Additional Resources Mentioned
Takeaways
We shared 4 key resource areas:
- Start with FREE government-funded programs like Medicare GUIDE, VA benefits, and Area Agency on Aging support
- Explore Low-cost community options including adult day programs, memory cafes, and volunteer programs
- Use technology solutions like affordable students, and technology for micro-breaks
- Know your backup options for crisis situations
Read More in This Blog
Full Episode Transcript
Nancy
Do you feel completely alone in your caregiving journey? Do you have no family backup, friends have faded away, and you can’t afford professional help? Does it feel hard? Well, the reality is, it is hard.
Elizabeth and Sue
Welcome. We are Elizabeth Miller of Happy Healthy Caregiver, Sue Ryan, and Nancy Treaster of The Caregiver’s Journey.
Nancy
Today we’re joining forces. Together we’ve lived it, learned from it, and made it our mission to walk alongside you, the family caregiver, as you navigate your journey.
Elizabeth
Whether you’re trying to hold it all together, find a bit of time for yourself, or just figure out what comes next, we’re here to support you.
Sue
You don’t have to do this alone. Let’s get started.
We’re sharing four key resource areas that can provide relief without breaking the bank.
Elizabeth
First, I want to set the stage for us a little bit. Have you guys ever heard of the frog analogy where a frog is boiling in water? If a frog were to jump into boiling water, they would immediately jump out. Who wouldn’t? But if a frog goes into lukewarm or cold water and then over time the water starts to boil, they don’t realize that they’re boiling and that they’re feeling overwhelmed and burned out. And that’s how caregivers feel sometimes. And especially solo caregivers who have not as many helping hands potentially or respite options available to them. We want respite to be an option for all caregivers. And today we’re really focusing on you, the solo caregiver, because you can be gritty for a little while, but the average caregiver is a caregiver for four and a half years. And for dementia family caregivers, it can go even up to 10 years or more.
Sue
Relief’s actually closer than you think. And much of it won’t cost you anything. This is what we’re here to talk about today. Anything we’re pointing to today, we’ll have links to it in the podcast description or show notes. We’ve pulled together four main categories of resources so you know exactly what’s out there for you. So let’s begin with resource area one, which is free government funded programs.
Nancy
Can’t beat that.
Elizabeth
Yeah, can’t beat free.
Well, the first thing that we recommend as a place to start, recommend you pick up the phone and you call them frankly, is your area agency on aging. They’re also referred to as your triple A’s, but not the kind of triple A that’s gonna change your tire. So all of our regions throughout the United States have area agencies on aging. They offer different services depending upon which region you’re in. There could be meals, transportation, activities for older adults and so forth.
And a lot of them also offer dementia care specialists that you can talk to. And you can find out if you qualify for grants for professional help. One of the grants that is available in many states is something called the Lifespan Respite Voucher Program. That’s a mouthful. However, it provides financial assistance to unpaid family caregivers and it allows you all to purchase temporary short-term respite care for loved ones who have chronic conditions or disabilities. And we’re going to link so that you can find the Area Agency on Aging in your area and see if they offer one of these respite vouchers.
Nancy
I think finding respite – you know, it’s not a common word when you haven’t been in the industry. So respite is really the ability to get a break. You know, somebody else to care for your loved one. You are able to take a breather.
So let’s talk about another government free resource, the Veterans Administration. Your loved one is a veteran. You can get free resources, free caregiving support, from the VA. They have lots of different programs. It’s actually pretty complicated to understand. My father-in-law was a veteran and we were able to get 16 hours a week of paid caregiving support. So we used four half-days a week. You can get more than that even. And the best way to do it is to find your local veterans office, Veterans Administration office, call them on the phone and ask to speak to a social worker.
That person understands their programs inside and out and will help you find the best opportunity for you to get support.
Elizabeth
Also Elizabeth Dole is passionate about helping family caregivers and she has a nonprofit called hidden heroes that offers respite options for military and veteran caregivers as well. Wonderful. And so go out, we’ll have the link to go out to that. We’re going to share all the links.
Sue
Another offering is the Medicare Guide Program, and that is also free of charge. So what’s the Medicare Guide Program? It’s for people with dementia and intellectual and developmental disabilities, and it’s also for their caregivers. It is a free program and it provides care coordinator. You get a care navigator and you get up to $2,500 per year in respite care services. The CMS website has information about who qualifies and how to qualify for it. So that’s another one of the links that we’ll be providing. One of the other things that you’re to find on the CMS website is how you can put in information to find a program near you. So we’ll put a link in the podcast description for that as well. So all of these things, lots of free government programs.
Nancy
Yes. And so we’ll make sure that we give you links to everything in the podcast description or some people call it the show notes. So let’s move on to resource area two. And we want at this level to explore free and low cost community options.
Elizabeth
There are a lot of great resources in this area, too. Some of the free resources are going to be diagnosis specific chapters of support, like your Alzheimer’s chapter, your Parkinson’s, your stroke, cancer potentially and sometimes your community senior centers will offer some of that as well.
There’s also going to be support groups that you can take advantage of. Some of these you’ll be able to take your care receiver with you so that they’re taking the care receivers away while you’re getting support as the family caregiver. And one of the organizations that I volunteer my time for is a virtual group. So really removes that barrier from having to go physically to a support group. That’s with daughterhood.org. have circles of support throughout the month and I lead one of those circles every month.
Another thing you might want to check into is adult day centers or adult day programs. They are structured programs. Sometimes they are dementia specific, sometimes they’re not. They do cost, but low cost compared to providing and paying or there is a cost associated, but a low cost compared to what you would typically pay for a by the hour caregiving support where you might have a four hour minimum. Your person, your care recipient is going to go to this place. Sometimes it’s a community center or a church or a faith community. And for a set number of hours, they’ll have drop off and pick up times, but that’s gonna allow you to get a break to do something that is for you or something that you needed to get done without your care recipient being there provide a link for you to be able to find the support groups that’s a daughter. We’re gonna provide a link so that you can find the Adult Day programs near you in your area so that you can check them out. And some Adult Day programs actually also have grants. So when you go to the Adult Day program, if you are needs-based, let them know because often they have grants for people who are in need so that you can get the support but not have to pay.
Sue
Another great option is something called memory cafes. Memory cafes are a place where people experiencing cognitive challenges go along with their caregiving family members and they have programs together. And it’s where everybody gets together and there’s friendship and there are programs that are offered. And it’s really a lot of acceptance of what’s going on with the diagnosis. This is not to be confused with a support group. They’re not support groups, but on the other hand, conversations will probably come up about the diagnosis and things like that, but what they’re really doing is having people get together and actually enjoy doing activities together. And it’s really designed to support both the caregiver as well as the care receiver.
A great place to look for these is called Dementia Friendly America’s Memory Cafe Directory. You’ll see that they have locations all around the country. I think they said at the last count, they’re more than 500 or more than 600 of them. So there are quite a few of them around the country.
Nancy
Yes. And there could be more because this is a great way to, it’s not, you know, drop your care receiver, not an adult day center. But it does give you some rest and some relief because you don’t have to come up with the activities. You know, there are other people there to talk to . It’s a good way to take a break even though you’re doing it with your care receiver.
Sue
Well, and you can just be with them instead of caring for them.
Nancy
So lots of positives on memory cafes. I think there should be so many more of those. Let’s also talk about palliative care. So palliative care is not hospice. I know it sounds like it. A lot of people think it’s the same but really we’re talking about palliative care programs. That’s different from palliative care, the concept. This is palliative care programs and these are paid for by insurance with the exception of you will pay a copay and your care receiver is eligible for palliative care support if they have a life-limiting disease. And as soon as you get a diagnosis of a life-limiting disease, we recommend that you engage or try to find a palliative care program near you.
They will, of course, sit alongside your medical team. So they’re an additional layer of medical support, but they also are there to support the caregiver. Yes. So a lot of the things that you feel burdened by, but you know you need to do, get your legal documents in order, find support groups. How do you understand the financial situation? They will help guide you through a lot of that and really just be somebody side by side, helping you get through the process of taking care of business. So palliative care programs, look into that for sure. As early as possible in your diagnosis too. Sue and I have a podcast on palliative care because we really believe that everyone should understand more about palliative
Elizabeth
Absolutely. It’s an underutilized resource for sure. So another resource we wanted to share with you is another nonprofit. This one was started by comedian Seth Rogan and his wife Lauren. It’s specifically for dementia caregivers, but you can apply for grants to have two different types of grants, frankly. There’s an in-home respite grant where you can apply for, where you’re gonna have home care come into your home and offer you some relief. And they partner with the Home Instead agency to do that. And then they also offer respite grants for adult day centers, which we talked about earlier, where you can drop off your care recipient and pick them up. So both great grants that you can apply for if you’re a dementia caregiver.
So far we have talked about free government options for caregiver support and respite and free and low cost community options. Now we’re moving into resource area number three. I like to say that technology can be part of the care team. And so we’re gonna be focusing in this resource area on using your technology solutions.
We’ve got several options to share. Some of them do have a cost involved, but not a terribly expensive cost. And this could frankly be something that all of those friends and family who are offering support for you, that maybe they can buy some of these as a gift for you or for your care recipient.
One that doesn’t have a really expensive cost that has been very helpful to me with my journey in caring for my brother, Tom, who has an intellectual and developmental disability, is something called memory board. It looks like a little digital frame and it has an app that I use and I can send reminders. I can send photos as far as things to keep him on his routine, maybe activities that he might enjoy in the community that he lives in, reminders about the behavior that we’re striving for. And frankly, this is just one less thing that I have to remember to do. So shout out to Memory Board for sure.
And I also want to mention a couple websites. One is called Care Yah-Yah, and another one is called Papa. And these ones are basically a directory that your care recipient can be matched with a college student. So college students have a wide variety of things that they’re studying for where they need real hands-on practical experience in caring for people whether they’re nurses and so forth. And that gives you another chance to get a break that way.
Sue
Which are just great. Another thing is that for those of us, whatever communities we’re in, there are a lot of diagnosis specific support groups. So whether it’s for cancer or heart disease or dementia or types of dementia, a frontotemporal or a Lewy body, they often have volunteer boards. So they have people who volunteered to say, I’ve got X number of hours that I would be available. And they’ll have volunteer swaps. So some people will say, I could volunteer on a Tuesday and someone else might do that. So they’ve got, those are great to do. And then a lot of companies today have started to put into their employee assistance programs, volunteer hour exchanges. So people will donate volunteer hours. They’ll say, I’m gonna take some time from my vacation hours, I’ll put them in a bank. I can come and I can help out or I’m great to help on the weekend. So organizations are getting very creative about having volunteers from the business community because they don’t want employees burned out and they want employees to be able to stay. And so people are willing to step up and say, they’d be glad to help. I love it.
Nancy
That’s awesome. So we’re talking about using technology solutions. Sometimes it’s not about how to find a caregiver. Sometimes it’s how to use technology to just keep your loved one engaged while you go make dinner or read a book, you know, in the same room or in the room next door. So there’s things like Zinnia TV, which is specifically focused for dementia, but it’s actually an awesome way to engage people living with dementia in front of the TV in a way that you know is not going to cause them agitation or frustration. There are online exercise activities from a company called Vivo. There’s singing at home options from a company called Bridgetown. And these might need to get your person started. But once you get them started, it’s a way to keep them engaged. Also, Dementia Minds, if your loved one has dementia, they have virtual support groups for people living with dementia. So once again, you may have to get it started for them, but that’s a good way for them to be with other people and at the same time give you a micro break.
Sue
Well, and speaking of micro breaks, there’s another option that can really help with micro breaks. There’s another option that can help you with those micro breaks and it’s called cognitive stimulation therapy. And what it does is it uses structured conversations to keep your brain engaged and to help the care receiver have something to do and it supports reducing the cognitive decline. And it gives about a 20 to 30 minute break for the caregiver because it’s giving the care receiver something active to do. There are AI solutions including NewDays.ai and we’ll have the links for that as well.
And this leads us to tip four, which is knowing your backup options, which is hugely important for us.
Elizabeth
Yeah, sometimes you need a chunk of time, whether it’s for a planned break or an unplanned break to be able to get away. And so there are communities that offer respite, such as skilled nursing communities and maybe assisted living communities in your area for a fee. And sometimes you can also get short-term breaks of respite through hospice if your loved one is on hospice. And those are typically Medicare covered.
I also recommend one of my caregiving tips that I share is that family caregivers always need to have, you know, a backup plan, not just a plan B, but sometimes C, D, E, and F. So you need to find a reputable home care agency. And the best way to do that, frankly, is to talk to another family caregiver in your area, if you can, and go through the assessment steps for your care recipients.
So that you can get away if you need to that last minute, you know work trip or a family emergency that needs to happen The assessment is likely going to be free and it’s worth it to have that peace of mind
Nancy
It’s a very good point and even if you go through an assessment and you were to get a grant of some sort then you’ve also found a care service that you feel good about. There are emergency grants as well from for example from the Alzheimer’s Association. It is at the local chapter level, so you need to go to your local chapter, but they provide some emergency respite grants to help caregivers get some temporary relief.
We also realize that if you’re going to get relief and someone else is going to care for your loved one, or let’s say an emergency happens to you. You end up in the hospital or in a car wreck or something. Part of this resource area needs to be your ability to have other people take care of your loved one. You need to have a documented care plan or a documented emergency plan.
Sue
You know, that’s really important. We have two podcast episodes that we’ve created in support of that. One of them is by Denise Brown, who’s the founder of Caring Our Way. And she identified that 74 % of caregivers have identified they didn’t have a backup plan. And so she created some ways to put together backup plans in case of an emergency. And that’s our podcast episode number 26.
Another podcast episode we did, was episode 33, was with Amanda Lukoff. With Amanda Lukoff, and she’s the co-founder and CEO of Ella Plan. And that’s specific to creating care plans. So there’s no reason not to be able to have one. They’re very important to have, and you’ve got support with them. And again, no cost.
If you’d like to know how to find us, go to thecaregiversjourney.org.
Elizabeth
Or you can find out more about me and the Happy Healthy Caregiver podcast and resources. And I really want to invite you to check out the Happy Healthy Caregiver newsletter. So we’ll link to that as well.
Nancy
Let’s summarize. Today we discussed where to turn for help outside of friends, family, and professional help. And there’s lots of different options.
Elizabeth
We shared four key resource areas.
First, we kick things off with free government funded programs like Medicare Guide, the VA benefits and your area agency on aging support.
Sue
And the next thing we did is explored low cost community options, including adult day programs, memory cafes and volunteer programs.
Nancy
We talked about how to use technology solutions. We talked about how to use technology solutions like affordable students and technology for micro breaks.
Elizabeth
And we encourage you to know and plan for your backup.
Nancy
Absolutely. Now, if you have tips on ways that caregivers can get respite and get support and low cost options, please share them on our Facebook pages or our Instagram pages. The links will be in the podcast descriptions.
If you like this podcast, please share it with others.
We’re all on this journey together.
