Caregivers and Burnout
Caregivers need to be care-receivers, too. There is a huge issue of caregivers and burnout. For one, caregiving is a relatively thankless job. We don’t have institutions founded or buildings erected for caregivers. We do this for patients sometimes, but the caregiver is such an important piece of that puzzle, and they often get forgotten.
Sometimes that’s self-generated that we as caregivers feel like “It’s not about us. It’s about our patient, our person, our friend…” and so we participate in diminishing ourselves as a way of showing how much we care. Ultimately, that doesn’t work very well, and you burn out. Then there’s not much of you to offer. I see this again and again and again. Even if your goals and aspirations as a caregiver are the most optimistic you can imagine, you will still need to take care of yourself too because you’re a human being, you’re not a machine.
If you’re empty, you have nothing to give. You need to care for yourself. It’s hugely important.
Oftentimes your priority for your own care falls onto the back burner. This is where caregiving can become dangerous and bad for your health. Part of your job is taking good care of yourself, too. It’s not a selfish thing and is actually quite selfless since the well-being of someone else depends on your well-being.
The last thing to point out here is the truth that how well I care for myself as a caregiver is directly related to how well my person will feel. There is this idea that the person and myself are separate. It’s not always clear that we’re spinning around each other and receiving and giving all the time. Self-care is also a way for a caregiver to realize they are part of a relationship and they have needs in that relationship too.
Helping Caregivers Get Help for Themselves
A lot of these situations are practically impossible. You’re often left simply making the best decision possible, or at least the least-hard decision. You’re very often left saying, “Well, did we do what we could do?” It may be that you can say and do all the right things, and your answer is just not going to be what you want.
Caregivers can do their part, but no matter what, especially in the setting of chronic and terminal illness, someone’s not necessarily going to get better. It’s hard to know how to gauge success or failure as a caregiver, when things are going downhill, no matter what you do. This is one of the things that is so difficult as a caregiver. There is no set gauge of when you’ve done enough, and you’re left asking, “Did I do what I could do?” This means oftentimes you have to be your own judge and jury. You have to say, “There is no external marker for success.”
If you have a conversation with a caregiver and say, “I know you’re tough as nails, etc. but I also know that this is a dangerous sport, caregiving. I’m really worried about you. And I’m really worried about your health, in part because if you go down, then, your person is going to have no one to care for them.”
Have that direct conversation trying to implore them, trying to focus on their devotion as a caregiver since maybe their devotion as a caregiver is the lever.
Sometimes things just have to get harder first. All the words might not get you there, but it may be that it needs to get a little bit worse before they’ll accept help.
One trick is being at the ready. When someone finally cracks and they make a comment, like, “I’m not sure how this is going,” or, “I’m not sure how much longer I can keep this up,” sometimes, especially in a setting of chronic terminal illness, people will often crack that window, so be at the ready when/if that happens. Then you can step through and say, “I’m so glad you said that, you know, there are ways to make this easier, we can get help, etc.”
Keeping an eye out for those opportunities is important. Also keeping an eye out for when things get worse or some event such as a hospitalization or other serious issue arises as a warning shot over the bow that jars them into helping them understand that this is very real. Unfortunately, things may just need to get harder first before they see reality.
Another idea is that sometimes it’s better to ask forgiveness than seek permission. Find a way to get someone involved in hospice if possible. Have other friends and family start showing up pretending to make a social call and help share the load. Sometimes it can be showing up and playing cards and just being around. Spontaneous fun can even happen this way.
Family dynamics are tough and I’ll hear from fellow clinicians that they’ve tried to talk to a family one zillion times about a situation. I’ve heard this refrain from many angles and then on the zillionth-and-first time you try to have that conversation or a fresh face comes in and reopens the conversation all of a sudden, the door opens. On some level, it is a sort of chipping away, exposing them to this idea, getting familiar with the idea of getting help and at some point, you might just break through, this just often takes time.