The Journey of Caregiving – Insights for the Road Ahead
The Journey of Caregiving – Insights for the Road Ahead
Welcome to CareAware Video #1—The Journey of Caregiving
Hill: Honestly I think the first emotion is, I’m not going to be able to do this. I can’t do this. I can’t do this single-handedly. So it was like a bombshell that dropped.
Hershberger: No one prepared us for what is happening to our loved ones. I knew nothing. …I felt I was out there, and we didn’t know where to go for help, we didn’t know what we were dealing with. So it’s very frightening for caregivers.
Duncans: It began I would say even before he was born, knowing that something wasn’t right. And the day that he was born, he was whisked away to the NICU, and that’s where he was for the first five months of his life. And from there, the hospital helped us get everything in order for us to come home when it was time. So it’s where it began. We were more prepared, but scared all at the same time.
Scott: The future of not only myself as a mother changed at that moment, but also for our family and our future family.
Austrom: The people you have just seen are all family caregivers. Like them, you may be feeling overwhelmed with caregiving responsibilities. Or you may have been caregiving for a while now, but you’re open to learning new insights, resources, and some practical advice to help you in your role. Hi, I’m Dr. Mary Austrom, the Wesley P. Martin Professor of Alzheimer’s Disease Education and the leader of our educational core at the Indiana Alzheimer’s Disease Center, all 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. If you’ve ever been hiking in the wilderness, you know that having a map— and knowing how to navigate with it— helps you avoid unpleasant surprises. A map gives you perspective on how long or difficult the journey is and whether the path is an established, well-Leeed trail or a complex maze of intersecting paths. Whether your caregiving journey begins suddenly or develops slowly over time, whether it is short or long term, it’s important to learn as much as you can so you can be equipped for the journey ahead of you. If you have a map in your backpack and some resources to take along with you, then you’re going to be more successful, you’ll be able to provide care for a longer period of time, and you’ll have more fun along the way, too.
Austrom: Ultimately, our desire is that more family caregivers will be equipped to meet the emotional, physical and logistical demands of caregiving. Welcome to CareAware.
Bell: This is part one of a 6-part video series addressing the challenges of caregiving. Each video features advice from local subject matter experts—doctors, counselors, lawyers, and other professionals—as well as real life family caregivers, like you. The CareAware video series was produced by CICOA Aging & In-Home Solutions, the Area Agency on Aging serving Central Indiana, and was funded by a grant from the state of Indiana’s Family and Social Services Administration. If you are watching this video in a small group setting, you’ll have an opportunity following the video to discuss the ideas presented here with other caregivers. The accompanying workbook contains a place for note taking, brief bios of our subject matter experts, caregiver stories, and additional resources.
The Caregiving Journey Begins
Keers: Caregiving can begin in a lot of different ways. What we see are two most common, one, where there’s a crisis. And so there’s an incident, a stroke, a fall, something that’s catastrophic that happens. And then from that point forward, an individual requires care. In other situations, you might have a family or a loved one that develops a need for caregiving over a period of time.
Turo-Shields: So for those that find themselves in a caregiving role, oftentimes it’s a difficult role to embrace because for them they’re just a spouse, just a daughter, just a son, and it wasn’t necessarily a role that they signed up for. I find that many individuals move into it naturally and others out of a sense of duty. And that can create a lot of ambivalence or struggle for that individual who finds themselves in that caregiving role.
Boustani: So the caregiver journey of the family or friends who are taking care of their loved ones suffering from physical or cognitive disability starts much, much early in the process where the caregiver is not recognizing that her role or his role is changing. So it sneaks up on you. You’re not even aware that you are becoming a caregiver. It evolves over time. So that’s the process. You don’t even realize that you are a caregiver. And sometimes, you get a surprise when you come over to our center when we say, as a caregiver, we would like to take care of you and your loved one. And they right away respond, “But I’m not a caregiver. I see the patient; I see my loved one maybe a couple of times a week.” And sometimes, the caregivers who are long-distance caregivers in particular, they’re realizing that they’re not a caregiver just because they’re not physically involved in the caregiving process. So that’s the first step in caregiving, is realizing that you are becoming a caregiver of your loved one with a cognitive or physical disability.
Caine: If you are someone that’s involved in taking care of a friend or a loved one, whether it’s maybe taking care of their bills, paying their bills for them, or you may be the one that has to go and pick up their medications from the pharmacy because they don’t have the ability to do that themselves any longer. So a caregiver doesn’t just mean that I’m physically taking care of you, but I am taking care of some aspect of your life activities or your affairs.
Loss of Normal
Austrom: Becoming a caregiver represents change. It can be change in one’s health, there’s often a change in our plans for the future, a change in one’s roles and responsibilities, perhaps even a change in living arrangements. Each and every change, each anticipated change, is really a type of loss, and a loss which we should acknowledge and grieve.
Bell: But then you establish a new normal until your loved one has another setback, and then that cycle starts again.
Turo-Shields: Many caregivers describe that they no longer have a normal, that what they used to do, what used to be predictable for them in their lives—whether that’s working, whether that’s tending to their own family needs—becomes set aside. And so their normal now has to include the needs of their loved one. And that can bring up a host of emotions—sometimes anger, resentment, bitterness—where they just struggle. And again, it’s adjusting to a new normal for them, which may not be anticipated. And oftentimes when we feel out of control, that brings out more difficulty emotionally.
Scott: Caregiving for me began 27 years ago when my son was born. He was born with a very rare congenital challenge of missing most of all four limbs. We were not prepared for it; we did not have any early-on testing to know it was coming. So it was obviously thrown into my lap, or as I like to say, I was entered into a new culture at that point in time. And that really changed that really quickly of what does this mean for my taking care of this baby, raising this baby? And all I could start thinking of was all the things he wasn’t going to be able to do, which was probably the wrong way to go about it, instead of the things he could do.
Ventresca: Well, as far as caregiving and loss of normal and then turning into the new normal, that is exactly what happened for me because I was used to living in my house in San Diego with my dog Mu. And I was retired from the Department of Veterans Affairs, and I pretty much could do whatever I wanted. I was going out with friends, working at the church, going to the gym, walking the dog, just taking it easy and enjoying myself. And I never particularly liked Indianapolis and wasn’t too excited about coming back here. But when I had to, I did, and the new normal is Indianapolis. And I love it, which is very surprising and very nice.
Turo-Shields: So for many caregivers, there are layers of loss that go along with this journey. Oftentimes it’s this process of losing what was as their loved one loses functioning, loses memory, and loses the ability to be independent. Then there also is a loss of what they envisioned. I had one client who specifically talked about, “I really had a vision for a 10-year plan with my husband into retirement,” and now her vision is just simply, “We just pray for a quiet day.” And so it’s oftentimes ongoing grieving as a caregiver may step into beginning to take over things that their loved one used to do, whether that’s bills, whether that’s driving, whether that’s grocery shopping, and so they begin to see the erosion of functioning, and that’s very painful to watch and to witness for the caregiver.
Caine: So I think the loss of normal means if you’re a caregiver and you’ve always been active in your social activities…a lot of caregivers have to work so they have to figure out how to stay employed, but at the same time being the caregiver for their loved ones. So that can be a tremendous demand on that caregiver, just the stress of trying to coordinate their own employment, plus taking care of their loved one. But even, let’s just say they’re unemployed and they can devote 100% of their time to their loved one, a lot may be involved in that. Patients may have feeding tubes, so I’ve got to figure out how to cleanse this feeding tube and feed my parent or my loved one. I have to bathe and clean them up. But I also have to take care of their affairs, their home affairs and their business affairs. So who’s now paying the bills for the utilities, or who’s paying their maybe home mortgage? They may have some insurance premiums that I might not have even been aware of as the caregiver and I may let that lapse, or they may have a car payment. So as the caregiver, you really have to have a better understanding of what are all the affairs related to the person I’m caring for.
Saxman: For me, coming from that dementia place, or the place of a caregiver dealing with somebody who has dementia, there are a lot of sacrifices that happen; there are a lot of losses that happen for that caregiver. And just being cognizant of what you’re giving up, but what you can also gain from that experience, you have to be looking at both of those things at the same time or it can get pretty overwhelming and disheartening.
Austrom: As a caregiver, you face a host of new responsibilities which may be unfamiliar or can be quite intimidating for you. You may begin second guessing yourself. Am I making the right decision? Can I really handle this? That’s quite a normal response, but not very helpful. Instead of getting stuck in the fear or paralysis of analyzing your responses, we urge you to use your energies in a more productive way.
Bell: Learn as much as you can about your loved one’s illness or disability and about how to be a caregiver. The more you know, the less anxious you’ll feel about your situation. Next take some time to list all of your loved ones needs. Be as specific as possible, and with that list in hand, you can better determine which things you are able to meet and which ones you’ll need to ask for help with. Then, realize that circumstances will change, which will require being flexible with your plan and adjusting it as needed. And finally, just relax and do the best you can.
Keers: I don’t know any caregivers who say they know too much. Most people feel like they didn’t know enough to begin and then to end that caregiving journey successfully.
Caine: The advantages that the professional caregiver does is that they’re usually very well-trained, and they have a certain level skill set, and they feel very comfortable because they’ve been exposed and had a lot experience taking care of different types of patients so they know really what they’re doing. They also are extremely familiar in terms of what resources are out there in order to assist them in taking care of that patient or a loved one, as opposed to the unprofessional caregiver. You have an advantage because in most cases, there’s a lot of trust and respect already built in, and love with that nonprofessional caregiver who lives in the home. But if you’re new as a caregiver you may not feel that you have the skills necessarily to take care of your loved one as these are skills that you’re developing and learning. At the back of your mind, you may be wondering, “Boy, am I doing the right thing? Do I know how to do this?
Duncans: We had to learn everything. We neither one of us had any kind of medical background, so I don’t even like scary movies, so seeing this kind of stuff is kind of creepy. Some of the stuff, dealing with the trach, holding someone’s neck. We had a whole book we had to go through; checklist and everything that we did that got checked off through a list. They say kids don’t come through a book, but ours did.
Ventresca: Well, the skills you need as a caregiver, I had to learn what those were. But thinking back on it, I worked for the VA for 31 and a half years, and a third of those years, I was a supervisor. And it was very legal stuff and very medical stuff. And then the usual things that come with being a supervisor: you learn to delegate, you have discipline, you set an example, you say thank you to people. All those things you need when you do this, I learned to do at the VA. And I sometimes think that this job is harder than what I did at the VA, honestly. I think about that sometimes.
Keers: So caregiving may involve learning a lot of medical information. It may involve learning some new skills on communicating with a doctor or a pharmacist. That may be foreign to an individual. It may be providing that personal care. Maybe they’ve never had to assist an individual with a shower. There’s a skill to helping somebody safely get in and out of the shower, to helping them learn how to do as much as they can for themselves while they’re in that shower.
Caine: I think that when you have a loved one, you have to look at what kind of conditions do they have? Are they disabled, or can they now ambulate on their own? So you have to also look inside your home to see how do you make it more accessible? You have to be very concerned about someone getting in and out of a tub. Do they now have that ability? Could they fall and injure themselves? You may have to have a special bed for them. If you’re single caregiver, and the person you’re caring for may weigh more than you have the ability to sometimes pick them up, you have to be trained how to do this without injuring yourself, your back or other areas when you’re lifting someone or you’re assisting someone. So a lot of training is involved in taking care of a loved one that you don’t injure them in the process, but you don’t injure yourself as well.
Saxman: So I think especially with dementia but any instance of caregiving, having a care plan, understanding what the process is going to be, what does the disease processes looks like, and then what goes along with that, what kinds of systems are in place to help you with that? Trying to be as prepared as possible for each step along the way can make a huge difference for caregiver well-being, but also for the person you’re taking care of.
Turo-Shields: What’s most important is just understanding that there’s no right or wrong. It’s what is the next best decision to make. For some of those trying to maintain their loved one in their house and their home, and others find that they need to bring in extra support, and still others find that oftentimes they have to consider alternative placement. And again all of those choices will unfold as the situation presents itself for the needs of their caregiver as their loved one.
Keers: No matter where a caregiving journey starts, it’s important to have a plan. So thinking through what that caregiving journey is going to look like is really important. And there are a lot of professionals and support folks in the community who can help develop that plan so that the caregiver can continue to provide care for as long as possible.
Special Caregiving Circumstances
Bell: There are groups of caregivers that face unique challenges in their ability to provide care for a loved one because of special circumstances.
Austrom: The first of these is the sandwich generation, where caregivers are often squeezed between caring for an aging parent and at the same time still have a child or children living at home. Another group are the long-distance caregivers who face challenges often ranging from trying to coordinate services from great distances or trying to provide respite or help and supportto a primary caregiver nearby.
Bell: And then there are grandparents raising grandkids. When parents are absent or unable to raise their children, grandparents often step into the role. While raising grandchildren brings many rewards, it also comes with many challenges for older adults.
Hill: Well, the caregiving journey began for me with my daughter. She’d just graduated from high school, and we were facing some mental, physical challenges, but she had kind of beaten the odds and overcome some things. And she was pretty much known as the survivor, so we thought we were on kind of an independent track. Then she had an unfortunate situation come up, and I went from being the mother of a graduating high school student to a caregiver of a lifelong patient. My mom, being one of those persons, she came in, she offered the services that she could to help me allow my household to keep some level of normalcy. And in the process, she became ill herself. She was 75 when she did that. So then I was faced with not only did I have a daughter that had special needs, now I was the caregiver of my mother that was elderly, and she needed care for herself.
Moyo: Typically it’s the mother or the wife in this situation, who has to carry the burden of caring for all of those family members. And so those stresses, again, put a lot of burden on one particular individual.
Harden: And so when you have all those pressures, and they may all live with me, when you have all those pressures under one household, and all those dynamics and everybody has their needs, that can make you feel like you’re crazy sometimes. And so the sandwich generation really needs to realize they can’t do it all themselves.
Moyo: And if we go back to our team, that’s where it becomes important, that even if you are in that sandwich generation, that you consider those children as part of your team as well.
So if you have those open conversations and let them know that this is what we’re dealing with as a family, that mom or dad or grandma or grandpa is sick, and we need to be able to all take this opportunity to care for them, and I know that you are in school and in college and I need you to take care of that college as well and handle your responsibilities, but be cognizant of what’s going on at home as well. So keeping those lines of communications open is very important to managing the sandwich generation.
Keers: In my family situation, I had parents that moved away and left me as a local caregiver. But what I saw from my parents was a lot of frustration, sometimes guilt, sometimes feelings of helplessness because they were a long distance and apart from my family member that needed care. And so once again, whether you’re a local or a long-distance caregiver, it’s really important to have a plan in place to think through what are you going to do in these situations? What will you plan to do if there’s a crisis? What will you plan to do to maintain communication? And then asking the local caregiver, “What can I do to help?”
Lee: So as far as long distance caregivers are concerned, the advice that I would have is just try to be more supportive of your siblings. Ask them every now and then if they need anything or how things are going.
Keers: Because there are things that long distance caregivers can do just as easily as a local caregiver, and that gives the long distance caregiver some comfort in knowing that they’re a part of the care, that they’re a part of the process, and that they’re providing real hands-on help, even if they can’t be there for the day-to-day moments.
Grandparents Raising Grandchildren
Pierce: To me one of the greatest challenges for any caregiver or grandparent in particular is the relationship with their own child. Because that child, for whatever reason, and oftentimes it is negative choices, is unable to be the parent that that child, their grandchild needs them to be. So that is a real conflictual kind of feeling. They want to be supporting their child but they may be very, very disappointed in the decisions that that child of theirs has made, and they don’t want their grandchild to repeat those negative choices, so they become very, very invested, and supporting that grandchild to really be able to develop to their own potential and make wise decisions that will guide them to positive educational and employment and relational experiences. But there’s a loss for their own relationship with the child that they’ve invested in and reared, too. So I think that’s one of the biggest challenges that we hear articulated by our caregivers. And also see the pain and agony in a caregiver’s face when they can’t be perhaps connected with their own child, and instead are given this huge responsibility of rearing the grandchildren instead.
Austrom: If there is one resource in short supply, it is time. Caregivers, in particular, may find themselves taking over tasks on behalf of their loved ones just to get them done more quickly or perhaps to avoid trouble.
Bell: But taking over tasks that your loved one can do for themselves can have disastrous consequences, leading to increased dependency and depression and a loss of self esteem or functional ability.
Keers: Learned helplessness really means that the caregiver is kind of overstepping and doing things for the care recipient that the care recipient could do themselves and that they should do themselves because it adds to their dignity and it helps them continue to maintain their independence as much as they can. But it’s really challenging when you’re watching somebody struggle to do a task, to not step in and do it for them.
Lee: We lost a caregiver at one point because he had a rehab person come in to test him and the rehab person said, “He has to stay in a wheelchair. He can’t walk anymore.” And when I woke up that day and saw that he was in a wheelchair not using his walker, his walker was nowhere to be found. I was like, “Where’s your walker?” I was scared to death that if he just stopped walking even for a week that we wouldn’t be able to get him to walk again. And with changing clothes, I wanted him to be able to tie his own shoelaces or put on his belt or things like that. And these are simple things, but things I did not want him to forget. I didn’t want him to lose his strength. And so I went out and I got the walker, and the moment I did, our caregiver got up and left. And she didn’t want to have any part of it. That was a scary time for us because she made it sound like I was abusive towards her. But we had a mediator come over and ask us questions and we showed them what we were doing to help care for him, and they thought we were doing a great job. So, we passed that test. It wasn’t until two years later that he did lose his strength and wasn’t able to walk. But that’s a whole two years. If we listened to her, then he would have been in a wheelchair the whole time and not have the strength to get up and walk.
Scott: When Brandon was born my husband and I made a decision right off the bat that he was not going to be one that felt sorry for himself. So we really took our daily life and things that we knew he could do, we made sure he did. And sometimes that made life a little slower paced because it took him longer. But for instance, when it was time to pick up toys when he was younger, maybe he couldn’t pick them up and carry them up the stairs, but he could pick them up and get him to the stairs, little, one by one, and then somebody else could take them up the stairs. So he learned that his part of the task was important, too. Many times, we did try to step in and make things go quicker because you wanted to get to bed or get to work or whatever. But many times we had to tell ourselves it is time for him to do some of the stuff himself, even though it takes him a longer time. As far as my son now, Brandon, he’s 27 and a lot of the hard work and caregiving has paid off. He has graduated from college, has a job, just got married this summer, has had a service dog by his side for years, learned how to drive a van, and he’s very independent out in the community. So all my caregiving time is ended in some ways and it has this great outcome.
Scott: Well, the caregiving my parents provided to me as I was growing up really helped prepare me for where I am in life right now. One of the things we always talked about when I was growing up was thinking outside of the box. I may be able to do something that you’re able to do, but it’s just a little bit different. It may take me a little bit longer, but in the end it’s still the same results. So now, I’m probably about 90% independent, and then there are a few things that I have assistance with to kind of fill in the blanks, and those come from my wife now.
My parents really didn’t give me a lot of leeway and sliding by on a lot of things. But I found ways to get by like in school. One thing I found in school was that the girls were very willing to be helpful and probably wanted to do more for me the things that I could do on my own. So I always used to go find a girl in class that would help me do a lot of different things. In fifth grade, I had a teacher that was really kind of like my parents. He would not let me get away with things that I could do on my own. And he would be like, “Brandon, why aren’t you doing this on your own?” “Oh, it’s okay. I have Emily over there helping me out. It’s okay.” He goes, “Nope. You are doing this on your own.” So from that point forward, I picked up my game a little bit in learning how to be more independent, not just at home but also out in the community as well.
Ventresca: The best advice I think I got on this was from one of the occupational therapists, and she said, “You should let him do for himself anything that he can do.” You’ve got to be safe, I can’t let him just get up and walk off because he can’t do that. So yeah, you have to do the balance of what’s safe, and what can he do, and let him do as much as he can. He’s feeding himself, he’s dressing himself, I get the clothes for him, I give them to him and tell him to go slow. And he got a new duty just a couple of days ago, and that’s folding some clothes, he was thrilled. I didn’t give him the big old things, I gave him tea towels, and washcloths, and I brought him down, and said, “Dad, get to work,” and he was happy to do it. So I probably need to look for some more little things like that.
Keers: So as much as we can allow our family members to do what they are capable of doing with our help, we ought to let them do that. That’s part of letting them live their life, and be as independent as they can, and give them some great feelings of accomplishment.
Caine: And so it’s just not bed of roses every day, but the caregiver has got understand one thing – you don’t want your loved one to lose their sense of identity, and you don’t want to be so much of a control freak that they feel helpless. So it was always very important for me that when I was paying bills for my father, I made sure that I went over the bills with him to say, “Dad, is this correct? Does this bill look like it’s out of the normal” or whatever it is. I treat him sort of like a colleague. He’s my peer. He’s not the child I’m taking care of. So I think that’s so important in these relationships.
Know Your Limits
Austrom: Asking for help can be awkward and difficult for caregivers. But having a support team around you is essential to staying healthy and providing quality care over the long haul.
Bell: We recommend that people not wait until there is a crisis but ask for help long before you think you need it. Many times, family members and friends are willing to help, but they just don’t know what to do. So don’t be afraid to let people know what you need.
Austrom: In later videos we’ll talk more about how to develop a team. For now, we just want to introduce the subject so you can be thinking about how to engage others in your caregiving journey.
Saxman: Who’s on your team? Who are those people that are going to help you. And remembering that trying to do this by yourself is really hard. If you can pull in other people to help you, it’s going to be a big difference.
Woodsworth: A caregiver support program can end up being a wonderful support because you’re sitting with other people who not only understand what you’re going through in terms of the emotions which may be up and down. But you’re also getting an opportunity to learn from people who may have tried something differently for an issue that you’re having with your loved one or who may have more experience.
Pellman: At some level, everyone who’s caring for someone needs a break. Whether that’s an occasional break because a family member can take over, or it’s a more formalized respite arrangement such as an adult day center, those are things that are really going to allow a caregiver to have some time for themselves.
Duncans: It’s hard. We really have to make time for ourselves, for the two of us. It doesn’t happen very often. Maybe once a month, we’ll have his mom come over and sit with the kids for a couple of hours so we can go out and do stuff.
Hill: In addition to trying to find that professional outside service and competent personnel that fit your home situation, you have to surround yourself with friends and family that will be able to help where they can and where they’re comfortable. That was another thing that I had to learn how to do was I had to learn how to accept what people were able to do with the comfort level that they had.
Moyo: I think the main reason people don’t ask for help, one is a lot of times people don’t want to be a burden. And then the other thing is that I think we become so enamored in the care that we think that nobody else can care for that person better than we can. Or we don’t want to miss a moment with our loved one. Also, a lot of times caregivers are dealing with guilt, anger, frustration, and then oftentimes it’s even cases of depression. So a lot of those anxious feelings cause us not to want to seek help. They cause us to want to galvanize around this care of this person but then we again, lose sight of what’s important is that we, the caregiver themselves, needs an opportunity where they can relieve some of that stress. And some of the ways that you relieve that stress is through talking it out with other people. Talking to a professional about your feelings and how you’re feeling, be it a faith leader, or being somebody who is professionally trained in counseling, or anything of that nature.
Keers: Caregiving can be hard but it can also be really rewarding. So invite other people into that rewarding experience is something that I would encourage you to do. Whether it’s through a letter or family meeting, ask them to help you, and give them some tasks that they can do to actually provide assistance.
Austrom: We hope this brief introduction to the caregiving journey can help guide you on your path.
Bell: In the next video, we’ll discuss the key documents every caregiver needs to have and offer ideas on how to assemble and share them to reduce stress and improve communication between family members, medical staff, and other supports.
Austrom: Please join us again in our next session of CareAware.
- Caregivers may find it difficult to embrace their role.
- Each change is a loss which must be grieved
- Learn as much as you can about your loved one’s illness or disability.
- Some caregivers face unique challenges because of special circumstances (sandwich generation, long distance caregiving, grandparents raising grandchildren).
- Encourage your loved one’s independence.
- Ask for help.
- What is the farthest you have ever traveled from home?
- What is the most unusual vehicle you have ever traveled in or animal you have ridden on?
- What is the oddest thing you have ever eaten?
- Tell us about your caregiving experience. (Who is your loved one? Did caregiving start as a result of a crisis or develop slowly over time?)
- What is a loss you are grieving right now about your situation?
- What is something you can do to encourage your loved one’s independence?
- How are you at asking for help?
- Review the Caregiver Weekly Check Up
Periodically reviewing these questions may help you be more aware of what is happening in your caregiving journey and find perspective to make better decisions. Even if you don’t journal, you may find it helpful to discuss these questions with a small group, healthcare professional, or other supports.