Additional Resources Mentioned
Takeaways
Tip 1: Assess Your Needs and Make a List
Ask yourself:
- Do I have time to get everything done that needs to be done?
- Am I physically strong enough to handle all caregiving tasks?
- Do I find myself losing patience or empathy?
- Is my loved one struggling with activities of daily living that I can’t manage alone?
If you answered yes to any of these questions, it’s time to ask for help.
Tip 2: Create a List of Who Can Help and What They Can Do
- Think about all the people who have offered to help or who might be willing to help.
- Map your list of potential helpers to your list of needs. If multiple people can help with a particular task, list them all—it’s better not to rely on just one person.
Tip 3: How to Effectively Ask for Help
- Recognize that some people want to help your care receiver, while others want to help you.
- Be specific and direct about what you need and why you need it.
- Remember that the people on your list have likely already offered to help or have shown willingness to support you.
- Adapt your approach based on the person you’re asking.
Tip 4: When People Offer to Help, Say “Yes”
Avoid these common traps:
- “It would be easier just to do it myself.”
- “No one can care for my loved one like I can.”
- “I should be able to do this myself.”
- “I feel guilty—they have their own busy lives.”
Tip 5: Maintain Your Support Network and Adjust as Things Change
- Encouraging open communication with your support team members
- Being proactive about finding new support team members when needed
- Checking in regularly with your helpers to keep them informed and engaged
- Watching for signs of burnout in your helpers—they may experience caregiver fatigue too
- Addressing inflection points in your loved one’s care needs
Read More in This Blog here
Full Episode Transcript
Sue Ryan
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.
Nancy Treaster
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. Me especially. I speak for myself. Now, we’re not surprised to learn that dementia family caregivers, studies 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. Now, the good news is 40.
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.
We understand that 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 gonna 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’s gonna 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 gonna 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 gonna 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.
Sue Ryan
In the hiring a paid caregiver episode, we talked about 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.
There is no shoulding allowed. It’s reasonable we want the 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.
Nancy Treaster
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?
Sue Ryan
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 one’s mobility. I can’t do this on my own.
Nancy Treaster
Do you ask yourself or do you catch yourself thinking? Or 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.
Sue Ryan
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 made 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.
Nancy Treaster
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 not rely 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 they might be likely to help financially with a gift card for the grocery store or a gift card for gas or some other meal delivery, something like that. So don’t be afraid to ask for help in that way as well. And then 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 into later tips.
Sue Ryan
That’s great and so very helpful. All right, so we’ve identified what kinds of help we need. We’ve identified how much time each task takes. We’ve identified where we’ve already got support and we’ve identified where we’re gonna benefit from some helping hands. This prepares us for tip three, how to effectively ask for help. So 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.
Sue Ryan
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.
The other thing is I’ve also found for me, it’s so helpful to be extremely specific and direct. I’d say “This is why I need it. This is how much time it would take.” 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.
Nancy Treaster
And think about this, Usually, this person’s 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. If 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 and so in our good examples of this. Sue and I are good examples of this.
Sue Ryan
We really are.
Nancy Treaster
Yes, I like, I’m a net-net kind of person, so I’d love it if you called 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 I think it would take about this amount of time. That works great for me. But Sue?
Sue Ryan
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 you learn how to ask people based on how they receive the best. And you know that you’re talking to people who you already know. What I’ve also learned is when I’m going to have a conversation, that is something I know it’s important. Okay.
Nancy Treaster So if you were asking Sue to help, you might say, I would really appreciate Sue so much if you could help me with X, Y, and Z. Or Jack, Sue’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’d get more involved in how it makes you feel.
Sue Ryan
Absolutely. You nailed it, Nancy. That was just, that was perfect. That was perfect. That’s why we work so well together, I ask you in your format and you asked me in mine. 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 want to do.
Nancy Treaster
That’s a great idea, I 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 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 listen 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.
Sue Ryan
You’ll hear Nancy and Sue in the back of your mind going, say, yeah.
Nancy Treaster
Yes, that’s so true. So don’t fall into some of these traps. These are things that keep you from saying yes.
Sue Ryan
It would be easier just to do it myself.
Nancy Treaster
or pretty common is, and my mother used to say this, no one can care for my loved one like I can.
Sue Ryan
Or, I’m such a failure, I should be able to do this myself. I do hate that one.
Nancy Treaster
Sue hates that one. I feel pretty common. I feel so guilty. They have their own busy lives and this is our challenge to deal with, not theirs. Now think about this for just a second. 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, know in their heart they meant it. And so take them up on it.
Sue Ryan
They’re not going to offer to help if they don’t want to help.
Nancy Treaster
Exactly. Now, here’s a 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 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 gonna say when someone offers to help? Yes. Okay, I think they got it.
Sue Ryan
Yes, I think they’ve got it. All right. People want to help. We have clearly identified that. It’s reasonable in this process of helping that our support network is going to evolve. Others want to join it. So we want to always be on the lookout for people who are asking if they can help. Is there anything they can do to help offering anything like that?
This leads us to tip five. And tip five is that we’re gonna be maintaining our support network and continuously adjusting as things change for ourselves, for our care.
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 mention 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 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, an hour, never hesitate to call and there isn’t something specifically set up, but they’re available for you.
We wanna make sure we’re checking in regularly with the members of our support. We wanna 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.
One of the other things that’s really important to be on the lookout for is, they didn’t go to school for this just like we didn’t go for school. 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 this 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.
Nancy Treaster
Good point. That’s a really good point. So also what’s gonna happen is there are going to be inflection points as the diagnosis progresses. And by inflection points, 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 is 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. And as my husband’s diagnosis progressed, and my husband became incontinent and just urinary incontinent, but it was the whole thing that had started. And I called 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. Well, of course he wasn’t comfortable changing dad. It didn’t even cross my mind that things had changed. The kind of care that was required for my husband had changed. 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 have 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. So 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 know what that mix is based on the level of care that needs to be given.
Sue Ryan
Yeah. 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.
Nancy Treaster
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 gonna 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. 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 caregiversjourney.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 take advantage of it.
Please follow it, subscribe to it. We really, really appreciate it.
Sue Ryan
We’re all on this journey together.
Nancy Treaster
Yes, we are.
