Navigating the Swamp of Caregiving: Part Seven; Come Prepared for the Trip
Blog #9
Of all the parts of this series, this is the scariest one for me to write. Maybe scary is not the word. Perhaps embarrassing is more appropriate. It shows you where I had something all wrong, kind of. I vividly remember the support group conversation as if it was yesterday. A caregiver honestly, mildly humorously, and boldly declared, “I’m so sick of people asking me how I’m doing! Even my friends and family! I know they all mean well and they want what’s best for me but I don’t have time to take care of myself! I wish they would stop asking me what I’m doing to take care of myself!”
To my surprise, the rest of the group nodded in great approval and agreed wholeheartedly! As I tucked my “Self Care Evaluation” forms (that I was planning to hand out later in the group) under my sign-in sheet, I scooted my chair away from the table and continued to listen to them discuss this as it was a completely new concept to me. For all these years, I had no idea that asking a caregiver what they were doing to take care of themselves could have easily been upsetting them. Gulp! Now that is real! This was an ah-ha moment for me professionally!
Here’s the tricky rub. There are symptoms of caregiver burnout and they are similar to symptoms of stress and depression. According to the Cleveland Clinic, caregiver burnout symptoms can include:
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.
Irritability.
https://my.clevelandclinic.org/health/diseases/9225-caregiver-burnout
Let’s be honest. That list is pretty startling and concerning too. The older I get, the more I realize that two things that seem to oppose each other can actually exist together at the same time. I think this is one of these situations. What that caregiver said in the group is real, vulnerable and honest AND we can’t ignore the very real risks of what the stress of caregiving can physically and mentally do to a person. I suspect this is why friends, families, social workers, and support group facilitators so often ask the questions. They care and are worried about you. And sometimes, they might just see you need help before you can see it. It may be time to listen, change, and humbly resign to the fact that self care is one of the most important things you can do so you can care for your loved one in the best way possible. You can’t pour from an empty cup!
My life is seasoned with examples of well-respected professionals telling me things that I should and should not be doing. I have found that when I listen to them and trust them, my life is improved–even though I feel irritable, annoyed about learning a new behavior, and my pride hurts because I couldn’t figure out that “best behavior” on my own. When caregiver annoyance is returned with a hard truth, this MAY be one of those times when we have to lay down our sword, put our pride in our pocket, and relent. I know. It is a humbling and hard pill to swallow when someone outside of ourselves may know better what we need than we do. It takes heaps of humility and grace!
But just like swamp walkers need to take a bottle of water, sunscreen, a sun hat, bug spray, mud boots, and long sleeves with them to trek the swamps, it is just plain wise for us to be realistic about how to prepare well if we are new to dementia care or for us to wise-up a bit if we have been in the weeds of dementia care.
Maybe it IS time for some respite. Perhaps it’s time to beef up our skills in asking for help AND being OK with someone doing care a little bit differently than we do if they are offering to give us a break. Perhaps Adult Day Services might be a good idea for someone reading this. Adult Day Services are a BEAUTIFUL option for someone with dementia wanting to stay living in their home and have a safe, fun place to hang out for the day–allowing caregivers a chance to catch up on errands, a nap, tasks, appointments, etc. It may be time to talk to the neurologist about where your loved one is in the dementia journey. It’s a hard conversation, but it may be time to start considering a memory care community to help get you back to your role as wife or daughter so you can return to 8 hours of sleep a night or eating healthier meals and exercising.
It depends where you are in your journey but the one consistent thing remains true, even though it is VERY hard to hear it, you are not indestructible and the body has a strange way of stopping you if you don’t take care of it intentionally. This may be your little orange flag waving at you that it’s time to put your hand up and ask for some help or recreate the way you care for your loved one. There is no judgment in asking for help and getting self care. There is only cheering and applauding you for the win!