Welcome to CareAware Video #6: Know Your Resources

Introduction:

Lewis: I think it’s important for family and for the person who is suffering from a terminal illness, or any other kind of progressive illness, to know their resources.

Caine: I find, with a lot of my patients and family members, “Wow, I wish I had known all of this. I suffered so much. Those first few weeks and months taking care of my loved one, if I had just known about this resource, I could’ve gotten rid of all the frustration between myself and my loved one, because I just didn’t know.” So I think it’s so critical that every new caregiver, they need to have an orientation.

Scott: Raising a child with special needs, having a network is probably more important than even when you are raising a typical child. There’s always things that you can learn from other people.

Lee: We were very lucky, in that we had a lot of support from our church.

Ventresca: One thing that I’ve learned about finding out about resources of what you need in doing this, is the social workers are just absolutely invaluable.

Austrom: There’s no road map or secret code to prepare you for your role as a caregiver. Caregivers tell us time and again that it’s often more like an obstacle course, full of unforeseen hurdles and unique challenges. But knowing what to do and how and when to do it helps us manage our emotions. We can keep those under check. It helps us manage difficult and challenging circumstances, which ultimately helps us make much better caregiving decisions. Hi, I’m Dr. Mary Austrom, the Wesley P. Martin Professor of Alzheimer’s Disease Education here at the Indiana University School of Medicine.

Bell: And I’m Orion Bell, president and CEO of CICOA Aging & In-Home Solutions. We’re your hosts for this video series, and we’re glad you’ve joined us. 

Austrom: In earlier videos, we’ve talked about the need to learn as much as possible about your loved one’s disease or disability. We’ve shared some organization and communication strategies. And we’ve stressed the importance of taking care of yourself first, so you can provide the very best care possible.

Bell: We’ve also touched on the need to surround yourself with others who can help you care for your loved one. In this video, we’ll expand on that idea and offer tips from our subject matter experts and caregivers about additional community supports and how to incorporate them on your team. These resources can help you navigate the obstacle course before you with greater confidence and skill. Welcome to CareAware.

Who Should Be In Your Caregiving Network?

Caine: Number one person: someone who has an expertise in being a caregiver, knowing all the knowledge, the skills, and the tips, but more important than that, those resources that you need that you might not even be aware of, hadn’t even crossed your mind, in order to make your life, and your loved one’s life, a comfortable situation and a healthy environment.

Keers: A caregiver network looks different to every caregiver, but that caregiver network is so critical because it really can be a lifeline to the caregiver. Caregiving is very rewarding, but it’s very challenging, and that caregiver network should be there to celebrate with you when you’re feeling very rewarded but then they step in and provide some help when you are challenged.

We have seen beautiful caregiver networks develop from individuals. The people in your caregiver network should be the people that you trust, people who are there for you emotionally, spiritually especially. That community may be co-workers, it could be your children, it could be your brothers and sisters, nieces and nephew, depending on your family situation. It could include people from your faith community or from whatever social support systems you developed over time.

Lee: People in the church came to our rescue in the last couple of years. The men built a ramp in our garage so he could get in and out of the house and come to church on Sunday. The women would cook meals for us once or twice a week, so we didn’t have to worry about that.

Scott: I have a really good group of friends that I met when I was in high school. Some that I actually grew up with since grade school, and they’ve all been very supportive. And now we are all married and their wives have become supportive as well. And even just people that I met along the way in life through college and everything have become part of the network as well. So really, I have my family, my wife, but I also have a really good close group of friends who are not going to let me be helpless. They’re going to push me to be more independent, but they are going to be there if there if something comes up that I do need assistance with.

Keers: One gentleman that I know, he was caregiving for his wife, and he could tell what the progression of her disease was going to be. So he was really quick to bring in her friends, her support system, and say, “I know you would all want to do something to help my wife. These are the tasks that I need help with, these are the times of day. Can you do that for me?” This individual literally had these women who were his wive’s best friends sign up for time sheets on the days and the times and the tasks they felt like they could help with.  So he knew every Tuesday and Thursday that somebody was going to be bringing a meal. He knew on Friday someone was going to come over and provide some social time for his wife. He knew that he had help with the laundry. And on, and on, and on. He knew when he could get out of the house, which was really important to him and to planning his schedule. And as his wife’s health deteriorated, he knew that there were a group of people who had shared that caregiving journey with him, who were going to be there for him as their caregiving situation changed. And it did. And when she passed, once again, he had a great support there for him, even through that grieving process.

Karen: One of my nurses, she makes sure she’s always, she’s my second hand, to make sure all of Andrea’s appointments are scheduled. One of the other nurses, she knows, clears my mailbox. My mom’s caregiver, she knows what’s going on with my mother. And if she knows she’s running out of medication or supply, we have little systems in place that are my reminders that I need to take care of something.  So you have to learn how to delegate things that are just too much for you to handle, and someone that you are confident with taking over that  responsibility. I have another daughter. She’s 25. She works in the medical field. She is an excellent person that can come in, and she can sometimes, when she’s not here all the time, then she can come in and see some things with her Granny or with her sister. And she’ll bring things to my attention. She’s made it a habit to stop over and make sure things really are on task like they should be. And if we need to change something or tweak something, she’s right on task there for me.

Ventresca:  This team that I’m telling you about has only come into place since August. There are my brothers and sisters, and there are some close friends. That’s always been there. But the current team with Dad…I have some friends, Barb and Al, and they actually own a cleaning business, and they come to the house every four weeks and clean it just beautifully. So, I don’t have to worry about it anymore. I used to worry about the floors getting dirty and all that, and I don’t think about that at all. Sister Betty, she’s a Benedictine nun from Our Lady of Grace Monastery down in Beech Grove. She comes in about once a month and gives Daddy—it’s called cranial sacral therapy—and the first time I ever saw it administered was when Dad had his bypass surgery. But it’s a very relaxing thing for Dad. So Sister Betty’s on the team. Barb and Al. Kevin is a nurse from Life Journey, ‘cause Dad was found eligible for that program, like Mother. So it’s doctors, nurses, healing touch, cleaning…and oh, CICOA. This lovely man named Bill comes every morning Monday through Friday and brings a meal for both Dad and James. That is good food. They love it, and I don’t have to think about preparing the food in the mornings for them.  How the team came into place–besides the grace and providence I talked about—we do have a family meeting every year at Christmastime when everybody’s here. It kind of just fell into place. And the thing that I’ve noticed with all of this is, you get a plan going, and then it’s always, always evolving and changing. And you accommodate, and it gets better and better for the most part.

Professional Resources:

Austrom: Professional resources are all around us, but many times most caregivers aren’t even sure where to start. CICOA Aging & In-Home Solutions can help connect you to local resources here in Central Indiana. However, if you or your loved one lives in another part of the state or country, you should know that there are Area Agencies on Aging in your community, and they can do the very same thing for you. You can search for your local area agency by zip code at n4a.org.

Bell: CICOA also offers a Solutions Guide on its website. The Solutions Guide is a free directory listing community organizations, programs and services that serve older adults, people with disabilities and family caregivers. This guide includes listings for providers of basic needs, education and enrichment programs, health care, income support, legal and caregiver services, county senior services, home repair assistance and much more. Help is available. You just have to know, and then ask.

Stone: I think that contacting your Area Agencies on Aging is a good way to find out what resources might be available, whether you have to pay for them, or you might be eligible for a program. Don’t be scared off by having resources or income because some of these programs do have eligibility based not on your assets and income. The advice is free, and they might have a list of professionals that you can access like elder law attorneys or other professionals that can help navigate you through the system.

Keers: Your caregiver community should also include some professionals, even if it’s just one person that you know you can call and ask for advice. That may be your local senior center program, it could be somebody at CICOA, your loved one’s care manager. Somebody that you can talk to and say, “This is something new I’ve never experienced before.  What works? What resources are available?” Those individuals can give you tremendous amount of support and resources that you may not even know exist.

Woodsworth: I think if you have to work and be a caregiver at the same time, it really is essential to identify your resources and to be comfortable asking for help. To be able to talk about the fact that you’re a caregiver, whether it’s to your employer because they may have some sort of support through an employee assistance program, or whether it’s to family and friends so they understand how much you’re trying to pull together to be a successful caregiver and employee.

Ventresca:  I didn’t know what a social worker was really, and now I realize they’re the conduits, to a large extent. Certainly when dad was at Community North, he was in a psychiatric ward for ten days in August. The conduit between the psychiatrist and us was often the social worker. She’s just been huge in telling me what was available. So that’s what I learned: social workers know the resources; listen to them. (pg 14)

Resources for Children with Special Needs

Scott: People that should be in a network for a child with special needs, needs to obviously be those things that touch those points that you are needing at that point in life. Whether that be a childcare provider,  possibly. It could be an educator, when the child gets into school. It could be someone that’s helping you plan for the future, such as an attorney that’s helping you look towards guardianship or a special needs trust. I think the most important people in the network, besides family and close friends, are those people that are also raising children with special needs. Do not be a lone ranger. Do not do it alone. As far as community resources, there are many, many, many. But there are some main kinds of hubs you can go to, to find community resources. It’s according to what you are looking for. If you’re looking for something along legal lines, clothing, food, more of a social work kind of need, 211 is a wonderful resource. They have wonderful operators who are passionate about what they are doing. I’ve met with many of them over the years, and they are really very helpful.  Other places to go would be your Area Agencies on Aging…making sure also that as your kid grows up, that you know about the Parent Training and Information Center,   which for the state of Indiana is IN*SOURCE.  Knowing about the Health Information Center for the state of Indiana, which is Family Voices. They are all parents of children with special needs, too. And then also the parent-to-parent organization which is About Special Kids for the state of Indiana. All of these can be found across the nation in almost every state. When we talk to families at About Special Kids every day, it is really hard for them sometimes to realize that their child is going to outlive them, and that not asking for help as they go along now, is going to not have a good outcome when that day comes that the care has to be turned over to somebody else.  In many ways, as we raised Brandon, I made sure I was getting us and him ready for the next stage. And for that reason, that’s why we had a caregiver in the morning through his Medicaid Waiver come in when he was in high school—junior high and high school—to get him ready for school. Which was kind of weird. People say, “Well, you had all those people in the house…his sisters, and his dad and mother. Why were you hiring somebody to come into the house? And the reason was, mostly, not because we needed the help. Mostly it was getting him ready when he went to school, went to college or out in the world as a young adult, that he knew somebody else was going to be taking care of him. It wasn’t always going to be mom and dad. And they could take care of him, they could take good care of him. And how was he going to manage that himself and oversee that care? So I know parents are reluctant sometimes to want to think about that, but it’s inevitable. It’s going to happen. And so you need to get your child ready. You need to get yourself ready to know there are other people out there that can take care of your child, and love your child, and make positive outcomes.

Pierce:  We call it navigating resources in the community when we’re working with particularly a brand new caregiver. Because, as I mentioned earlier, when you’re two generations separated from the children that you’re raising, there are lots of changes in our community, both positive and negative. And so, helping grandparents navigate, “What are the resources available to me? What kinds of medical resources are there?” Many of these children are eligible for Medicaid, but that’s a navigation project in and of itself, that our case managers would help a grandparent navigate. Oftentimes, these children are one or two years behind their peers, educationally, and so making sure that their educational opportunities and rights are exercised in the school setting is another important navigational priority. I always say that school is a child’s life work. And so wanting these children that we’re now a part of their extended family, to be able to succeed in school, is just vital. And that makes life happier not only for the child, but for the grandparent who is providing the caregiving as well.

Medical Resources

Oetjen: People in your caregiver network should be, if you have them, family. If you don’t have family then some close friends of either yours or your care recipient. The doctor…any and all of the doctors.

Boustani: We believe it’s very, very important for our team at the Sandra Eskenakzi Center for Brain Care to work continuously with the family on making sure that the healthcare team understand their own preference for the future when they face a major healthcare problem.  It’s really a process, dynamic process, evolving process. We, in our team, have one promise to the patients and their family, that we will always be on their journey bus by their side. Help them navigate the system, help them manage their relationship and their disability, make sure we have maximized their social and physical environment for both of them to have the best quality of life possible and best quality of care at the lowest, affordable care for them.

Saxman: I also think that you need to access disease-specific community resources: The Alzheimer’s Association, the ALS Association, the American Cancer Society. People who understand the disease process that you’re dealing with are very important members of that, too, because they can give you more disease-specific information.

SHIP Counseling

Moyo: SHIP counselors are available locally to help answer questions about insurance plans, the different plans. And they are a group of people who are not paid to sell you the best plan, but they sell you on the plan that works best for you. So that would be my first avenue in terms of accessing what I need to purchase. And then visiting the medicare.gov website as well, and calling…they have 800 numbers where folks can get on and understand their coverage as well.

Senior Centers

Keers: People often say that their senior center is the best kept secret in the community, and they don’t want to be. They want you to call them.

Veterans

Keers: If you’re a veteran, if the care recipient is a veteran, there are other supports that are available specifically to them. So reach out. Sometimes your American Legion will have information and can get you connected to the right resources. Contact the VA hospital and ask them what supports are available. That support in your community may be transportation. It could be respite. It could be a lot of different things that can help you succeed as a caregiver and help your care recipient live independently.

Lewis: Veterans benefits are available to a veteran or a veteran’s widow, if the veteran has served at least one day during a war time period and has at least 90 days of active service. The veterans benefit can provide in-home care. So it can be a significant addition to your planning toolbox, if you have a veteran in your family. In addition, the veteran’s benefit can pay a certain stipend. It’s a special pension benefit which can assist you in paying for long term care and an assisted living facility, or even in a long-term care facility. (pg 8)

Ombudsman

Qualitza: If you are in a facility, whether if it be a nursing home facility or an assisted living, you have the ombudsman there that is there to advocate for you.

AARP

Moyo: AARP has a lot of resources. One of the most important is our Caregiving Resource Center. That’s an online resource. The Caregiving Resource Center will provide caregivers with opportunities to find things like budgeting tools, questions to ask medical professionals, blog sites for tips for caregivers, as well as an online network of other caregivers that they can sort of communicate with and relate with in terms of being able to find support for themselves within their local communities.

Adult Day Services

Pellman: Adult day services are the most cost effective form of care other than unpaid care. An adult day center will usually charge around $70 to $75 a day for care, and maybe $45 to $50 for a half day of care. That compares very favorably to having a caregiver come to your home through an agency, which is usually about $20 an hour. And certainly we know that care in a facility such as an assisted living or a skilled facility is much more costly. It’s about getting that person engaged in the world, about meeting new friends, doing things that they find enjoyable within a setting that they can be successful in, among people who are trained to care for them and meet their needs.  We’re often surprised when a family member comes back and says, “Oh, I had such a hard time getting my mother, my father, my spouse to come. But now that they’ve been coming for a couple of weeks, they really are looking forward to it. I find that they’re eating a little better, they’re sleeping a little better, their mood has improved.” So we see these quality of life improvements which I think can only happen when somebody gets that social engagement and stimulation that we all need.

Woodsworth: Having a caregiver that’s working is a great reason to use adult day services. Another good reason is simply for the caregiver to get a break, get a little bit of respite, and have some time where they don’t have to worry at all how their loved one is doing, and they can hopefully focus on something for themself. (pg 12)

Pellman: Stillwater’s Adult Day Center is a facility on the northeastern part of Indianapolis. We’ve been around for about five years. We’re one of about 20 such facilities in the eight-county area. We serve about 20 to 25 seniors each day. Some of them come every day; some of them come as little as one day a week. Our average age is probably mid-80s. We have an age range of mid-50s up to, I believe our oldest guest is 98 years old now. So folks come there for a variety of reasons.  But the biggest one is it’s not really a good idea for them to be at home alone any more. They may have some memory impairments. They may have diseases that they can’t manage, such as diabetes or Parkinson’s, and they’re not able to self-care. Their caregivers may need respite, or they may be working. So there’s a variety of reasons there. I think the overarching benefit of adult day, as opposed to other forms of care, is it provides that social stimulation, that place to go, that feeling that this is a place where I belong, where I will be around people who are nice to me, where we’ll have an enjoyable time, and I know I’m safe there.

Woodsworth: Catholic Charities has several programs that focus on elder adults services. Those include A Caring Place Adult Day Services; the Senior Companion Program; RSVP, which is a volunteer program; and our Caregiver Support Program, which focuses on support groups. A Caring Place is located in the Butler-Tarkington neighborhood. It provides transportation, and supervision, and socialization, and activities during the day. They are able to come Monday through Friday and socialize, work with volunteers, work with physical therapists, occupational therapists, basically have physical and mental stimulation to keep them connected to the community and doing as much as they can for as long as they can.

Support Groups

Woodsworth: Our caregiver support groups meet monthly. We do a variety of community professionals. We invite them to come in and speak with the caregivers about something that may be happening, or programs that are resources for them. So for example, we may have CICOA come in and speak about their services. We may have the Alzheimer’s Association come in. We may have an elder law attorney.  But we break that up with months where we just have open discussion and the caregivers are able to sit down and talk about what’s happened to them lately in terms of the caregiving that they have to provide. 

Scott: One thing that has been very helpful for me from the very, very beginning, and I still am passionate about it, is making sure that parents of kids with special needs are hooked up with other parents with children with special needs. And the reason that’s so important is because there is an alone factor. I had lots of family, I had lots of friends that were willing to be there for us, but no one really knew exactly what I was going through emotionally, physically. 

And when you are talking to another parent of a child with special needs, whether that even be someone with a different diagnosis, there is a connection there that nobody else can connect with. There’s a heart-to-heart connection there. And you can say things and feel out each other in ways that you can’t with other people. And so, I a just a real proponent for people getting hooked up, whether it be through support groups or getting matched up with somebody in your area that can help you work through these things.

Conclusion

Bell: We know the caregiving journey can be a difficult one, full of obstacles. And some of those are easier to navigate than others. In your busy, busy life, we are honored that you invested the time to watch this video series.

Austrom: As you continue your caregiving journey, remember you do not have to walk it alone.  If you viewed this as part of a caregiver support group, then we trust you have experienced the value of sharing your story with others.  If you are watching this video alone online, we want to encourage you to put into practice what you have learned here.  And above all, please invite others to walk alongside you in this journey to become more CareAware.

• If you were an Olympic athlete, what sport would you compete in?
• If you could have dinner with one famous person still living, who would it be?
• If your life was a movie, what kind of music would be in the soundtrack?

• Who is in your support network?
• What have you found to be a helpful resource?
• What challenge are you facing that an outside resource can potentially help with?
• Does your employer have an employee assistance program? Have you ever used it for counseling about your caregiving role?
• As a result of the CareAware video series, what is one change you will make as a caregiver?
• Review the Caregiver Weekly Check Up