I was diagnosed with heart failure at 35. As someone who was previously very active and definitely independent, the fatigue, lightheadedness, and other (high burden) symptoms of heart failure have been tough because they have required me to depend on others in a way that I have not been accustomed to. This led me to consider, what does caregiver fatigue look like? How can I avoid it?
Support and burden
I am 38 and in a relationship with a caring and hardworking individual, but I worry about burning him out. My family as well! It is tough feeling like a burden for those around you yet knowing you truly need help and can no longer do it all on your own. My support system is so supportive, but I am constantly on the lookout for signs that those around me may be cracking. I'm also thinking about what I can do.
In my experience, it all starts with communication. You have to be able and willing to talk about this openly and candidly. I think sometimes it can feel awkward to bring it up to the patient because it feels like you are being a jerk when in reality the patient may be even more empathetic because they appreciate the help AND can understand what it is like to struggle.
Personally, I ask questions, check-in occasionally, encourage him to be candid, etc. I have also done the work on myself too, so we can have tough conversations because I know my own self-worth.
So what does caregiver burnout look like? According to the Cleveland Clinic, it often presents in the following ways:1
- Withdrawal from friends, family, and other loved ones
- Loss of interest in activities previously enjoyed
- Feeling blue, irritable, hopeless, and helpless
- Changes in appetite, weight, or both
- Changes in sleep patterns
- Getting sick more often
- Feelings of wanting to hurt yourself or the person for whom you are caring
- Emotional and physical exhaustion
Leaning on others
What can be done to prevent this? From the patient perspective, I would say it's important to encourage communication about how people are feeling so the patient can lean on others when it's needed. Not everyone has multiple people who can help them out, and I am particularly lucky that I do not have aging parents yet that require caregiving themselves.
However, it might be helpful to think about friends, family, or faith communities who could step in if/when your primarily support system needs a break. My mom's close friends have certainly helped me out from time to time as well.
Things they enjoy
I also encourage those around me to take time out for things that they enjoy, and I try to learn and be as involved as I can. Depending on what people are interested in and how physically demanding the activity is, you may not be able to participate. That said, most people enjoy talking about what they enjoy so at the very least you can learn about what is important to those around you!
On the right track
As it turns out I have been on the right track! Experts recommend caregivers getting support, learning about the patient's medical condition, (I concur 200%), and taking time out for themselves.2 Taking time out doesn't have to be a huge time commitment either. Perhaps it's a short walk, a few minutes of breathing exercises, a conversation with a close friend, etc. The idea is that nobody can hold a glass of water up forever; sometimes we all just need a break.
I hope these tips help!
Does your heart failure impact you financially?