Welcome to CareAware Video #3—The Feelings of Caregiving

Introduction

Saxman: If they’re not taking care of themselves, they really can’t be good caregivers. It’s kind of a hard thought process to see, because a lot of people get into this mode of, “I’m it. I’m the only one who can do this. I’m the one that has to be doing this,” And what happens is, is the stress levels increase, the exhaustion increases, the frustration increases, the anger increases, and if you don’t take care of that it can get out of control.

Turo-Shields: It can also begin to take a toll on the immune system. Oftentimes caregivers find that they might get an infection, whether it’s an upper respiratory infection, or just a cold that won’t go away, because when your body is worn down, it doesn’t fight as well. It’s not a strong. So it’s really important that caregivers learn how to take care of themselves.

Hill: … a lot of times when I get to work, people wonder why I’m so absorbed into my job, and why am I so dedicated about being there. But a lot of times it’s a stress reliever for me to leave my home situation and be in the adult company of my coworkers.

Ventresca: As far as battling negative emotions of caregiving, I’m going to give you just a few that come to mind that I’ve had to deal with. Disappointment, a sense of abandonment, anger, scared, worried, overwhelmed, exhausted and tired.

Bell: Do you love roller coasters? The highs and lows, twists and turns can be exhilarating. They can also leave you sick to your stomach and holding on for dear life, just praying for it to be over. The emotions of caregiving can be like that, if you don’t recognize them for what they are and have a plan for how to deal with them.

Austrom: Caring for a loved one is especially stressful. Caregivers suffer some tremendous health consequences, and recent data suggests 40-50% of family caregivers suffer from depression themselves. In addition to depression, the long term effects of chronic care, providing that care to another adult, also leaves caregivers physically exhausted in addition to emotionally exhausted. And in addition, this is interesting, being a caregiver, recent data suggests that that alone increases the possibility of the caregiver getting dementia themselves. This is most likely due to the enormous burden, exhaustion, on physical, emotional, and cognitive health. This is a high, high burden and cost for anyone to bear.

Austrom: Hi, I’m Dr. Mary Austrom, the Westly P. Martin professor of Alzheimers disease education here at the IU 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. 

Bell: Welcome to CareAware.

Grief

Saxman: Grief starts with the moment somebody is diagnosed, regardless of the disease process, because you’ve hit a milestone. There is a loss associated with that diagnosis….

Saxman: Everything that somebody no longer can do is associated with grief. If they’ve lost their ability to manage their own toileting, that’s another loss. If they’ve lost their ability to eat on their own and you’re feeding them, that’s another loss. People don’t really equate that with grief. They don’t look at the connection that happens with that, and then it can make the grief at the end that much harder if you haven’t dealt with the grief along the way.

Woodsworth: For caregivers, I think grief can occur on many levels, and oftentimes starts before an actual death. For many people, they may be grieving the loss of a particular relationship they had. They may be grieving the loss of the ability to do many things that created their life beforehand. So in many ways, grief is an ongoing process in care giving.

Harden:The biggest emotion I see is when the caregiver has to face that their mom, it makes me want to cry thinking that, their mom and dad, or dad or aunt, is no longer that person they used to be, whether it’s mental or physical disease and they are having to adjust and grieve that, and become the parent themselves.

Bell: You know, one of the emotions caregivers feel is grief over the loss of the loved one. They’re still here but they’re not the person they were or they’re not able to do the things they once did. Sometimes that is expressed as anger over that being taken away and that’s very common.

Saxman: I think anger associated with guilt. It’s one of the five…or grief, it’s one of the five parts of grief. Anger can be one of those things, because you’re not necessarily angry at the person, often you’re angry at the disease process, or you’re angry at the losses, or you’re angry at your situation. So being able to address that, and take care of that is really important, because it’s another one of those emotions that can build up and turn on you when you least expect it.

Saxman: I have caregivers who keep little…she has a little punching bag that she keeps in her kitchen, and so whenever she’s feeling mad she goes and hits the little punching bag to release some of that. Some people do physical activity. Some people use a support group. I think you have to find the way that works for you, but you’ve got to express it. You’ve got to express it safely, because not everybody understands that anger that goes along with it. So making sure that the person you’re expressing it to knows what you do with that, and maybe just listen to you, and not really do anything about it.

Exhaustion

Austrom: And our caregivers are exhausted. Simply put, caring for a loved one 24 hours a day, seven days a week leads to physical exhaustion, also emotional exhaustion, and many times, financial exhaustion. These burdens are too much for any one family to bear.Bell: But then you establish a new normal until your loved one has another setback, and then that cycle starts again.

Turo-Shields: Stress can manifest in many ways for caregivers. It can manifest through their own level of anxiety and depression. Oftentimes they find themselves crying at the drop of a hat. They may be more irritable and grouchy themselves. Sleep is often disrupted, whether that be disruption of sleeping too much or not enough, which can also dovetail into irritability because if you’re exhausted during the day, oftentimes you’re more cranky with people.

Saxman: Exhaustion I think is one of those things that can really happen to caregivers if they don’t have a good plan in place, if they don’t even have any help, if they’re trying to do everything on their own. It can happen to you even if you do have a plan in place and have help.

Thinking about, and doing the things that you need to do to take care of yourself, are really important….If you’re exhausted you’re no good to yourself, and you’re no good to the person that you’re taking care of.

Duncan’s: …it’s not him that we’re frustrated with it’s his equipment that we’re agitated with. A lot of times it’s in the middle of the night, and water keeps getting in his tubes, and that’s what frustrates us and gets us to our breaking point. Sometimes we want to pick up that ventilator and throw it out the window because all you want to do is sleep, but you can’t because his alarms keep going off and it’s not anything that he’s doing.

Duncan’s: We call it nighttime psychological warfare. That’s really pretty much what nighttime is for us. But he’s dead asleep most of the way through it, but he has little sensor tubes, we fill the water, because he has a humidifier. Yeah, it’s the [inaudible 00:54:10], and just from the different change in the temperature will condense in there, and will send in for a false alarm, it’s not really needing anything, but it’ll keep beeping till you come downstairs, shake it off, put it back together. Go back to sleep, about half an hour, 45 minutes do it again.

Social Isolation

Bell: Another challenge for caregivers can be the social isolation. Sometimes a caregiver feels they can’t leave the house because they are afraid to leave their loved one alone. Or they don’t feel there’s someone else who can help provide them with care. And that leads to an increase sense of isolation and just being alone.

Pellman: When you’re the caregiver for someone, your world becomes very small. You start to feel like there is no one out there who understands what you’re going through. You start to feel very trapped by the caregiving situation, and that can lead to the same kinds of depression in caregivers that we see among the folks who are in need of care.

Lee: Both my brother and sister live in California. They did what they could, but just for me personally, since I was here I didn’t go out really. My social life went next to nothing.

Duncans: Well, if you find with friends would call and invite you to things they just assume you can’t go to. Sometimes it’s still nice to get asked though, you feel you can usually make arrangements, but that’s something else that fades away too. You get asked less and less because you will just automatically assume. There is a lot of times where we were like, “Well, we could have done that. We would like to have done that,” And you just…

Duncans: Like, “Oh, they all went to the Pacer game, that would have been nice to go, have a date night.” But it’s not something you get asked to do, because they just assume you can’t go.

Duncans: …When I first started out it was tough to swallow, yeah. Or, you’re always hosting things at your house, which that gets old too. It is easier being here, but you can’t expect everybody to accommodate everything you need when we go. So I would say when we would go somewhere, it’s like the circus is in town, you just show up with all of our stuff, and take over, and we’ve not gone to events over this, because there is going to be so many people there. We’re like, we almost feel guilty taking up that much space, because he takes up a lot of space. We need just a corner out in the room so he doesn’t get trampled on, or he has space to move. So we’ve not gone to certain events, with friends especially, or even family events, because we knew it would be packed, there are a lot of people. That’s one thing, too.

Strained Relationships

Austrom: Caregiving can also lead to strain in the relationships within our own families. Sometimes this is due to miscommunication, misunderstanding, among adult-child, and their parents that are caregiving or among adult siblings. This is not unusual and indeed I maintain that all families are a little dysfunctional.

Harden: How you deal with family conflicts that are internal about caring for a loved one? That is the million dollar question. There is no right or wrong answer to that, the reason being because, depending on the personalities in the family, you just have to play it by ear. Every family has dynamics where, well, not every family, but most, where one does more work, one doesn’t get along, one doesn’t communicate. I mean, you have all of those. Sometimes you can all sit down, and that works with some families. With other families it’s just best not to, and the reason why is because I find that with some family members, their self interest becomes more important. “Is there going to be an inheritance left for me if we bring in a caregiver and pay that person?” So I think the best thing is for the most responsible person to try and communicate with everyone, but if they can’t they have to step on their own, and go ahead and pursue the best interests of that loved one.

Turo-Shields: When there is a child with a disability in the home, oftentimes parents struggle, as well, striving to balance the needs of each child. Oftentimes the sibling feels neglected because the child with a disability, or the sick kid in the family, gets all the attention, has to go to all the appointments. So again, parents are pulled in two different directions and oftentimes just need a heightened sense of awareness for the child who is normally developing. Has activities, has sporting events, has musical events, has a desire to have friends over, do sleepovers, that sort of thing. Again, how to coordinate all of those becomes a challenge and a negotiation.

Lewis: Most of the fractures I see or hear about in my office, come as a result of poor communication. Decisions are being made, and you’re not engaging the whole family. I’m very lucky myself. I’m one of six kids, and as my mom was on her final journey, we were all conference calling. We’re spread throughout the country, but we communicated all the time and it made such a difference. I often tell my own clients about my experiences because it made a huge difference in, not only our family, but in the type of dying process my mom had. I know she felt comforted by the fact that we were all on board. We were there. We were talking to one another.

Lee: I would, not vent, but I would talk a lot about what was going on with that and with the situation on Facebook, and my brother and sister, my sister especially, got very angry about that, and just didn’t, thought all that should be private and I shouldn’t be sharing anything about Dad on Facebook ….That was my support group. I didn’t have time to go out to a support group or anything like that, but my friends I shared that information with, that was my support group. So that caused tension between us that we’ve since worked through I think.

Ventresca: So those doubts and things inside of me where I’m dealing with my own emotional internal things, let it go. Just do the best you can. When other people disappoint you, this is my latest thing. I’ve only got so much energy to deal with what’s going on, and if somebody disappoints me or upsets me, I don’t have the energy to get upset about it. I mean, I’m human. I go, “Oh boy, I’m really upset about this,” And then I go, “I’ve got to move past this, I can’t.” I think I have to just realize that people help as they can and no one means any lack of help, they just aren’t in the space to do things sometimes.

Guilt

Bell: And many times a caregiver feels guilt. They resent being place in a role of being a caregiver. And they’ll feel guilty about that. Or they feel they’re not doing enough. And they feel guilty about that. And it’s important to realize that guilt doesn’t have to be part of a conversation about being a caregiver.

Turo-Shields: I’ve long talked with clients about the ambivalent feelings that go along with caregiving. Clients oftentimes feel guilty that they have those, what are considered, negative emotions. I talk with them about that caregiving is really the balance between compassion and resentment. Compassion for your loved one who has, perhaps, a chronic or disabling condition that they just can’t help, it’s not their fault and yet the resentment of, “This isn’t what I signed up for. This isn’t what I was expecting. This isn’t the way it was supposed to be.”

Turo-Shields: Recognizing that there’s that ebb and flow between emotions gives them permission, and gives room for all of those emotions as well as the guilt of, “I haven’t done enough,” or “I can’t do enough,” Or again the resentment or bitterness of, sometimes not towards their loved one, but sometimes towards their relatives who they believe should be doing more. “Why isn’t she stepping up more? Why isn’t he doing more?” Navigating all of those becomes important as well as just acknowledging them and validating them within themselves.

Harden: Also an emotion you go through, while you may need to do those things too, is guilt. Because at the same time you’re feeling all these emotions, you’re angry. You’re angry because they’re not like they used to. You’re angry because you have to do all of this, and so there’s this guilt for even feeling like that. So you have anger, resentment and then you have love and emotion and you just feel crazy.

Saxman: There are many people who feel guilty if they take a break, if they go have lunch with a friend, or if they go take a weekend away. Those are not things to be guilty about. Those are things to be proud of. It’s hard to reframe those, because what you feel like is, “I’m the only one who can take care of my loved one. I’m the only one who can do this.” You can do it, but it takes help, and so you can get bogged down in the guilt piece of it too.

Saxman: I think it also, especially if you’ve got to play somebody in long term care, if it gets to that point where something happens, there is some crisis that happens, or the caregiving just becomes impossible at home, there is a ton of guilt associated with that piece of it. Some people make that promise that they’re going to take care of somebody at home, and we may not be able to keep that promise especially if something, some crisis happens or something bad happens.

Austrom: Caregiving does not have to be all negative. We’ve learned that many caregivers do quite well in their caregiving role. And when we looked for what is it, what’s the recipe for positive outcomes, we found that having a meaning to our roles, looking forward to our role of caregiving, and waking up each day with a positive attitude, tends to result in a much more positive outcome of caregiving.

Turo-Shields:… it’s important to recognize that caregivers are making a choice. I find that some step into this role out of duty, and some step into the role out of devotion, and that can be a very different feeling for them. So having them understand that a) this is a choice, and your faith can guide you in how you want to walk this path with your loved one. (pg 15-16)

Lee: I consider myself just so fortunate to be able to do what I did, and to be with him the last few days, the last two years… three days before he died, he ended up having one of his last lucid moments, where we were all at the dinner table, and all of a sudden mom gave him a kiss and he perked up, he said, “Wow, you are a good kisser.” And she said, “Well, thank you so are you.” He said, “Well, I know I am.” And I was just so glad I got to be there for that moment, just with him, that sparkle in his eye, and just seeing the old dad that I remember. Just during that moment, and that’s what you hold onto, that’s what you do it for, just because you love him, you just want to do anything you can for him.

Mimi: That’s the fulfilling part for me, is giving back to my parents. What they gave to all of us. And they were selfless, they were. …

Mimi: This is what Rom Doss says, “In the end, we’re all just walking each other home. ” And that’s what I think caregiving is all about.

Next Video

Bell: In the next video, we’ll discuss the importance of respite and preventative self-care to help reduce stress.

Austrom: Please join us again, in our next session of CareAware

• What is your favorite ride at an amusement park?
• Who is your favorite superhero and why?
• What is one thing you really like about yourself?

• What negative emotions do you struggle with related to caregiving?
• How is stress affecting you?
• What point in the video was most meaningful to you?
• What do you find meaningful about your role as a caregiver?
• What helps you maintain a positive focus?
• Review the Caregiver Weekly Check Up