What exactly is extreme caregiving? I suppose you could argue that we are all caregivers in a sense. But, extreme caregiving involves caring for someone with exceptional needs. Parents who support children (including adult children) with special needs, or adults who support parents with dementia are some examples. Extreme caregiving comes with situations and stressors that are above and beyond what is typical for most.
My youngest child has multiple diagnoses and has struggled for several years. So, from my personal experience I can assure you, extreme caregiving sucks! Caring for a child with special needs or a parent with dementia, is all hard. Demands on your time with extra appointments, or phone calls interrupting your work day. Spending so much energy worrying about someone you love so deeply who is struggling so terribly. It.All.Sucks!
I’ve learned from my experiences that caregiver burnout is a very real thing. With extreme caregiving this risk is almost a certainty. But, there are ways you can combat burnout. It helped me find moments of hope and enjoyment in my extreme caregiving journey.
Set Your Priorities
I always said my family comes first, but I am just as passionate about my career as a music therapist. As my extreme caregiving demands grew, I knew I was struggling to balance both successfully. So, I made the difficult choice to step back from my career. I hired an employee to take over my client caseload. It was hard to sit back and watch colleagues moving forward in their careers. So I promised myself, “not forever, just for right now”.
By reducing commitments on my plate, my stress dropped immediately and significantly. I learned to say no, so I could control where I focused by energy. Some extreme caregivers might not want or be able to cut back or stop working. What in your life can you delegate or remove all together? Could you hire a housekeeper, find friends or family to help with cooking or laundry, or volunteer a little less? And remember it is not forever, just for right now.
Find Your Allies
There is a saying “when things get tough, you find out who your real friends are”. Boy, can I confirm that extreme caregiving puts your relationships to the test. People who don’t understand your challenges will find it difficult to know what to say, or how they can help.
I found myself pulling away from everyone when times were difficult. I was vulnerable and didn’t want to open myself up for judgement, criticism, or unhelpful comments. It was very isolating. But, pulling back gave me control over who I allowed into my circle of allies. By helping my closest friends and family members better understand my situation, they were able to offer support. I also found allies through support groups and on Facebook. I cannot describe the sense of relief and peace that I found from meeting someone with the same struggles and challenges.
I’m not talking about money. I’m talking about dedicating time for things that you find fulfilling. I started paying myself when I was close to rock bottom. My quality of life and feelings of wellbeing improved dramatically once I started.
What will work for a person can look different depending what fulfills them. I made girls night (with some wine of course) a priority. Time with close girlfriends was worth giving up a couple hours of sleep once a week. This was time for me to socialize, vent, and focus on things other than my troubles.
Paying yourself might include listening to music, having a massage, reading a book, going to a yoga class, or seeing a therapist. The list is limitless. First, you need to figure out what brings you great enjoyment. Then, the trick is to make sure you find time to do it every week. This will make it easier to find enjoyment in your extreme caregiving journey.
Hang In There
I remember some of my allies telling me to hang in there, that things would get better. I desperately wanted to believe them, but it seemed impossible when we were in the thick of things. Although our life is still challenging and far from typical, I am happy to confirm that they were right. Things are getting better. If you are struggling right now, hang in there. I know things will get better for you too!
By Heidi Flynn