sit with Jack for me. That's more how you'd approach me. But with Sue, you get more involved in the in how it makes you feel. Absolutely. You nailed it Nancy. That was just that was perfect. See, I know how to ask you to do stuff. That's why we work so well together. I asked you in your format and you asked me in mind. Exactly. One of the things I've also learned is when there are conversations that I'm uncomfortable with. I know it's an important conversation to have. And yet I'm more uncomfortable with it. I go ahead and I create an outline and I list the items and I kind of walk through it so that it supports me making sure I remember everything and I get the point across. And there's nothing wrong with that. Anything we can do to help ourselves feel the most comfortable asking for very valued help is the right thing to do. And it's really what we what we want to do. That's a great idea like that. Okay, so we've effectively built our list. We've mapped it to people. We've asked people who can help to help and we are really off to the races with building our personal support network. But there will be people who continue to volunteer to help. So that's tip four. So tip four. What do we tell people to say? Say yes. We want you to change your entire frame of mind. And when someone offers to help out of your mouth before you even had a chance to think about it comes the word yes. And you'll figure out what it is they can do to help you after the word yes comes out of your mouth. So flip that switch in your brain and and really practice saying yes when someone offers to help and hopefully the next time someone offers to help you'll think of this podcast and listening to it. And you'll catch yourself before you say anything different and you'll say yes, it would be great if you could help me. I've got some ideas. You'll hear Nancy and Sue in the back back of your mind going say yes. That's so true. So don't fall into some of these traps. These are these are things that keep you from saying yes. It would be easier just to do it myself. Or pretty common is and my mother used to say this no one can care for my loved one, like I can. Or I'm such a failure. I should be able to do this myself. Sue hates that one. I do hate that one. I feel pretty common. I feel so guilty. They have their own busy lives. And this is my our challenge to deal with not theirs. Now think about this for just a second. You offer when you offer to help someone else when you offer to help others. You mean it right. You do. So when others offer to help you instead of feeling guilty about it, no in their heart they meant it. And so take them up on it. They're not going to offer to help if they don't want to help. Exactly. Now here's the way you can make yourself feel better. Express a lot of gratitude. Say thank you so much. I really appreciate it. Don't assume they know how much how grateful you are. But that also makes you feel less guilty if you make sure they understand how much it means to you that they're helping. All right, one more time. Sue, what are we going to say when someone offers to help? Yes. Okay, I think they got it. This leads us to tip five and tip five is that we're going to be maintaining our support network and continuously adjusting as things change. It's reasonable. There are going to be changes in our personal support network over time. Their schedules change. Things come up. That's absolutely understandable. Encouraging open communication with them all the time helps them feel most comfortable when they're sharing the fact that they've got any issues coming up, any things that they're noticing, any changes in their schedules, anything that we should know about. The other thing though that's really, really important is when they mentioned something, be as proactive as possible about finding other potential support team members. So we have a longer runway to get that really valuable help. Another reason this is important is that you'll, you'll have somebody kind of on standby often where if they've said, you know, if you ever need something for about a half an hour and our, never hesitate to call. And there isn't something specifically set up, but they're available for you. We want to make sure we're checking in regularly with the members of our support network. We're making sure that we're keeping them informed and we're keeping them engaged. We're having those communications so they're really comfortable having conversations with us. They didn't go to school for this, just like we didn't go to school for this. It may really surprise them, but they may start to feel a little bit of burnout as well. So kind of be on the lookout for things that might seem like burnout, kind of changes in their conversation. They get more quiet. They're not sharing as much just anything you know them well so you know what that might look like. And because you've already been engaging with them and creating a really comfortable space for them, you're inviting them to feel comfortable not feeling comfortable providing care anymore or changing what they're doing. That's a really good point. So also what's going to happen is they're going to be inflection points as the diagnosis progresses. And by inflection points, I mean the level, the kind of care that needs to be given when someone's say sitting with your loved one while you run an errand. And so, it's going to get more complex for sure. Let me give an example of this. So my older son was the person that I leaned on when I needed to go do something for a whole day, something other than an hour or two, or need to go away for the weekend. As my husband's diagnosis progressed, I called my and my husband became incontinent and just urinary incontinent but it was the whole thing had started. And I call my son to ask him if he could come look after his father while I went and did something. I don't know what it was. And he said, Well, mom, I don't think so. He said, I'm not comfortable changing dad. I guess he wasn't comfortable changing dad. I didn't even cross my mind that things had changed the kind of care that was required for my husband to change. And so when those inflection points happen in the way that care needs to be provided for your loved one, use that as an opportunity to proactively go through the process of conversations with the people who are helping you to see if they're still comfortable with the kind of care that needs to be given. It might be time to look into getting a paid caregiver for some things or for some period of time. This is a good chance to listen to that paid caregiver episode and understand what it takes to get a paid caregiver involved. It might also be a good time to look in if you haven't already started leveraging dementia day centers. It's another place where they know how to professionally care for your loved one. And then at some point, you can find the right mix of family and professional caregivers and you'll you'll you'll know what that makes is based on the level of care that needs to be given. We began this episode talking about how we wish we had created our personal support network earlier in our journey. We created this whole podcast because we wanted people to learn faster and more easily than we did. And this is a great example of that. Caregiving is a team activity. And it's so important for us to get a blend of that care support where we can from our personal network, as well as at some point in time a professional network. So true. All right, well, let's summarize. In this episode, we talked about the process of creating and evolving your personal support network. We shared five tips. Tip number one was assess your needs and make a list. Tip number two, create a list of people who can help and what you think they can help with and map those two things together. Tip three, ask for help. And we talked about how to do that. Tip four, as more people offer, say, yes, you're going to hear Sue and Nancy in your head when you do it. And then tip number five was don't forget to maintain your support network and continuously adjust based on how things change. Now, we're adding something new here to the end of our podcast because it's the first time we've brought it up. But we want you to know that for every episode, there is a matching blog. You can get to that blog in the show notes, or you can go out to our website, the caregivers journey dot com, and you can look at the blog portion of our website. The number of the episode in the podcast matches the number of the episode in the blog. And think of the blog like this. We've effectively taken notes for you. It's literally a written version of what we talked about in the podcast. So you don't ever have to feel like you have to memorize or take notes. You can go to the matching blog and get that information. Now, if you have tips on how to create a personal support network, please put those on our Facebook page or our Instagram page. The links are in the show notes. If you like this podcast, please share it with those you think could could take advantage of it. Please follow it. Subscribe to it. We really, really appreciate it. We're all on this journey together. Yes, we are.
