A Conversation About Caregiving

SUMMARY
As a contractor for Medicare, Kepro serves as the Beneficiary and Family Centered Care Quality Improvement Organization, also referred to as a BFCC-QIO. While Kepro provides BFCC-QIO services in 29 states, the general information is relevant to everyone who has Medicare (including Medicare Advantage) and everyone who works with people who have Medicare.

One of the topics that Kepro works with quite a bit and partner to provide information on is caregiving for those with Medicare. This podcast episode coincides with National Caregiver Month, and we are happy to bring you a conversation between Nancy Jobe, one of Kepro’s Outreach Specialists, and two of her partners who will serve as her guests. Nadine Walter from Oklahoma and Gabe Goeres from Montana are speaking about caregiving programs that are in their states and may be available for you as well.

Gabe Goeres was born and raised in Montana. He has spent 12 years working with at-risk youth in the foster care system in Missoula, and five years managing group homes. In his role as care management program manager at Missoula Aging Services, he continues to serve his community.

Nadine Walter began her career in the field of gerontology in 1990 at an Area Agency on Aging in Duncan, OK. She advanced to the state office, OKDHS Community Living, Aging and Protective Services, where she has monitored Area Agencies on Aging; served as the senior housing and legislative liaison; developed and interpreted policies and procedures; and developed the State Plan on Aging. Currently, Nadine oversees several federal and state funded grants that provide supports and resources to individuals with special needs and their family caregivers.

For more information about Kepro BFCC-QIO, please visit www.keproqio.com.

KEY TOPICS
01:30 Overview, introduction.
05:00: What is caregiving?
06:15: Who are caregivers?
08:40: Challenges of caregiving.
10:15: What does respite mean? Respite programs.
12:10: Memory loss programs.
18:30: Advice for caregivers.
21:45: Resources

SUBSCRIBE
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RESOURCES

• Area Agencies on Aging: https://eldercare.acl.gov/Public/Resources/Topic/Caregiver.aspx
• The National Alliance for Caregiving: https://www.caregiving.org/
• Caregiver’s Conference: https://coalitionofcaring.org/

KEPRO’S WEBSITE

• Immediate Advocacy services: www.keproqio.com/ImmediateAdvocacy
• Information for stakeholders: www.keproqio.com/partners
• Information for people who have Medicare: www.keproqio.com/bene

Music: Motivational Upbeat Corporate by RinkevichMusic
https://soundcloud.com/rinkevichmusic
Video Link: https://youtu.be/U78mgVaM12M

Transcript

Welcome to Aging Health Matters, a podcast from Kepro, a Beneficiary and Family Centered Care Quality Improvement Organization. We plan to cover healthcare topics for the Medicare population. The information in today’s show may help you or someone you know in their healthcare journey. Thanks for joining us; now let’s get started.

Scott Fortin

Hello everyone and welcome to another edition of Kepro’s podcast, Aging Health Matters. My name is Scott Fortin, Kepro Director of Communications and Outreach. As the QIO for 29 states, one of the topics that we work with quite a bit and partner to provide information on is caregiving for those with Medicare. Today’s podcast coincides with National Caregiver Month, and we are happy to bring you a conversation between Nancy Jobe, one of Kepro’s Outreach Specialists, and two of her partners who will serve as her guests, Nadine and Gabe.

As a reminder, we sometimes invite our partners to participate in our podcast based on the topic. While we greatly appreciate their partnerships, we also want to be clear that the opinions and guidance expressed by them in this podcast is solely theirs or their agencies and are not necessarily those of Kepro, CMS, or the Medicare program. Please keep in mind that state by state guidance may differ as well. And with that, I’ll send it to Nancy to introduce her guests further and talk more about caregiving. 

Nancy Jobe
Thank you, Scott. I'm Nancy Jobe. I am an Outreach Specialist for Kepro, and I am tasked with sharing what Kepro does and what services we offer Medicare beneficiaries. Today we're going to be talking about caregiving. Who are caregivers? What do they do, and what resources are available to them?

And today on the podcast we have Nadine Walter from Oklahoma and Gabe Goeres from Montana that's going to be speaking about caregiving programs that are in their states and may be available for you as well. Let me just go ahead and have Nadine tell a little bit about herself and what brought her to this type of work.

Nadine Walter
Hello everyone. Thank you Nancy for having me on this. It's exciting to share information for caregivers. I am in Oklahoma. I work for Oklahoma Human Services, which is a large state agency, and the Division I work in is Community Living, Aging, and Protective Services. That's a lot. But we do help individuals across the lifespan and do focus on aging, individuals that are aging, or have special needs. And then we have the Adult Protective Services also within our division. I have the pleasure of overseeing several federal and state-funded grants. So what's interesting about these grants is they all connect to supporting family caregivers, and as we all know, supporting those family caregivers supports those loved ones and keeps individuals at their homes where they usually would like to be.

I got into this field when I was in high school and college. I was raised on a family farm, and when things were slow on the farm, dad would let us work in town, and I worked in a small nursing home and did about everything you could imagine as far as cooking, cleaning, nurse’s aide. I knew a lot of the individuals in the facility, and it just saddened me to see how isolated some of them were and lonely. And I just thought, you know what, I'm going to go on to school, and I'm going to make a difference. So I became a gerontologist at Kansas State University and have never looked back. So that's who I am and how I got here.

Nancy Jobe
Thank you, Nadine. Gabe, why don't you tell us a little bit about yourself?

Gabe Goeres
Yeah. Thank you. Thank you for having me. So I am the Care Management Program Manager at Missoula Aging Services in Missoula, Montana. I oversee the Care Management department, and our care managers in our team support several different groups of people, but what we're really excited about is this last year with our creation of our memory care support services, and we were able to create that from a grant that we received from the Administration of Community Living. We're working with individuals who are living alone and experiencing Alzheimer's and related dementia and also working with family caregivers taking care of someone who's experiencing Alzheimer's or related dementia.

What drew me to this work? Why I'm here? I'm a social worker by trade. I did not go to school for it. Initially, I worked in group homes for at risk youth, and I did that for almost 12 years. I was managing group homes, and then I decided I wanted to change and found this opportunity and never looked back since. It's been really fulfilling work.

Nancy Jobe
Thanks Gabe. Now we know a little bit more about Nadine and Gabe. Now hopefully they can answer some questions for us about who are caregivers, and what do they do? Gabe, can you enlighten us? What is caregiving?

Gabe Goeres
Sure, I would love to try. So caregiving is providing care and assistance to someone who is unable to meet their needs independently and on their own, so it can look very different, somebody needing help and assistance with meal preparation, getting groceries, and all the way up to personal care and helping them complete their activities of daily living and also what kind of adds layers is a lot of times people don't realize that they're in a caregiving role, especially if they don't live with the person who they're assisting, but caregivers can be people who call to remind, people who are caregiving from afar. And a lot of times in those situations, people don't realize the strain and stress that that can put on to their lives, just having that added responsibility.

Nancy Jobe
Gabe, you made a good point because caregiving isn't just a hands on right next to somebody but is that family member that's from a far trying to set up things for their parents or something. 

Gabe Goeres
Exactly.

Nancy Jobe
Nadine, could you tell us a little bit more about who are the caregivers? Because I mean, we all have in our mind a typical idea of a caregiver, but there are a lot of caregivers that we’re not really aware of.

Nadine Walter
That's so true, Nancy. And again, I'll say again what Gabe is saying is that a lot of individuals don't even realize they're a caregiver. They have no idea. And as far as who is the caregiver? You know you think of the typical, maybe a spouse or a partner, a child caring for a parent. Those are pretty typical, but we need to also remember caregivers can be a friend or a neighbor. They can be a sibling, now that children with special needs are living well into their adulthood. Parents pass on, and so the siblings are stepping up to care for their brothers or sisters with special needs. That has become a source that we're trying to support more. Then we have the children or the parents of children with special needs. Again, that's somewhat typical, but one of the things that we're really seeing here in Oklahoma are grandparents and other relatives raising children. In our state, the high incarceration rate is leaving grandparents and other relatives raising children. And so I love Rosalyn Carter's quote. She says it so well. She talks about there’s only four kinds of people in this world.

You either are a caregiver, you have been a caregiver, you will be a caregiver, or someone will care for you someday. That hits everybody. So when you ask me, Nancy, who are caregivers? Everybody. They either will be, have been, are, or will need someone. I love that quote. I always say it in all my presentations because I think it's very enlightening. It does affect everyone.

Nancy Jobe
That is definitely a great quote. I'm going to have to remember that one myself. So I can certainly relate to that myself. I know I'm a caregiver for my parents, so I understand how the roles shift from the children for the parents, and but there are some challenges that go with being the caregiver for sure.

Sometimes it's just a frustration level of trying to take care of yourself and take care of someone else. Nadine, have you seen some of the challenges that people are going through as a caregiver?

Nadine Walter
It's overwhelming. It can grind on you after a while. At some point, you go in with the best intentions, and over time, it becomes very challenging. Individuals, if they're not intentional, they forget to take care of themselves, the caregivers. They have to be intentional in getting respite, getting a break. Don't feel guilty about it. A lot of caregivers feel guilty about leaving their loved one with someone else for a few hours, so they can go take care of their own medical appointments, hang out with a friend, just spend some time, lack of medical attention. They cut out their leisure activities. They become resentful. They don't mean to, but they do. They neglect their other responsibilities, so you can imagine things just kind of snowball on them. So there are a lot of challenges.

I always just try to encourage family caregivers to not feel guilty, do what they need to do to take care of themselves, because if they don't take care of themselves, who's going to take care of their loved one?

There is a statistic that says approximately 30% of caregivers die first. So we need to really encourage them to not abuse their own bodies, minds, and spirits while taking care of others. No one wins, so I really encourage them to get respite and be intentional on it.

Nancy Jobe
That's great information, Nadine. And you mentioned respite. Can you explain to people what respite means? And maybe I believe you have a program in your state for respite care and explain that a little bit and let us know if that's available in other states as well.

Nadine Walter
Respite is a planned, or it can be an emergency, care provided to a child or adult with special needs in order to provide, like temporarily to that family caregiver of the individual. So it's a break. In simple terms, it's giving that family caregiver a break. And a break, Nancy, your break would be different than my break. I may want to go take a walk. You may want to go take a nap. Gabe may want to go shopping. Who knows what everybody's situation is and what their respite is. There are respite programs. 

We have several in Oklahoma due to several different pot funding opportunities. Every state does have the Older Americans Act Funding, which funnels through the Area Agencies on Aging that provide respite to individuals that are caring for someone over 60 or grandparents raising grandchildren 55 plus. So that's an opportunity to reach out to the Area Agencies on Aging in your state and ask for respite. And I highly encourage it.

Nancy Jobe
That's great information. I know that there's many times that I've had to reach out to friends to give me respite, so it's a very needed piece of the caregiving puzzle, so that you stay on top of your game if you're going to be caring for someone else. So that's great information.

Nancy Jobe
Gabe, you mentioned earlier about your memory loss program there in Montana. Could you tell us a little bit more about that? And is that something that's available in other states as well?

Gabe Goeres
Yeah. So we started for Missoula, Missoula and Ravalli county. It's not statewide. We started memory care support services. But we are able through some of our other programs to assist people across the state. And one of the things that we found actually through the pandemic and having our support group go into a remote setting utilizing Zoom was that we actually expanded. We saw a rise in our caregiver support group attendance for two reasons. One, people who lived out of the area and weren't able to come in to attend that were able to join, and two, some people weren't able to join because they couldn't leave the person who they were taking care of. And so with it being in a remote setting, they were able to join from their homes.

For what we're trying to do in memory care support services is as far as family caregivers taking care of people who are experiencing Alzheimer's or related dementia, we utilize a program called T Care, which is an online assessment program. It involves a screening and an assessment for them to develop a baseline for us, to see where the caregiver is at, what are the highest areas of stress and caregiver burden and caregiver identity discrepancy, which I can go in and explain those more in depth if you would like. But it establishes a baseline, and then from that assessment, we're able to kind of draw out, here are the areas of highest stress and burden and burnout and what services exist in our area that we can connect caregivers to, so that they can see some of those stressors come down. And then we are we are able to follow up every six months to do a reassessment to track the progress. Is this care plan working? Are there other services that can be put in to help?

And so if people are curious if they're state has something like this, the best starting point would be to reach out to your AAA, your Area Agency on Aging, and talk to them and see what exists. The tricky part about AAAs is what our now retired, just recently retired executive CEO used to say is if you've seen one Area Agency on Aging, then you've seen one, and each one can be very different as far as what services they provide. So the best starting point is to reach out to them and see what's available in your area.

Nancy Jobe
That's great news because I know that the Area Agency on Aging is a great resource tool in everyone's state and county, so that they can reach out to them and find out other resources that are available, not only just caregiving but all kinds of resources that would be available that would help them even taking care of someone else and finding the resources available for the people they are caregiving for.

Nadine, you mentioned to me something about a conference that you are having that people that are caregivers can attend virtually. Could you tell us a little bit more about that?

Nadine Walter
Yes, we are so excited. We do have an annual conference in Oklahoma, the Oklahoma Family Caregiver Conference, and the last two years, we've done it virtually for obvious reasons. This year is Family Caregivers are Superheroes, which is our theme. And we all know that is so, so true. And again, our conferences are for family caregivers across the lifespan. It will be November 1, and the time is from 10:00 to 3:00, and anyone can register for the conference. We would love to have somebody from every state attend, but okcares.org is where individuals can register and again I'll say it, OK cares.org. And be sure to put the S on the cares. okcares.org is where you can register. And what we find at our conferences, it's just not family caregivers that are attending. We have individuals with special needs that attend to find resources for themselves. We have providers all over that are attending, just to find out some new resources that they might be able to use to pass on to those that they're assisting.

We have some really great speakers that will be attending, and one of the things that is always a highlight, we always get great reviews on the panel. We have various caregivers that are on a panel, and they talk about their caregiving journey. Why did they become a family caregiver, or how, and how do they get their respite? How do they recharge? We ask them a few just very pointed questions, but they answer them very thoughtfully. And like Gabe mentioned, everyone’s situation is different. So we have a caregiver of a child, caregiver of a young adult, of an older adult, a grandparent raising a grandchild, a sibling, and also a multigenerational caregiver. So we get perspectives from all of them, and it's just really interesting. And I feel like everyone that attends can connect with someone, and we'll certainly learn something. We have lots of door prizes. And it's just a real fun event. It can get sensitive at times, but we always lighten it at the end. Our last speaker promised me you'll laugh, self-care for caregivers, so we want to leave everybody with high spirits and hope and to move forward in their caregiving journey. So please attend. okcares.org. 

Nancy Jobe

Thank you, Nadine. And that is on November the first, correct.

Nadine Walter

 Yes, correct.

Nancy Jobe
Alright, thank you so much. We've had a lot of information about caregiving today, and there are resources out there that you can check on to find out if there is something available in your state. I think the best line would be starting with your Area Agency on Aging. There is a National Alliance for Caregiving also.

Gabe, do you have any other advice for anyone that is a caregiver that we can kind of just sum up a little bit about that?

Gabe Goeres
Yeah. I think one of the hardest things from doing this work and from working with family caregivers is  kind of like what Nadine was talking about, the challenge of reaching out and seeking that help, and you know a lot of times people will have connections in their life or people who will offer, you know, I would be glad to come over and help with this and who offer it, and a lot of times, caregivers may hesitate to  lean on those supports and accept the help that is offered. If people are offering, then they want to help and to accept that help. And you don't have to do it alone. And oftentimes, it's too much to do alone forever and so reaching out and accepting the help because a lot of times people don't realize how much they're doing or how much it's impacting them. And so I really encourage them to take it seriously and try to get help where they can.

Nancy Jobe
Good point, Gabe, because usually when your caregiving you're in for the long haul. So you’ve really got to take care of yourself.

Nadine, would you like to sum up what all you were talking about as well?

Nadine Walter
Gabe really hit on a lot of things that I was thinking about when you first asked the question. I know one of the things that we've done here in Oklahoma, we have these little I would say they're like credit card or like a business card. It says something to the effect of I am a family caregiver, and these are the things that I could use help with. So when an individual approaches them and says if you need anything, please let me know, and they can pull this little card out, this little business card, and hand it to them. And it may say mow my yard or come sit with my loved one, and it has things that they can write in there, so it gives people an idea when they say just let me know if I can help. But we don't know what to do, and so this is a way for that caregiver to just hand over the card and say, here's what I need. 

And we have found that to be real successful in helping the caregiver, and they, you know, they're more empowered to get the help and accept it because they've realized that this is where they need the assistance. Again, what Gabe said, I'd just say ditto to everything he said. Reach out. Don't feel guilty. They may need you someday. And since everyone's a caregiver at some point in their life, they probably will need you,  so that would be how to sum my thoughts up.

Nancy Jobe
Thank you so much, and I love that idea about the card because I know that people do reach out to you and say well how can I help you, and as a caregiver, you're used to just doing everything by yourself. And off the top of your head, you don't think of well, I could really use some help with this, so that that's an awesome idea for caregivers. If they don't have that card, at least have a couple of things always on the tip of their tongue that they can ask someone for and not be afraid to. So that’s a great, great piece of advice for the caregivers.

Alright. Well thank you so much for sharing your time and your programs with us. We really appreciate that. Kepro again is the Beneficiary and Family Centered Care Quality Improvement Organization, and as an Outreach Specialist, I am tasked with sharing the three Kepro services. We take care of Medicare beneficiaries when they have a need for an appeal from a discharge from a hospital or a skilled nursing facility, outpatient rehab, home health, and we also do Immediate Advocacy, should they need some help with getting some assistance for a medical need from a provider, and we also handle quality of care complaints that a beneficiary may have regarding a provider. So those are the three services that Kepro and the Beneficiary and Family Centered Care Quality Improvement Organization do. We look forward to you all listening to our next podcast, which will be regarding the state health insurance programs in each state.

You can sign up for our newsletter on our website at www.keproqio.com. Be sure to go ahead and check out our website. We have many resources on there and educational tools for you about the three services I mentioned. So we look forward to having you listen to us again, and again, thank you so much for sharing your time, Nadine and Gabe, on your programs.

Nadine Walter
Thank you.

Gabe Goeres
Thank you.