Mom never used to be this way. She used to be the vibrant force that kept the family together. Now she’s in a memory care facility, and as I go in every day, I wonder if she’ll remember me. It’s a scary place – for me and for her. I feel so out of my element and unprepared. I don’t know what will happen next or how things can get better – even though I know, in my heart of hearts, this is as good as it gets, and even it will only last so long.
The days and weeks drag on to months and years, and I wake up to realize that I resent going to the facility. It feels like I’m stuck, like my life is on hold. It feels like – and I hesitate to say it – I’m waiting on her to die for me to get my life back. In a flash, I feel shame and guilt wash over me. How could I think that about her? What kind of monster am I?
This isn’t my story, but it’s a story that plays out in every city and town, where good, honest, and loving children are faced with caring for their elder parent. Like a Hollywood remake, the story also plays out for parents who have special needs children, the spouse who cares for someone who brought light to their lives, and for those who have chosen to bring troubled children and adults into their lives to care for them. It feels like burnout. It feels like there’s nothing left to give.
Burnout has been most frequently described as exhaustion, cynicism, and inefficacy. However, of all of these, inefficacy is the most challenging. It’s the point of losing hope and feeling like you have no control. Everyone experiences periods of exhaustion, and it’s possible to experience exhaustion at some of the highest points of our life but feeling ineffective can really bring us down.
We can be a caregiver when we know that things are going to get better, but, more frequently, we don’t know the ending – or we know the ending won’t be good. If we define our progress through the lens of recovery, we know that we won’t be successful. However, if we redefine our service as an opportunity to reduce the suffering, we have a chance of being successful.
Compassion is seeing the suffering of another and trying to do something about it. When we’re entering the role of the caregiver, that’s what we’re doing. We’re intentionally deciding to be compassionate and try to make the world a better place, even when it doesn’t seem like we make it much better or for many people. Our expectations of how compassionate we “should” be or how much of an impact we “ought to” make get in the way of us feeling good about what we are doing and accomplishing.
Compassion isn’t absolute nor without end. Compassion is a decision to use our capacity to help others, but that capacity has limits, and that’s why it’s important to get relief.
Cynicism seeps in when we’re unable to cope with the reality we find ourselves in. We can’t change the ultimate outcomes, and we don’t feel like we’re individually capable of carrying the load. The solution is to ask for help. Maybe there’s someone who can take one weekend a month of load off your plate – or even someone who can help for a few hours to take an uninterrupted bath, go to a store without fear, or one of the thousands of other things that can provide a short reprieve. This space can allow you to see that what you’re doing is possible, and you can continue.
Caregivers who experience exhaustion and cynicism need to know that this doesn’t make them a bad person. The caregivers around you need your support. Caregivers aren’t always good at asking for help and have resigned themselves to an unhealthy level of burden for far too long.
If you’re a caregiver who is struggling, ask for help to get some time off. If you know a caregiver who’s struggling, don’t wait for them to ask. See if there’s a way that you can help.