Caregiver Support

Hello, everyone. My name is Jane Catton, and I’m the CEO at Age Well. I’d like to welcome you to our show, Aging Matters. I’d also like to thank MVP Health Care for sponsoring our show and making it possible every month. As you may know, Age Well is the largest area agency on aging in the state of Vermont. And we serve four counties, Franklin, Grand Isle, Chittenden, and Addison. We have a mission to serve anyone who is over the age of 60 or under the age of 60, with a disability on long-term care Medicaid. And our goal is to make sure that anyone who needs our services can be wrapped around in their home or setting of their choice, so that they can remain independent. Every month on Aging Matters, we like to choose topics that are of interest to older adults or their family members. And this month, we have with us two guests who are experts in a really important topic that we’ll be talking about this evening, caregiver support programs and the need for these caregivers supports throughout our aging services. So with me this evening I have Jennifer Harbison and Erica Marks, both from Age Well. And before we jump into the questions I have for you this evening, Jennifer, maybe we’ll start with you. Tell us a little bit about your background and your experience and a little bit more about those caregiver programs. Sure, Jane. Thank you. As a caregiver support specialist, I work with family and friends caregivers who are supporting their loved ones at home. Before I came to Age Well I worked as a home care aide. So providing direct support to individuals who were living with dementia, with Parkinson’s disease, with frailty. At Age Well I’ve also worked as a case manager helping clients navigate services, including long term care Medicaid. I’m also a graduate of the UVM End Of Life Doula professional certificate program. And I have a special interest in what I call life planning, which is supporting folks to get their plans in order. Their advanced directives, their financial powers of attorney, so that they can be in control of decisions about their life even when they may not be able to participate directly. Wow. That is an amazing set of experience and skills and field work, so I can’t wait to learn more about it. Erika, how about you? Yeah. Thank you so much for inviting me. I’m so happy to be here. I have a master’s degree in psychology and I’m also a master trainer of adult learning, but I have a real passion for supporting caregivers. I actually have been supporting caregivers for over 30 years. I first started when I had my private practice. I had a friend who was an oncologist and she came to me and said, I need help figuring out how to support the family members of all of my cancer patients. Would you help me. And I said, yes, I would gladly help you. So that was my first entree into developing support groups for caregivers. I’ve been the director of volunteer services at Age Well now for about 7 and 1/2 years where my team and I recruit, train, match, and support approximately 100 volunteers. And I recently within the last couple of years created a special program specifically to train respite volunteers to support caregivers. Wow. More exciting background and information. I can’t wait to get into it a little bit more. So as you know, on our show today our focus will be on supporting caregivers and caregiver programs. So if you can imagine navigating that, as I’ve heard, can be either very gratifying, it can be incredibly stressful. So as I was preparing a little bit for this evening I read a 2020 study by the National Alliance for Caregiving and AARP. A nice community partner of ours called Caregiving in the US. And it reported that approximately 48 million individuals in the United States were providing unpaid care to an adult family member or friend 50 years of age or older. 48 million Americans. This is unbelievable to me. We also know that these numbers are rising, especially in the state of Vermont we have an aging population. We have an aging population around the United States as well. And we know that by 2030, and that’s what, only seven years from now. It’s hard to believe. Around the corner. About 30% of our population in Vermont will be over the age of 65. So right now it’s hovering around 24, 25%. That’s another almost 5% in just about five to seven years from now. So we know our population’s aging and again, while all of us have experienced caregiving at some point in our lives, we know it can be really gratifying. But the other side of that is stress, challenges, some barriers, and caregiver burnout too. So we want to avoid at all costs. So let’s dive in a little more with that backdrop. That’s some impressive statistics. And we’ll jump into a few questions. So Jennifer, maybe I’ll start with you. Could you talk about who is a caregiver? Well, Jane, as you just mentioned, many of us will be caregivers or will experience caregiving for a family member or a friend at some point in our lives. So a family member might need help recovering from a hospitalization or from a stint in rehab. A friend might need help recovering from an accident. So short term assistance is caregiving. Caregivers often don’t identify themselves as caregivers, however. So they say that they’re only doing their dad’s bills, or they’re just going grocery shopping for their mom. Or that they’re just taking a friend to a doctor’s appointment and staying at the appointment to make notes. So of course, all of those things are caregiving functions. And we consider all people who are helping an older or a disabled adult to maintain their level of independence to keep living at home, all of those people are caregivers. Of course, at the most intensive end of the spectrum, a family or a friend, caregiver is someone who may be managing all aspects of an older person’s life. From personal care to meals to medications to supervision to finances. So many, many, many of us are caregivers in one way or another. Yeah. It’s an awful lot, especially if there are higher needs and we see that. So speaking about needs, what are your perspectives, Jennifer, on the needs of caregivers? Well, first and foremost, I think that caregivers need to be recognized for what they do and to recognize themselves for what they do. In many cases, what they do amounts to a second full time job. Caregivers need skills training, how to be a caregiver. They need emotional support, they need social support, they need financial support. They also need regular respite, regular breaks, so that they can be resilient against burnout. So that they can take care of themselves. And so that they can continue to provide care for their loved one. And to make good decisions for their loved one. So Jennifer, I know you work very closely with so many people who are caregiving. What are some of the challenges they’re facing right here in Vermont? Yeah. The number one challenge I hear about from my caregiver clients is the lack of available respite options. It’s hard to get a break. Vermont is experiencing a really acute caregiver shortage and that makes finding respite care extremely difficult in any setting. Whether it’s in a facility, in an adult day program, or at home. Caregivers also face significant financial challenges, including the cost of respite care, lost income if a caregiver has to take time off work. Increased expenditure involved in caring for their loved one. And then, of course, in a rural state like here in Vermont the demands of caregiving often result in caregivers feeling very isolated. Oh, right. Of course. We’re such a rural community and simple things like transportation just to get to a social event is very, very tough. A real challenge. We learned about that in one of our other episodes around the social determinants of health where transportation and living in rural settings also contribute. So I’m going to shift gears a little bit over to Erica because Jennifer, you said something about respite. And Erica, I know that as you mentioned earlier, caregiving is very near and dear to your heart and you’ve developed a national award-winning program called The Respite Volunteer Program, fondly known as the respite squad. And these volunteers help to support caregivers. So can you tell us more about this very interesting program? I would love to tell you more about this very interesting program. I mean, really to address the need that Jennifer is talking about, it’s very apparent that there’s a shortage of paid to caregivers available to folks who are caregiving. But then even in addition to that, the cost of hiring a professional caregiver can be quite prohibitive for a lot of families. Most of the home health organizations that do have professionally trained caregivers have a three hour minimum for all kinds of good reasons. It makes perfect sense. And so our goal was really to design a program where we could train volunteers to provide the kind of support that caregivers and their families need. And they have some unique needs. So the training was to make sure that the volunteers walked away with the skills and knowledge that they needed, including understanding what is respite. Oftentimes people have misconceptions about that. They think that if I’m providing respite to Jennifer, that means that Jennifer has to leave the house when I go there. Otherwise I’m not really giving her a break. But maybe what Jennifer needs is to take a shower and then go for a walk and get some fresh air. Or maybe Jennifer has some bills she needs to pay. Or maybe what Jennifer really wants is– she’s had a really bad night, she hasn’t had a lot of sleep. And instead of her going to the grocery store while I’m there, maybe she wants me to go to the grocery store for her. So really understanding respite, there’s a huge story to be told there about what respite looks like. And it might be different every week when you go. It might be that one week I want you to stay with my loved ones so that I can get out, but another week it might be, I want you to go out so that I don’t have to. We really wanted them to understand about cognitive decline, cognitive deficits, dementia, and Alzheimer’s because oftentimes, what tips the scale for caregivers is when it’s no longer safe for them to leave their loved one home alone. That’s when respite care becomes really, really critical. So we wanted to make sure our volunteers felt comfortable sitting with someone who had dementia and knew how to support and redirect and meet that person’s needs. In addition to that, we do a whole huge section on communication. Because believe it or not, only 7% of our communication is verbal. 93% is nonverbal and we wanted to make sure that the volunteers could accurately read the room, if you will. And be able to pick up on cues and be able to communicate in a myriad of ways, not just with their words. We also wanted them to understand family dynamics and how the roles of the family members shift as a person is less and less able to do what they were doing before they became ill. We wanted them to understand grief and bereavement, in particular, we wanted them to understand that a lot of the grieving starts before a person dies and that there are lots of little losses all along the way. And that you’re going to see how the family is impacted by that. And then we also wanted to make sure they had good boundaries and they knew how to set good boundaries for themselves. Because the truth is, they fall in love with the family that they’re providing respite to. And the family falls in love with them. And before you know it, their role is expanding and we want to make sure they’re clear about what their role is. And that they’re identifying other needs and communicating them back to us. So I can refer them to Jennifer on our caregiver specialist team and make sure they really do have those wraparound services that Jennifer was talking about. Wow. So it sounds like a really great integrated approach to caregiver supports and how close the communications have to be. Erika, you talk about how the respite squad can support some of the caregiver shortages. Is the squad just a local program, or is this expanding maybe a little bit? Well, fortunately here in Vermont, this is one of the wonderful things I love about living in Vermont, is that if anyone has a good idea that makes a difference the community is small enough that we talk about it and then before it kind of spreads like wildfire. And we’re very fortunate because at Age Well we currently have a contract with Dale, with the state to help the other area agencies on aging recruit and train their own respite squad volunteers. So that no matter where you live in the state of Vermont, if you’re a caregiver and you need respite there should be a volunteer that will be available to help provide that break for you. And I understand it’s going very well. So– It is indeed. We started a class this past Wednesday where we’re training a new round of folks, so we’re very excited about it. That’s fantastic. So this is a really important question for our viewers out there. If someone was interested to join your volunteer respite squad, what should they do? They just have to call the helpline. If they call the Age Well helpline and say, I’m interested in being a respite volunteer, I promise they will get directly triaged into the volunteer department and we’ll be happy to talk with them about their interest and their availability, and all the ins and outs of the program. Nice. And how long does it take to become a respite volunteer? Oh, it’s a great– so the training is a four week training. So it’s four sessions. The sessions are three hours each, so 12 hours. And you can have all the tools in your toolbag that you need in order to provide respite for a family. That’s awesome. So Erica, I’m going to ask you this question. So we know that we’re supporting caregivers who support older adults, and are there similar programs throughout the state? You just talked about trying to expand respite programming, so are there other programs throughout the state? Generally speaking, the other place where you find this kind of volunteer program is when you look at the organizations that provide hospice care. Because a part of hospice care is making sure that there is support for the family members who are caring for their loved one who is dying. Short of that, I do not know of any other programs here in Vermont that specifically provide respite. And how about you, Jennifer, do you know of any other programs? We do. We have our counterparts at the other four area agencies on aging. So each of Vermont’s five area agencies on aging, including Age Well has a caregiver support program. And that means that caregivers or really, anyone over 60 anywhere in Vermont can call the helpline and get connected directly to their local agency. Fantastic. So it sounds like our triple As are area, agencies, on aging are also doing their best to back up caregivers across the state. So that’s fantastic. OK this is another question for Jennifer. Well, you’ve talked about the needs of caregivers. We’ve talked about some of the programs throughout the state. What are some of the ways that Age Well helps caregivers meet their needs? Great question. The caregiver support program at Age Well offers information, access assistance, education, training, and financial support. We, for example, we deliver the powerful tools for caregivers course, which is a skills and resilience building course for caregivers. We administer dementia respite grant funding, and funding that comes from another source, the National Family Caregiver Support program. And we administer that funding direct to caregivers. We encourage self-care, which often, very often includes assuring caregivers that it is absolutely OK, right, and proper to ask for help from family, from church and spiritual communities, from disease organizations, from friends, from neighbors. We help caregivers to connect with support groups. We end with other skill-building organizations and with counseling services. And of course, we make referrals to the respite squad. We also help caregivers to begin to navigate the services for their loved ones, including long-term care Medicaid, which is where many, many folks are able to receive long-term care that just isn’t covered by any other source of funding. Great. That’s a lot of additional support. So it’s fantastic. So Erica and Jennifer, this is a question for both of you. Could you talk about some of the benefits that caregiving families receive from these programs? And the supports that we provide at Age Well, and do you have any stories that you can share? I came in with one, but then I have another one that happened today. My first story has to actually do with a woman who when we first started training respite volunteers, we had gotten a referral that she needed respite. And so we matched her, so we are professional matchmakers. We take our job very seriously. We want to match every family with the right volunteer that’s going to be a good fit for them. And we matched her actually back in August, we matched her with a volunteer and we’re doing our quarterly follow up and called to check in and see how it was going. And she said, oh, my God. It’s going better than I ever thought it could go. I’m able to go to the YMCA for my exercise class, and that is helping me maintain my mental health and my physical health. It’s made such a big difference for my family. And then this morning I was talking to a caregiver who said, oh, my God. Tuesday is John’s favorite day of the week. Our respite volunteer comes on Tuesdays and every other day of the week he lollygags in bed. And he doesn’t ever get up before time. On Tuesday mornings I hear him, when I get up and I’m making coffee, I hear him in his room. He’s already out of bed and getting ready because he’s excited because he knows his volunteer comes and he gets to go out for a ride, and they do all kinds of fun things together. So it doesn’t get any better than that. No, you’re absolutely right. It just warms your heart. It’s fantastic. Jennifer, how about you? Do you a story to share? I do. I have a story about impact as well. We worked with a caregiver to a person with dementia. And we started by improving their understanding of dementia and of how the disease progresses. And this meant that the caregiver was able to plan to understand a little bit about what was coming. And therefore, to organize their life, so that they could really prioritize what was important to them and to their loved one. We were then able to give a respite grant, which allowed the caregiver to hire help for two afternoons a week. And on one afternoon a week she met friends for coffee, and chat, and played some board games. And the other afternoon was able to go out and attend a counseling session for some of that important emotional support. What the caregiver told us was that with this support they were able to keep their loved one at home. They were able to breathe a little bit during that time. And that yeah, they were able to keep their loved one at home longer than they would have otherwise been able to. That’s a great impact story. Wow so, so impressive. All of the resources, all of the backup, the creative programming. I think it’s fantastic. So just before we wrap up, I’m going to ask each of you if you could offer one piece of advice, what would that be? Erica. That one for me is easy because I have a hard time asking for help. So I relate to all those caregivers who have a hard time asking. So my advice is let yourself accept help when it’s offered. It’s way too big a job to do solo. It’s a great piece of advice. So hard to take help sometimes, especially when you’re used to managing your own life, living in your own home for so long, managing with your partner or your loved one. Asking for help is really tough. So I think that’s a super piece of advice. Jennifer, what’s your advice? Well, your advice very closely related to Erica’s advice. I would encourage caregivers to seek support early and often. So if you are regularly helping an older adult, learn about the range of services that are available before the caregiving becomes a really heavy burden and before the situation becomes a crisis, before you start to feel burnt out. You can come to us at the caregiver support team, and we can have one conversation with you. It can be a one and done. Or we can work with you over a much longer period. So don’t be afraid to ask to seek support. Excellent. Ask for help. Seek support. Accept help. Accept help. Ask and accept help. Seek support. Fantastic. Well, Erica and Jennifer, I want to thank you for being with us on our show today. I learned so much and I hope our viewers did too. And to our viewers, whether you’re new to caregiving or you’re seeking some support, some fresh ideas, some resources– please reach out as Erica and Jennifer have advised. And Age Well offers programs that will help you navigate caregiving and caregiving support that you may need. And as Erica mentioned earlier in our program, if any of you are interested to learn more about our respite volunteer program, please reach out to Age Well. We’d be very happy to talk to you about it. Call our volunteer department or simply our helpline at 1 800 6425119. And as always, remember, if you, a family member need any kind of supports to help you stay well and healthy and independent in your home, please call Age Well. We’re here to help. I hope you enjoyed our show this evening on Aging Matters. We look forward to seeing you next time, and I thank you.