Combating Caregiver Burnout
It's 2:16 am and I'm up watching the monitor in Reign's room after an entire day and now night of the hypoxic episodes that pulmonary fibromatosis deals. Although she's attached to her monitor and is on oxygen, she's prone to disconnect both and my brain won't stop thinking about the what if's. Although my husband is an incredible parent, he also works during the day so I stay up so that he can rest. And as the hours go by I begin wondering when the last time I washed my hair was. I scrolled through my phone and read all of the event invitations that I declined--not because I couldn't make it, but because the thought of going anywhere besides doctors appointments was utterly exhausting. My stomach growls and I struggle to remember the last thing that I ate. Then I remember that certain medications need refills so I log into the portal to order those and as the sun comes up, I realize all the things I had to do but couldn't due to caring for my child. A sense of sadness and numbness washes over me as I realize that this beautiful but stressful life is my reality and reality of so many others.
Out of love, out of obligation, maybe out of a sense of just doing what’s right, you might be one of more than 40 million adults in the U.S. taking care of an elderly, chronically ill or disabled loved one, according to the Pew Research Center. I am willing to bet that the number is actually SO much higher than recorded as many medical parents aren't seen as caregivers due to their overlapping care roles. That oversight in demographic inclusion as well as the every day inconsideration of what being a medical parent entails has left so many medical parents depressed, stressed and feeling hopeless. As a lupus patient myself, I battle physically just to get up in the morning and push past how I feel to show up for my family. But with the added tasks that being a medical mom can bring, it's no wonder that I found myself suffering from what I now know as caregiver burnout. Caregiver burnout is defined as a state of physical, emotional and mental exhaustion.
Here are a few warning signs of caregiver burnout:
Lack of energy
Sleep problems (too much or too little)
Changes in eating habits resulting in weight loss or gain
A feeling of hopelessness
Withdrawing from, or losing interest in, activities you once enjoyed
Neglecting your own physical and emotional needs
Feeling like caregiving is controlling your life
Becoming unusually impatient, irritable or argumentative with the person you’re caring for and/or with others
Anxiety about the future
Depression or mood swings
Difficulty coping with everyday things
Headaches, stomachaches, and other physical problems
Lowered resistance to illness
I can personally say that I've experienced every single one of these at one time or another over these last 4 years. Being able to quickly recognize the signs is important so that we can get the help we deserve and the healing that we truly need. But if there's a new NICU or medical mom watching, my hope for you is that you'll be proactive in seeing the signs in order to actively prevent caregiver before it's chokehold can be established.
And now that you know what to look for, here are some tips to help you pre-empt caregiver burnout:
Ask for help! Needing help doesn’t make you a bad caregiver or parent. It simply means you can’t do it alone (no one can despite what we tell ourselves and how it feels at times).
Give yourself permission to take breaks. Get out of the house (trips to Target, Starbucks or even sitting by water does it for me). Visit with friends. Pamper yourself with a massage. Take a long bath. Hide in the bathroom for 10 min (my personal favorite on a long day LOL)
Make your health PRIORITY! Don’t skip your own doctor’s appointments because you’re too busy or tired of appointment. Exercise, eat well and get enough sleep(easier said than done, I know)
Get up at least 15 minutes before everyone else and use that time to feed your soul. Sit with your coffee/tea and watch nature. Journal about your struggles and feelings. Meditate or pray to find your center before the demands of the day begin.
Make a list of all your daily activities and tasks. Delegate what others can accomplish without your guidance (and if its needed, send a voice note, pictures or whatever is needed for them to complete the task ahead of time). For example, ask your spouse or other support persons to make or sponsor dinner, run errands or help with laundry. People often want to help—take them up on it and tell them what you TRULY need.
Build community and lean on them. This one is HUGE for me! The pandemic put us in a unique predicament to have to use other means to socialize. For example, The Miracle Mamas Club was formed in the height of the pandemic through the need for community. If your child or loved one is receiving hospice or pallative care, ask your providers about local support groups. Communicating with others who are in your situation helps immensely, as does opening up and sharing your frustrations—and your joys!
If an opportunity comes along for a brief getaway for you, consider respite care for your child or loved one. If your child or loved one is a Medicaid recipient, please look into whether your state has a respite care program as most do. Many hospice programs offer short-term inpatient admissions for your loved one (meaning more than 24 hours and up to five days and nights maximum) to relieve family members or other persons who are caregivers.
I emphasized the preventative measures in bold print that my mentees and myself have seen great success in as they're the easiest to accomplish. Please remember that there is a village waiting to support you. I would like to invite you to become a part of The Miracle Mamas Club on Clubhouse where we meet weekly to talk about all of the things that parents with healthy, neurotypical children can't always relate to. Although I facilitate, I can personally atest that having this community has helped combat the loneliness and fear that comes from being a caregiver.
If no one has told you today, you are loved and appreciated. But must importantly, YOU ARE NOT ALONE!