Transcription:
Caregiver Burnout: When & How to Ask for Help

Melanie Cole (Host): A caregiver can be one of the most, if not the most important roles in a patient’s life, but it can take a toll on the person caring for that ill loved one. So, what does a cancer caregiver to do when they need a little bit of extra help? My guest today is Ann Kansier. She’s the Care Management Assistant Manager at Bryan Health. Ann, let’s just start with what a cancer caregiver does or is expected to do when one of their loved ones is going through cancer treatments?

Ann Kansier, LCSW (Guest): Well, for people that are asked to be a caregiver, most of the time, this happens without any warning. Often becoming a caregiver is needed when things are already stressful enough, such as after an accident or medical event or after hearing a serious diagnosis. At the time, the caregiver steps into the role, many people feel they have no other choice; that it’s their role and even their duty to take on the caregiver role. So, a lot of times, people will put further expectations on themselves and further stress on themselves without much time to prepare for such a major change and with so many strong expectations; it’s no wonder people really feel scared and guilty about asking for help.

Host: What does it feel like to be a caregiver? I have done it before and I know you work with many people that are taking on this really important, difficult role. What can they expect it to feel like?

Ann: Well, very, very stressful. As a caregiver, it’s really important to find ways to manage that stress, because you have your own life as well as now the additional demands of caregiving and providing care for another person, often someone that you care very much about. If you don’t take care of the stress; the caregiver may find that the stress starts to control them. They are so busy taking care of someone else, they forget to take care of their own needs and their health can suffer or their work, their emotional wellbeing.

One of the ways to help control that is to set limits on what you can and what you can’t do. Because otherwise, it’s easy to get caught up in all the numerous appointments, all the treatments, the errands, the medications. You may have your own illnesses to deal with and you are trying to help with someone else’s. It’s a lot of hard work. And it’s not unusual to feel overwhelmed when that happens. It happens – that feeling happens to everyone, that overwhelming sense of where do I go from here. It’s okay for a caregiver to tell themselves that they have limits. That there are limits to what they can do and then be firm in sticking to those limits when they can’t do something. And they also have to work to remain supportive of themselves, to remain on their own side and not to judge themselves or criticize themselves unnecessarily. And then you have to find ways to also reduce your stress and relax and then make yourself find a time to do it; which I’m sure is really, really difficult.

Host: Well, it certainly is. Are there some red flags Ann, that people could identify if they are feeling caregiver burnout and they may feel guilty about asking for help when those red flags are noticed? Tell us a little bit about some of the symptoms that they might experience and why they should not feel guilty asking for help if they notice these things in themselves.

Ann: Well, some of the things that people often report as caregivers is the feeling of exhaustion, that sleep does not relieve. So, physical exhaustion and also trouble sleeping. You are so tired and so stressed that your brain doesn’t want to shut off. People also report disturbances with appetite, loss of appetite. Depression is a common feeling that people have. And then people feel guilty that they are not living up to whatever role they felt they were taking on.

Sometimes people have rules in their own lives of what they should be and or compare themselves to other people that they’ve heard somehow took care of their loved one so perfectly or so selflessly. People may find that they’re letting someone down that they care about, something that none of us ever likes to do. People may feel scared that there’s no where to turn for help and they don’t know what will happen to that person they are caring for if they cannot continue in their role. It can feel really helpless. And then asking for help from others can be difficult at any time in life. Most people are raised to be really self-sufficient and when you face a challenge in life; we usually tell ourselves we can work harder, we can dig down deeper, we can burn the candle at both ends and then we’ll overcome those obstacles. But the challenges that face a caregiver are things that can’t be overcome by just hard work or putting in more hours. Just trying harder to fulfill the role alone, can actually increase your mental and physical exhaustion. It can lead to burnout for them as a caregiver and problems for their loved one.

Host: So, what tips do you have regarding how and who to ask for help, what resources are out there? Because caregivers might feel alone on an island caring for this ill person. How do they know who to ask for help?

Ann: Well, a lot of times, in today’s world, we are at quite some distance from our extended family. Society used to have more connections as far as family living closer and often in the same community or within a few blocks, but if that is not available, or if the family that you have are not available to help you; caregivers often can identify through their own previous activities or groups that they might have been a part of in the past, like if they are active in a church or if they belong to a book club; they have friends there or a hobby group, sometimes school activities if they had younger children and they had made friends in the PEO or the PTO, parents’ clubs or civic groups that people belong to.

And then also luckily in today’s world, if people are able to use the computer; there are a lot of resources online for the specific diagnosis that the patient may have what federal or state websites might be available. Then also, resources state or local for aging office if the person is over a certain age or disability offices that will have resources. Sometimes it’s as easy as a phone call. Sometimes it’s reaching out and being able to say you know I am getting kind of organized with my caregiving, I made a list of the things that I need to do everyday and these are some of the things I could use help with. Do you think that might be something that you could help me with?

Now that always sounds like an easy thing, right, I mean when you write it in a paragraph, it sounds really easy. But it can be very difficult to ask for help. Asking for help when it’s needed, you have to think of it as an investment in the care of your loved one because if you burn yourself out; the loved one that you are trying to care for will not have anyone to provide the care. So, you can’t let yourself get emotionally or physically exhausted. You have to understand that asking for help is a lifeline for both you and the patient and that care doesn’t have to be whatever you are considering perfect to be acceptable to the patient or the person that you are caring for.

Host: And as the stress builds up when you are caring for someone you love Ann, what if the caregiver has other responsibilities, a job, children, aging parents, anything along those lines? Give us some of your best advice as we wrap up today about dealing with that stress, about being a loving cancer caregiver, but loving yourself and caring for yourself because you cannot care for the ones you love unless you put your own mask on first.

Ann: That’s exactly right. We have found in working with people over caregiving over a period of time that people have to make some changes to be able to be a long-term caregiver, to be able to understand stress when it’s occurring and how to deal with it. We do have a lot of ideas for helping reduce the stress. One of those is keeping a list of friends or family members that you can talk to for things other than the caregiving. Maintaining a connection with people about the interests and things that you had apart from when you started caregiving. It’s important to remember there is also still a world going on outside and you are still part of that even though you have additional caregiving right now.

Try to control the things that you truly can control when things feel outside of your control. So, things like making sure you get enough hours of sleep every night, if you can. Trying to eat a healthy diet, well-balanced meals and eating a little something even when you are not feeling terribly hungry. Then also making sure you are drinking enough, hydrating yourself with water every day. Keeping track of your own appointments, your medical appointments, your yearly annual exam, any scheduled care needs, vaccinations. Don’t put off your dental cleanings, your doctor’s physical and talk with the primary care provider that you have about your physical and emotional demands that have changed.

We also encourage people to avoid relying on smoking, on drinking alcohol to excess, to eat junk food to handle the stress of caregiving. Those habits can create additional problems and those problems can prevent you from continuing to be a good caregiver. And then one thing we also say is try to plan a regular break from caregiving if possible. You may not physically be able to leave the situation but able to plan to take a break, sometime during the day, maybe to listen to a few minutes of relaxing music, read from a book that relaxes you, take a break to call a friend, take a short walk if that’s possible to get outside. At least fifteen to thirty minutes a day could truly help reduce the stress of providing care.

And then if possible,try and keep up with any former hobbies or interests is also an idea some people have found helpful. It helps you use another part of your brain which can relax the other stressful parts that are being used as a caregiver. Some people like to do crosswords or a jigsaw puzzle, Sudoku can really make you concentrate on something else or a word search puzzle. Other people like to spend time in prayer or reading the Bible or talking with their spiritual advisor. There are also a lot of programs on TV or on the radio people like to listen to. If you can sit back, take a few minutes or even sit in silence, close your eyes. Some people have told me yeah if I do that, I’ll fall asleep and that’s possible too and ten minutes of a nap might be alright too.

Meditation has been found to help a lot of people, that’s another idea to reduce stress. There are applications on the phone that people can add to their smartphones if they are using that. One of them is called Ten Percent Happier and another that I’ve heard about recently is called Calm, C-A-L-M. Those have been proven to show they can reduce people’s blood pressure over the short-term and possibly over the long-term. As well as, the things that I have used before the progressive relaxation techniques to help regular breathing to reduce stress, tightening and releasing the different muscles in the body to help relieve stress. Those are all techniques that are very popular or reaching out for online again, for caregivers’ chat rooms are very popular or telephone support programs to get in touch with volunteers who might have similar experiences as caregivers.

One of those that we used before a lot is the www.lls.org/chat. And then also looking in your local newspaper for support groups in the area. And then getting a helper to come and sit with your loved one so you can get to that support group and look forward to hearing what other people are doing to help cope. And like you said, you have to put on your mask first, like on the airlines, they tell you how to adjust your oxygen before you try to help someone else. And another saying that is very supportive is you cannot pour from an empty cup. So, it is important for the caregiver to take steps to refill themselves each day so that they have something that they can pour out to help someone else.

Host: Beautifully put Ann, and so, so true and caregivers listening, she just gave you some really amazing tips, things that you can do to avoid caregiver burnout or recognize it in yourself and where and when it’s important to seek help. So, such important information. Thank you again, Ann, for joining us. If you’d like to hear more Bryan Health podcasts please go to  bryanhealth.org/podcasts, that’s bryanhealth.org/podcasts. I’m Melanie Cole. Thanks so much for listening.