The Check-Up: Where, and how, to get caregiving support

Jun. 15—I recently wrote about Cheshire County having the highest rate of dementia in the state among those 65 and older. As part of that article, I spoke with several local people caring for loved ones with memory loss about the struggles they face.

To continue that conversation, The Sentinel hosted a Facebook Live question-and-answer session June 8 with Evelyn Erb and John Everest from Home Healthcare, Hospice and Community Services, who help caregivers locally.

For those who missed it, here's a transcript — edited for clarity and length — of that discussion:

Can you explain what a caregiver is, in both the professional and nontraditional sense?

Evelyn: Professional caregivers are usually someone that we have to privately hire. Somebody who comes from an agency, or maybe someone who is just doing it as an independent role and they might be helping out a family that has someone that might have need with personal care, or perhaps companionship. But that professional caregiver title is really someone who is being paid for that service.

John: Yeah, and a personal caregiver, usually you think of it as a family member or loved one that's caring for someone who needs care, whether that's a long-term illness or a short-term issue that they need some help with.

When you talk to caregivers, what do they tell you is the biggest difficulty they face?

Evelyn: It's probably a long list ... I think isolation is often a huge thing, especially if someone is caring for a loved one who really needs 24-hour supervision. They are pretty isolated as a support to someone without a break. Isolation, really a larger health care system and network overall that's lacking in being able to provide a lot of built-in caregiver support, so it can be a little bit lonely.

John: I think part of the isolation is that people enter into this situation often pretty unprepared. Most of us don't know, or we have some vague sense of there are services out there or someone will help me or maybe they know of a particular organization, but then suddenly, when they're in the situation with a loved one that's really struggling and they are alone often or with a small group of family helping, suddenly, there is no map of where to go. I'll often talk to people about the sense of ... you know there's a map out there, you know there's services, but it's kind of like written in invisible ink, so you can't see how to get all the service that you need. You don't even know what questions to ask initially, often. You don't know what's possible.

Do you provide guidance in terms of securing insurance benefits and the cost of providing care to patients of dementia?

Evelyn: As an agency ... our main in-home medical programs where we support folks, right built in to it, we do have the social work piece, which is often that navigational orientation to what is available, what isn't. And often ... we need to help people understand what their options are based on their circumstances. So anyone entering into home care supports or hospice kind of naturally does have that navigational support built in, and it's often pretty surprising to people what is and is not covered by Medicare. In general, we also like to be a resource to the community, so certainly we field questions all the time from folks in the community who might not be receiving services who have questions about caregiving and then, in turn, we also engage partners like ServiceLink ... 2-1-1, the different structures that are organized to keep track of anything that might be available.

For the caregiving support group, which is led by John, can you walk us through how that is aimed at helping caregivers and what things you may talk about in that space?

John: It's really designed as a place to take off the yoke of isolation that Ev talked about. So it's a place where people can come and all of those built up things people have inside of them as a caregiver — all the stresses and the sense of not doing enough and frustrations and loving someone so much and being really frustrated with them at the same time at times. So to be able to come into a group, there's something magic about just being able to share some of those struggles with other people and have other people in the room ... nod their heads, knowing exactly what they're talking about. It's a huge relief for folks, often.

Evelyn: Earlier, John and I were talking about the fact that there are many different types of caregiver ... Maybe caregiving involves a new mother, caregiving involves caring for one's aging parent, caregiving involves caring for someone with a disability, so many different ways that people are caregivers. But, themes emerge, and themes are really that kind of piece that unite people and especially, as John says, in the group format, that recognition, even when situations are different, you have a community.

Of the people you've seen in your group so far, how many are caring for someone with memory loss? And of those that do, are there certain struggles that they are facing that others might not?

John: Dementia is definitely a huge portion of the population for caregivers that come in seeking support. It's a particularly challenging illness and all the things that go along with that. I don't know what the number or percentage is, but it's a high percentage. I've worked with people who are caring for folks remotely. The people they are responsible for live in a different town or region, but they are ultimately the responsible ones. They're the power of attorney, maybe, or they're coordinating care from afar, and that can be different, but just as stressful. Some of the same dynamics happen in that kind of situation as those who are right in the thick of things with their loved ones.

Evelyn: The people who are caring for loved ones with dementia, they are dealing with loss in real time. They've got the person that they love right there with them, but it's not the same person, so that intermingled caregiving need, as well as coping with their grief and loss, is sort of unique to any sort of caregiving situation, where there's been a cognitive change and you don't have access to the person you once knew.

For the support group, how often does it meet and is it at HCS?

John: It is now ... COVID has thrown a lot of things into some level of disarray and people are very anxious to meet in person, understandably, so we've decided to go to an in-person format and that'll be starting over the next few weeks. The caregiver group, for right now, is going to be a drop-in model ... We're also going to be doing a Zoom group as well for those folks who are interested in meeting by Zoom, so we'll be doing both at the same time.

What other kinds of support might a caregiver need, and what is available locally?

Evelyn: I think for caregiving support, in terms of when I think about what I talk to a loved one or family about, first and foremost thinking of what is it that they are trying to juggle. Some people might be trying to juggle a return to work, they've taken a leave, maybe they need to take a leave, so the first thing that I think people think about is what is it that they need to juggle, what are the priorities. Then mapping that out a little bit if people are involved with services through home healthcare or hospice, certainly, again, we'd have the social worker help with that type of further breakout of what are the needs and how can we direct the services. We do make referrals to ServiceLink ... There is a state caregiver grant that sometimes has varying levels — I don't know the status of it at this moment, but I do know people continue to apply for and get them — and that's accessed through ServiceLink. That can be quantities of money that can then be in turn used to pay for respite care ... We talk about do people by chance have long-term care insurance, most people don't, but if they do that can be a payer source for private caregiving at home. We talk about things like is there ... facility placement on the horizon that we need to think about. That's a really difficult thing for people emotionally to look at, but sometimes the care needs exceed what can be given safely at home ... Opening up one pathway of questions leads to more questions, so it really does lend to needing someone to navigate with you. And I know ServiceLink does options counseling and long-term care counseling for anybody who calls them.

What resources are either in the area but people can't afford to access or that you wish we had locally but don't?

Evelyn: From my own perspective, it's a much more tangled difficult-to-resolve issue. It's the overall ability to retain people in that kind of caregiving ... We don't have a lot of buy-in to the type of funding that could pay people better to keep them or attract them to these roles. There's so much burnout that's involved in it because it is a lot of trying to meet the needs of people who have much bigger needs ... so I think the biggest gap, from my perspective, is that we have just a big need and we don't have a great way to pay people for it, people don't have their own money to pay for it, so that's the big crisis, I think. The homemakers, the LNAs, the people who are really the engine of keeping people safe, it's hard to keep them doing their jobs if we're not able to have other parts of the system cover them, insurance, et cetera.

John: Medicaid funding, there is some sort of myths out there, or maybe it's just large fears, of 'Oh, I'm not gonna ask the state for funding. I'm not gonna go to Medicaid funding. I've never been eligible for Medicaid so I must not be now ...' and that's not always true. The states recognize that it's in their financial best interest to not bankrupt the entire family when someone is need of care so they've set up programs and set up ways to provide funding for families that allows the spouse or the children to carve out and separate their resources from the person who needs the care. I don't want to glorify it or make it seem simple ... but that can be a great option and it's worth exploring that.

Evelyn: ServiceLink really is the gateway for people applying for that long-term Medicaid program that John described ... It's always worth the exploration, which is why we encourage people to talk to ServiceLink or we give our own high-level overview of what that program could do for them. And again, what it does is long-term Medicaid is set up to function either as some home-based supportive care in the community for people who need help or, if and when the time comes to need to get facility-based care, it can serve to cover that level of care for facilities that will accept that as the pay source.

Why is self care important for caregivers, and how do they find the time?

John: It's a huge issue, and in some ways it's obvious, and in other ways, what I've experienced happening, is people suddenly they've gone too far. So they think, 'Oh I can do this, I can do this,' until suddenly, they are way into a process with a loved one and ... they are out of gas. And then at that point, trying to find resources and find help when you're already kind of empty is quite challenging. So really getting out ahead, I can't stress that enough. I totally understand and I was there myself taking care of my own mom at the end of her life, where it sneaks up on you, and you're obviously no good for the person you're caring for ... or less effective as a caregiver. And if something happens to you where you hurt yourself physically or otherwise, then you're really stuck.

Evelyn: One of the things in meeting with folks on a regular basis is ... whose in your network? Who would you call if you couldn't get out the store? And sometimes sadly, that's an unanswerable questions where people don't have resources. But I think, going back to that isolation piece of caregiving, and like John said, that you've bypassed that point of no return ... if you have people that you can identify in your network and try to have them keep some tabs on you too. Not everyone loves that idea, but I think about myself and, like John, when my father was alive having his end-of-life issues, luckily there were others in the family that were saying, 'You need a break' or 'You need to pull somebody else in ...' That's one of the first pieces that I recommend is think about whose in your network and again, if we can't find somebody, that's when we start to think how can we build one. Maybe it's joining a support group and meeting some peers, but yeah, we don't always know when we're fried.

What kinds of self care would be beneficial?

John: Sometimes it's just taking a half hour to walk down the end of the driveway, or if they have some passions around artistic pursuits or otherwise, absolutely trying to maintain that. Every situation is different, but often it can be a marathon, so just recognizing that early on and doing those little self care things are huge.

Evelyn: I think too, routines and schedules. We don't always follow them, but I think sometimes setting them up can give us a sense of control, especially if we're in a situation where there's a real lack of control that we have. By plugging self care into that schedule, I think that can be a really great strategy.

What advice would you give a caregiver who may not know where to start? What are the first steps?

John: I'm certainly happy to talk to people, even if they are in that initial stage of 'I don't know' ... I'm happy to have that initial conversation with people to talk about options and whether it makes sense to jump into a caregiver group or if they're might be another route. But it would also be totally fine and relevant for them to go to ServiceLink first.

Evelyn: To John's point, reaching support, whether through a support person like himself or if its practical needs, then ServiceLink. But I also, from a problem-solving standpoint, thinking about that question of: What has changed? ... Because, if it turns out they're at their breaking point because their loved one isn't sleeping or because they can't get them to eat or one of these things, that triggers that medical question of maybe we need to have you check back in with the primary-care provider ... There might be something that needs to be addressed on a body level that could right the ship ... We also, as an agency with a beautiful hospice program, we want to talk about hospice early with people because its a Medicare-funded benefit that is available to all of us if we are potentially reaching the end of our life and showing indicators that maybe we just want focus more on comfort at home, and wrapping a little more support on the caregiver, as well as the patient.

Olivia Belanger can be reached at 352-1234, extension 1439, or obelanger@keenesentinel.com. Follow her on Twitter @OBelangerKS.

This article originally ran in The Check-Up, the new weekly email newsletter from The Sentinel's Monadnock Region Health Reporting Lab. To sign up for the newsletter, and get the latest from health reporter Olivia Belanger delivered for free to your inbox every Monday, visit sentinelsource.com/newsletters/newsletters — signup

___

(c)2022 The Keene Sentinel (Keene, N.H.)

Visit The Keene Sentinel (Keene, N.H.) at www.sentinelsource.com

Distributed by Tribune Content Agency, LLC.